ADVICE from leakers

[Moderator #3]

Use this thread to give advice to new and experienced Leakers.

What works for you?
What doesn't work for you?

[LauraL840]

I'd asked for a new 'sticky' place for people to post their advice where people can come and find out from OTHER LEAKERS what they've tried, what worked for them, what didn't, give advice, etc regarding treatment, navigating through the medical community etc.

So many people here have great advice that they've shared over the months, and it's valuable information that's almost impossible to 'dig' up when someone new comes along asking those 'age old' questions about things like:

What imaging studies....
Limitations following EBP....
Signs and symptoms ...
Medications ...
Treatments tried ...
Best doctors and locations ...
ETC ETC ETC Et al

For those who've 'been there done that' .... well, now is your chance to 'write the book' so that we can collaboratively help someone new avoid some of those things 'we wish we knew'!

Thanks to everyone in advance for all you're about to say! :D

[LauraL840]

HA - headache
SIH - spontaneous intracranial hypotension
PDPH - post dural puncture headache
LP - lumbar puncture
EBP - epidural blood patch
ICH - intra-cranial hypotension
CSF - cerebrospinal fluid
MRI - magnetic resonance imaging
CT - computed tomography
Gd - gadolinium (contrast agent used in MRI)
RC - Radioisotope Cisternography

?? any more ??

[LauraL840]

I'll start .... (LOL, imagine that)

I had an email correspondence recently about the 'medical community and prescription medications (headache preventatives, pain medication, etc)' which is what really sparked the idea of an 'advice sticky' thread. Primarily because it's 'your' job as the patient to be informed; not too many doctors will do that these days and unfortunately it may be your job as the patient to EDUCATE your doctor!

So here's my 'take' on that topic:

I think you are going to find that MOST, if not all, neurologists are going to want to 'try' several medications before they give up the notion that some medication is going to 'fix' this problem! It's unfortunate, but that is the mindset of medicine. It's equally unfortunate and frustrating because medication will NOT EVER FIX a csf leak!

Here's the problem:
... you have a NEUROLOGICAL problem that is treated by ANESTHESIA (or neurosurgery). All neurology knows to do (and can do) is a neuro workup, order imaging studies, diagnose your leak ... and woah-ho, WRITE a script ... Oh, and they can refer you too!

Regarding whether to TAKE prescription medication; all you can do is educate them and say something like, "None of the (extensive) studies published regarding SIH (Spontaneous Intracranial Hypotension), PDPH (Post Dural Puncture Headache), Intracranial Hypotension, (or just call it a plain 'ole csf leak) show any benefits for the use of prescription medications in either the treatment of csf leaks or the subsequent symptoms (headache, vomiting, nausea, photophobia, etc) caused by the csf leak. Published studies do indicate that the following treatments are effective ... (from least invasive to most invasive, and you can find the 'list' of appropriate treatments in this article - http://www.treatment-options.com/art...icle&KeyWords= , or in this article http://www.aans.org/education/journa...3/15-6-cp2.pdf )"

You can try to appeal to them with reasonably, EDUCATED logic and ask that they NOT prescribe (useless) medications that will most likely make you feel worse, and instead try treatments that have 'some' proven success. You really DO want to stay away from medications and combinations of medications that have a large potential for rebound headache! Rebound headaches can significantly change the 'symptom-ology' of the headache (HA) ... in my husband's case, his HA became less positional in nature, very severe, and really didn't appear to be a csf leak when we began pursuing why he still had a headache so many months after his lumbar puncture.

My best advice..... EDUCATE yourself first, your doctor(s) second.

Print off TWO copies of all the research articles pertaining to your specific type of leak, put together a notebook for you and another for the doctor. Make them read the articles and DISCUSS with you what you find. Learn all you can about different imaging, what's the 'best', what's 'invasive' to the dura, etc.

We've had to educate our doctors. We've had to be transparent about how difficult it is to ask doctors (who have YEARS of education, experience, and even TEACH at a medical university) to give more weight and consideration to our research and to specific patient history, patient response, etc. than to their 'ego' (I didn't put it quite like that, but I think you know what I mean).

[PainInTheNeck]

The most important things I have learned are:

Get THEE to a bigger teaching type hospital. For me that meant Indianapolis.

I would personally advise everyone to contact an Anestesiologist/Pain Specialist for a consultation. They are(in my opinion) the experts in FIXING YOUR LEAK!!!!

I would also INSIST that the Blood Patch be performed with Fleuro(radiology guided). Why on earth should anyone risk another hole because they ended up having an unsuccessful puncture????

Pay VERY close attention to any new symptomolgy after taking a new medicine. In my case it was amitriptyline that I started taking the day after the blood patch. I had months of head and spinal pressure that I thought was the leak coming back but was from the amitriptyline. Topomax caused me severe intestinal side effects.

Even after a successful blood patch...you will not be well right away. It will more likely be the first day you will feel almost normal but then the symptoms will return(probably not as bad)and then take 10 days to 3 weeks before you will feel you are functioning at a near normal level. Then it may still take a month or a few months until you feel totally normal.

SO......be patient with yourself and your body. Take it easy for a month after the blood patch. No lifting, stretching, bending and get down on back immediately when head pressure even begins. A few of the folks here have lived through the worst of the worst with their leak(s) but the odds are very much in your favor you will not join that club.(heartfelt hugs to those who are in that club).

[pml]

Hello -
I am brand new to this site and am just about in tears because it is so incredible to find other people with the same awful thing I have had for the past year (since September 2006). I've had a ton of diagnostics, from MRI, to lumbar puncture, to CT myelogram, to indium 111 cisternography. We all agree that I have a CSF leak, but we cannot find exactly where the tear/leak is. The three days of indium 111 films showed that CSF never reached the convexities of the brain, but they could not see where it is leaking. I've had two epidural blood patches, without success - but I have never stayed lying down flat for more than three days afterward. (Is it worth a third one followed by a longer stay in bed???) My neurologist (who is apparently a rare wonderful being in the realm of neurologists and works closely with an anesthesiologist/pain specialist) would like to do one last tesxt - an MRI of my cervical and thoracic spine with contrast (galdinium???? is that the right word???) in order to try and find the tear/leak. Then, we'd do one last epidural blood patch at the site of the leak (instead of lumbar) and try keeping me down in bed for a couple of weeks rather than a couple of days. The problem is that after a year of this mess, my insurance company is balking and doesn't want to pay for this MRI...but if there's a chance it will show us something, I'd be willing to take out a loan to pay for it. Anyone have any experience with this??? My doctor's other suggestion is that I take a month off from work and do flat bedrest for a full month (the "old fashioned" treatment as she says).
I am open to any and all advice because this pain has got to end!!
Thanks, and I'll over whatever help i can out of my experience, to anyone, in return!!!
Pamela

[dagaz]

I've been leaking (crainial) since a tumor removal in '93. I have had several attempted repairs too many to count including several bi-frontal craniotomies, craniofacialcraniotomy, v.p. shunts many repairs ... like I said to many too many to count. I am on Hydromorph contin, T-3's for breakthrough pain. I lay flat on my stomach to try to level out as I call it. I am starting to get a different pain as well as the usual ..I have pain in the back of my head... I wonder if it's from my shunt?

Still leaking, I don't think it will ever stop however I try to live my life as normal as possible.

Dagaz

[dagaz]

To answer your question about laying flat in bed for weeks rather than days I say do it! No Bending, No lifting no straining to use the washroom ect.... I'd do anything to go back and for one not have the first surgery that caused the leak and two... do every thing to try and heal the leak(s) I have....

dagaz

[Achilles1]

My neurologist is Dr. Todd Schwedt at Barnes-Jewish in St. Louis. He is absolutely amazing. When I first struggled into his office in July '06, he identified my problem immediately. The doctors in my hometown had been unable to diagnose it for 3 months. They had tried every kind of pill and spray to ease the pain, but, of course, nothing worked. My neuro surgeon was Dr. Keith Rich. Also an amazing doctor. I just happened to get lucky that he was on call the night I went in for emergency surgery. I highly recommend both of these super doctors to anyone in the St. Louis region.

Chris

[cacoelho]

Well after lying here for almost two months I think the greatest advice I can think of is to be patient after a blood patch and give yourself loads of time( not days, weeks) to recover and lie still. I jumped up 3 days after my 1st patch because I felt so great. Big mistake, I was back at the hospital the next day. Ah well, live & learn.
Alice

[cacoelho]

Oh and coffee works like magic for me ;o)

[LauraL840]

This is more 'advice' for using this board ....

If you are new to the site and think you have a leak or know you have a leak, PLEASE go to this thread and add your information!

It's EXTREMELY helpful for all of us to be able to see who has what, has done what, has tried what, has achieved healing, has had any success ..... etc

Leaker Roll Call (http://brain.hastypastry.net/forums/showthread.php?t=14514)

[wobbles]

Hi everyone!

Just wanted to let everyone know that I have found chiropractic care, especially with cranial/sacral adjustments especially helpful in dealing with my csf leak.

There are several Upledger Cranial/Sacral techniques that can actually raise the CSF pressure. Unfortunately in most cases the reprieve is only temporary...but I find that getting that 12 hour - 2 day break in pain can really help with my coping skills!

I was also able to "abort" a recurrence of symptoms last year with an adjustment.cranial sacral work and bed rest for a week. This latest recurrence wasn't "fixed" by this protocol but I have suffered less than with the first episode. Whether that is attributable to the protocol or just dumb luck is open to debate, but I have found chiropractic helpful.

IMPORTANT TO NOTE: MY CHIROPRACTOR ONLY USES NON-FORCE TECHNIQUES FOR ALL ADJUSTMENTS TO MY NECK AND BACK! Like many of you I have multiple problems in my neck and back so traditional "force" style chiropractic is NEVER used on my body!

Hope this information is helpful to someone out there...this is such a great sight! Laura rocks.....

[LauraL840]

I found this on a blog, thought it would resonate with most leakers! It's cross posted as a new thread too, for those who don't read through the 'advice' section anymore! ;)

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN
**********************************

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

AUTHOR UNKNOWN

[horseaholic]

Well, went to Mayo Clinic week before last to see Dr. Mokri and he finally found my leak. (I'd been to two other hospitals with no success.) They did an MRI with gadolinium injected in my spine (was told not approved in U.S.)which he said is best to detect slow/small leaks. Mine is caused from a bone spur which he said was very rare. Now we've got to figure out the best course of action, surgery, blood or glue patch. Any suggestions? I highly recommend going there if you've exhausted everything else to find it. I had MRI's, CT/myelograms, cisternograms, blah, blah blah, and all were normal.

Debi

[Michelle ANNE]

First of all, Laura your advice for people without chronic pain and tips for dealing with chronic pain were so right on the money! I know you didn't write them, but thank you for posting them. I had tears running down my face as I read them. I am really considering sending them to friends and family, however I don't want to offend anyone. Debi, I had an MR myelogram today ,which I believe is the same test that you had at Mayo. They injected the gadolinium into my spine, had me lay and sit in some different positions for about an hour and then did a series of MRIs. Of course the tech couldn't tell me anything but he did say "I'll just say that this experiment was a success!" He was smiling from ear to ear, so I'm praying that my leak(s) showed up. I'm calling the DR. first thing in the morning to make sure they get right on the report and we can decide the best course of action. I'm so happy for you, I know you must have been pretty far down the road to have to go to Mayo. My drs. are talking about Mayo if we don't find the leak, but hopefully after today... Please keep us updated on what you decide as the best course of action.
Michelle

[LauraL840]

We're in LA right now seeing Dr. Schievink (if you'd asked me a year ago I would have said we would NEVER have made this trip, yet here we are....), and by guineapig's request I am 'sticky-ing' our housing arrangements.

While we originally flew out here (from the EAST coast) with the thought that we had a FREE place to stay, that turned out to be a big ole bust! Fortunately I had looked into long(er)-term rentals before flying out here and we were able to find a place at the last minute after we arrived in LA.

We are currently staying at 1234 Havenhurst Dr, 2 miles from Cedars-Sinai, in West Hollywood. Here's the link I'd found online at "Home Away" site:
West Hollywood Condo (http://www.homeaway.com/vacation-rental/p186015)

The man that we are renting from is a lawyer (social security LOL) and has been fantastic to work with! He met me here at the condo and let me look at the place before we agreed to the rental and is renting it to us for $795/week plus tax and cleaning ($100). It's 850 square feet and we have a full kitchen and bathroom, plus access to a pool and washer and dryer. It's also a 'gated' condo, so you have to have a key to get into units. Parking is below units and on street and this unit has a designated parking place! So far we've been really really pleased with this location! It's minutes from everything we could need! One mile from grocery (Ralphs), half a mile from CVS (pharmacy), and two miles from Cedars!

If you think this is the place for you, call Eugene Ahtirski at 323-931-1070

[LauraL840]

Probably my best advice I can think of:

If you have a complicated leak case, or a chronic leak (have been leaking for more than 6 months) and conservative measures haven't helped, make an appointment with Dr. Wouter Schievink for treatment.

Here's my list of 'reasons to see the man':


He has the most knowledge and experience treating both spontaneous and traumatic CSF leaks.


He is continually learning (with every patient he treats) new treatments/procedures which help the long-term healing for his patients.


He is compassionate, knowledgeable, caring, dedicated and committed. I've met him, and personally I've never met another doctor like him.


He has an amazing staff and team of other experts in their field who are experienced at treating leaks.

He treats you as a person, not a problem ... he sees a patient, not a leak!


He is thorough, takes his time, never appears hurried or annoyed and will answer all your questions.


He will review your medical history and images free of charge (even though Cedars web-site says its $50, Dr. Schievink does NOT CHARGE to consult on a leak case and can give his opinion to you/your doctor).


While he cannot control which insurance companies Cedars-Sinai 'accepts' or works with, he has told me that he can call your insurance company to work out coverage for treatment should you decide to be treated by him.


Here's his contact information:

Dr. Wouter I. Schievink,
Maxine Dunitz Neurosurgical Institute,
Cedars-Sinai Medical Center,
8631 West Third Street,
Suite 800E,
Los Angeles, CA 90048
Office (310) 423-7900
Fax (310) 423-0810
schievinkw@cshs.org
He WILL correspond via email, although if you aren't an established patient, he'll likely tell you to send him your images so he can review them.

If you want to make an appointment or get more information about seeing Dr. Schievink, the person to call is:
Cherry Sanchez (she's his administrative assistant and worth triple her weight in gold)
310-423-0814
She has voice mail and if you leave message she'll call you back (same day unless it's really late LA-time).

[BOBinFLA]

New to this message board? Welcome! Here are some tips on how to get the most out of it. If you have been diagnosed with a CSF leak you are definitely at the right place. We understand that this probably was not your initial diagnosis. Your symptoms may indicate more common maladies such as chronic fatigue, chronic headache, migraines, sinus infections, allergies, depression, meningitis or some combination.

As an example, in my own case I went through three ten-day regimens of different antibiotics, saw one Ear, Nose and Throat (ENT) specialist and a neurologist, before a second ENT ordered an MRI of my brain. This was three months from the onset of symptoms. The MRI revealed meningeal enhancement. I was hospitalized for three days, had several diagnostic tests, including a spinal tap (lumbar puncture – LP). This fortunately turned out to be negative for meningitis. I know I saw the best doctors in my area. Many other “Leakers” have gone for years even decades before being diagnosed correctly.

Whether you have been diagnosed or not, go to the top of the main page and open up “Sticky: Leaker Roll Call.” Look over some of the 60+ “Profiles.” Pay special attention to the “symptoms,” “tests”, and the types of specialists seen. Also look over the abbreviations and words under “Sticky: Advice from leakers” to get used to some of the lingo.

Help us help you. Go ahead and make your initial post by opening a “New Thread” on the main page. Include your symptoms, types of diagnostic tests you’ve had, and what kinds of treating doctors you’ve seen. Please include what metropolitan area(s) you are near. Maybe someone on this message board can refer you to a physician or facility they have experience with. Try to make your initial post as brief as possible. I guarantee a response. We understand what you are going through and would truly like to help.

Established Community Members: I’m repeating this post here on “Sticky: ADVICE from leakers” so we can refer newbies here and not have to repeat ourselves so much. Hopefully it will streamline the information exchange. I look forward to seeing other tips. Please make additional comments on the same topic here and make the next post title “Attention: Newbies – 1.1,”1.2, 1.3, etc. so we can keep track of this topic with additions and updates. Thanks – Bob near Tampa, formerly “Bob in Florida”

[BOBinFLA]

Choosing a Doctor - 1.0

Got symptoms you’re worried about and can’t explain? You’ve suffered long enough! You’ve let it worry you, maybe lost sleep, it’s keeping you from living a better life and maybe your moaning and groaning and being miserable has annoyed and worried your family and friends long enough. Now you need to face the facts and take charge of your health care. Don’t be afraid, feel intimidated or dumb. Too many people go for too long with serious symptoms that are sometimes easy to treat. You need a proper diagnosis and as wonderful as the internet is unfortunately you can’t get that on-line... maybe someday. To get that diagnosis you need to see a doctor. Only by knowing what the diagnosis is and what your options are will you be able to take the next step towards healing.

Here are some tips. I call it “Choosing a Doctor – 1.0” or “Things I’ve Learned About Health Care And Dealing With Doctors Through Years of Experience and Mistakes.” Forgive me if any of this sounds dumb, too obvious, condescending, I repeat myself or appear to go on a rant. It is truly meant to help you.

Disclaimer: The views expressed are mine only. I am not a doctor and don’t pretend to be one. The views expressed are mine only, should not be considered medical advice and should not reflect on anyone else, alive or not. I’m not a lawyer either, but sometimes I like to write like one. Now let’s get down to business.

First things first: If you don’t already have a trusted family doctor (General Practioner – GP) ask your family or friends to recommend one. Don’t just flip through the phone book. You can’t just pick a specialist first, either. (More on that in a minute.) When calling for an appointment let them know who referred you. Ask how much this first visit will cost. Let them know right up front if you do not have insurance. Tell them that you would be willing to set up a payment plan. See what kind of response you get. If the person answering the phone doesn’t know just ask if you can talk with the office manager. They should have a policy regarding patients for whom paying for health services would be a financial hardship. Any doctor who will not see you just because you do not have insurance…well, all I can say is you don’t want to see them either.

$$$$: If the financial aspect really is a hardship, you’re not alone. Some 47 million Americans do not have health insurance, mainly because it’s too darn expensive. See if you qualify for your state’s Medicaid program. There is nothing wrong with that. It’s paid for by your tax dollars and mine and that’s what it’s there for.

Alternatives for finding a GP: Call your local hospital. They should have a physician referral service. Call your county health services. They should have a clinic staffed with qualified doctors. Why would doctors do that? What better way to give back to their communities than to give some of their valuable time?

Internet info: Simply Google “Choosing a doctor.”

Side Bar Rant #1: What’s more important than your health and the health of your family? No, healthcare is not cheap, but I don’t think doctors are to blame. Those of us who know what it takes to earn that “MD” and what it takes to run a medical practice know what I mean. From what I’ve experienced and despite what some people think, the main reason most people become doctors is not to make money. They do it because they care. They get satisfaction from knowing they are making a positive difference in people’s lives. What other profession can one have such a powerful effect on the lives of others? They enjoy the challenge. Sometimes they get jaded and frustrated by everything that interferes with what they were trained to do…treat patients!

After making the appointment: Try to stop by the office before your appointment day, pick up the “new patient” paper work and fill it out ahead of time. They’ll want to know about your medical history, a description of your current symptoms, and even family histories of cancer, heart disease etc. Read it all (even the fine print) and ask questions if you don’t understand something. If you can’t stop by the office ask them to send the paper work to you. By doing this you’ll be one step ahead and you’ll have plenty on your mind the day of the appointment.


Day of the appointment: If you’re uncomfortable about going to the appointment alone ask a friend or family member to go with you. (I would much rather have my wife along with me for any doctor visit. She thinks of things I don’t and later I won’t have to explain to her what happened.) Bring a notebook or pad. Write down ahead of time what your symptoms are, what you want to say or what questions you want answered. Perhaps the most important thing to do is…listen. Don’t be reluctant or intimidated. You don’t want to walk out of the office and then think…”Oh, I forgot to ask about…” Try to get everyone’s name in the office (receptionist, nurses, office manager etc.). Try to remember them or write them down in your note book.

A nurse will probably get your height, weight, blood pressure, etc. Your GP will give you a physical exam (maybe even take a blood sample) to “screen” you to make sure that other than your current symptoms you are healthy. If she/he cannot effectively diagnose and treat you there you’ll be referred to a specialist. With the specialist you’ll have to go through the same process again (appt., paper work etc.)

You should get copies of all your paper work. The doctor will keep a chart (file) on you and you should do the same. Get a file folder, manila envelope, or ask for one at the office and start keeping track of it all. They don’t mean to, but due to things they can’t control, doctors are often “running late.” So you might want to bring a book, knitting or something. (They don’t call them waiting rooms for nothing.)

After the appointment: Send the doctor and his/her staff a simple “Thank You” note. They’ll appreciate it and just maybe remember you the next time you need to make an appt. Hopefully it will be the start of a good relationship. Gee, I sound like Miss Manners.

Side Bar Rant #2: You are in charge of your own health care. This is a journey and a learning process as much as it is a healing process. Don’t be a victim of our screwed up health care system. How something covered by so many band-aids can still be alive is beyond me. So start educating yourself. It’s the only way to tip the odds of getting better in your favor. Doctors should appreciate an educated patient. It shows you care enough to take an active role in managing your own health care. The internet is a great tool for this. (Psst..here’s a little secret: sometimes we have to educate our doctors. We’re just sneaky about it.) You want to work with your doctor. You’d be surprised at how many people can’t seem to grasp this concept.

Seems like too much trouble? Well, believe me the last place you want to start your health care journey is in the back of an ambulance or in an emergency room! I hope what I’ve said helps. We learn from everybody who posts here and we do care. I guess that’s why we call it a community. Good luck. If you disagree with any of this call my lawyer, Justin Case at “Dewey, Cheatham & Howe.” Or is he my insurance agent. Oh boy I just had another senior moment…and my wife says I act like a kid. Go figure. – Bob near Tampa

Experienced users of this board: If anyone else has any tips, maybe about choosing and seeing a specialist or getting a second opinion, please add to the thread here. Please title the next one “Choosing a Doctor: 1.1, 1.2 etc.” so we can track this topic. Maybe instead of repeating ourselves to the newbies we can just refer them here. Now I need to take an oxycodone and lay down with my ice packs.

[LauraL840]

I'm in the process of organizing a massive amount of medical bills and when online with Cedars billing I found this information very helpful! I'm cutting and pasting their advice and the link if anyone wants to access the 'spreadsheet' they offer.

Guide for Organizing Medical Bills

After any hospital stay you may receive bills and other documents, for example, Explanation of Benefits (EOB) from insurance companies.

Organizing these documents will aid you in understanding the complex medical billing process.

Below are some suggested steps you can take to help you organize your medical documents.

1. Obtain an accordion file or manila folders to organize all your paperwork.

2. Label the pockets or folders with the following:
* Each provider of service (i.e. hospital, physician, laboratories, etc)
* Prescriptions
* Extra insurance forms
* Miscellaneous

3. As documents arrive review each for:
* Provider of service
* Date of service
* Account number
* Total charges
* Description of services
* Your insurance/Medicare information
* Phone number to call with questions

If there are any questions, call the number given for clarification.

4. Matching the date of service and the total amount on bills and EOBs will help you in sorting and organizing the documents related to each provider.

The EOB will tell you if the charge was paid, denied or additional information is needed.

5. If the insurance company has paid the claim and left a patient responsibility, your secondary insurance can be billed. If the provider is billing the secondary for you, file the papers in the appropriate location.

If you are submitting the bill to the secondary insurance, photo copy the EOB and the provider’s bill. Write your supplemental insurance number on the copies, and then mail the copies and insurance form (if needed) to the secondary insurance company.

6. As each provider bill is paid by the insurance and there is no remaining balance, then mark the bill as paid. File the EOB and provider bill together in the appropriate location.

As you have paid your responsibility, then mark the bill as paid and file the EOB and provider bill together in the appropriate location.

7. To facilitate the tracking of payments, create a record for easy review. Fields to include are:
* Provider of service
* Account number
* Date of service
* Total charges
* Total paid by insurance companies or Medicare
* Total patient savings
* Total payment you have made
* Account balance

We have created a useful Excel spreadsheet to assist you in organizing your bills. This file can help you monitor your accounts.

The website:Guide for Organizing Medical Bills (https://cedars-sinai.patientcompass.com/hc/guarantor/organizeBills.do)

[LauraL840]

Those of you who've known me, know how I 'preach' patient advocacy and how important it is to be informed and advocate for yourself. However, I also know that many if not most folks here can hardly make it through a conversation and therefore advocating on behalf of their medical needs is 'not on the list' of things to do at the docs office....:(

Check out this site and see if it helps!

Patient Advocate Foundation (http://www.patientadvocate.org/)

[LauraL840]

I'm cross-posting this as the original thread will eventually 'fade' into the history of threads, but I think the advice should remain 'current'.

I'm going to be the first one to stand up and raise my hand *womanwave and say I've done this and still do this, but I'm hoping this 'thread' will encourage us all to consider that it's frustrating to have your thread 'hijacked', as well as confusing to new posters!

This is intended to be somewhat 'light-hearted' ;) ... however I hope we'll all take it to heart.


Definition:
Thread Hijacking - posting content unrelated to original poster's (here-to-for known as OP) thread title. Thread hijacking is not going off on a tangent WITH the OP, but it is going off on a tangent with someone other than the OP.

Signs and Symptoms:

Asking another poster (not to be confused with the OP) a question
Asking 'anyone' to comment on issues that are specific to (you) and not the OP's content
Discussing issues completely unrelated to OP, or OP's thread content

Diagnostic Testing:

Internal examination of 'intent' when replying on a thread
Treatment:

Start a new thread
If the reply you have in mind is potentially 'hijacking' the OP's thread, but is in response to another poster - consider cutting and pasting the other posters' (not to be confused with original poster :) ) comment into your new thread
Title your thread any way you'd like

[Robingrrr]

Age:42
Gender:F
Type of Leak: Spontaneous, don't know where
First Sign of Leak: started one night and just about passed out from the pain lied down and felt fine again. 07-12-08
First Diagnosed 07-21-08
Brief Summary of Tests to date: CT scan + MRI + LP
Brief Summary of Treatment to date: 20ml bloodpatch at site of LP, 11 days bedrest
Current Symptoms: head pressure after standing, no pressure when lying down
Current Status: scared for more invasive procedures, scared to loose job

[LauraL840]

If you're going to LA to see Dr. Schievink, or going to Cedars Sinai. Here's their 'list' of hotels near C-S that will work with patients or give a 'patient' rate that will be reduced from their regular rate. We have not used any of these, but others here have.

Cedars Sinai Hotel List (http://docs.google.com/Doc?id=d43v9bt_1hdb8v3d2)

[katybug]

Hello Everyone,

I am a former leaker, successfully repaired in December 2007. I have posted previously but not for some time. I thought I would share my story with hopes that it will help someone.

I am a 50 year old female. Over the past several years I have been diagnosed with both Fibromyalgia and Meniere's Disease.

In June, 2006 I woke up feeling quite ill, and as the day progressed I felt like my head would explode. I came home and went to bed with an ice pack on my head. Over the next 2 weeks I visited the emergency room 4 times. The first two times I had CT scans of the brain and lumbar puncture, and was sent home with normal findings and pain meds. The next two times, I was given morphine IV, with zero relief. They diagnosed Migraine headaches, although I described an orthostatic headache on each visit. I continued to get worse each day. The pain was beyond description. Eventually the pain was not relieved by lying down, it was constant and unrelenting. Vomiting ensued along with vertigo, weakness, fatigue. I felt really sick.

About 6 weeks after the headache began, I was referred by my Primary Care Dr. to a Neurologist. He gave me nerve blocks in my head on my first visit, with no relief. On my second visit, he gave me an injection of steroids into the occipital region to try to get the vomiting under control. Surprisingly, the steroid injection did ease the nausea, and also helped the headache, but it was still very bad. Subsequently, I was prescribed Prednisone x 60mg per day. For pain I was prescribed Oxycodone and Morphine.

Over the next several months, I continued to seek relief. I had an MRI of the brain, with and without contrast. The MRI showed Meningeal enhancement, dural thickening, and venous engorgement. The Radiologist attributed this to a recent lumbar puncture. In October 2006, I had another spinal tap and they tested for everything imaginable. Again, negative. However, this time they DID check the opening pressure, and it was low. In November 2006 my Neurologist referred me to UF Shands. UF Shands did their work-up, including a Neuro-Otologist and Neuro-Opthamologist. I had a Cisternogram and Myelogram, more MRIs the list goes on. The myelogram detected a leak and I was referred to UF Shands Neurosurgery in March 2007. I had developed Type II Chairi Malformation (9cm). By this time I was going on 9 months (I would have preferred to have a baby!) From March 2007 until August 2007 UF Shands scratched their heads and couldn't figure out what to do with me. The leak was very large, with fluid collection from
C6 - T12, and UF Shands was sure it was on the anterior side. Finally in November 2007 I confronted the Neurosurgeon at Shands and asked what he intended to do with me. He said they didn't know what to do and that they could not treat me. Wow!

Now it was up to me to find a Dr. I had heard about Dr. Schievink in LA, and wanted to go to him, but my Insurance Company would not allow it. I was forced to fax my records to every Neurosurgeon within 100 miles of my home, which includes major metropolitan areas such as Jacksonville, FL and Orlando, FL. No one would touch me. Mayo Clinic was not on the "approved" list of providers for my Insurance, but the Insurance Company finally relented and said "what about Mayo". I faxed my records to Mayo Clinic and received a call the next day from Dr. Robert Wharen. He is the Chief of Neurosurgery at Mayo Clinic, Jacksonville, and as it turns out, Dr. Schievink trained under Dr. Wharen.

My first visit with Dr. Wharen was in November 2007. He told me if he could isolate the exact site of the leak, he could fix it. He immediately ordered a myelogram. The first myelogram showed the leak, again from C-6 to T-12. They could not determine the exact site of the leak due to the large fluid collection and fast leak. Dr. Wharen discussed this with me, and then ordered another myelogram a couple of days later. This time they injected the dye into the cervical region (behind my ear), and took me straight into CT. Thankfully, this time they caught it. The leak was at C-6 Posterior and surgery was scheduled.

After 18 months of misery, high doses of prednisone, 30 pounds of weight gain, high blood pressure, Dr. Wharen performed surgery on December 7,
2007. It was a success. It took me a few months to begin feeling normal again. It took a few months to taper off of the prednisone (at the time of my surgery I was on 80mg per day, and oxycodone 60mg per day). I feel like the old me and I have regained my life. My symptoms of Fibromyalgia and Meneire's Disease have disappeared. (I do have permanent hearing loss and tinnitus).

The best advice I can give is don't give up! Also, if you present to a Dr. or an Emergency room with a headache that is relieved by lying down, the Dr. shoud recognize this as a symptom of a leak, but they don't. I actually had emergency room physicians laugh at me when I told them I felt better when lying down. I wish I had known then what I know now.

I highly recommend Dr. Robert Wharen of Mayo Clinic, Jacksonville. He is caring, concerned, and an outstanding Neurosurgeon. His Staff is also excellent and the facility is first class all the way.

Best of luck to all of you.

Katybug :)

[LauraL840]

I found a great website that gives information about discount rates for a multitude of car rental agencies.

If you're flying for treatment anywhere, this might help save some money!

Rental Car Momma (http://www.rentalcarmomma.com/)

[Concerned Gal]

I have worked out a few techniques to help me manage looking after my little one and thought I would share.

Obviously if you are in the peak of leak symptoms you won't want or probably shouldn't be doing any of these techniques. They aren't fool proof and I can still feel the strain/drain on my head pressure but to a lesser extent than other methods. Don't be too proud to ask able-bodied people to help you out in lifting and handing a baby to you. that way you get the cuddles but lessen the strain on you.

Quick Techniques
* Picking up babies from floor with less strain/rise in intracranial pressure:
I walk over to where bub is, kneel down, bring her up to my chest (easier now they crawl up into your arms but does require some bending forward if less mobile - keep your chin/head up/don't look down), walk on your knees/kneeling over to a couch/chair/bed (anything of that height - less distance is better on the ol' knees), by holding them against your chest they should be at a good height for you to sit them or lie them on the couch or 'stand them' on the couch with not much bending. while the couch is talking the weight you stand up beside them (holding onto them of course if they aren't stable), once you are standing beside bend your knees and pull them up to your chest. If I can't find anything suitable to put bub on to stand, I walk on my knees over to some kind of support - bench/wall to be able to help me get up while holding baby. The bend at the waist maneouvre which put your head lower than your body isn't good for me, nor rising from floor from squatting position with no support.

*Don't carry a baby any longer than you need to. I have a indoor pram always set up which can be used for short trips around the house/garden. I do something have to work out the cost/benefit of bending to put her in the pram vs holding her for the bit longer.

*Don't do two things at once while holding a baby. Things like holding a baby while trying to close and lock the front door put a lot more strain on the body. Wrapping both arms around baby (on hip etc) feels like much less strain and distributes the weight. Also avoid holding nappy bags at same time. Make 2, 3, 4 trips (ensuring baby is safe while you go back and forth).

*When picking a baby up from a cot use the higher cot level for as long as possible (for small babies), stand facing cot front one, keep your head up (not looking down) - like weightlifter, avoiding twisting, put on hand under their head one under their nappy, use your knees to lower yourself and pick up (weightlifting technique). If you are dexterous you can bring to your chest that way, or carry in this position a short distance to a high change table and reposition them from there to be held.

For bigger babies encourage them to roll onto their stomachs and go up on all fours. This brings them up a bit higher and you can scoop them up that way (under the arms) to stand them in the cot facing away from you. Bring them up to your chest that way and use change table to reposition them for easier holding. Alternatively encourage them to stand holding onto the side of the cot, your hands under their arms and bring them up to chest bending your knees to get down lower if need be.

*To put babies down in cot, follow reverse above. It can be much easier to stand a bigger baby in the cot and help them to lie down once the cot has their weight.

*Putting in a reverse facing car seat - if you have a standard height size sedan keep your head out of the car (keeping straight looking over the roof) while lowering them into the seat. use your knees to squat down to buckle them up. you will obviously need to look in to find the buckles but this is much easier once the weight is in the car seat. I have found lower standard size cars are easier than higher ones for the lifting in process. Holding weights out high at chest height is a real strain for me.


These are my current findings. If anyone else has any techniques please share

[maybepoet]

Hi all,

I must say people in the U.S seem much more clued up regarding their medical care than lil ol me in the UK who's worrying himself into an early grave because his wife is complaining of symptoms post surgery that I do not fully understand. I'll summarise the situation thus far:-

Nadine (aged 35) had a satsuma sized benign meningioma removed from her frontal lobe about six weeks ago via a craniotomy. She subsequently lost the sight in her left eye, developed 2 DVT's and has no sense of taste or smell.

She developed a leak of clear fluid from her nose about two weeks ago and was admitted for observations.The doctors never confirmed it was or wasn't CSF.The leak migrated to her throat where it has remained. Nadine complains of a constant "nasty taste" in her throat and she says she feels very, very weak most of the time. She has headaches over both eyes and her affected eye is quite puffy.

To complicate things further she has been experiencing intermittent numbness and pins and needles in both arms which the neurosurgeons don't attribute to the operation? We contacted the neurosurgeon for advice yesterday who wants to ask an E.N.T surgeon to perform an endoscopic examination via her nose and throat to see if their is a leak anywhere. Her neurologist will see her in a month about these other symptoms.

Because Nadine had a less than ideal recovery I find myself worrying about any new symptom she has. In our hospital there was no discharge plan and I have had to push for information and answers.

Nadine says she feels worse now than she did before the operation when she had pressure headaches, vertigo, speech problems and double vision. The surgeon said if we had waited a week she may have died.

Please help!

[ChrisB]

As a person who has had 3 active leaks at once and 4 surgeries, for anyone with a new leak I have the following advice (which works for me):

1. Take control of your drug regimen. From January to September of 06, I was prescribed 75 different medications. In the end only Oxycodone was and is able to curb my headaches. If you are not careful you can end up on more than you ever though possible. I am not a doctor, but I can say with certainty that this is not a disorder that can be cured with medication.

2. Stay in bed as long as possible. Even if I am not asleep, I strive to be in bed 12 hours per day (7 to 7, 8 to 8) when possible (have four kids under 10). The next day seems to related directly to the amount of time my brain gets to "rest" the night before.

3.. This one is tougher, but if possible work a four day week. Having a Friday to rest leads to a more productive weekend with family, rather than lying around both days. I know that many people cannot do this, but I have found that it has extended the amount of months and years that I can continue to work.

Thanks and good luck.

Chris

[forevan]

Small recommendation here but I bought myself one of those Gopher things at target. They are sort of long tongs that can help you pick things up off the floor without having to bend over. Wish I would have thought of getting one for after all my blood patches. My sitter even likes it so much she cleans the playroom using it. Makes me feel sorta old but whatever works and keeps that leak from not blowing out is worth it!

[Robbysmom5]

This seems to be a popular request, so I've reposted JLB's post:
CSF specimen collection guidelines with lab links:
CSF fluid is a highly perishable and precious specimen that can be difficult to collect.
Note: The CSF sample absolutely MUST be less than 4 hours old from the time it leaves the body (and should preferably be refrigerated during transport to the collection point) to the time when it is handed in to the processing lab or lab shipment collection point and then the specimen needs to be immediately cooled to lab specified shipping temperature. Summer heat, etc. will shorten viable specimen life. Test vial sealed in zip-lock inside ice-water thermos possible automobile transport method to collection point. Be sure lab attendants at the specimen drop-off point immediately follow testing lab temperature guidelines. (They vary by testing lab.) Failure to provide an extremely fresh sample will cause the high glucose (sugar) in the CSF to facilitate degradation of the Beta-2 protein (through decomposition and/or fermentation) and result in a FALSE NEGATIVE result. Proper collection and subsequent handling is critical.

Mayo Lab test protocol link:
http://www.mgh.org/lab/CATALOG/TESTS/5032.HTM


ARUP National Reference Lab test protocol link:
http://www.aruplab.com/guides/ug/tests/0050047.jsp

Easily collect sample CSF for testing with a sponge:
Using a sponge can really help you obtain the amount of CSF (leaking from the nose) that is required for testing. One can easily collect CSF for testing with a clean portion of absorptive sponge pad placed in the lower nostril. (Sponge may be a small portion cut from a new, fresh package of ladies' makeup or cosmetic sponge wedges. Cut a wedge-shaped, triangular portion. It should be large enough to fill nostril. You can still breathe through it.) It will become saturated with CSF. Express fluid from sponge by pressing on outside of lower nostril into clean vial for CSF testing. Specimen must be very fresh, no more than 3 or 4 hours old, (this means total specimen collection time, not last drop 4 hours old) and then frozen for Beta-2 testing. Check with your doctor and lab for collection requirements.

("One mL of the fluid may be required for this specialized laboratory study. An absorptive sponge pad placed at or near the presumed site of fluid leak can facilitate the collection of the fluid."
Source: http://www.emedicine.com/radio/topic139.htm
Author: Hugh J Robertson, MD, DMR, FRCPC, FRCR, FACR, Professor Emeritus, Department of Radiology, Section of Neuroradiology, Louisiana State University School of Medicine; Clinical Professor, Department of Radiology, Tulane University School of Medicine, Consulting Staff, Department of Radiology, University Hospital) Note: other sources say only .5mL is required for testing. Ask your lab.

[Robbysmom5]

CSF Challenged provided useful information on nutritional supplements. The entire thread can be followed on the link below. I have pasted part of the thread below the link.

http://brain.hastypastry.net/forums/showthread.php?t=42466&highlight=cocktail

Hi all, Here is that list of recommendations/supplements for adult CSF leakers that I promised I'd post and kept forgetting to do!!!! So Sorry, it took so long. It was originally posted by a spontaneous leaker on this site before the crash (2005? or earlier) and was given to her (not me) by a complementary med doc in Washington state. I have added vitamin D and Calcium to this list for myself.

Please consult with your physician and if available a medical provider with experience in nutritional supplementation, complementary or alternative medicine before starting any program of treatment. This list does not take into account any current medications, or medical condition, and is not suitable for everyone. Lab monitoring of levels should be included both prior to and during supplementation. This list is also not meant to be used in lieu of conventional/or standard treatment for CSF leaks. As many of these supplements recommend mega dosages, please consult with your physician before taking or adopting any part of this list.


1.MSM (Methylsulfonylmethane) 2000 mg /2X each day (this is a sulfa drug)


2.Omega 3 with High DHA 4000mg /day (anticoagulant, increases bleed risk, may not be good if brain sag or hx of subdural)


3.Alkaline diet, high veggies, 0 trans fat.


4.Bromelain (unknown dosage) usually sold in combo with Vitamin C and Quercitin


5.Vitamin C 2000mg 2X/day (total of 4000mg per day) Blended with bioflavenoids. (ester C is easier on stomach)
( avoid if any history of kidney stones, cardiac arhythmias) Decrease dose if diarrhea

6. Vitamin B12 sublingual 2000mcg for 2 weeks then 1000mcg each day ( has to be methycobalamin form and has to be in form with folate and B6)


7. Flax oil -2 Tablespoons per day (no dosage was given)

8. Co-Q10 -100 mg soft gels (ubiquinol-sold as QH absorb) Take 200-300 mg each day (2-3 softgels)


9. Hydration 72 oz a day. Water is ok as part of this 72 oz but ideally fluids with balanced electrolytes, without caffeine are better, as excess water can cause water toxicity.


10. Avoid caffeine unless it helps with pain.

[Robbysmom5]

With permission from CSF Challenged, I am copying one of her replies to this sticky. It was written directly to a forum member for her particular situation, but is applicable to many.

The entire thread is:
http://brain.hastypastry.net/forums/showthread.php?t=46955&highlight=surgery

Portion of CSF Challenged's reply is copied below:


Reasons for Questionable symptoms after surgery:
1. It's possible that you may have some mixed symptoms because if you had been leaking for any length of time (greater than 3-6 months), you may have subtle brain sag which may or may not be seen on a film. Say the base of your cerebellum normally sits at X, but when you were leaking, your cerebellum settled or sagged down to X + 3mm. This may not be enough to show up on the films but your brain knows its sagging and you feel it.
So, if the leak is fixed, does the brain (in our example, the base of the cerebellum) just bounce back up to X. NOOOOOOOO!!!!!!! It could, but this is unlikely, as it may take weeks, months or longer to return to it's normal anatomic position. So, you may not feel like you have a full blown leak BUT, you may still have slight downward pulling sensation due to the fact that your brain sag has not corrected yet(theoretical).

Ear symptoms, like deep pain, tinnitis, loss of hearing, and fullness overlap and are another common mixed symptom often present in both high and low pressure situations.
2. Symptoms could be pain from the surgery itself, infection, rebound high pressure, chemical meningitis from things used in repair ie glue? or other?(easily treated, not as scary as it sounds...)
3.Symptoms could be from system equilibrating and even your body doesn't know if it is high or low yet.
4. Could be due to new leak due to difficult anterior position of leak repair.
5. could be low pressure headache from diagnostic CT myelogram, lumbar puncture or other invasive test, if you had one prior to your surgery.
6.Headache could be due to side effects of any new meds??? especially narcotics in some people.

[Robbysmom5]

Another one of CSF Challenged's posts I am moving to the sticky.

Full thread:
http://brain.hastypastry.net/forums/showthread.php?t=46383&highlight=chemical

Partial text:

Catie,
It sounds like you may be suffering from post blood patch meningeal irritation. This usually occurs anywhere from 1wk to 3wks after a blood patch(most often around 1.5-2 wks) and is due to the meninges being irritated by the break down products of the blood from the patch.

The break down products of blood are far more irritating and toxic to the meninges than the whole blood used for the patch. They cause irritation and then swelling of the dural meninges, which results in pain and symptoms that may look like meningitis. In fact this is also called "Chemical Meningitis" which sounds kind of scary, but it's really not.
Technically Chemical Meningitis is simply an inflammation of the meninges due to a foreign substance (in this case the break down product of the blood is the foreign substance. Other things, like dye, fibrin, and glue can also cause this). It can occur with any type of blood patch, low, or high, single or double, lumbar or thoracic. Obviously, more blood, may translate to more irritation, just as higher up patches may give more irritation.
Symptoms include pain in the back, within the time frames above, and this pain may radiate to neck causing neck stiffness, difficulty turning head, touching chin to chest, nausea, vomiting, head pain as it progresses. Since the blood migrates, the pain may not be exactly where your patch was, and in fact is usually higher. In the beginning, one may just have back pain, which gets a little worse over time. If mild it may just go away on it's own. If severe(assoc. with Nausea, meningeal signs, ) then inpt. treatment is best to reduce inflammation. Other conditions/ complications can occur so it is thought that treatment is better than waiting it out.

Most neuros and neurosurgeons who are not at major teaching centers treating CSF leaks will totally blow this off, with a shrug of the shoulder and an "I don't know..." Docs that are in the know like Dr. S, know immediately what this is and will treat. I had this happen twice after 2 local blood patches 6 yrs. ago, and suffered needlessly, since no knew what it was.

The good news is that this is treatable and resolves quite readily so you don't have to suffer.
If your symptoms are mild, you may just have to take a steroid dose pac, outpatient and the inflammation calms down. If after 2 days, of outpt. treatment, if it hasn't started to improve, you will likely have to go inpatient.
Unfortunately if someone is already at the "nausea and vomiting" stage they usually need to have a stronger steroid (like IV decadron,) and coverage for nausea and pain which is done inpatient. Symptoms usually then resolve within 3-5 days as an inpatient.

Most importantly, anyone with these symptoms should be seen and properly evaluated to determine if you have meningeal irritation and/or to rule out a bacterial meningitis or other condition. Although it does sound like you have meningeal irritation aka, chemical meningitis, you should rely on the advice of a leak specialist or the consultation of a specialist and your doctor. I would highly recommend that you discuss with your physician and have him call Dr. S. if your doc is clueless. Dr. S has seen this many times and will set your doc straight. If your neuro won't call him, get your primary to call him, or any other doc that will listen, so that you can be assessed and treated properly.
If bacterial meningitis, is suspected, as leakers we should try to avoid LPs, due to the risk of getting a new leak. There are other things that they can look at if they suspect a bacterial meningitis and if suspicious, the doc can add an appropriate antibiotic to the steroid, anti-nausea meds, and pain coverage.

[runny nose]

HELP.

I have Ehlers Danlos (messed up collagen, ie weak tissue, ie fragile, aka connective tissue disease and the following symptoms, and this has all being going on for 10 years ( I remember when it started)

a) Pain up and down left side
b) tingling in fingers, toes, muscle spasms in left arm.
c) constant headache, from 2 on scale to 8 on scale, including a couple of ER visits and serious pain killers.
d) blood nose from left nostril
e) strange lump in ethmoid sinus
f) drip from left nostril when straining, laughing, picking up, etc.
g) a "hazing" in my left ethoid sinus on CT scan
h) a lump in my left ethoid sinus on MRI
i) an event about 6 months ago where I had this gush, like half a cup full of really strong tasting, like rotten oyster shell, taste, out of my RIGHT nostril.
i) headache on left side that is totally incapacitating and gets worse steadily as day wears on and usually not so bad in the morning.

Im going nuts with the doctors. The ENT guys say the scan (done without the ganogolium or what the hell its called) was normal. But they were looking for a tumour not a ENT leak. However given the connective tissue disease diagnosis I cant believe I have not been referred to a neurologist.! I am going back and forth to ENT and primary care docs (I only have HMO) for referral but they just give me strong painkiller meds which I dont want and for some reason wont refer me to neuro. God help this healthcare system. Its making me crazy. Or am I crazy? Anyway help me please does this sound like a CSF leak?

thanks

[LauraL840]

Unfortunately the two links I provided in this original post are broken (thanks for letting me know ;) ) so I've been trying to trace back to the original articles that I referenced and find other links that work! I have found both articles and am going to post the pertinent information that I was referring to in my OP, and links to the articles. One article is 'abstract' only, I don't have access to the full text. The other article does give access to the full text and is a great article in its entirety.

Low Cerebrospinal Fluid Pressure Headache - Christine M. Lay, MD (http://www.treatment-options.com/article_frame.cfm?PubID=NE04-5-1-04&Type=Opinion&KeyWords=low%20cerebrospinal%20fluid%20pressure%20 headache&HitNum=1&JournalID=NE)
Opinion Statement

* Alterations in cerebrospinal fluid (CSF) pressure lead to neurologic symptoms, the most common clinical manifestation of which is headache. Typically, the headache is orthostatic and related to traction on pain-sensitive intracranial and meningeal structures, distention on periventricular pain-sensitive areas, and direct pressure on pain conveying cranial nerves.
* Low CSF headache is a distinct and familiar syndrome that is seen most frequently following lumbar puncture. In this clinical scenario, the diagnosis and proposed plan of treatment are obvious.

Over the past decade, however, an emerging syndrome of spontaneous intracranial hypotension (SIH) is being recognized with increasing frequency. Most of these patients are found to have spontaneous CSF leaks and have unique, clinically distinct imaging findings, which confirm the diagnosis leading to appropriate treatment.
Spontaneous intracranial hypotension is a relatively benign and usually self-limiting syndrome of orthostatic headache in association with one or more of numerous symptoms including nausea, vomiting, horizontal diplopia, unsteadiness or vertigo, altered hearing, neck pain/stiffness, interscapular pain, and occasionally visual field cuts.
The headache itself, while often orthostatic, may initially be non-positional, may lose its orthostatic features, or rarely or never be orthostatic. It may be gradual, subacute, or thunderclap in onset. There may be a history of minor, antecedent trauma.

* By very definition, the opening CSF pressure is low, below 60 mm H2O, and often a "dry" tap is encountered. However, the pressure may be normal, especially with intermittent leaks and may vary tap to tap. Fluid analysis is normal.

Brain (and occasionally spinal) MRI studies, with gadolinium enhancement should be undertaken. In patients with SIH, studies typically reveal diffuse pachymeningeal enhancement, frequently in association with "sagging"of the brain, tonsilar descent, and posterior fossa crowding. Spinal MRI is an up and coming investigational technique, which may be helpful even in the case of a normal brain MRI.

* Computed tomography myelography is the diagnostic study of choice and may follow radiocisternography, which often shows absence of activity over the convexities and early appearance of activity in the renal/urinary tract.
* Although conservative measures are often undertaken first, epidural blood patch (EBP) is the treatment of choice. For those who fail EBP, surgery may need to be undertaken in those cases with clearly identified leaks.

This next excerpt is what I was referring to in my original post. It's a portion of a larger 'full access' article. It is a CME (Continuing Medical Education) article written by doctors for the purpose of educating doctors. To read the full text, click the link below:

Intracranial Hypotension Syndrome: A Comprehensive Review (http://cme.medscape.com/viewarticle/467001_1)

Treatment Methods

The headache of ICH typically resolves with conservative management and bed rest. It is believed that the supine position reduces CSF pressure at the site of leakage and therefore allows healing of the underlying meningeal defects.[38] Intravenous or oral caffeine and theophylline have been reported to be dramatically effective in 75% of cases of ICH caused by LP.[48] It has been proposed thatmethylxanthines produce arterial constriction through the blockade of adenosine receptors.[26] Consequently, intracranial blood flow and,presumably, venous engorgement are decreased.

Other treatments aim at increasing CSF volume either by fluid restoration or by eliminating the leak. Strategies used in an effort to restore CSF volume include intravenous or oral hydration, increased salt intake, carbon dioxide inhalation, and steroid therapy. Few investigators have evaluated the efficacy of these empirical strategies, and therefore their role in the management of ICH remains unclear. Although some patients' clinical improvement has been coincident with glucocorticoid or mineralocorticoid treatment, other study results have shown such measures to be of questionable value.[26,35] Furthermore, although these drugs cause systemic fluid retention, there is no convincing evidence indicating that steroid agents have any effect on CSF production or absorption.[41]

When these measures fail, epidural blood patches are generally considered to be a safe and effective treatment. This technique was introduced by Gormley and is based on his observation that ICH follows LP less frequently when the tap is traumatic and bloody.[42] It involves injection of autologous blood into the epidural space. Both immediate and lasting relief may be achieved, with the first patch being reported to be effective in 85 to 90% of cases.[25] Repeat patches improve the efficacy to 98%.[6] The procedure is most effective if it is performed at or within one interspace of the leak.[10] If the level of the leak is unknown, however, the blood can be injected into the lumbar epidural space and the patient's head lowered to 30°. The blood will slowly ascend to, and seal leaks in, the thoracic and cervical meninges.[6] Research data indicate that this procedure may be effective over nine spinal segments.[30] Complete resolution of headache is achieved less often in patients with multiple CSF leaks.[9] Presumably, immediate relief results from a transient increase in CSF pressure, whereas lasting relief is provided by sealing of meningeal tears.[24] Initially, the epidural blood forms a gelatinous tamponade over the dural hole that prevents leakage. Eventually, fibroblastic activity and collagen deposition result in scar formation, usually within 3 months.[41] The most common complication of this procedure is back discomfort at the site of injection, occurring in one third of patients.[42] Other complications include paresthesias, radiculopathy, and lumbosacral meningismus.[6] Blood patches fail significantly more often when they are applied within 24 hours after LP.[42]

Alternatively, epidural infusion of saline may also yield immediate relief for patients with ICH.[24] This procedure involves continuous infusion of saline for 2 to 3 days and, like the epidural blood patch, presumably works by causing an immediate increase in CSF pressure. Saline infusion need not occur at the site of leakage, however, thus avoiding the risks of cervical and thoracic epidural blood patches.[41] Infusion of saline also avoids the risk of introducing blood into the subarachnoid space and resultant chemical meningitis.[13] Saline infusion, however, is not as effective as an epidural blood patch and recurrences are significantly more common.[42] These findings likely reflect the absence of clotting and scar formation that occur with the injection of blood. Other disadvantages of this procedure include a greater risk of infection due to the indwelling catheter and the hospitalization required for prolonged infusions.[41] Overall, continuous epidural infusion of saline remains a useful strategy when other methods fail.[13]

Surgical correction may be required when all other measures have failed, especially if a dural tear or other meningeal defect has been demonstrated. In particular, meningeal diverticula can usually be treated by simple ligation, and complete resolution of headache has been achieved in up to 100% of patients.[46] Surgical repair of meningeal tears has shown similar success.[35] In addition to the correction of meningeal defects, surgical drainage of subdural hematomas, a frequent complication of ICH, also may be necessary.[24]

A new technique, epidural injection of fibrin glue, has shown encouraging preliminary results.[36]




I'll start .... (LOL, imagine that)

I had an email correspondence recently about the 'medical community and prescription medications (headache preventatives, pain medication, etc)' which is what really sparked the idea of an 'advice sticky' thread. Primarily because it's 'your' job as the patient to be informed; not too many doctors will do that these days and unfortunately it may be your job as the patient to EDUCATE your doctor!

So here's my 'take' on that topic:

I think you are going to find that MOST, if not all, neurologists are going to want to 'try' several medications before they give up the notion that some medication is going to 'fix' this problem! It's unfortunate, but that is the mindset of medicine. It's equally unfortunate and frustrating because medication will NOT EVER FIX a csf leak!

Here's the problem:
... you have a NEUROLOGICAL problem that is treated by ANESTHESIA (or neurosurgery). All neurology knows to do (and can do) is a neuro workup, order imaging studies, diagnose your leak ... and woah-ho, WRITE a script ... Oh, and they can refer you too!

Regarding whether to TAKE prescription medication; all you can do is educate them and say something like, "None of the (extensive) studies published regarding SIH (Spontaneous Intracranial Hypotension), PDPH (Post Dural Puncture Headache), Intracranial Hypotension, (or just call it a plain 'ole csf leak) show any benefits for the use of prescription medications in either the treatment of csf leaks or the subsequent symptoms (headache, vomiting, nausea, photophobia, etc) caused by the csf leak. Published studies do indicate that the following treatments are effective ... (from least invasive to most invasive, and you can find the 'list' of appropriate treatments in this article - http://www.treatment-options.com/art...icle&KeyWords= , or in this article http://www.aans.org/education/journa...3/15-6-cp2.pdf )"

You can try to appeal to them with reasonably, EDUCATED logic and ask that they NOT prescribe (useless) medications that will most likely make you feel worse, and instead try treatments that have 'some' proven success. You really DO want to stay away from medications and combinations of medications that have a large potential for rebound headache! Rebound headaches can significantly change the 'symptom-ology' of the headache (HA) ... in my husband's case, his HA became less positional in nature, very severe, and really didn't appear to be a csf leak when we began pursuing why he still had a headache so many months after his lumbar puncture.

My best advice..... EDUCATE yourself first, your doctor(s) second.

Print off TWO copies of all the research articles pertaining to your specific type of leak, put together a notebook for you and another for the doctor. Make them read the articles and DISCUSS with you what you find. Learn all you can about different imaging, what's the 'best', what's 'invasive' to the dura, etc.

We've had to educate our doctors. We've had to be transparent about how difficult it is to ask doctors (who have YEARS of education, experience, and even TEACH at a medical university) to give more weight and consideration to our research and to specific patient history, patient response, etc. than to their 'ego' (I didn't put it quite like that, but I think you know what I mean).

[LeakyLaurainwv]

My best advice is this, be an advocate for yourself. I figured out what was going on with google and PubMed after seeing at least 5 different doctors. I found the neurosurgeon in Pittsburgh who actually found my leak, and I referred myself to Dr Schievink. If I hadn't, I would still by chasing my tail in rural WV going from one pain clinic to the next. So, again my best advise is that if things don't add up, there is probably a reason. Don't stop searching until you find it!

[slpavlansky]

I too am both happy and sad to find others who are "leakers". My story is as follows... I had a second child via c-section with a spinal block in Nov. 07. The person in training poked around several times and apparently damaged my dura. Three days later when I left the hospital the horrible headaches started. After 20 months and 11 doctors they finally found that I only had a CSF pressure of SEVEN! With a myelogram they found five leaks and patched them. Headaches continued, repeat myelogram showed seven leaks now with a pressure of nine. They patched those. Headaches continued. With a third pressure reading of 10.75 I had eight blood patches. Still having headaches and I am at a loss for what to do next. Ruled out other major illnesses. Only have positive ANA and underactive Thyroid. Anyone out there who can provide advice? Not sure if I should try a fourth attempt at blood patches? I have pain level 10 headaches once per week with pressure behind one or both eyes. Hurts to have eyes open, to talk etc. Regular headaches daily. Have tried all meds. HELP?

[forevan]

I too developed a leak from failed multiple attempts at a spinal during childbirth. I just had surgery this past Feb. after dealing with the leak and multiple blood patches/fibrin glue for 2 years (gave birth to my son in March of 07). I am so sorry you are dealing with a leak in general and I understand the extra stress when you have a newborn/infant/toddler at home as well. At times I feel like those precious first months with my new baby (as well as my then 3 yo) were sort of stolen from me. Where are you being treated? I think at this point, I would try and get yourself to one of the so called leak experts around the country or at least get a 2nd opinion from one of them about your situation and next treatment steps (more blood patching---have you been having high volume blood patches and/or double sited?, fibrin glue placement, surgery etc.???). It's interesting you have so many leaks? Are they all at about the same area (and the same general location the spinal attempts were done?). The doctor I personally see (and quite a few on this board) is Dr. Wouter Schievink at Cedars-Sinai in Los Angeles. Dr. Mokri at Mayo Clinic in Rochester, MN (I believe Dr. Schievink trained under him at one point) is also highly thought of. Some see Dr. Gray at Duke but she only does blood patching and fibrin glue (not surgery). Maybe others can help with more names of other leak experts. Many of us have had to travel out of state (and even out of country for some) to get to the best place possible. I know that seems overwhelming but it really isn't too bad (except for cost and logistics for child care) and can make a huge difference sometimes when dealing with this. Best of luck to you and hang in there.

Holly

[slpavlansky]

Thanks Holly! It's encouraging to hear from others with the same situation. It's strange to me that the Doctors seem so unaware of this condition. You and I are in the same boat as I have a 4 year old as well as the 20 month old and these crazy leaks make life such a challenge. I feel like I'm not even the same person I once was. Anyway... I have been receiving the blood patches at Duke with Dr. Gray as I do live in NC. I have emailed Dr. Schievink and he feels I might be a good candidate for the fibrin glue. My myelograms are being sent to him for review. I am curious as to how your fibrin glue procedure went? Is this worth it? What are your thoughts? My leaks are all up and down my spine. Several in the botched edidural area but others up to my shoulder blades. What surgery did you have? Was it at Cedars? Are you better? Have any meds helped you? Any input or advice from you whould be helpful. THANKS bunches!

[chbrewer]

slpavlansky, How many times have you done the blood patch. I am currently seeing Dr Gray as well. Just had my second round of patches (5 first time and 7 this time) with no relief so far. I have twins that will be 4 in October, Gracie will be 2 in Oct, and my wife is expecting in September. Dr Gray is working against the clock to try to get me better before #4 comes, but I am not optimistic so far.

[slpavlansky]

Wow! I have had four different attempts at patching (March, May, June and July). Two times with the myelograms and two times without. They have not helped me at all. My pressure was reading 8 this last time. What was your pressure? Mine started with underactive thyroid as well. Dr. Gray has been very helpful but I am at a loss to find out why I still have these daily headaches. Mine are not positional and caffeine does not help. Nothing helps. Congrats on your baby on the way... life is tough with little ones who you feel are suffering because you can't be 100% for them.

[chbrewer]

The first time I went in my pressure was 16. She thought it was unlikely I had a leak and sent me home. She called me back and decided she would do the myelogram just in case. That time my pressure was 16 and she patched 5 leaks. When I went for the 2nd blood patch my pressure was 11. The didn't redo that myelo and just patched based on the previous one including two spots she didn't do the first time.
Over the weekend she has put me on diamox to see if I have now swung to high pressure or she has a feeling I may be experiencing swings from high to low. She wants to consult with Tim Collins at Duke and decide how to proceed based on results of adding the meds. I am on the lowest dose right now with no results good or bad except now my whole body is sore like I spent all weekend on a construction project.
I don't have the classic sympton of getting worse when up and better when laying down. Sometimes that is the case, but not always. I still think I have low pressure but if so the diamox should make me worse.

[slpavlansky]

Man isn't this crazy that it's so hard to fix. Diamox made my headaches very much worse four days was enough for me. It's bad, but it did prove that my csf levels of 7 and 8 are low for me. Collins has not done anything for me. Dr. Gray, whom I am thankful for, says we might do the surgery to do the patches with sticky blood and then try the shunt to drain out the fluid so the holes can heal. Who knows.... I just want this to be over so I can continue a normal life as I'm sure you do with your baby on the way. I say sign me up for whatever it is, it can not be worse than this. (I take that back, I don't want anything worse.)

[chbrewer]

I just found out this week one of my wife's friends husband had gone through the same thing at Duke. He ended up going to LA to Dr S and got fixed up. I am not ready to go that far yet. The last two days my headache has started inching up so wondering if the diamox is pushing the pressure down to where it is not starting to make it worse. I still think I have a leak, but I am not a Dr.

[Mommy2Boys]

Make sure to rule out dehydration as a cause of your CSF hypovolemia. I went though 4 myelograms, traveled all over the country, had 30+ blood patches (this includes mini patches at nerve roots), only to learn leaking was not my problem. I am a female in my 30s, and I suffer from hypovolemic POTS (postural tachycardia syndrome). I am hypovolemic because there is a defect in my nervous system that fails to tell my kidneys and heart to produce renin which subsequently tells the body to release aldosterone. Due to the severely low renin, I also have partial diabetes insipidus. My body does not hold on to enough free water and salt. The treatment for POTS is the polar opposite of lying flat. Since I have started on drug therapy and an exercise therapy, my life is really turning around after almost 2 years of hell. If you have signs of dehydration or dysautonomia, please rule this out with a physician experienced in these conditions. If you are hypovolemic, your body draws fluid away from areas of less importance. This may include spinal fluid. Mokri and other physicians do site dehydration as a possible of hypovolemia, but medical causes are not mentioned in the majority of the literature. Please feel free to PM me if you seem to fall into this category. My opening pressures at 3 different institutes were very low, but a significant leak was never identified. Good luck to all.