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!

[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