Now what?

[PainInTheNeck]

I'm not sure where to begin. I had hoped that I was almost all better. I had a blood patch done 3 1/2 weeks ago. My symptoms were almost gone for a couple days and then gradually increased until about 2 weeks and a couple days after the patch. At that time I just became miraculously better. That was about 10 days ago. My symptoms were not all gone but very tolerable.

The symptoms I have had over the past 10 days are as follows: When I sneeze or cough I get the dull building up pain in my neck leading up to the back and top of my head getting a sharp pain. When I pick up anything with any weight to it (even like a 2 litre bottle) the top of my head hurts. Leaning down to pick something up would result in dizziness upon my getting upright again. :( My back continues to feel stiff.

Even though I had these mild symptoms they were so much better than what I had experienced the previous 6 weeks( 5 of those weeks flat in bed) that I made a few adjustments and got back to having a real life.

Every day the aches and pains seemed better. But today, I have a return of very uncomfortable, very painful symptoms. About 30 seconds after I stand I get a feeling of very strong pressure in the middle of my back that zooms up to my neck where the pain starts in my neck and continues up the back and top of my head. The hard pressure in my back is not anything I remember from before. The neck and head pain is extremely the same horrid pain I had before.

My husband and I have put me back on bedrest today and I am SOO hoping and wishing this is a temporary set back. Does anyone have any advice for me??? I so want to be well for my kids this Christmas.

This roller coaster ride is enough to drive one crazy.:(

[dagaz]

I hate to be rude or blunt here but it seems as though you need me to be... flat Lay Flat!!!
Don't bend over at your waist... bend at your knees and if you can't Do that get someone to pick up what you need for you.

What ever you don't bend and pick up anything heavier than what you can lift in one hand comfortably. You want this leak to heal.



Sorry but I don't see your leak healing any other way. The pain that you are getting is called brain sag, Your patch is new enough to still work.

Put yourself on bed rest for a good month if this patch is to work.

I was always in the hospital after my brain surgeries so I didn't have a choice not to be on bed rest, I was put there no matter what.. besides I couldn't lift my head post op. Yes I still have a severe leak but I wasn't the smartest patient when I got home from the hospital.





Good luck

[Concerned Gal]

First of all, I truly feel for you Pain in the Neck. My thoughts are with you.

Question for Dagaz, have you ever come across any information in your travels about how long the blood remains in the epidural space for? The reason I ask is that I know that the blood patch is only a temporary measure that gives your body the chance to use the blood to clot up the leak, however ultimately the blood dissolves (according to all the literature i've read). In my experience I personally think the blood stays around for about 9 days. The reason why i say that is after my 2nd blood patch, i was very good. Totally immobile for 24 hours, then for 4 days after only getting up to use the bathroom and the following 5 days at home only getting up minimally. On the 9th night, I woke up in the middle of the night, with this incredibly bad feeling in my head (not pain) but sensing movement in my head that made me feel incredibly sick/nausea. When i got up 8 hours later in the morning to use the bathroom the pain was back as before. In my opinion, the blood had dissolved by this stage and my body wasn't able to clot in time to heal the leak.

I do respect that bed rest does help heal leaks, however i personally believe that this is usually only the case for leaks that have been caused by a traumatic event (ie known case - lumbar puncture etc). I have yet to come across someone whose leak has healed after bedrest only and the leak had no known cause (spontaneous leak). Although i would love to be proven wrong if someone has read something to the contrary. I'm not saying this to offend or upset anyone, this is just my personal belief after all the research I have done and my experiences.

I have read Pain in the Neck's previous posts and I know that she has spent weeks in bed prior to the blood patch and took it fairly easily in the weeks that followed. I think that in the first 10 days post blood patch bed rest is best, but personally i think that if it hasn't healed by now, it probably won't and further treatment is necessary. Sorry Pain in the Neck!

I'm 2 months post 3rd blood patch, and i have made conscious efforts not to bend too much (bending at the knees), not carrying anything too heavy etc. I'm still experiencing some symptoms. When I left after the 3rd blood patch I nagged and nagged my doctor about what i should do to make it work. His advice was that there wasn't anything i could do to make it work. As long as I wasn't silly and ran a marathon, if it was going to work it would work and if it wasn't it wasn't. He might be totally wrong, but even though i specifically took it very very easy anyway his words brought me some comfort. It is a very hard position to be in to think that every move you make could jeopardise it working. So don't be too hard on yourself Pain in the Neck.

By the way, I feel i've had more success this time by avoiding getting up and down too much. I've been much better sitting up all day (if I can) rather than lying down and having a sleep then getting up. I think minimising the movement and pressure changes (even if it means i'm upright all day) has helped me. Again, just my experiences.

[repeat leaker]

I thought I would provide a few thoughts...

First, something that I think is being looked at more and more with leaks is not only the patching/glueing/surgery but also post procedure volume. Does the body get used to low volume and forgets or is challenged to produce more? Recently I spoke with someone that had a leak repaired via blood patch, confirmed the leak was healed, but still had headaches. After a 5 day spinal infusion the pressure was returned to normal and the person is doing great. Note this is only one person, but it does highlight the impact of volume of fluid, even after the leak is healed.

After my bps I generally go through a week of waking up at night with intense pressure..usually a few weeks post procedure. My thought on this is my body is producing more fluid and it is causing reverse headaches. These headaches are very intense while lying down but relieved when I get up. This is my indication the patch has worked and I am getting back to normal.

This is a very tough illness. Something that helps me is trying to stay positive, and active. Too much bedrest causes other issues for me, including mental decline.

Best of luck.

[PainInTheNeck]

O.K. Thank you all for your insight. Right now I am just trying to listen to my body. If anything causes pressure and/or pain then I will avoid it. Tomorrow is Monday so I will call my Dr. also. I have family members encouraging me to just go ahead and get the 2nd patch and get it over with...

I have a few questions I would like to ask.

First..has anyone else felt the acute pressure(not pain but very uncomfortable) that starts just above the small of my back and then moves in a wave up my back. The pressure spreads up and when it reaches my neck it begins pain that continues to spread up and over my head? The pressure in my back is a new thing for me and I am trying to figure out what it means. Of interest to me is that at one point before my 1st patch I had a day or two of feeling much better. I had an appt with my Neurologist and as part of his exam he lightly pushed on my spine, starting at the neck and moving down. I was headache free when he started but when he reached about midway down my back I felt the rush of pain and it stayed with me for days. As a matter of fact, that occurred on a Wednesday and I was hospitalized on Friday for dehydration, very low potassium levels and a need for medically supervised pain control.

2nd....Has anyone else had the low potassium level? Is there any known connection?

3rd...From the very first few days of the onset of symptoms I have experienced a "flushed" type of rash on my cheeks and upper chest ONLY when my symptoms flare up. It does not itch and I am not feverish. It just has to mean something as when my symptoms came back so strong yesterday...the rash was back. I have avoided talking much about this as all but one Dr. have totally discounted it. The only Dr. that took it serious is the one who thought it was menengitis. We know it is not menengitis but is it possible to have a menengitis type rash when other things are going wrong with your menengi?

[PainInTheNeck]

Fourth....what is spinal fusion?

[waterlover]

Hello to all,

I have not posted since the site has been renewed....I couldn't find my old name (ccnut)....for those who may remember. Unfortunately, the old posts were not saved......lots of valuable info on them. I won't linger too much on rehashing my story but I had leak in 2000 after two epidural shots for a disc problem. I progressively became worse until I was bedridden for two years.....and then ever so slowly was able to tolerate being upright longer and longer....a process that occured over several more years. I'm not sure I still have a leak....but I know I did for at least 4 or 5 years. I've had all the classic symptoms, neuropathies, low csf measurements, three failed blood patches, two myelgrams and one cisternography with no signs of leak. I too feel like I should have an "honorary degree" in csf leaks as I've read all the literature. Here are a few thoughts for you "pain in the neck"

Regarding the blood patch mechanism of action.....one of my neurlogists told me to give up to two weeks for the blood to dissolve. Sometimes with a large volume patch the blood may not clear as quickly. But essentially, the blood patch hopefully flows to the leak area.....it may not. This is luck of the patch. If it does, then it temporarily clots the hole, and provides relief. But your body must still fill in collagen tissue and heal the hole. The blood patch sort of bides you time. This is why the blood patch is not fool proof as so many anesthesiolgists have described it. The Canadian Journal of Anesthesiology has a great review of blood patches called Epidural Blood Patch Myths. They reveal that the success rate is more like 75% especially after inadvertant punctures and spontaneous leaks....and this is after at least two patches.

Regarding how much and for how long to lie flat? I would agree with Concerned Gal that although lying flat is essential immediately after the blood patch period, you can't be too hard on yourself. There seems to be a crucial period immediately after the patch. I lied flat for a long, long, long time and it did no good. I think given some good judgment with such movements as lifting and abrupt moves, that you should be able to move around some and be upright and have the leak still heal. I saw Dr. Lay in NYC who has much experience with leaks and she thinks I was still healing over two to three years. (Remember mine was a lumbar puncture....but slightly larger because with an epidural needle). I think other factors are involved with healing including nutrition, immune function etc. And prolonged bedrest has it's evils as well.

Right now, I still have head pressue but I am quite functional....except for exercise. However, I do walk every day and I'm finding I am doing better with certain short episodes of some exercise. My new neurologist thinks I had a leak for a long time but doesn't believe I do now. He thinks my long term leak "turned on" my central nervous system and dura leaving me with this chronic pressure. He is hopeful that I can turn it off over time. I'm somewhat skeptical and that I still may have a small leak but I have seen improvement over time and a small amount of improvement on Inderal recently. He's working on "turning off" the cycle of pressure. Sorry so long winded.....would be happy to answer any further questions.
Best of luck--waterlover

[dagaz]

I guess because I have never had a blood patch I wouldn't know the ins and outs of them, I just know what I have gone through with my 13 years of leaking and hate to see people go through the same thing if they can help it. Also my leak is cranial and the attempts of patching it or them were fat and muscle graphs. Also they were all craniotomie's as well.

Sorry if I stepped on any toes...

[Concerned Gal]

Dagaz, No need to think you stepped on anyone's toes. I know I value everyone's advice/information in here, because out of all the doctors i've seen, no one makes sense or understands leaks like you guys.

[PainInTheNeck]

I want to say thanks so much to every one of you. No toes stepped on here and no feelings hurt. Be it bluntness, different opinions or long windedness. I have be known to be "accused" of all 3 of those and more. What is REALLY important here, in my humble opinion, is that we continue to have a forum where we can share, explore and support one another.

So...last evening ( about 30 hours after the onset of pain this go around), I started realizing that the pressure and pain werent happening when I got up to go to bathroom. This morning....no pressure, no pain.

I do remember the day my symptoms came back bad that I was so thirsty all day, cotton mouthy and I kept drinking huge volumes but stayed dry feeling. I am not sure what comes first with me....the dehydration or the leak. I am sure the dehydration is bad news for the leak but also seems it didnt matter how much I drank that day(I drank tons).

Does anyone else "flare ups" that get better without more than bedrest?

Thank you very very much.

[Concerned Gal]

Pain in the Neck - I've also noticed the feeling that I can never quite quensch my thirst. and that it is often when the pain is worst. Not sure whether that is because i hadn't drunk enough?. Also with food, if i haven't eaten recently it gets worse. I noticed this when i was really struggling and still going to work before diagnosis. I wouldn't be able to eat after eating a normal breakfast at say 7am (ie no morning tea or snacks) because of the nausea, sick feeling, and pain and it would get worse and worse and by 11am I would be lying on the office floor. I honestly think it had something to do with how bad i was suffering and i've since read about how keeping well hydrated etc helps production of csf.

Re 'flare ups' the only thing I noticed was that caffeine (this is post 3rd blood patch) really made a difference for me. I was on theophylline (caffeine tabs) because i was drinking soda by the gallon for months and was sick of the taste and wanted caffeine to be in my system, in case it not only eased the symptoms but helped it heal. I forgot a tablet one night and the next morning i was back to my absolute worst (wasn't caffeine withdrawal, it was positional agony/pain that i had when this all started and up until after 2nd blood patch). Having said that post third blood patch, i stopped the caffeine tabs after a month and i've been totally caffeine free for a month and can't notice much difference when before this blood patch it DEFINITELY helped. I've got other "theories" but none i've tested enough to comment on...yet :)

Waterlover - I just wanted to pick up on something you said. Firstly, are you able to work (in terms of your description of being functional)? I'm at that stage now and am not sure whether i'm good enough to start working full-time again. At what stage do you just accept the hand you've been dealt and stop actively pursuing treatment? I'm struggling with this at the moment.

Also, you mentioned immune function in your post. Just wondering whether that was just in passing or whether you were affected personally by this. I'm on immunosuppressants for a bowel condition and have been for over 4 years. Since this all started, I was jumping up and down to all my specialists about a possible linkage but i keep on getting shut down. Just wondered whether you knew anything.

[waterlover]

Concerned Gal,

No, I am not working. I had to stop in 2000 because of my leak. I don't think I could work full time right now. Even part time would have to be close by....mainly because my head is still unpredictable. I have two kids so my job is being a mom. By functional I mean I can do everything I need to do in a day to take care of them. For the last three years I have been able to be up all day, drive, get the groceries, go to school functions etc. I used to be quite athletic but now I can only walk around my neighborhood. I look quite healthy though and unless you know my story would never know....one of the big deceptions of leaks. My life is so much better than it was.....but I still have restrictions.

This is one of the most misunderstood and understudied areas of neurology. So many physicans believe the dura heals in x amount of days and know nothing of chronic leaks....to even consider their existance seems far fetched. It's not so far fetched though.....tissue that doesn't repair is not unusual....but since imaging is not perfect, diagnosis is harder. To complicate matters doctors hear you complain of a headache and lump you into the migraine catagory. There are so many myths surrounding this subject. At it's worst, I don't even like to classify a leak as a headache....I remember my head feeling like G-forces pulling down, it is really unlike any other physical sensation I have ever had.

Regarding immune function, I absolutely believe immune function influences tissue healing of any kind, seems irrefutable in medicine. I don't know your story fully, but seems odd your doctors don't see the connect. Your immunosuppresant med may be exactly why you are taking longer to heal. I might get another opinion....or at least research the drug and see if there is evidence of connective tissue weakening. For me, I'm not sure why mine took so long....still a mystery. My immune function could have been low....it was at a time when I was not sleeping ......(2-4 hours/night for many years). I'm a licensed nutritionist so I may be biased here but for a doc to suggest an immunosuppresant drug is not a factor seems irresponsible. Good luck --My best --waterlover

[PainInTheNeck]

Waterlover.....I am not sure if I read your post right or not. There is a question that has been floating in my head and this seems to be the time to ask. Am I jumping to conclusions to think that if leak(s) dont get all the way healed in a period of a couple weeks or so that there is likeliness one may never return fully to the same level of health as they had before the leak? I guess what I am asking is since I have been sick with my leak for over 2 months ( I know - way shorter than you guys ;o( ) , is it likely I am looking at a chronic lifelong illness? I am not giving up. I continue to be active, doing most the chores I usually do but with way less energy and pesky horrid pains and lately the horrid pressure I am feeling in my back. I do not bend or stretch or lift. We have changed cabinets around to hold things at my arm level.

Waterlover- you say you function and yet say not to the same level as before the leak. Do you have any more leak symptoms? Does it "flare up"? I hope you don't mind the questions but I am trying to get a handle on my life. Knowledge as well as practical thinking helps me to stay on the sane side of this (at least I think I am sane....lol).

Thank you ~peace~ Shelly

[Concerned Gal]

You know, on one hand, i find it really sad to think that all our lives have turned out not the way we wanted or expected. But on the other hand it is quite empowering to think that i've yet to come across any csf leak sufferer who is all "woe is me". Yeah we all have our days but on the whole it's a pretty resilient bunch.

Waterlover - on the immuno front. Funny that i was on tabs for 4 years - no problems. I get told to come off the immunosuppressants slowly (which I do) and this all starts (head pain/leak symptoms) when I get to "no dose" (one month after reducing dosage). I last on "no dose" for about a month before my stomach flares and i have to come back on a reduced dose to what i was on before (1/2 dose), but by then it's too late (on the leak front). I'm back on full dosage again now because the stress of the undiagnosed leak and the general sickness was causing stomach problems. I wish i'd never come off the tabs in the first place because i think it's too much of a coincidence.

[waterlover]

Pain in the Neck,

I absolutely would not assume that you can not get better completely. I was in touch with several people who were bed ridden with spinal leaks for up to two years and completely recovered. Most people with leaks get better....it is only the minority of us who may be affected long term. So I would not lose faith that you will not improve.....continue to believe that you will!!

I am still symptomatic....but am up and about every day. My neurologist believes I have "transformed migraine"....or that my dura's pain receptors were "turned on" with having a leak for so long and somehow their pain receptors must be turned off....the reason for my new medication. He is optimistic. One thing he stressed to me was not to get any more lumbar punctures.....that my head certainly doesn't need any opportunity for stimulus. Looking back if I were to do things differently, I might not have had the three blood patches....and definately not the second epidural shot of cortisone for my back that started the whole thing. Blood patches must be done under fluroscopy....otherwise the risk of further puncture is too great. With needle hole leaks the chances of healing are greater....with spontaneous leaks.....more time probably...and possibly surgery. Also, I think I might have tried more preventive headache medications. I am so anti-drugs and no meds helped my headache/head pressue anyway I didn't pursue many. I've tried amyltriptilline, neurontin and theophylline and they didn't help. If the leak is active I'm not sure these will help at all....but if the leak is not active, than prophylactic meds may help with preventing further dilation of the vessels and reduce head pressure. This is where I'm at now.

Concerned Gal,

I'm a bit confused about your immunosuppresant drug and your belief in their effect on your leak. Do you think when you stopped them that your leak started? Are they a steroid? Steroids are commonly given for many gut problems because of their anti-inflammatory effects but they can also have big connective tissue consequences. It would be great for you to contact a nutritionist who specialize in gut problems, I'm thinking of two people, one is Liz Lipski PHd...she wrote Digestive Wellness and the other name is escaping me but I can get back to you. Both have great reputations. Google Liz and check out her website.

My best to all-Waterlover

[Concerned Gal]

Waterlover - The immunosuppressant i'm on is a genuine immunosuppressant. I haven't been on steroids for about 4 years thankfully. I'm not sure how the immunosuppressant is connected, if it was. But this all started when I came off them.

Looks like i'm headed for another blood patch. My recent MRI said that the dural enhancement was still "Mildly persisting' confirming what i thought that although the symptoms are much better, its still there. My Dr and I are thinking of getting another thoracic blood patch to try and get the leak because I did have significant improvement after the last thoracic blood patch. I think at 25 years old I need to try and resolve this and stop the leak if possible, because although i've been able to do so much more, i still have the stiff/uncomfortable neck pain which i can deal with now, but i'm not sure i can tolerate it forever. Also i'm afraid the longer i leave it, the less chance i've got of getting rid of it. It's been a year since symptoms started.

[squeakysmum]

You know, on one hand, i find it really sad to think that all our lives have turned out not the way we wanted or expected. But on the other hand it is quite empowering to think that i've yet to come across any csf leak sufferer who is all "woe is me". Yeah we all have our days but on the whole it's a pretty resilient bunch.

I agree! I think the "woe is me" is a phase which, in my experience (through my husband) quickly turns to anger and then, eventually, to acceptance and practical thinking.

[waterlover]

Concerned Gal,

Just as an fyi......corticosteroids as a group are classified as real immunosuppresant drugs given for a number of autoimmune problems including many gut problems like Chrons disease. Ask your doctor. Unfortunately, it is very typical of many physicians not to relate medications to another medical problem.....it happens all the time.

Best of luck with your blood patch!!--Waterlover

[guineapig]

Concerned Gal,
As far as getting up and down, I believe it is the change in particular pressures caused by your stomach muscles which aggravate symptoms. Ergo, depending upon your situation avoid using abdominal muscles.

PainInTheNeck,
Potassium like salt, if my poor memory serves, is an electrolyte. Important to csf and all the bajillion things csf serves. I do not remember the level of potassium, but salt is the second highest ingredient in the bathwater of csf. Some physicians treat spinal headaches with salt diets, at least symptomatically.
How does your physician know the rash is not symptomatic of meningitis?

[PainInTheNeck]

Hey GuineaPig......the Doc ordered my potassium checked again yesterday and I havent heard anything so I assume it is ok now but I will call and check tomorrow anyway...like the rest of the folks here I have come to learn you can't just count on the Docs and their staff to get back with you when they should.
As far as the rash being meningitis....it has been determined by an Infectious Diseases Dr. and NeuroSurgeon that I never had nor do I have meningitis. They discount the rash as that I am flushed but I know it is something that has just shown up along with this leak. It doesnt itch or feel hot so it doesn't really bother me except when I look in the mirror. I just wondered if anyone else had this.

Thanks for answering. Take care! Shelly

[guineapig]

what was your dr's reasoning behind the potassium test? what was the test, blood?

[PainInTheNeck]

As to the potassium test. It is a blood test. When I was in the hospital for pain control (after 2 bozo emergency rooms docs tried 3 time which meant 9 needles to give me a blood patch and were miserably negligent and inebt....another story)...anyway I was admitted for pain control. The neurologist ordered a barrage of blood tests and it was found I had low potassium...like dangerously low. So anyway they gave me these 2 horse pills of potassium and then for 3 days my I.V. fluid contained potassium also.

I think potassium is one of those things you can deplete when dehydrated and my guess is I was on a constant minor dehydration before my first patch. There are still days now that I drink and drink and drink and never get rid of my cotton mouth.