Similar syndrome - for Concerned Gal

[msm]

Concerned Gal,

I just wanted to say hi to you.

I have been a silent watcher of this site for quite some time now, but never felt compelled to write before. I have had a CSF leak for three years -- the site of my leak was found by Dr. Schievink at the Cedars Sinai last year, but after 2 glue patches and several blood patches at the Cedars, I only became worse, and am now trying everything in my power to stay out of surgery. Although I only have one detected leak (t12 -- and it likes to come up in scans only SOMETIMES), I have all the telltale signs of having a soft dura due to an underlying joint disorder (I have hyper-flexible joints, it takes me ages to get better after a myelogram, etc).

Before seeing Dr. Schievink in LA, I was with Dr. Mokri at the Mayo and seeing Drs here in Montreal, where I live. In those two years (after spending 6months convincing Drs I wasn't nuts -- I'm sure many people on this site can relate) I underwent 8 blood patches of various sorts (which also made me feel worse). In those years, there was never a detected leak on any of my scans, only diverticuli that looked "suspicious", although cisternographies showed that my fluid level was consistently low -- 4ccs at its lowest, 10 ccs at the highest (oddly, I felt almost just as bad with ten ccs!)

But enough about treatment -- as I have already described, no "conventional" treatments have ever made me feel better (and I've tried everything -- epidural infusion? check. Pressure enhancing drugs? Check. blood, multi-level, glue, CT-guided patches? check. "Perfect" bedrest? check). I have found most in the medical community, even the experts, to have a generous lack on understanding about everything that someone with low-CSF feels -- for me, sometimes the feeling that I have lost my center of gravity, that strange, discombobulating, moony dizziness, is worse than the headaches.

I wanted to reach out and say hi to you because I read a posting of yours which described your symptom set, and was blown over, because it could have been me writing. My past three years have been a roller-coaster. There have been long months of me needing to run to the bathroom because of crazy traction pain when upright, and being so foggy that even looking at a computer screen or newspaper would make me cross-eyed (and before I gave up office work, I was a newspaper editor!). In those months I also felt like my head was painfully "inflated," and like I was in a mild dream-like state (I could kinda hide it, but it was extremely scary -- I consoled myself by telling myself it was anxiety while knowing it was a low-fluid thing). There were a couple of months, my worst ones, where i couldn't even be flat, and ratcheted my bed up on cinder blocks, so that i'd be on a decline.

Then there would be periods like my present situation, where I can walk around the block, head tilted forward to avoid that horrible "brain crashing" feeling, and then lie down for hours, proud of my accomplishment. I can still barely handle a car-ride, because of the crazy Canadian pot holes, which make me feel like my brain is being jangled too much, but I am still on an upswing, where every month I see I can do things I couldn't do the month before.

I am lucky to be able to spend a lot of time in the country now. I write from home. I go for acupuncture religiously (REALLY helps me with my symptoms, as have chinese herbs, which have bolstered both my blood pressure -- normally very low -- and, seemingly, my general hydration/fluid pressure), and I am certain that if I just keep at this low-impact style of life, and stay away from doctors and their needles (all the patches have practically coated my spinal cord with scar tissue) for a long enough stretch, that my body will close up this leak just as surely as it opened it.

As you, I am curious about pregnancy. Dr. Mokri told me he sees no reason as to why not, but at the moment I just can't imagine how I could handle the extra weight, and am worried that I'd create a larger tear by some kind of exertion while carrying. A very kind radiologist at the Cedars, Dr. Louie, said that as for delivery, the only option is ceasarian. Thinking of a vaginal childbirth is out of the question (and of course no epidurals).

All the best. Sorry to ramble

MSM

[Concerned Gal]

MSN,

Thank you, thank you, thank you!

You do not realise how much I appreciated your post. Although I have continued to come in here regularly, lately I haven't felt the urge to post because I feel like I have reached a point of (I can't really describe it) like admitting defeat. And for me, I struggle with that feeling. Although we are all suffering in the same csf boat (it's a leaky boat - hehheeheh - sorry bad leak joke) I felt like I was the only one on my current journey (ie facing questions about pregnancy etc) and being okay enough to live an okay life (not in agony like a lot of you still are - I have been there, I know how it is) but still not being good enough to think it's behind me. But I just wanted to take opportunity to thank everyone on this forum. Please don't take my lack of posts lately as a sign i don't appreciate or care about you all. I think about everyone here a lot. I've been pretty busy lately (trying to live a normal life) and i didn't want my current attitude (a bit defeated but still in fairly good spirits) affecting anyone's motivation to keep searching for answers. As we all deserve chance to lead a full and happy life.

You certainly sound like you are suffering a lot worse than I am in your current symptoms, but I'm so very pleased that you are making steady progress.

I'm really really interested in your accupuncture and herbal supplements etc. If you could post or Private Message me as many details as possible regarding things you are doing to help I would really appreciate it.

As for pregnancy, it continues to hound my existence. I have huge concerns that the extra weight, hormone levels, stress etc will negatively impact on my leak. I have decided that should I be lucky enough to carry a child that c-section being under general anathe (Knock me out buddy!) would be my only option. I have been dealing with for nearly 14 months now (well the obvious symptoms anyway). I will continue to sit and ponder and hope my leak resolves to give me the opportunity to consider an unencumbered pregnancy, but I think deep down I know this won't happen. I think I will need to make the decision to pursue pregnancy with this still hanging over my head. And my motivator will be that to the question "am i happy to let the chance to have a family go by" is a resounding no.

You are in my thoughts. Thank you for posting. I encourage other "lurkers" who are in the same leaky boat to post. Strength in numbers.

[waterlover]

Dear Msm,

Just wanted to reply to your post because it hit a few chords with me as well. My spinal leaks were from two epidural shots and took many years to heal. I applaud you for posting because although you may not be where you want to be, your progress provides hope to others with spontaneous leaks. Its funny that so many of us do not respond to the blood patches and strict bedrest. I was quite athletic prior to my leak and the mental adjusments of bedrest are immense. I smiled at your walking experiences because I can remember the mental boost walking gave me even though it was merely up and down my driveway, followed by diving for my bed, which progressed to walking back and forth in front of my house and then block. This progres was over months/years. I do think, if one is able, walking helps in some way maintain circulation and blood pressure. I remember one of my neurologists who has a fair amount of experience with leaks tell me if it doesn't make me terribly worse such that it sets me back, then to do it....such as walking. Also, I attribute a pivotal moderate improvement in my ability to tolerate being upright to about 6 months of intense accupunture and nutritional supplements.

All my best for continued improvement--Waterlover

[msm]

Hi Waterlover,

Thanks for writing.

I am incredibly curious about the connections between spinal fluid and the Chinese Yin attribute -- have you been diagnosed as Yin deficient by your acupuncturist?

I have had the identical experience to you with bedrest. I actually feel like strict bedrest is detrimental for me. After my last serious stretch in bed (only getting up for the bathroom), which ended two months ago, I could barely breathe I was so weak

And like you, I was athletic in the great "before". I still miss the feeling of serious exercize so much...

I agree with your theory about the walking and circulation. If I stop moving and lie down too much, a kind of sluggishness sets in and the little fluid I have just doesn't get anywhere near my brain. The difficulty is knowing how much is the right amount of walking****ing...


very best,
msm

[waterlover]

Hi Msm,

This condition is so hard to balance because activity can worsen you and make you feel horrible yet manageble physical activity can serve a purpose. In the first year of my leak I was hospitalized for 10 days of complete bedrest (complete with lovely bedpans etc.) and also was put in trandelenburg position. I was worse after the whole thing.....and I believe it really messed up my equilibrium for a while.

Anyway, my accupuncturist did not diagnose me with a ying deficiency though I may well have had one, I remember he was floored at the imbalance my body displayed to him after his tests. I was one of the worst patients he had ever seen and he actually called some of his colleagues in Korea to get some help. He is a well known accupuncturist in the Boston area and has quite a following especially with cancer....worked with MGH quite a bit etc. He himself had just turned 60 and was built like a 30 year old. Definately practiced what he preached. But I suspect he had not "tested" many low csf people so the condition probably presents to his tests like some horrendous imbalance of systems......which it is!!

Btw, good suggestions about what to do prior to a myelogram. I stood up inbetween mine but probably should of coughed, done a few cartwheels etc. Hope yours helps. Take care, Waterlover

[Homeflight]

Dear Concerned Gal, I've just subscribed to this forum, but I've been reading it for a while now, and your story touched some sensitive chords here, my sister went through a similar situation a couple of years ago, and I've been there for her, every step of the way, so I caught a glimpse of how hard it must be.
I hope you and your baby are well, God bless you!

[Concerned Gal]

Hi Homeflight,

Welcome to the board and thank you for reaching out.

I truly hope your sister is doing well now. If you don't mind me asking was it leak related (or similar) and that is why you stumbled across our humble board? It is often easy to overlook the loved ones (Laura has provided a great insight for us all into the life of a leaker's wife) so please stick around and keep us company.

By the way just so no one is confused, when I wrote the above post I was talking about pregnancy as a possibility, not that I was going through it and expressing concern about it. I was just pondering the issue. But when I re-read it just now I saw how a new reader might have been confused.

Anyway, keep in touch and again, welcome :D

[Homeflight]

Thanks for the warm welcome, Corncerned Gal. Yes, my sister is doing much better now, she too had a leak related problem ...and now that I re-read your comment, I realized my mistake :) sorry about that.

It was nice meeting you, hope to get to know more of the great people around here.