Spinal Fluid Leak
 

I am a 62 yr old white male with a spinal fluid leak in the right L3 region (underneath on the ventral surface of the dura and underneath the nerve root). This CSF leak resulted during spinal surgery 10-09-06 conducted in Amarillo, TX. There have been three unsuccessful attempts to repair the leak. I have typical CSF leak symptoms, headaches, exaggerated hearing, nausea, loss of energy and weight loss (normally 150, now about 135). I have undergone 60 hyperbaric treatments at Duke Medical Center (negative results for healing the tear). I am stable but would very much appreciate any help getting this repaired soon. Medical history (highlights) includes, substantial thorax radiation (13,000 rads over 8 weeks in 1972) for treatment for testicular cancer (teritoma carcinoma rt testicle, removed), radical lymph node dissection (1972), gastric bypass (1974), 7 previous surgeries for flatback syndrome, spine implants, implant failures, lumbar spinal stenosis with radiculopathy. I know,......I'm lucky to be alive. Bottom line is that I am looking for a clinic/hospital/surgeon with successful experience in repairing CSF leaks. ANY help is appreciated, on or off line (gareth847@aol.com) Thanks

spinal leak
 

I am a white female in my 60"s I am under going treatment for a spinal leak aquired during surgery. Dr prescribed FIORICET TAB - GENARIC BUTAPAP/CF50-325-40MGTAB WEST-WARD. 2 tabs everyday. ALONG WITH PLENT OF FLUIDS, and was to lie down as much as possible. I understand this is a caffine type of med. I have been taking it for about ten days. Yesterday I could function for the first time, even though I still had a headache. This morning I feel better yet, I still have a heaviness in my ears but nausea is gone. Hopefully this my help you. I had a MRI 2 days ago of the 3-4 lumbar area where surgery was preformed, but do not expect much from that. A MRI of the brain was negative. My surgery was done at Microspine@com in De Finieke Springs Fl....Hope this helps..Charlee

spinal leak
 

Hi there, I am new to this board. I too had a spinal leak which happened after I had a L5-S1 PLIF. Thank God it happened only 2 days after surgery, so I was still in the Hospital. My neurosurgeon brought me back into the OR, reopened my back, and attempted to suture the leak, but he couldn't because the tissue was so thin. He wound up taking muscle from my back, glued and sutured it over the leak, and it worked. He said he was so happy it worked because the leak was massive. I hope this helps you. My surgery was in Nov. of '06, but unfortunately it is a failed fusion. I will be having a revision. Hasn't been scheduled yet, but the surgeon will use bone from my hip this time, and will go in through the back, and the front. Here we go again! kathyk

HI Gareth
 

I'm new to this type of internet communication so I hope this posts right- I'm a chronic csf leaker and have been to a number of different doctors, the one neurosurgeon I found to be the most helpful is Dr. Schevink in Los Angeles at Cedars/Siniai.
Hope this helps!

Repair of spinal fluid leak
 

Hello, My sister is undergoing a surgical procedure today at Cedars Sinai in LA to repair a tear in the dura. This tear happened during her surgery last week for stenosis and disc problems. Apparently one of the tools the surgeon uses can nick the membrane. I will let you know of the success (hopefully!) or otherwise of this procedure. The surgeon who performed the original surgery is Dr. Chu (Cedars) and apparently one of his associates is a specialist at doing these repairs. I am told they are very good at this. We are all holding our collective breaths for a good outcome. As I said, I'll let you know. Good luck to you.

Hello, all. I was just recently diagnosed with my second spinal leak in 7 years. With the first leak, I was in the hospital for an entire month, because doctors couldn't figure out what it was. I couldn't raise my head without throwing up. When they finally figured it out, they administered a high dose of steroids intravenously. That did the trick for almost 8 years up until a week ago. My head started hurting at work, which I didn't think much about. Halfway through my day, it became extremely difficult to sit/stand. I went home early and laid down, which immediately relieved the headache. A few days later, it still wasn't getting any better, so I decided to go to the ER. The neurologist strongly felt that it was a migraine, but after having a leak before, I knew better. I practically had to bed for an MRI, which no surprise, showed a leak. I had two blood patches done and was discharged a few hours later. I still have a headache and my neck is stiff, but not as bad as it was. I believe I may have a connective tissue disorder called Marfan Syndrome and that's why I've had two spontaneous spinal leaks. Does anyone know of any supplements that strengthen connective tissue?

Hi Mduvall, :welcome_sign: to NT.

I guess first I might ask this question on the Vitamins, Nutrients, Herbs and Supplements forum, and spend some time searching the NT archives. You could also Google: supplement connective tissue Look for credible medical sites rather than those selling supplements, e.g. http://www.umm.edu/altmed/articles/c...sue-002440.htm

We've been taking a Gluosamine/Chondroitin/MSM supplement (which is one that's supposedly good for connective tissue) for years because of a lot of hype (including some from our doctors) but recently I came across this, which is giving me reason to delve a bit deeper (and maybe save some $ on something that may be doing nothing).
http://www.quackwatch.org/01Quackery...ucosamine.html

I guess whatever you try, it shouldn't hurt to run it by your own doc/s first.

Doc

Hi Everybody!
 

It's great to have you!
Lots of great support to be had here! And just in case you weren't aware, there is a forum here specific to CSF Leaks - might find some helpful stuff there.
Here's the shortcut link to get there:
http://neurotalk.psychcentral.com/fo...aysprune=&f=78

Caring!
Rae
:grouphug:

leaks
 

I had a second neck fusion in Nov/2008 and before it the myelogram went terribly. I think this is when the damage occurred.
But I did not have a regular PCP and only was seeing a neurosurgeon and thought the symptoms which developed after the surgery were due to the extensive damage to my spinal cord/brain stem.
I then found a PCP but had so many issues it was definitely overwhelming to him. You see, I had carpal tunnel and cubital tunnel, TMJ, Spinal issues, and other things too. So, when I told him my symptoms he gave me chronic pain meds.
Around 3 months later I tried weaning myself off the amitriptyline and the headaches, shooting electric facial/brain pains were so severe he put me right back on the meds. I did this 3 times trying to get off meds. Never was I able to due to severe pain.
I was having severe headaches, ear pain, leaking in ears, nose and eyes, vertigo, gait issues, nerve pain down both arms, nausea...etc. He just increased the meds each time I complained. Gave me meds for sinus infection, allerigies, and ear infection.
Now, it's three years later and he sent me to a pain specialist and he finally talked me into spinal injections. This enhanced my symptoms 10-fold!
Finally, I went to ER and he said I may have persisitant spinal leaks. So I look it up....BINGO! This is exactly what I am experiencing.
Now, I am about to have a second round of injections and I wanted to see the pain specialist before he did this procedure. He assured me its not a leak. He said he will get me an appt with a neuro...this takes 3months because I am in a county hospital program...but he walked in with an appt for a week from now.
So, any suggestions? The injection procedure is Feb 1, 2012. Should i come right out and say its a possible leak? I'm afraid if I don't he will say its simple headaches! Then again some doctors don't know much about persistant leaks, do they?????
PLEASE HELP! I am in severe pain and no doctor is helping me!

I don't know the answer to the last question, but I don't think it would be a good idea to conceal anything. The neuro will most likely take some kind of medical history. Be honest, open, candid... all that. If you have any questions/concerns, bring them up. Bring along any supporting documentation (what you looked up), records, questions.

It sounds like you may have been through this before, but there may be something of value by googling: neurologist first visit

Best wishes & good luck!

Doc

Welcome to all
 

Hello to all the new people who have found Neuro Talk. I think I counted four new souls here, and I wanted to say hello to each of you. I hope that there are solutions to the spinal leaks. I have indeed heard of this condition before. Most of what I read said that in time, this can heal. I certainly hope all of you can find a resolution for this medical issue. There will be others along to talk to you and encourage you to keep seeking stability in the leak. You all will be in my thoughts and prayers.
There is a search bar at the top of the page that has "search" on it. Type in the name of the condition, and you will find more people and information to look at. Again a warm hello to all of you. I hope there is less pain for all of you. ginnie

Well, I do appreciate your candid reply because it was exactly what was needed. I will do exactly as instructed and take into consideration the documentation as to what I will take as far as research. I believe we as patients sometimes need to wake these doctors up because they do become complacent and without a teaching facility inclusive, they forget certain issues remain pertinent and are not to remain in just textbook ideology.
Sincerely, Vigi

Well, it's not exactly like doctors just get their sheepskin and never have to hit the books again. Most states require doctors to complete a certain number of hours of continuing/supplemental education each year in order to maintain their credentials/licenses; how much can vary depending on the state and specialty.
http://en.wikipedia.org/wiki/Continu...ical_education

For more info./examples, Google: doctors continuing education

I think of my doctor/patient relationships as team efforts; we listen to and learn from each other. The thing is that, in addition to learning medicine, doctors also learn (and practice) a particular way of thinking, and it's enormously helpful if/when patients learn how their doctors think so that we're not constantly butting heads or at odds, and so we can help them help us more effectively.

HINT: There is a book entitled How Doctors Think (which I think is a good book, but it tends to predominate searches). To get around that, Google: how doctors think -groopman
The book was written by a Dr. Groopman; placing a minus(-) sign in front of his name tells Google to ignore pages that contain that word/name, which should eliminate most of the pages pertaining to that book. ;)

I've also found it helpful to just have a conversation with a doctor to find out what kinds of documentation/evidence they prefer. Most are more open-minded than we think (or than they used to be) once we know their preferences/rules/way of thinking/doing things. ;)

Doc

Doc,
I do so appreciate your kind comments. I am a bit nervous, my appt is tomorrow and I have written out a letter to remind me of my symptoms and past experiences considering this has been a period of over three years. I guess my disappointment lies in the fact that this has been misdiagnosed for so long.
You are awesome to be so considerate and understanding. Compassion falls short in society now-a-days so I really do appreciate it when it's given.
Sincerely, Vigi

I've had a few misdiagnoses over the decades. I've also had more doctors and discussions with doctors than I ever wanted to.

Sometimes we forget, or aren't aware, that a medical diagnosis is an educated best guess - an interpretation - based on evidence (symptoms, tests) knowledge, and experience. This also means that a misdiagnosis may not be a mistake; the doctor(s) may have done everything correctly with no reasonable way of knowing that their interpretation was incorrect. It's also possible that they just know more/better now than they did then. Some say that's why medicine is called a "practice". It's certainly why it's sometimes prudent to get a second (or third, etc.) opinion.

http://en.wikipedia.org/wiki/Medical_diagnosis

I'm a believer in the Japanese business adage, "Fix the problem - not the blame". It's never been productive for me to dwell too much on those misdiagnoses, but to deal with what things are and proceed accordingly.

Doc

Hello vigi
 

I will be thinking about you during your appt. I hope that the mis diagnosis can be corrected. You were also right about society in general lacking in compassion. There is not enough of that going around. However, right here makes up for much of it. At least in this place, at this time, we have each other, and because of our medical problems, compassion rules! I really hope your doctor will get you back on track and having a normal life. ginnie

...Although it's been said many times, many ways....

There are purportedly over 100 variations throughout history....
-- Sources various

Doc

Re: doc, good thoughts
 

Hey Doc, thank you for writing those ideas people have said about our treatment of each other. I wish sincerely, that our world would do a better job. My son works as a OPT in a nursing home. So many are abandoned by families. We do not revere our older generations like we should. We, the hurt, the disabled, the poor, we at least have each other here, and for that I am so grateful. If we could get the rest of the world to care about each other the way we do here on NT, I believe the worlds problems would be solved. ginnie

Hi Doc question
 

I need to post a question on the front page, to start a new thread. I have forgotten how to do this. Can you refresh my memory? ginnie

Ditto, ditto, ditto! The way this country/the system/some families treat the elderly is shameful!

Ditto, ditto, ditto! The way this country/the system/some families treat the elderly is shameful!

Left side of the page just above Sticky threads is a button: New Thread ;)

Doc

Re: sticky?
 

Went to the New posts page, where thoughtwas the place to go to start new threads. I didn't see anything on the left side of the page that said sticky, nor above it new posts. MrsD sent the address, but I don't know how to cut and paste that address eithor. This PC stuff gets me utterly confused. I never used a PC before coming to NT. What should I go to for my opening screen to see this "sticky" sorry to am not that great on the PC, I truely am trying to learn. ginnie

Ginnie,

Maybe I misunderstood your question. I thought that you wanted to post a new thread to this forum, Spinal Disorders & Back Pain, in which case, the New Thread button is on the left side above the Sticky Threads.

I've never used the New Posts feature - hold on....

Ok, that New Posts page lists all the new posts in ALL of the forums since the last time you logged on (or read posts - I'm not sure). That page is not a Forum Page, so there is no New Thread button on it, nor on the NeuroTalk Support Groups (Home) page. You can always get back to the NeuroTalk Support Groups page from anyplace - the link is at the top of every page right under where it says NeuroTalk at the very top.

To post a new thread, you must be on one of the Forum Pages (to post the new thread to that forum), accessed via the NeuroTalk Support Groups page OR if you're on that New Posts page, click on the forum you wish to post the new thread to on the righthand side of that page, then look for the New Thread button on the left side of the Forum Page above the Sticky Thread titles (if the forum has any - most do).

I hope this is clearer; hang in there - we'll get you there! :D

Doc

Thank you doc
 

I will keep your entire post for reference. It did make it easier to understand some of the issues I have with navagation. I drive my son nuts, as I am always wanting him to teach me something else, when he would rather just "do it" himself, rather than taking the time I need to learn. Hum...
I imagin I will have alot more to learn. thanks, I never played vidio games either! ginnie:D

I have, and had to quit; they induce too much stress and aggravate most of my pain issues. I've always enjoyed regular board & card games more anyway for the social interaction/aspects.

Doc

I also had a leak after a tethered cord release surgery but fortunately it was found months after the surgery and repaired. However, I never had headaches which was amazing to my Dr since I am a migrain sufferer. I wish you all the luck in the world!

Hi Gareth, My husband had a spinal leak back in 1987. A neurosurgeon, Dr. John Raggio from Lake Charles, La is the dr who went in and fixed it. My husband did not have anymore problems with it after that. I believe he is still in practice there. He is a very good dr (he is prob the best or one of the best in that area) but does not have a good bedside manner (kind of gruffy) and also, if you are a smoker, he will not touch you. Good luck on finding a good dr. and God Bless

Sorry, didn't realize the date of your post lol. I am sure by now you have gotten that fixed!