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Spinal Fluid Leak

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Unread 09-19-2007, 03:05 PM   #1
gareth847
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Smile 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
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Unread 06-29-2008, 12:02 PM   #2
Charlee
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Wink 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

Quote:
Originally Posted by gareth847 View Post
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
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Unread 07-14-2008, 12:04 AM   #3
kdk819
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Default 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
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Unread 08-27-2008, 04:48 PM   #4
angieo
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Default 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!

Quote:
Originally Posted by gareth847 View Post
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
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Unread 05-04-2009, 08:03 AM   #5
Cynthiagrace
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Default Repair of spinal fluid leak

Quote:
Originally Posted by gareth847 View Post
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
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.
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Unread 12-18-2011, 10:41 PM   #6
Mduvall
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Default

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?
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Unread 12-19-2011, 11:46 AM   #7
Dr. Smith
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Originally Posted by Mduvall View Post
Does anyone know of any supplements that strengthen connective tissue?
Hi Mduvall, 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
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Unread 12-26-2011, 03:46 PM   #8
Rrae
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Default 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
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Unread 01-19-2012, 11:12 PM   #9
vigipatrick
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Default 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!
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Unread 01-20-2012, 11:38 AM   #10
Dr. Smith
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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?
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
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