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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   CSF Leak (https://www.neurotalk.org/csf-leak/)
-   -   Any Leakers Out There??? (https://www.neurotalk.org/csf-leak/4143-leakers.html)

Kemaxwel 10-04-2011 12:57 PM
Out of Curiosity
 
Quote:
Originally Posted by hemyinspain (Post 811371)
Hi, Im so sorry to hear your story, it sounds almost identical to mine! I too had surgery L5/S1, during which I had a dural tear, a week later I had a massive CSF leak, and was rushed back into hospital in and out of conciousness. They repaired the leak a few days later but during surgery I contracted meningitis. 2 days later a further massive CSF leak from the repair site. but they could not operate until the meningitis was treated. Finally after 12 day they operated again to repair the leak a second time. I was in hospital 3 months in total and then sent home on bed rest. 3 days later I had what I believe to be another leak although this time the fluid wasnt actually leaving my body. It just accumilated in the back space to a size of a grapefruit. I was told there wass nothing they could do and stay on bed rest. This all happened in Sept 2007. I believe I am still leaking but am really at the end of my tether trying to get someone to believe me. I have had a radionucleotide cisternography in 2008 which showed a leak after 48 hours but still no one believes me. I am now living with the diagnosis of 'migraines'! I am trying to get a referral to see Dr Linda Gray or Dr Schievink through the British National Health service. Long battle I think but I wont give up. I so hope that you get healed and sealed and if you can see either of these doctors then that would be the best thing you could do in my opinion. Good luck I really wish you the best x
Out of curiosity are you trying to see Dr. Linda Gray and Duke University Hospital?

Irishpete 10-04-2011 05:13 PM
Chronic CSF Rhinorrea Leaker
 
Hello all. I have had a chronic CSF leak for over 16 years. Have rips in my sheniod sinus. I have had 3 unsuccessful transnasal endoscopic surgeries to try and repair.

valerie1302 10-09-2011 05:55 AM
I cant believe there are so many people living with this condition for years. I am convinced I have a CSF leak since a craniotomy to remove a benign brain tumour in March. Neurologists agree but no-one seems to be able to actually find anything. Have been referred to an Ear Nose and Throat consultant now - is that usual? Am lying in bed today having felt really dizzy for the past 3 days. My main worry of course is contracting meningitis - at least knowing there are so many people living with this for years means there is a chance I wont get it. Does anyone know the statistics for contracting meningitis with a CSF leak?

NewToBlog 10-17-2011 11:33 AM
After the surgery
 
Had my surgery four days ago. Everything went fine, they patched the dura and I felt great for 3 days. But today I woke up with the familiar ringing in the ears. Don't really know what to do: should I call the surgeon and go back to hospital? Or should I stay in bed? I will see him next week to have the staples out. I am trying to find something to help dura heal. Does caffeine help? What about enzymes? Wobenzym or vitalzym. Did you try them?

LuckyPeter 10-19-2011 02:33 PM
Quote:
Originally Posted by NewToBlog (Post 811109)
I had this surgery (L5 S1) Now I need to schedule a surgery for the leak. I'm really concerned now not to have it again as I don't even know why I had it in the first place. Some people mentioned caffeine here. Does it really help? I thought I didn't strain myself and didn't lift any heavy things after the surgery, and I still had the leak...
I would be an intelligent consumer here and start asking questions... How many times has the Dr. performed this particular operation? What were his results? Did he receive training for it in some sort of fellowship? The approach and skill set are pretty specific. I see you are in Virginia - Dr Linda Gray Leithe is at Duke Med Center near Raleigh. It's who I trust my life to.

Caffeine? Doesn't make a difference to me...

Lifting things? Sometimes, it just doesn't matter, you're gonna get the leak no matter what you do. I earned a couple of leaks after a stepped down funny off of a ladder one day.

NewToBlog 10-19-2011 08:34 PM
A week after the surgery
 
Quote:
Originally Posted by LuckyPeter (Post 816396)
I would be an intelligent consumer here and start asking questions... How many times has the Dr. performed this particular operation? What were his results? Did he receive training for it in some sort of fellowship? The approach and skill set are pretty specific. I see you are in Virginia - Dr Linda Gray Leithe is at Duke Med Center near Raleigh. It's who I trust my life to.

Caffeine? Doesn't make a difference to me...

Lifting things? Sometimes, it just doesn't matter, you're gonna get the leak no matter what you do. I earned a couple of leaks after a stepped down funny off of a ladder one day.
Thanks for your message and for the recommendation. Yes, my dr is recognized and was highly spoken of by both my Gp and two different neurologists. I trust him. Both surgeries went fine. I had no complications, went home the next day. I think each case is different and a lot depends on our post-op life style. I might have overdone it in the gym, started too soon and went too fast, maybe too much yoga. Now I know my dura is pretty thin, so iit must've been too much for it.
Well, on Friday I'll have the stitches out and will see what my doc has to say. I have an MRI scheduled in a month... Ringing in the head is pretty strong....

LuckyPeter 10-21-2011 10:28 AM
Quote:
Originally Posted by NewToBlog (Post 816503)
Now I know my dura is pretty thin, so iit must've been too much for it.... Ringing in the head is pretty strong....
Yup, I actually had to take a full year off of just about any kind of exercise to make headway... That's no joke...

Yes, I hear you ringing too :) For me, I think it gets worse when my pressure is falling... It's one of the signals I use as an early warning system that something is up. Ringing is followed by backaches and then if I don't lie down full on headaches. I don't know if you've experienced these kinds of headaches but it's the worst headache I've ever had -- it's 100X worse than the morning after way too much cheap tequila - really REALLY BAD -

cmurphy 10-21-2011 03:02 PM
My story differs slightly from what's already been posted. I too had an initial "migraines" diagnosis, but in 2009 Dr. Linda Gray at Duke UMC ( u can call DUke directly at 919 684 8111 and book an appt with Dr. Gray )found 7 tears in my dura were causing the low pressure pain. Took 14 blood patching procedures over 1 1/2 years to seal me up. Then the real culprit, HIGH pressure and underabsorption by brain tissue, was discovered. Pseudotumor cerebri is the name of the condition. It's rare but not unheard of, and in APril 2011 Dr. Gerry Grant, Duke neurosurgeon, put in a VP shunt. After initial complications (infections and then blockage) I have had good results and relief with my Codman programmable VP shunt.... until this week. Pain in my chest, along tubing route sent me to ER. no infection found in blood and no fever. was sent home with pain med Rx. I am now in contact with both doctors mentioned above (both are away at conferences, but emailing and/or calling me) to determine next step. I cannot recommend these two doctors highly enough. DOn't stop til you get to see them.

Has anyone else had chest pain from shunt catheter? It's different from infection or blockage pain.

NewToBlog 10-28-2011 07:10 AM
After the surgery
 
I don't know if you've experienced these kinds of headaches but it's the worst headache I've ever had -- it's 100X worse than the morning after way too much cheap tequila - really REALLY BAD -[/QUOTE]

Yes, I had those headaches after my first surgery in 2010. That is something hard to describe, one needs to have those to understand how bad that can be. I couldn't lift, the pain on the back of the neck was killing me. The headache would go away after I lied down. So I stayed in bed for 3 days and it went away but the leak didn't stop. We realized that much later. I was having all kinds of sensations in my head (ringing, pressure in my temples, in my ears).
Now, after the second surgery (to fix the leak), I never had those headaches but I have ringing... which might be a sign of a leak. I don't want to have an MRI right away. What for? Another surgery? I will have MRI done in 3-4 months and then will go from there...
It's been 15 days after the surgery. I'm going back to work next week.

Linda Shambaugh 11-10-2011 12:19 PM
I have had two spinal taps and four blood patches and still have not been fixed. I have been down (90% bedridden) for over 5 months. After every blood patch I feel better for about two weeks, with only slight discomfort, and then it gets worse. I have had a billion MRI's, CT scans, CT Myelogram, etc. and they can't find the leak. My last blood patch we drove & took a train 3,000 miles so that I could lay flat to see Dr. Schievink. He did a full volume blood patch. When we left LA I felt good, but within a few days started feeling bad again. This time with even greater pain in my lower back. He came highly recommended, but I would have to say that he has been hard to reach to get answers. I don't know where to turn from here....

sleepless in st. pete


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