Anybody ever had a CSF leak & needed a blood patch?

[simmyvanna]

Hello there, I am new to brain talk thanks to a friend from my hydrocephalus group, Lizard. I have to go in for a procedure today called a blood patch to repair a hole in my spinal cord that is leaking CSF fluid, has anybody had this that can give me more information, and is this painful?!! If so what is the painful part, I am scared to death, please help! :(

Thank you.
Jennifer

simmyvanna

[Bahamaroot]

Welcome to BT! You will probably get a lot of responces to your question in the CSF forum.

http://brain.hastypastry.net/forums/forumdisplay.php?s=&daysprune=&f=126

Best wishes. :)

[Nana4&cntn]

Jennifer, Welcome to BT! I have had 2 blood patches. I can tell you what they do is take blood from your arm and place it near where the leak is. I have had wonderful results and no more headaches.

Jeff directed you to the CSF forum.

I am probably too late, but hope you are staying down for the day.

Take care,
Kathy

[sis2831]

i am so glad to hear ONE person has been cured with just two patches!!! All the others i read, seem like they ahve been thru the mill and still in so much discomfort~my husband will be having his second here shortly, and I just pray that he has the same success as u!! Did you feel immediate relief>and how far apart were the patches,,,weeks, months, days??? Thank you and any other info would be great! This is two years for us, and we are both just so drained! Seeing light at the end of the tunnel would be wonderful!

[Nana4&cntn]

My patches were after LP's and on two separate occasions, years apart. I am not a spontaneous leaker.

I wish your husband all the best tomorrow. I am sure you know he needs to stay down for the day, drink caffeine and plenty of fluids!

Take care,
Kathy

[seattletmj@yahoo.com]

Dear Jennifer,

Yes I have had to have a blood patch. I hope you are not in too much discomfort at this time, because I experience much pain before the procedure. Unfortunately, the
procedure does have some uncomfortable moments, but I recommend a lot of deep
breathing and if you need a break don't be afraid to ask for one. The good news is
after this procedure is done, you will feel so much better and if you are experiencing
a headache it will go away. You will be okay, it's just one of those things you wish
you could be put to sleep through, rather than have to be awake. You'll just feel
a lot of pressure and it seems like it takes forever but in reality the procedure is over
in less than an half an hour by my experience. Try to concentrate on something else
beside what is being done to you if you can. I wil keep you in my prayers. TJ

[Jayna]

So very glad to find this site. My husband was finally diagnosed in 2007. We didn't know what to think of his symptoms. His internest kept saying he was probably depressed. He had extreme headaches, tinnitus, nausea,loss of balance, lack of concentration,unable to stay on task and even problems driving. The second MRI showed the drooping brain stem. The first neurologist referred us to a neurosurgeon who he said would drill some holes in his head. This neurosurgeon said no way and referred us to another neurologist who diagnosed him with spontaneous intracranial hypotension Chiari malformation type 1. She made an appointment for us to see Dr. Shaibani at Northwestern Memorial in Chicago. Finally someone who understood. They know he is leaking spinal fluid and had a hard time finding the leak in his root sleeve. This Wednesday my husband will have his 4th blood patch. This will be the second patch done with fibrin. His symptoms generally come back 3 months after the procedure. At the 6 month point he has another patch. We are praying that this one will take. It is an uncomfortable experience for him and he must lay still for several hours afterward. His symptoms are gone a few days later and for about 3 months all is well. It's so hard trying to find answers as well as explaining what it's like living with this. I'm sorry for all that you are experiencing and wish you the very best in your treatment.