CSF Hypovolimia

I went to my neurologist a couple of days ago, and he told me that all these symptoms of POTS could be due to a CSF  leak from my spine.  He wants me to do an epidural blood patch to see if the symptoms go away, and if that is the case then he has to look to see where the leak is in so that he can repair it.
Has anyone heard of this as being a possible cause of all our symptoms?  Has anyone ever had a n epidural blood patch?
I don't know what to do,
Thank you
Maritza

[enzymelover]

There is a medhelp poster whose husband had syncope and a CSF leak, who was given a blood patch more than once, I think. Her user name is binder58. I think she would be happy to explain the process to you. I have not seen her on the forums in awhile though, and I do not know how her husband is doing now.
I wish I had more info for you, sorry.

[Heiferly]

Maritza,

My short answer?  No, I've never heard of it.  :-/  If I were you I would ask about the risks involved with the procedure, and if you're concerned, get a second opinion before moving forward considering it's not something we typically hear of with regard to dysautonomia symptoms (at least I've never come across it in all my reading/talking to people here and elsewhere online that I can recall).  

If you do get a second opinion and they say go for it, who knows?  If there could be a permanent fix to your symptoms, well ... if it were me I'd certainly at least look into it.  Sorry I don't know more information to tell you; maybe someone else here will,

-Heiferly.

[mtgardner]

I had not heard of this either but I found this medical article about a form of CSF leak that can cause headache and which is often misdiagnosed.  The article refers to the blood patch test and explains more about CSF so it might be a good starting reference.

http://serendip.brynmawr.edu/exchange/node/1688

In looking for information I came across a few posts made earlier this year on other forums by people with POTS diagnoses who were being checked out for CSF leaks. I have never heard anyone on this forum talk about it.  

Let us know what you find out and I hope this is helpful.  Marie

[enzymelover]

There is a medhelp poster whose husband had syncope and a CSF leak, who was given a blood patch more than once, I think. Her user name is binder58. I think she would be happy to explain the process to you. I have not seen her on the forums in awhile though, and I do not know how her husband is doing now.
I wish I had more info for you, sorry.