Fiona I do hope you DONT lose some of your sight. I can only imagine how you must be feeling at the prospect of him even considering taking them out So glad to hear you have been tweaked and its been helpful.
Im hoping to hear before Xmas whether I will have another session. I do feel that the leads are scarring in somewhat as the sensation is quite localised compared to when they were first implanted......so Im hoping my next session will be another improvement

Haven't heard from you in quite awhile!

Please check in dear Fiona!!
My imagination is starting to get the best of me

Was your Dr able to present your case in the National Conference?

I PRAY you are getting some answers!
Please let us hear from you!

Rae

How can I have gone on and missed this issue with which you are dealing? Oh my goodness!!!! This is VERY concerning, and I am praying for you in this situation. I can understand you do not want the implants removed, and hope your doc can get real valuable input at the conference. The issue about a risk to your eyesight is so frightening! You are for sure on my list!

Prayin,
Mark56

Hey, my friend!

I know this thread is a couple months old but....
I'm up late and was introducing a new member to the CSF Leak forum and I was reading some of the testimonies over there...
I was amazed at what some of these folks have to deal with when they get a puncture in the dura!

I remember that when I had my implant, the medical team made it known that it is (rare) but possible to get a CSF leak while getting the leads inserted.....

I ran across this particular thread that jumped out at me and I couldn't help but think of all that you've been going thru. Do you suppose it could be possible that you've had some sort of puncture which may have caused some sort of CSF leakage? Ok, not only that, but look at what this guy is saying....
I copy/pasted a small portion of his post in which he was explaining about a csf leak that was inadvertently fixed on it's own.....but 'PRESSURE' built up....
well, here - read this....
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >>
Here's the REAL intereting part: the plugs apparently moved mucosa over the leaks and the leaks stopped! It's been a month and half w/no leaks, but the pressure behind the leak loacation is very uncomfortable and the lumbar punctures didn't help.... >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >

I know this must be a complete shot in the dark, but I thought I'd run it by you........ here's the whole post :
http://neurotalk.psychcentral.com/post696271-17.html

Just thought I'd throw this out there, especially since he was talking about this 'pressure'....heck maybe some wierd fluke such as this could have happened ?

Anyhoo, I hope you are doing well....
I better shut my brain down before I convince myself the answers to the universe are right at my fingertips.....ha

Caring
Rae

Thanks for the info. Very interesting. When both spinal taps came back normal, my opthaneurosurgeon put me in the "come in and see me in a month" category so I don't see her until the 28th. I'm very curious to see what she has to say. I'm taking it as a good sign that she isn't too worried anymore, as I could use some good news about now...but on the other hand, what's up with my eyesight going wierd???

By the way, my dr. did present my case at the Nat'l. Neuromodulation Conference, first part of Dec. in Vegas. He has this 4 foot X 6 foot poster on his office wall that discusses my case, has photos of my incision being done, etc. I offered to autograph it for him but he doesn't like his posters being messed with.

I'll let you know how it goes with my opthaneurosurgeon.
Stay tuned...same Bat time, same Bat channel...

Here's hope your opthaneurosurgeon will be on top of this issue. Having your eyesight go weird has to be frightening!

Prayin,
Mark56

Yes, let's certainly hope this upcoming appt sheds some light.
I'm sorry about the eyesight issue! Do you get headaches ?

Am glad to hear that your case was presented at this conference. This speaks volumes. It's good to know that these conditions are taken seriously enough to bring to the attention of other specialists. To me, it brings a sense of 'hope' and puts a positive twist in the mix.

I pray that all this frustration you are facing will come to an end!