Electical Implant for Occipital Neuralgia

[Shelly2628]

I was diagnosed with Chiari 1 Malformation of the brain. I have been on this website before and it has been a long time since I have been here. I underwent a decompression surgery with C1 laminectomy in August of 2007. Little did i know that the surgeon was NOT a specialist. Since then I have moved from Wichita, Kansas to Littleton Colorado and visited with a Chiari Specialist named Dr. John Oro. He ran some more tests, MRI, CSF flow study ETC. I have been in SO much pain everyday and I am on medications, but they only help a tiny bit. Dr. Oro is referring me to a Occipital Neuralgia doctor to have a electical implant in my occipital nerves. I read a newsletter that hit home with me at the november 2007 issues where a lady named Kristi Helm had been going through the same issues. It was wonderful to hear her story. I was wondering if anyone else has had this implant done. If so, what can I expect? Any advise would be great!!!  ???

[*Stormy*]

Hello and welcome,

I would recommend trying to connect with others here that are experiencing the same thing. There have been several posts lately concerning occipital neuralgia and occipital nerve blocking. If you scroll down, you should find some of the posts but if you don't try using the "search this community" box on the left hand corner of this screen. It would be really advantageous for you all to share your experiences and what works and what doesn't;

Good luck!
Carolyn

[leigh2791]

Hi,

My name is Leigh, I recently traveled to colorado to see Dr Oro also in almost the exact same circumstances...

Had decompression surgery for chiari in 2002..the last 2 yrs have been hell!! Went to Dr Oro he sent me to a specialist in Portland Or Dr Burchiel for occipital nueralgia...
The Dr was not impressed with the surgery that had been done...(The dr who did the original surgery happened to be one of his former interns.) His office is currently trying to get approval from my insurance co to do a dble implant... and I must admit I'm more then a little scared...

[selmaS]

Hi and welcome to the Chiari forum.

Since this is an older post u may want to PM Shelly...I am not sure she has posted since this one...

Out side that we r  happy to have u join us, but not happy for the reasons that bring u.

I do not know much about this procedure or how it worked for Shelly....if u do get more info I hope u would share it with us : )

"selma"

[*Stormy*]

Hello and Welcome,

I am just wondering what type of issues you have with your vision that has lead to using this stimulator? I am almost a year post op and I still have a number of visual issues. I would be very interested to hear what you have been going through as I have never hear of this stimulator before. I have been to several Ophtha's and they all say that my actual eye health is fine so the disturbances I am experiencing must be due to the processing in my brain. Very recently, at the rehab clinic, they explained to me that some of the visual information is processed by the cerebellum and that it if is behind (as my coordination to my limbs is) that it could cause a lot of the issues I am having.

I would be really grateful if you would share your experience!

Carolyn

[funkycolma]

Shelly, I too had decompression surgery and am told that I have occipital neuralgia from it. it was suggested to me to get the nerve stimulator, but I'm very hesitant. I was wondering if u had it implanted and how it was working for you.

[selmaS]

Hi Shelly and welcome back to the forum.

I am so glad to hear the option of this implant is a positive for u.

And many of us here have been told that drs that r not specialists can do the surgery, but do not have the experience to deal with all that may crop up during a procedure.

Dr Oro is one of the best in the country and I am sure whomever he referrs u to will be just as good in his/her field.

Please update us on the method, I have never heard of it.

Good luck collecting info and on the procedure.

"selma"