Author |
Topic: occipital nerve stimulator - help please (Read 888 times) |
|
Connie2
New Board Junior
Gender: 
Posts: 74
|
 |
occipital nerve stimulator - help please
« on: Apr 7th, 2004, 9:28pm » |
 Quote  Modify
|
can anyone provide info on this procedure and or results? my neuro just suggested the procedure to me and i'm considering it. any and all info would be of great help. thanks, connie
|
| « Last Edit: Apr 7th, 2004, 9:59pm by Connie2 » |
 IP Logged |
|
|
|
Lizzie2
CH.com Alumnus
New Board Hall of Famer
"L'Chaim"~Hebre w Toast~"To Life"
 
Gender:
Posts: 4458
|
|
Re: occipital nerve simulator - help please
« Reply #1 on: Apr 7th, 2004, 9:42pm » |
Quote Modify
|
Connie,
I personally don't know anything about it, but I've heard Dr. Young say it has helped somebody before. I don't know what kind of headaches she had, though. Hopefully someone else can be more helpful!
Lizzie 
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve simulator - help please
« Reply #2 on: Apr 7th, 2004, 9:50pm » |
Quote Modify
|
Thank you Lizzie,
It's nice to hear from you. I'm really getting hit bad. how are you doing?
|
|
IP Logged |
|
|
|
Lizzie2
CH.com Alumnus
New Board Hall of Famer
"L'Chaim"~Hebre w Toast~"To Life"
Gender:
Posts: 4458
|
|
Re: occipital nerve simulator - help please
« Reply #3 on: Apr 7th, 2004, 9:58pm » |
Quote Modify
|
Also having a really rough time lately!! I did have a good neuro appt today though over in NJ. I'm going to start a prednisone taper tomorrow or the next day hopefully. I think we'll just keep trying things and see how it goes!!
I might switch back to Jefferson Headache Center when I'm a student at Jefferson. I don't know yet...
Hugz,
Lizzie
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve stimulator - help please
« Reply #4 on: Apr 7th, 2004, 10:02pm » |
Quote Modify
|
I hope that your prend taper goes well and that you have pf time and rem time. Get your behind back to Jefferson girl. It really is a good place. Have you met Dr. Joshua Khoury?
|
|
IP Logged |
|
|
|
pubgirl
Guest
|
|
Re: occipital nerve stimulator - help please
« Reply #5 on: Apr 7th, 2004, 10:06pm » |
Quote Modify
 Remove
|
Connie
Go to the OUCH UK message board(www.clusterheadaches.org.uk) and you will find a long thread there about the guy in the UK who has had the procedure at the London Institute of Neurology supervised by Prof Goadsby.
He is usually very happy to talk privately to anyone who is considering having it done.
He was the first in the UK to have one side done, and has just had the other side done with so far (touch loads of wood for him and hoping not to tempt fate as he has suffered so very badly for so many years) very promising results (early days yet though)
Wendy
|
| « Last Edit: Apr 8th, 2004, 4:02am by pubgirl » |
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve stimulator - help please
« Reply #6 on: Apr 7th, 2004, 10:10pm » |
Quote Modify
|
Thank you Wendy. Will do! I appreaciate your response very much. I'm a bit apprehensive.... Thanks again. Connie
|
|
IP Logged |
|
|
|
Lizzie2
CH.com Alumnus
New Board Hall of Famer
"L'Chaim"~Hebre w Toast~"To Life"
Gender:
Posts: 4458
|
|
Re: occipital nerve stimulator - help please
« Reply #7 on: Apr 7th, 2004, 10:12pm » |
Quote Modify
|
Connie,
I never met him but someone on another headache site was talking about how great he was with their spinal tap! So far, things are going pretty well over in NJ, but there are some things I miss about Jefferson...and some things I don't!! LOL
Lizzie
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve stimulator - help please
« Reply #8 on: Apr 7th, 2004, 10:25pm » |
Quote Modify
|
yes, he is a great doctor. he will bend over backwards for you and he also did my spinal tap and was very gentile. he did my botox and was patient and gentile with that too. 20 inj to the head isn't fun. he's pretty darn cute too. the botox didn't work. they are increasing my topomax to 800 mg a day. i'm going to be pretty stupid!
|
| « Last Edit: Apr 7th, 2004, 10:26pm by Connie2 » |
IP Logged |
|
|
|
Lizzie2
CH.com Alumnus
New Board Hall of Famer
"L'Chaim"~Hebre w Toast~"To Life"
Gender:
Posts: 4458
|
|
Re: occipital nerve stimulator - help please
« Reply #9 on: Apr 7th, 2004, 11:09pm » |
Quote Modify
|
Wow 800 mgs?? Nuts! Actually that is one of the reasons I left there. They never changed my meds...just kept on increasing them. They stopped trying new things after awhile... Really bugged me! At UMDNJ, they try something new almost every month if the other things aren't working. Very helpful!
I think that doctor must have started there after I left at the end of the summer. Dr. Silberstein did my botox the first time....it was actually more funny than anything! hehe
Take care,
Lizzie
|
|
IP Logged |
|
|
|
Eeyore
New Board Newbie
This is my corner, get your own...
Gender: 
Posts: 38
|
|
Re: occipital nerve stimulator - help please
« Reply #10 on: Apr 8th, 2004, 2:46am » |
Quote Modify
|
Unfortunately, as I read in another post, it might be impossible to view the OUCH UK message board unless you pay a fee. They might not have put it in effect yet, but if that is the case, I pulled this link for you from the OUCH US site...
Occipital nerve stimulator...
http://www.clusterheadaches.org/library/surgery/occipital_stim.htm
I also pulled these as well, cause if you gonna look at that you might as look at these too. They are pretty interesting... Some things I must truly consider if the Clusterbusters treatment does not work for me...
Occipital Nerve Block...
http://www.clusterheadaches.org/library/surgery/occipital_block.htm
Stereotactic Stimulation...
http://www.clusterheadaches.org/library/hypothalamus/wire_in_brain.htm
Hope this helps a little...
- Eeyore -
|
| « Last Edit: Apr 8th, 2004, 3:10am by Eeyore » |
IP Logged |
I just believe in one fewer god than you do. When you understand why you dismiss all other gods, you will understand why I dismiss yours.
|
|
|
pubgirl
Guest
|
|
Re: occipital nerve stimulator - help please
« Reply #11 on: Apr 8th, 2004, 3:49am » |
Quote Modify
Remove
|
Connie can go and see it right now if she wants, without being a member. It is the first string on the meds board (sorry Connie, I'm crap at links)
The value of the UK man's information is that he is telling it as it happens. And Connie, if it helps he describes how it was done and how little it hurt!
If, please God, his current state of health continues, this is an enormously exciting development for chronics.
We owe this guy and the team at Queen's Square an huge debt of gratitude if that is the situation. There are now other chronic patients lined up for the procedure as well.
Praying here
Wendy
|
| « Last Edit: Apr 8th, 2004, 3:51am by pubgirl » |
IP Logged |
|
|
|
Eeyore
New Board Newbie
This is my corner, get your own...
Gender:
Posts: 38
|
|
Re: occipital nerve stimulator - help please
« Reply #12 on: Apr 8th, 2004, 4:26am » |
Quote Modify
|
on Apr 8th, 2004, 3:49am, pubgirl wrote:| Connie can go and see it right now if she wants, without being a member. |
|
That's weird, When I go to the OUCH UK message board...
(Link provided here...http://www.ouchuk.org/cgi-bin/yabb/YaBB.cgi?added=04/01/04)
It says...
Quote:| Only registered members are allowed to access this forum. Please login below or click -here- to register an account with OUCH (UK) Message Board. |
|
Can one still register as a member and view the forum without creating an account and paying? I only assume that by saying that one needs to create an "account," it means to pay, correct? I would think if it you didn't have to pay it say something like, "profile." I don't know, I'm asking. Ya'll just might say it in a different way over there in the UK.
Thanks - Eeyore -
|
|
IP Logged |
I just believe in one fewer god than you do. When you understand why you dismiss all other gods, you will understand why I dismiss yours.
|
|
|
Eeyore
New Board Newbie
This is my corner, get your own...
Gender:
Posts: 38
|
|
Re: occipital nerve stimulator - help please
« Reply #13 on: Apr 8th, 2004, 4:58am » |
Quote Modify
|
Looks like I answered my own question.
I went ahead and filled out the registration form for the board and the issue of money never came up, except for the question about donations and if I was a paying member already.
I got my username and temporary password in my e-mail, but unfortunately, the administrator has to approve all of it before I can view anything.
Bummer. I'll hopefully be able to look at it tomorrow.
- Eeyore -
Update: Oh, Oh, Oh... wait a minute, I just got approved 7 minutes later in the e-mail, well that was much faster than I imagined.
Good deal, a whole new board of info at my disposal. And yes I promise, no shroom talk. Hell, I probably won't even post.
Talk to ya'll later. - Eeyore -
|
| « Last Edit: Apr 8th, 2004, 5:04am by Eeyore » |
IP Logged |
I just believe in one fewer god than you do. When you understand why you dismiss all other gods, you will understand why I dismiss yours.
|
|
|
Eeyore
New Board Newbie
This is my corner, get your own...
Gender:
Posts: 38
|
|
Re: occipital nerve stimulator - help please
« Reply #14 on: Apr 8th, 2004, 5:16am » |
Quote Modify
|
Pubgirl is right. That thread is very interesting over there on the OUCH UK message board, and I've only read the first page.
If any of you out there are interested in occipital nerve stimulators, and you have not checked out the thread at the OUCH UK message board, you have to go register and check it out.
Thanks Pubgirl!
- Eeyore -
|
|
IP Logged |
I just believe in one fewer god than you do. When you understand why you dismiss all other gods, you will understand why I dismiss yours.
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve stimulator - help please
« Reply #15 on: Apr 8th, 2004, 5:33am » |
Quote Modify
|
I registered but the admin hasn't allowed me in yet but I can't wait to read about it. I pulled some info about it off of the web so far. Your support is wonderful guy's. Thanks bunches. Con
|
|
IP Logged |
|
|
|
pubgirl
Guest
|
|
Re: occipital nerve stimulator - help please
« Reply #16 on: Apr 8th, 2004, 6:00am » |
Quote Modify
Remove
|
Let me know what you registered as and I will try and speed it up
W
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve stimulator - help please
« Reply #17 on: Apr 8th, 2004, 6:24am » |
Quote Modify
|
Wendy,
I was just there and read everything. It sounds like a pretty good deal. Thank you very much for guiding me towards that site. No more liver killing drugs! I would want it installed on both sides right away and the only thing that frightened me is this bit... The implants aren't without risk, the FDA warned. About 7.5 percent of study participants experienced bleeding in the brain, 11 percent had an infection related to the device and 10 percent experienced some paralysis however 7.5 is a low percentage. These things are killing me now. Wendy I'm going to have it done. Thank you for your help and I'll keep posting on my progress. Connie
|
|
IP Logged |
|
|
|
pubgirl
Guest
|
|
Re: occipital nerve stimulator - help please
« Reply #18 on: Apr 8th, 2004, 6:38am » |
Quote Modify
Remove
|
I am stunned by what you have posted about the risks.
It doesn't actually get implanted in the brain, so I can't understand these stats.
Are you sure they are for the ONSI procedure and not for a deep brain implant of some kind?
Wendy
P.S. If you private message me your email address I will ask the guy in the UK if he will talk to you before you have the procedure done.
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve stimulator - help please
« Reply #19 on: Apr 8th, 2004, 9:49am » |
Quote Modify
|
Yes Wendy, I read it on his thread. It's 14 pages long. They install the battery pace maker type thing behind your collar bone and then the wires in your neck at the base of your brain. If the stimulator is only installed on your CH side then your CH moves to the other side of your head with a vengence which is why I want it installed on both sides right away. Then you go through a period of pretty bad attacks for about 3 or 4 months until the tissue hardens around the wires to keep the wires from moving around and then you start seeing signs of relief. Connie
|
|
IP Logged |
|
|
|
pubgirl
Guest
|
|
Re: occipital nerve stimulator - help please
« Reply #20 on: Apr 8th, 2004, 10:20am » |
Quote Modify
Remove
|
Connie
I'm aware of all that, I know him, have even felt his powerpack if you get my drift 
I meant the stats you got from the FDA about the risks. They seem very odd to me as risks associated with the ONSI. Did you read that on the UK thread, if so , I have missed it.
I have certainly never heard of anything as serious as they are suggesting, and very, very few ONSI's have been done so I wonder where they got their information from.
The nerve stimulator is subcutaneous, not in your brain itself at all, it is all done under local anaesthetic so it is not invasive at all so brain bleeding and paralysis would seem really unlikely.
I was just checking that that 7.5 % you quote refers to ONSI's
Wendy
P.S. I think all ONSI's might be done now on both sides, the one-sided ones were a few years ago.
Wendy
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve stimulator - help please
« Reply #21 on: Apr 8th, 2004, 11:01am » |
Quote Modify
|
Wendy,
Thank you for putting my mind at ease. I'll go back and review. At Jefferson in Phili I was told that there were very few risks involved. I'm hopeful and grateful for this suggestion and possibility. Are you Chronic? Have you looked into this option? (if you don't mind me asking) and yes, if you have developed a repor with him I would be grateful if you would ask him about the risks involved with the procedure. It's all a little frightning when your are talking about going under the knife in that area. Many Many Many. Did I say Many? Thanks
Lots of hugs to you! Connie
|
| « Last Edit: Apr 8th, 2004, 11:11am by Connie2 » |
IP Logged |
|
|
|
Tiannia
New Board Hall of Famer
Life does not apologies......
Gender:
Posts: 3241
|
|
Re: occipital nerve stimulator - help please
« Reply #22 on: Apr 8th, 2004, 1:21pm » |
Quote Modify
|
As I said on the other thread, please talk to Unsolved. He had a temp on e installed. This was a test to see if it would help him and make sure that it iwas safe. He is very helpful about hte procedure and how it assisted with his chronic CH
-Tia
|
|
IP Logged |
The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
|
|
|
pubgirl
Guest
|
|
Re: occipital nerve stimulator - help please
« Reply #23 on: Apr 8th, 2004, 1:25pm » |
Quote Modify
Remove
|
Tia
Unsolved's wasn't successful I thought according to him.
They must do it differently over there though because there's no such thing as a temporary one here, as it takes a while for the wires to "bed down" as it were and to get all the settings right.
Connie
If you message me wih your email address (I will keep it private) I will pass it on to him and he will contact you. I am going away tonight though so it will need to be soon.
Alternatively just contact him direct via the IM system on OUCH UK, I'm sure he won't mind a bit as he is always happy to help people.
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: occipital nerve stimulator - help please
« Reply #24 on: Apr 8th, 2004, 5:04pm » |
Quote Modify
|
Tia,
Thanks,
Connie
|
| « Last Edit: Apr 9th, 2004, 5:36am by Connie2 » |
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss