Neurostimulation for Occipital Headaches

[Mei Mei]

Yes, I was disappointed that she said that about me and my Titanium plate.   I don't know why.

Good news.   I was in a motel last night in NJ and didn't have a headache last night.   Maybe it has something to do with being near the ocean and breathing in the ocean air.   Allergies might have something to do with it.   I'll have a lot to tell the neurologist when I get back on Tuesday.

Mei Mei

[tenai98]

Mei Mei
Before my surgery I was in Mexico and my tinnitus went away...So maybe ocean air has something to do with it
JO

[brp51d]

I have not posted in sometime but regularly check these boards for information and support. Its reassuring to know that I am not alone in dealing with the aftermath of this difficult syrgery. The most serious problem for me since my January 2009 surgery has been headaches. The device described in these posts is a trial unit used to determine suitability for an implanted neurostimulator. I finished a four day trial yesterday. The results were excellent and I am having the implant done in two weeks. I have tried everything else without success except nerve blocks and botox which my insurance company would not approve. Fortunately they did approve the neurostimulator. Although I sam not thrilled about more surgery, I am excited about the prospect of relief, especially without the side effects of medicine. The trial was easy and the surgery is day surgery. For those of you who have had difficult to treat , severe headaches, this is an option you should at least explore and get more information about. Best of luck to all of you. I will check in with an update on the permanent device. By the way, the device can be removed in the future and is not necessarily permanent.

[brp51d]

Just a note, the 5lbs restriction is a temporary post procedure restriction. It is not a long term side effect. Once the procedure is done and healed, there are no restrictions to activity. Neurostimulation has been used to treat migrain and cluster headaches for about 6 years. Although it is still a relatively new treatment, it has had about a 70% success rate. The trial which does involve a wire connected to an external device was very easy, not very uncomfortable and is ussually a good indicator of the likely success of the implanted neuro stimulator. Clearly, this is not for everone. I chose this route because nothing else worked and I had many sde effects from medications which gave me no real relief [other than pain killers which are not a long term solution].

[staypoz]

Please do keep us posted.  Your positive experience is very encouraging news.  My doctor is encouraging me to undergo this and I am leaning toward this treatment option because it is reversible and doesn't alter any anatomy.  Can you share with us where you are having this done and the kind of implant you are getting? 

Good luck to you and thanks for posting!

staypoz

[brp51d]

I am having this done at Northshore University hospital on Long Island, New York. I have an outstanding neurosurgeon. The device is made by a company called medtronics. A representative from the company gave me great support and assistance during the trial. I found out about this when my wife saw an article about it in a newsletter from the hospital. In fact in the 24 hours since the trial device was removed my headache pain has increased again dramatically. I started to feel relief during the trial within a couple of hours. During the next two days the pain was reduced by about 75% which was a tremendous relief. I'll post with updates once I hace the device for a few days.

[Captain Deb]

brp,
Thanks so much for the information!  We are all excited to hear about your results.  Can I ask where your headaches occur (frontal, temporal, occipital) and what surgical approach you had and the size of your tumor?  Not being nosey, just curious to compare symptoms.

Good luck,

Capt Deb

[Captain Deb]

Here's an article on the Medtronics neurostim for migraine

http://wwwp.medtronic.com/Newsroom/NewsReleaseDetails.do?itemId=1214482108297&format=print&lang=en_US

Capt Deb

[Mei Mei]

BRP,
Thanks for contributing all of this.   I was really nervous about this treatment especially when the DVD didn't mention headaches at all but mentioned only pain in the Trunk and extrmities area only.  It was not from Medtronics but from St. Jude's.   I suppose the doctor has a different supplier.   Medtronic is a well known device manufacturer on the medical scene and well trusted.  I'm impressed with your results and relief.   Your symptoms sound the same as ours so we are all very interested to hear about your experience.  I'm sorry to hear that you weren't getting good results with Botox which I was getting ready to try next.

I've been using Benedryl and Zyrtec instead of Verapamil for the past three nights with excellent results ( no headache!!)  though a headache during the day because I didn't take anything at all.  But prior to that all my headaches or the majority of them were in the night.

JO:  That's great news about the Tinnitus...You should stay by the ocean.  That's also where I get allergy relief.   It may be an allergy problem.   

Stay in Touch!    Mei Mei

[cin605]

MY tinnitus alsp disapeared in Mexico...but when i got back full force.

[Mei Mei]

It must have something to do with the climate and the dry weather.   Is it dry in the parts of Mexico where you both went?   Mexico is close to Arizona and people with allergies are told to move to Arizona for the asthma, maybe we should move there for the tinnitus and the headaches.

Mei Mei

[Captain Deb]

Last night I did much research on the medtronics device and I am going to talk to my back doc the next time I see him to see about an implant for my back pain.  I wonder if they could implant another array in my occipital region, which I am still having problems with.  I'll continue to research and see if I can find a pain clinic at Duke or something where I can get a consult.  I want my life back!!!!  If technology can give me this it will be a true miracle.  My back pain, which I have had for 16 months causes me much stress and triggers my migraines.  Maybe I can kill two birds with one stone!

Capt Deb

[cin605]

I am off to physical therapy tomorow w/ same woman that helped me w/ vestube rehab....hoping to get some relief from ths excruciating neck pain.....she used some ulrasonic waves last time i think it may be close to the tens unit .....also some nassage.....then in the next couple weeks if this fails i am goiing back to give the nerve block shots a run.

[brp51d]

My headaches generally start in the back of the head. The worst end up behind one or both eyes. I have had severe pain in various parts of the head since [but not before] my surgery. My AN was 3.5cm and was completely removed by retrosigmoid. My surgery was done by Drs. Jafar Jafar and Kohan at NYU Medical Center.

While I am not thrilled about more surgery,I am very optimistic about the neuro stimulator. Since the removal of the trial device on Monday, my headaches have come back full force. I think this is a solution that has great potential and will avoid the side effects of long term medication use [which did not work for me anyway]. The few days of the trial gave me the first real relief since the surgery. I feel that it is at least an option that should be explored and considered. Thanks for the feedback. I am happy to share my experiences and answer any question you may have.

[Lizard]

This sounds very promising, I can't wait to hear if it helps!
Liz