Friday, February 05, 2010 Laura jeanne Stack asks

Q: I have had many preventive drugs;none worked. I then tried occipital nerve stimulation.

The first nerve simulation worked for 3 months. No pain at all. Then the leads fell off and the pain came back. They took the leads off the nerves but left the wires and the stimulator in my back. At some point the wires poked through the skin and I got a pseudomonas infection and was in the hospital with IV antibiotics for aboout 5 days. They tried to blame it on me. They also told me they never heard of the term lead migraition (false). A year later I was still in so much pain that I let them do it again with a different connection to the nerve. This one never worked and 4 years later it is still there (I lost my insurance at the same time). I still feel that they have a duty to take it out at their expense because they lied to me in many ways. They never told me it was not FDA approved. They lied about "lead migration" and the staff was clearly on the defensive. This is a well know Pain Clinic in SF but I have since read many reviews about it and almost all are bad. Any suggestions?

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Answers (3)

Teri Robert, Health Guide

2/ 6/10 6:29am

Laura,

It sounds like you've found the main issue with occipital nerve stimulators for Migraine -- the leads don't stay in place. That's the major problem occurring in the clinical trials. Makes me wonder if it will make it through the FDA approval process. I have to say that I'm amazed your insurance company paid for the stimulator IF your doctor put Migraine on the paperwork as your diagnosis. Since it doesn't have FDA approval, I've not seen any insurance company pay for it unless the doctor had fudged the diagnosis.

The only suggestion I have for getting them to make things at least partially right by removing the stimulator is to consider filing a complaint against the doctor with the state licensing board.

As far as your Migraines are concerned, I truly think the best thing you can do is get yourself to a good Migraine specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. I'm sorry to say that pain specialists generally aren't a good solution either. Very few of them know much about Migraine. Their primary goal is to manage pain, but that's not the best goal of Migraine management. As you know, it's just as important to prevent Migraines as to treat the pain and other symptoms. Pain management specialists seldom know much about Migraine prevention, Migraine abortives, and total disease management. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists. There are some very fine Migraine specialists in the SF area.

Please keep me posted?

Laura jeanne Stack

2/ 6/10 7:00am

Thank you Teri,

Yes, I have learned the difference between migraine specialist and pain management and neurologists. A Dr Belaga, in SF, is supposed to be a migraine specialist and he is also doing Botok. I am about to try that. Yelp gave him many good reviews. It would be interesting to see what they did put down for a diagnosis. I wonder if they did flat out LIE, not fudge.Yes, I have thought about threatening them in some way, especially since I got a serious pseudomonas infection because they left the wires running down my spine and they poked thru right before I was about to have everything hoked up again. They tried to blame it on me. I should have sued them then. Thank you. But haveyou ever heardof some having daily migrianes from the age of 50 to 60? The year before I was hit I actually had very few migrianes and was running for 2 hours everyday, rain or shine. Then whammo, I was hit by a migraine that just never went away and Imitrex, my miracle drug no longer worked. I was in hell. Good luck to everyone out there.

mamalu

2/ 5/10 8:08pm

wow I am so sorry for all this pain. It sounds very frustrating... I never had nerve stimulation. Would you mind explaining what and how its done.. Good luck to you I hope you get some relief.

Laura jeanne Stack

2/ 5/10 8:24pm

Occipital nerve stimulation is where they insert a battery into your body than attach wires from the battery to the occipital nerve/ You then have a remote control that when you press it at the battery point it turns the nerve on or off, and the pain is shortcircuited (I am not sure if that is the right term). It worked for 3 months until the wire leads migrated off the nerve (lead migration) and they had to take it down. It was done again a year later but they used a different connector and it NEVER WORKED. I was hoping someone could give me some idea as to how to get it out since I no longer have health insurance. I was on methadone (300mgs aday) but it never really worked very well. I am now on 300 mgs of MS Contin and it works well. I am 60 and after 10 years of chronic pain I am hoping it will finallly go away. There is something called Pharma genetics which designs drugs to match your DNA. Apparently some people do not get relief from codeine because they lack the enzyme to turn codeine into morphine in the body. It is in its infancy but perhaps this is why people respond differently to drugs.

mamalu

2/ 6/10 12:33am

thanks for that quick response.. It sounds like are having a little relief. I am hoping for you that you are right and it will be the end of your pain. What is ms contin is that like oxy contin/ I have been on that and it drugs me uo like ozzie izborne but really gives me no pain relief???Where do you go to a neuro or a surgeon and what stat r u in. I am looking for someone in chicago that is familiar with O>N> and so far no one...

Laura jeanne Stack

2/ 6/10 12:58am

MS Contin is controlled release morphine. If you only get a few migraines a month I would not take it. it is an adictive narcotic like methadone. I only started on it after the occipital nerve stimulation failed after 2 failures. I would avoid narcotics if you possiblycan but I have tried most of the so called "preventative" drugs over a 30 year period and none worked. I have also tried herb and vitamin combos, chiropratic, acupuncture. The only thing I have not tried is botok, which I am going to try as soon as I can raise the initial fee. I would not do the brain surgery unless you were having daily migraines for a long time. I still have it in me and I do not think that is good. 10 years was enough pain for me. It has ruined my life. I live in San Francisco and the Pain Cllinic that did the operation was not very nice to me when the procedure failed. They never even told me it was not FDA approved. This was major surgery and I was in too much pain to read all the facts about it. When I tried to ask them who or what they could recommend to do next, a member of their staff hung up on me! Sick people do not need to be treated like that! So find a good, kind doctor and good luck! Don't give up hope. But there is one thing I learned that really shook me. I always thought that my migraines would go away after menopause. Well, it seems that some women get MORE migraines after menopause.

Teri Robert, Health Guide

2/ 6/10 6:31am

mamalu,

Check in with Dr. Larry Robbins and Dr. Trupti Golkani. I'd be very surprised if they aren't familiar with treating occipital neuralgia. You can find their contact information in

our listing of Patient Recommended Migraine and Headache Specialists.

Megan Oltman, Health Guide

2/ 6/10 10:51am

Hi Laura -

Sorry to hear you have had such an awful time of it. It sounds to me like if the stimulator was improperly placed, and you were misled about the dangers of it, and you suffered harm from the device being left in your body, you should have a claim against the doctor(s) or medical facility that was responsible. As long as you were not in a medical study, where you knowingly assumed the risks, you should not have to suffer the consequences of their neglect.

I agree with Teri that you can complain to the State Medical Board about the doctor(s) who placed the stimulator and misled you about it. You say you "should have sued them at the time" but I would advise you to consult an attorney. I don't know how long ago the device was placed or what the statute of limitations is for medical malpractice in your state. Don't assume it's too late, especially if you still have the device in your body and are still suffering the effects of it. Get competent legal advice about your options. It sounds like you want to get results, to get the stimulator removed. You may not have to sue, but talk to someone familiar with malpractice about what the right strategy would be.

Good luck to you!

- Megan

Laura jeanne Stack

2/ 6/10 11:13am

Thank you, Megan. I have been so consumed with pain and fear of yet another operation that I have not pursued it. I am 60 and any more operations scare me. But it has to be done. Now all I have to do is find a competent lawyer, HA!!! But your advice has encouraged me. In fact, I found out later that the headache clinic was doing a study on it and one of the docs who did my op is on their board. I was nvr informed of this either. Any hints on a good malpractice lawyer in S.F. anybody?

Q: I have had many preventive drugs;none worked. I then tried occipital nerve stimulation.

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