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   Mayo Clinic & Occipital Nerve Stimulation
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MarkHW
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    mwilliams43050
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Mayo Clinic & Occipital Nerve Stimulation
« on: Jul 23rd, 2003, 10:33am »
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I had my eval at the Mayo clinic yesterday and am leaving for home later today.
 
Here's what happened.
 
I met with Dr. Gladstone & Dr. Dodick in the morning.  They went over all of my history, did some neuro tests, etc.
 
Their plan is the following:
1. Try a couple of drug combos that have not been tried before on me.  Most of the drugs have been tried, but not in combination.  The drugs in question are: Melatonin, Verapamil, Topamax, and Lithium.  The last drug (I can't remember the name) is a fertility drug that effects the hypothalmus.
 
2. Work with my Neuro back in ohio so I don't have to come back here just to get treatment.
 
3. Stay in phone & email contact with me to see how things are going.
 
4. If the drug therapy doesn't work then on to the Occipital Nerve Stimulation.
 
I then met with 2 doctors in the pain management clinic.
They went over how the occipital nerve stimulator works.
The process is the following:
 
1. attach an external wire under the skin to the right & left occipital nerve areas in the back of the head.  Go a week this way trying different levels of current, etc, to see what works best.
 
2. Implant wires that attach to the occipital nerve area in the back of the head.  Run these wires under the skin to a location somewhere on the body where the battery is installed (also under the skin).  The batter is about 3" by 4" in size and is put under the skin in the chest or stomache.  The wires are also all under the skin.
 
They told me that the downside to this is the following:
1. Wires can move in the head and have to be reattached.
2. The battery will last 3-5 years and then surgery is needed to replace it.
3. There is always a chance of infection when you inplant foreign substances in the body.
 
They said that about 1/2 the patients have great success, 1/4 have moderate, and 1/4 have none.
 
After the discussion they gave me an occipital nerve block on both sides of my head.  This is NOT to test the affectiveness of the occiptial nerve stimulators since it is a totally different process.  It was just something to try to give me some relief until the drug therapy kicks in.
 
Well.. that's it.  If anyone has any questions... let me know!
Mark
 
P.S. They also told me that they are only considering patients that are extremely resistant to drug therapy and have cluster pretty much all the time.
 
And... Dr. Gladstone specifically asked me if I was a member of OUCH!
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The clusterhead formerly known as williamsmh.
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Re: Mayo Clinic & Occipital Nerve Stimulation
« Reply #1 on: Jul 23rd, 2003, 10:38am »
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No f'in' way.  If that's what I have to look forward to...
 
pardon my french.
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never, Never, NEVER quit. -Winston Churchill
MarkHW
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    mwilliams43050
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Re: Mayo Clinic & Occipital Nerve Stimulation
« Reply #2 on: Jul 23rd, 2003, 10:43am »
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The only part that seemed yucky to me was the battery.
It is sort of large to be under the skin.  
 
But... if it's this or Gamma knife - I'll take the battery!
 
Mark
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