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Unsolved
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My neurostimulator details >
« on: Jan 7th, 2004, 9:58pm » |
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Just thought I'd tell everyone at once ...
MHNI says they have to do it as an outpatient for insurance reasons. (Probably cause they'll get paid more $) They've scheduled it for the last week of this month. I'll have a 5 - 7 day trial. (The wires and pacemaker-like battery will NOT be implanted under the skin yet). Then, if it stops my clusters (or helps a great deal), they'll implant it. They asked me to get a hotel for a week and I said "no...too much cash"...so they're paying for me to stay in the 'bed n breakfast' on the property (The White Oak Inn). They said I'll have to wear a 'soft collar' for 8 weeks. (Isn't that like a neck brace?) Not because I'd be that sore, but because they want to restrict my movement so I don't 'break' the wires off and need an additional surgery.
They showed me the whole stimulator outfit. It is smaller than I imagined. <good thing.
I'll post about my experience and results when I have it done.
Unsolved
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ClusterChuck
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Re: My neurostimulator details >
« Reply #1 on: Jan 7th, 2004, 10:06pm » |
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Good luck, UE! Thanks for the update. Prayers and vibes that this works for you!
Chuck
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Rick_K
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Re: My neurostimulator details >
« Reply #2 on: Jan 7th, 2004, 10:11pm » |
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Good luck and good vibes to you for sucess and a long PF time.
Rick
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episodic since 1969........damn
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Lizzie2
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Re: My neurostimulator details >
« Reply #3 on: Jan 7th, 2004, 10:16pm » |
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Good luck unsolved!
I really really hope this works for you!!!
~Lizzie 
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Woobie
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Re: My neurostimulator details >
« Reply #4 on: Jan 7th, 2004, 11:14pm » |
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oh MAN i hope this works for you!@!!!
let us know
keep in touch!!
PF to you, Michael!!!
Tina
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t_h_b
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Re: My neurostimulator details >
« Reply #5 on: Jan 7th, 2004, 11:25pm » |
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Here's a soft collar:
http://www.ketteringsurgical.com/cervical/sc.htm
The hospital would probably get paid more for an inpatient admission but your insurance company probably wouldn't authorize it because it can be done as an outpatient.
Good luck with the stimulator!
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lapowers
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Re: My neurostimulator details >
« Reply #6 on: Jan 7th, 2004, 11:36pm » |
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My husband had a neurostimulator implanted in 1997 in Munich Germany. I wish you the great PF success he had with it.
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rumplestiltskin
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The Italians first implant in Nov of 2000 was deep brain...to the hypothalymus. Their positive results on Intractable Chronic Clusters is nothing short of astounding.
I'm assuming you are going to receive something less invasive. I'm assuming they are stimulating the trigeminal nerve to block pain.
Just trying to keep the two procedures straight "in my head".
For the curious...here is a link to some links about implants...particularly of interest are the Italian ones on Clusters. They are in english...but the medical jargon reads like Greek to me.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Display& amp;dopt=pubmed_pubmed&from_uid=12699552
He's alive!...he's alive!
den
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Unsolved
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Re: My neurostimulator details >
« Reply #8 on: Jan 8th, 2004, 4:29am » |
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The procedure being done in Italy is deep brain stimulation of the hypothalmus. (different from what I'm getting) It has been done approx 10 times with good success. It is not allowed in the US yet. The doctors over there were actually taught by a doctor from the Cleveland Clinic and he is a good friend of Dr. Rozen (my doc). They've already talked about doing that on me here in the US (I would be the first), but it will take years for the FDA to approve that procedure.
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pubgirl
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Re: My neurostimulator details >
« Reply #9 on: Jan 8th, 2004, 5:11am » |
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Unsolved
have messaged you all the posts about the procedure from the guy I know who had it done in case any of it is any use
Wendy
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totka
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Re: My neurostimulator details >
« Reply #10 on: Jan 8th, 2004, 6:08am » |
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Good luck with the wires, bro!
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I have two enemies, cluster headache and English grammar.
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Melissa
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Re: My neurostimulator details >
« Reply #11 on: Jan 8th, 2004, 7:05am » |
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Unsolved, I am keeping you in my thoughts for success with the implant! Please know we are all behind you, and wishing you lots of PF time!!!
mel
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ZAIRA
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Re: My neurostimulator details >
« Reply #12 on: Jan 8th, 2004, 8:29am » |
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Good luck my friend...... thoughts, prayers and lots of PF vibes headed your wayl!! Zaira 
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Little Deb
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Re: My neurostimulator details >
« Reply #14 on: Jan 8th, 2004, 10:22am » |
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Have ya been zapped yet?? 
Keepin our fingers crossed for ya. Give us a report as soon as you can.
pain free zappin' vibes........little deb 
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River_Rat
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Re: My neurostimulator details >
« Reply #15 on: Jan 8th, 2004, 10:34am » |
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WOW MAN! I'm so happy and nervious for you at the same time, I am really really confident this is going to work, I know your going to be fine and your paving the way for everyone else.
You'll be in our thoughts and prayers, I'm so happy your going to get some relief.
Thank you for the updates.
NORM
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Tara Ann
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Re: My neurostimulator details >
« Reply #16 on: Jan 8th, 2004, 12:24pm » |
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Goodluck unsolved. I'm rooting for ya! Please keep us updated after u get it done?
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BlueMeanie
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Re: My neurostimulator details >
« Reply #17 on: Jan 8th, 2004, 12:53pm » |
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Goodluck Unsolved.
Maybe this could be a breakthrough for a bunch of Clusterheads in the future thanks to you.
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Paigelle
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Re: My neurostimulator details >
« Reply #18 on: Jan 8th, 2004, 12:55pm » |
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I so hope this works for you, then maybe all chronics can be stimulated.
Okay I didn't mean it that way. 
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