Author Topic: Neurostimulator Implant Update  (Read 9132 times)

staypoz

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Neurostimulator Implant Update
« on: November 29, 2010, 01:23:08 pm »
I am scheduled to undergo a procedure on December 1st to get a temporary neurostimulator system.  I'll post how it works.  Keep your fingers crossed!

staypoz

Mei Mei

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Re: Neurostimulator Implant Update
« Reply #1 on: November 29, 2010, 06:49:53 pm »
Good luck to you.  I really hope it works!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Lizard

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Re: Neurostimulator Implant Update
« Reply #2 on: November 30, 2010, 03:38:44 pm »
Good luck, can't wait to hear how everything goes.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

cin605

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Re: Neurostimulator Implant Update
« Reply #3 on: December 01, 2010, 11:33:33 am »
Hope all goes well today....Thoughts and prayer your way.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Captain Deb

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Re: Neurostimulator Implant Update
« Reply #4 on: December 01, 2010, 05:13:51 pm »
Best, best, best of luck, staypoz. I know it has been a long road for you.  I have heard and read good things about this device and I believe you are the first of our little group to get this.  We all know how life-altering these damn headaches are.  Praying for good results for you!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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staypoz

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Re: Neurostimulator Implant Update
« Reply #5 on: December 02, 2010, 09:44:10 am »
Hi, everyone and thanks for your good thoughts.  I had the trial implant procedure done yesterday and so far, so good.  I woke up with a brainwreck, and had to drag myself to the doctor's (we've all been there!) and it turned out to be a blessing in disguise.  It made it a little easier to pinpoint the pain. 

The procedure itself isn't unpleasant.  The doc numbs your skull where he is going to implant the wires, and then the company rep turns on the stimulator to see if if they are in the right place.  All the wires connect to leads that then connect to a a slightly-bigger than-a-cigarette-box size unit that you attach to your belt or put in your pocket.  After the doc is finished, a nurse from the company programs  the stimulator.  I have 8 different programs that send different sensations to different parts of my head.  Within the 8 programs, I can adjust the intensity of specific impulses.  My doctor chose to insert wires on both sides of my head, not just one.  The titanium plate presents a challenge in placing the wire, and the scar tissue apparently interferes with my feeling some of the pulses, even when they are cranked up all the way.  Still, today is the first day I have not had to take any medication of any kind since two weeks after my surgery  6 years ago.  So, so far, so good!!!

I will wear this contraption until the 6th and then my doctor and I will evaluate whether to go to a permanent implant.    In the meantime, I can only take sponge baths and can't bend, twist, or reach, but I drove myself to work today and expect to go about the rest of the day as usual.

I'll keep posting!

staypoz

Lizard

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Re: Neurostimulator Implant Update
« Reply #6 on: December 02, 2010, 02:38:23 pm »
That's great to hear!  I really hope this works for you, relief is close I can feel it  :)
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

staypoz

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Re: Neurostimulator Implant Update
« Reply #7 on: December 07, 2010, 08:51:07 am »
The daily head pain returned but the stimulator knocked out a brainwreck, so that's good.  My doctor said that he attended a conference where he learned that they are recommending that a lead be placed over the scar tissue as well, so if I got for a permanent implant (which I am 98% sure I will), I will have an additional lead inserted.  I have had the trial implant removed and am just doing some more due diligence before making a final decision.

staypoz

Janet

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Re: Neurostimulator Implant Update
« Reply #8 on: December 13, 2010, 10:39:26 pm »
Hi Staypoz,

I am happy to hear that you are finding some relief with the neuro-stimulator. You have been through so much. I will look for your posts and pray for your continued relief.

Janet

Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

staypoz

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Re: Neurostimulator Implant Update
« Reply #9 on: December 14, 2010, 08:34:56 am »
Hi, Janet.  Good to hear from you.  I hope that the reason you haven't been posting much is that you are doing well and are headache-free! 

I hope to have the permanent implant done after the first of the year.  I will keep posting about the experience.

Thank you for your good wishes!

staypoz

 

Mei Mei

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Re: Neurostimulator Implant Update
« Reply #10 on: December 14, 2010, 07:50:43 pm »
They recommended that I too get the Stimulator while I was at Cleveland Clinic.   They even had a Psychiatrist come and interview me while I was still in the hospital and after a thorough interview he said he would approve me for one.   This is the third place I've been to that recommended it to me, but I'm still somewhat hesitant about having something foreign in my body and afraid that I might unconsciously pick at it.  He said if I'm afraid of that they can wrap bandages at the site so that I wouldn't yank at it.   

I'm so happy to hear that after your persistance you've gotten insurance approval and implant surgery on the calendar.   You must feel in seventh heaven to be pain free!
It certainly will be a lovely Christmas and a Happy New Year!
Mei Mei   :)
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

cin605

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Re: Neurostimulator Implant Update
« Reply #11 on: December 15, 2010, 07:11:16 pm »
Great news!Bring on the relief already!!!!!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

staypoz

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Re: Neurostimulator Implant Update
« Reply #12 on: January 03, 2011, 03:22:30 pm »
I have a date!  The permanent implant is scheduled for January 20th.  It's an outpatient procedure done in a hospital.  I should be able to go to work the next day.  I can hardly wait. 

Will share the journey with everyone.

staypoz


Mei Mei

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Re: Neurostimulator Implant Update
« Reply #13 on: January 03, 2011, 06:00:56 pm »
Dear StayPoz,
It's a new year and a new you!   Congratulations on the date;  this is really something to look forward to.   At long last a pain free life!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

staypoz

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Re: Neurostimulator Implant Update
« Reply #14 on: January 04, 2011, 08:29:13 am »
I don't expect it will totally take away the pain.  It didn't during the trial and from all I have researched, that would be an unusual outcome.  But, it will give me some control over it and any relief is good relief. 

staypoz