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Topic: The road to the cure!!!!! (Read 1961 times) |
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zuesthedog
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The road to the cure!!!!!
« on: Mar 8th, 2006, 6:36pm » |
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hello. myname is john I am a 41 year old male,who has suffered whit CH. since I was 13. It was misdiagnose as jaw alingment problem, teeth grinding, deviated sinuses,and finally as part of my imaginenation.Finally when I was 31 a med student walked into my bussiness,while I was under attack from the deamon.He told me to go see a Dr. Martin,who was a headache specialist.At this first appt.he read to me from a medical book all of the syp.I been living with for 6 week periods twice a year.Most of you are famillar wirth this insanity. The tearing of the eye, the running nose, oh yea and the pain. We can,t forget the pain.Anyway he started me on> predisone, then verap.,lith.,depakote,sanaert, topamax,imitrex,.The imitrex would help ,but I needed more than they will let you take> Then came DHE which made me feel like I was having A stroke. ver the next few yars periods of remisson became less and [color=Blue][/color]less.Finally he declared me chronic.I guess 3 trips aweek to the ER. for over 2 years earsn you that title.Well time goes on with no help insite, Besides seeing the Dr. I tried ommish man who reads eyes>, Apain management Dr. who tried nerve blocks,and a phsy Dr. who tried two teach me how to relax.At age 39 I heard of a Dr. Dodick at the mayo clinic doing astudy involving ocipital nerve implants. I got on the list but redtape kept delaying it.. Finally I found Dr. Manyburg of the Mayfield spine inst.at University hosp. of Cincinnati.He agreed to to ocipital nerve stimp. in. nce I had The medtronic device implanted. I started getting some relief. Not completely,but better than i,ve known for years. After a year the stimp. started to migrate and eventually poke out of the back of my head.They had no choice but to take it out> The headaches return full force. This point my head Dr. was pushing for the gamma knife> Again I approach Dr. manyburg to have this vproceure done , he suggested we try a nerve stimp. on the trigenial nerve instead of burning it. This priocedure was done as outpatient,and is reversible. Best of all you control the freq. and amp
.,and the on and off time. Well its been about 6 weeks of pain free life.The small scar has heal, you can,t even tell i have it unless I turn it on.,{ eyebrows rise by thier sef.] [the feliing is like when your foot falls asleep.] You get use to it. anyone who is considering gamma . should consinder this as a viable alternative. No side affects and is reversible. I hope this can help one person from living the hell I have been throug. Dont give up Dont give in PF days to all John. 
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| « Last Edit: Mar 11th, 2006, 6:18pm by zuesthedog » |
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carriefu
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Re: Cure for unbearale disease
« Reply #1 on: Mar 8th, 2006, 7:11pm » |
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Cure???says who??
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nani
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Re: Cure for unbearale disease
« Reply #2 on: Mar 8th, 2006, 7:18pm » |
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Where did you have it done? Who was the doctor that did the surgery?
Is your diagnosis strictly CH, or is there a co-existing condition?
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Lizzie2
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Re: Cure for unbearale disease
« Reply #3 on: Mar 8th, 2006, 8:13pm » |
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Good for you!! I'm glad you've found something that helped you.  Have a few questions out of curiosity!! (bear with me!)
What side are your CH's on?
Was the occipital stimulator placed on just one side or bilateral?
When you started getting hit again after the ONSI, was it on your usual cluster side or the opposite side?
What side was your trigeminal nerve stimulator placed?
Permanent or temporary? Is it still made by medtronic?
Where exactly are the stimulator probes placed - ie. what branch of the trigeminal nerve - is it in your forehead, cheek, jaw?
Does the wire run down your neck to the battery pack and stim control placed still in the abdominal or back area?
What's the scar like - how big, where is it, do they think it'll heal?
Sorry for all the questions, but I have quite a bit of knowledge stored up about the ONSI and had had a very lengthy discussion with a neurosurgeon about the ONSI last year, but he didn't think it would work for me, so we opted not to do it.
Once again, very glad you are pain free!! Hope it lasts for good.
Carrie
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zuesthedog
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Re: Cure for unbearale disease
« Reply #4 on: Mar 8th, 2006, 8:28pm » |
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Questions are more than welcome. My pain has always been left side. the ocip. ,and trig. implants was and is on left side, yes its made by medtronic. i have quite afew wrinkles on forhead Dr. made a very small incision in one of the wrinkles you cant even see the scar,but if you look close you can see the wire but only about a half of inch then it goes under the hair. They made a larger incision on top of heas to tunnel the wire. The wire runs over my head and down the back of neck,then crosses to frt,and down to my chest to the batt-reciever. The batt was install when the ocip. stim. was placed.The Dr. used the same batt for the trig. stim. I think I covered all your qestions ,if you have any more feel free to ask. I also have avail phone numbert if you wish to talk about this
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zues
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CHTom
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Re: Cure for unbearale disease
« Reply #5 on: Mar 8th, 2006, 8:48pm » |
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Was the implant device the Medtronic Soletra 7426? That is the device that I have implanted on my hypothalamus in September 2005. We still haven't found the correct voltage to significantly reduce the attacks-up to 4.5v now. What voltage are you getting?
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zuesthedog
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Re: Cure for unbearale disease
« Reply #6 on: Mar 8th, 2006, 9:08pm » |
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Iam not sure of the exact model num.,but the remote say Itrel EZ. the voltage and freq does not have ratings. I just started at the lowest and worked my way up till i found what seems to work. At first i was using it to abort attacks, but now I run it about a hour a day when i get home from work.I,ve been pf for about 5 weeks so it seems to work.Another thin this stim. is placed above my eyebrow,and hooked to the nervebetween temple area and eyebrow.
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CHTom
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Re: Cure for unbearale disease
« Reply #7 on: Mar 8th, 2006, 9:14pm » |
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You had a different operation than I did. Mine is not a trigeminal nerve stimulator but rather sends current to the hypothalamus and the voltage must be increased by a physician. Good luck with yours.
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zuesthedog
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Re: Cure for unbearale disease
« Reply #8 on: Mar 8th, 2006, 9:28pm » |
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Thanks .I have to get to sleep [god it feels good to say that with out fear].I ve got to be at work early. i also have a Dr. app. tomorrow,to update my headache specialist.DR Martin whos been a saint and guided me to the neuro that would do this surgery.I will be back tomorrow to answere any more questions. I hope I can help anyone find some peace, this type stim. is deffinatiely worth checking out. Just remember dont give up and dont give in. Hope you all sleep in peace
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zues
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sandie99
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Re: Cure for unbearale disease
« Reply #9 on: Mar 9th, 2006, 3:10am » |
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I hope that you'll be PF in the future, too!
Best wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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Beastfodder
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Re: Cure for unbearale disease
« Reply #10 on: Mar 9th, 2006, 8:37pm » |
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on Mar 8th, 2006, 6:36pm, zuesthedog wrote:| Have had trigenial nerve stimulator implanted feb 2.I believe iam the first to do this. will share all details |
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Sorry couldn't resist a couple of questions -
Couldn't you have got the wireless internet version?
Can you get telly on it?
Hope it works out for you - that stuff's scary
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zuesthedog
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Re: The road to the cure!!!!!
« Reply #11 on: Mar 11th, 2006, 6:25pm » |
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Have rewrote opening topic Please read the top . I hope you see how seriously This could help.
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zues
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mynm156
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Re: The road to the cure!!!!!
« Reply #12 on: Mar 11th, 2006, 7:11pm » |
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WOW, Sounds like its been a good thing for you and who knows what it might mean for the rest of us but I would not call it a cure if you have to keep repeating it it is only a treatment not a cure. Stay Pain Free and Keep us all Posted!
MYNM156
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| « Last Edit: Mar 12th, 2006, 7:46pm by mynm156 » |
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zuesthedog
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Re: The road to the cure!!!!!
« Reply #13 on: Mar 12th, 2006, 8:53am » |
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Yes I knowone person dosen,t make it a cure> Thats why I have been spending my time here.Trying to convince people that this is a viable alternative to other procedures. their is no official study of this going on ,and as far as I know ,nobody else has even tried this.The pain was so severe and my life was such a mess, if I would have died during surgery .I would of consider that a victory. LOOK PEOPLE I not trying to sell anything> I just know its going to take sevsral people to do this before it becomes accepted and can help thosands. I am willing to meet anyone any where to discuss this> I will gladly give out my phone number, by way of private E mail. MY ULTIMATE GOAL IS TO DEFEAT THE DEAMON WOLDWIDE!!!!!!!!!!!!
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thebbz
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Re: The road to the cure!!!!!
« Reply #14 on: Mar 12th, 2006, 7:10pm » |
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This is my first time so I will try to be gentle.
Zeus,
While I am sure you are very happy to be pain free finally, we are very glad for you however anyone reading this should know that this is very invasive and should not be considered lightly,. throwing the words cure around with trying to convince people this is the way is very dangerous. People come here in extreme pain confused and searching. I dont believe it serves any good to tell them they should go and have brain surgery done. You are now in a honeymoon phase and I think it is premature to recommend this in this forum.
Anyone reading this please consider the many less invasive therapy's and treatments. Please do so under the supervision of a neurologist.
Again, I am so glad for you Zues to be pain free and hope it stay's that way.
jb 
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zuesthedog
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Re: The road to the cure!!!!!
« Reply #15 on: Mar 12th, 2006, 8:19pm » |
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Yes this is very seriuos but so is living with this HELL for closed to 30 years like I have. You dont think I was not scared leading up to the surgery ,you nuts.the bottom line is that this was done as outpatient surgery and I was back to work in about 3days.This is not BRAIN surgery, Its a removable stimulator placed under the skin ,Through a incision less than one and half inch long I not recomending everyone run out and do this just people who has tried everything eles and are considering nerve buring,or real brain surgery,
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chewy
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Re: The road to the cure!!!!!
« Reply #16 on: Mar 12th, 2006, 8:43pm » |
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Do you take any meds for other issues?
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Linda_Howell
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Re: The road to the cure!!!!!
« Reply #17 on: Mar 12th, 2006, 9:22pm » |
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John started this subject in 2 different places, so I suggested we take it to this thread. My last post to him:
Quote:--------------------------------------------------------------------------------
Quote:I will be happy to feel you in.
Typo, I hope.
No one is going to take anything seriously around here without one heck of a lot of information. We've been here a long time and have heard it all. Maybe you should just start with your HA history and go from there.
Tell people about how you decided to go this route, EXACTLY what the criteria was for you being a patient for this, how was it done, Dr. Credentials that you checked on, etc etc etc.......
But lets do it in the other thread you started and not in 2 places at the same time. (which we understand you're new here and are learning)
Linda
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O.K. John? hope you can fill us all in.
Linda
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maffumatt
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Re: The road to the cure!!!!!
« Reply #18 on: Mar 13th, 2006, 1:21pm » |
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John, we have a convention every year, I am sure you saw the thread in the meet and greet section, do you think you can show up and share your story, I am episodic so it wouldn't apply for me, but there are alot here that are chronic. If you continue to be pain free up to then, in my view it would be an achievement to take note of. Thanks for stepping in and shareing, there are alot of people here who are pessimistic about it, I should have warned you about useing the cure word, but you have to understand how many snakeoil salesmen we get here selling their cures. After 30 years of pain I am sure you can understand that.
Matt
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StressFree
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Re: The road to the cure!!!!!
« Reply #19 on: Mar 14th, 2006, 1:31pm » |
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Hi John,
I've had success, without the surgery, using a TENS unit. I made several posts regarding my experimentation with it. I had some curious responses, some saying it didn't work for them, and many saying it would only make things worse if they tried it. The thing that strikes me is your description of the sequence you've used, as well as the success.
With externally placed TENS (transcutaneous electrical nerve stimulation) I used it to abort attacks, or at least to distract if a high level attack was already occurring. After using it regularly, attacks seemed to be less severe and less frequent. Perhaps due to meds beginning to work, or getting benefits from both! I continued to use it in morning and evening regardless of having an attack or not in hopes that it would alter the nerve paths to help stop the cycle.
I used it over jaw to temple, and also accross the back of my neck and head going into the hairline. I would alter frequency and amplitude (pulse and strength) in order to get relief. The pads are used with gel to make contact to the skin. Some folks replied that hair would get in the way - true, but it would not be impossible to use anyway - just messy! Others noted that the electric currents would not go deep enough. Well, with my jaw and eyelid jumping at higher settings I think that is not quite correct either.
I'm very happy to hear of your success. Please post if you find out frequencies and voltages used in your device. I think the fact that you are able to control it yourself is a key to success with things like this. I recommend the TENS to anyone willing to try the electrical relief route. They cost about $100 from the internet.
Please keep us posted if you have continued success! PFDANs!!! Rich
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zuesthedog
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Re: The road to the cure!!!!!
« Reply #20 on: Mar 14th, 2006, 1:49pm » |
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on Mar 13th, 2006, 1:21pm, maffumatt wrote:John, we have a convention every year, I am sure you saw the thread in the meet and greet section, do you think you can show up and share your story, I am episodic so it wouldn't apply for me, but there are alot here that are chronic. If you continue to be pain free up to then, in my view it would be an achievement to take note of. Thanks for stepping in and shareing, there are alot of people here who are pessimistic about it, I should have warned you about useing the cure word, but you have to understand how many snakeoil salesmen we get here selling their cures. After 30 years of pain I am sure you can understand that.
Matt |
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Matt ,will talk to wife about convention but it on otherside of country from me. I used up most of my vacation time on surgery,but i,ll see what I can do. Thanks for understanding, I know the word cure may be a little strong for some people, but after suffering for as long as i have to be PF it turely is the cure for me. I just a blue collar worker not a sellsman.
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| « Last Edit: Mar 14th, 2006, 1:55pm by zuesthedog » |
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zues
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zuesthedog
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Re: The road to the cure!!!!!
« Reply #21 on: Mar 14th, 2006, 1:58pm » |
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on Mar 14th, 2006, 1:31pm, StressFree wrote:Hi John,
I've had success, without the surgery, using a TENS unit. I made several posts regarding my experimentation with it. I had some curious responses, some saying it didn't work for them, and many saying it would only make things worse if they tried it. The thing that strikes me is your description of the sequence you've used, as well as the success.
With externally placed TENS (transcutaneous electrical nerve stimulation) I used it to abort attacks, or at least to distract if a high level attack was already occurring. After using it regularly, attacks seemed to be less severe and less frequent. Perhaps due to meds beginning to work, or getting benefits from both! I continued to use it in morning and evening regardless of having an attack or not in hopes that it would alter the nerve paths to help stop the cycle.
I used it over jaw to temple, and also accross the back of my neck and head going into the hairline. I would alter frequency and amplitude (pulse and strength) in order to get relief. The pads are used with gel to make contact to the skin. Some folks replied that hair would get in the way - true, but it would not be impossible to use anyway - just messy! Others noted that the electric currents would not go deep enough. Well, with my jaw and eyelid jumping at higher settings I think that is not quite correct either.
I'm very happy to hear of your success. Please post if you find out frequencies and voltages used in your device. I think the fact that you are able to control it yourself is a key to success with things like this. I recommend the TENS to anyone willing to try the electrical relief route. They cost about $100 from the internet.
Please keep us posted if you have continued success! PFDANs!!! Rich |
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To me thats a great Idea, almost wish I would of thougt of that, it may of saved my insurance co about 85,000.
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zues
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Linda_Howell
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Re: The road to the cure!!!!!
« Reply #22 on: Mar 14th, 2006, 9:20pm » |
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Quote:| Matt ,will talk to wife about convention but it on otherside of country from me. |
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The next convention is in Milwaukee, WI. John. That's not exactly the other side of the country from you. lol
Try to make it. July 14th, thru the 16th.
Linda
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unsolved1
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Re: The road to the cure!!!!!
« Reply #23 on: Mar 15th, 2006, 4:24am » |
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It's definately NOT a cure for all. I had a bi-lateral Occipital nerve stimulator implant at MHNI in MARCH 04'. I only had it for a week. It was a 'trial'. It didn't help anything, just added a shock to the mix. 
Glad others are possibly getting some relief.
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zuesthedog
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Re: The road to the cure!!!!!
« Reply #24 on: Mar 15th, 2006, 6:08am » |
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I afraid you may not gave it long enough. Nieter ons or tns work very well the first week. It took some time of searching through different freq and amplitude to find one that worked. W ith the ons it took about 2 weeks, with the tns about a week.
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