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Topic: GAMMA FOR ALL>SCREW THE DOCS (Read 1207 times) |
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Harvey
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I think its about time after all thease years that they could take that lazer and kill the nerve or nervesfor good for people like us so we would not have to keep living like this. Thease fricking DOCS. are making a killing with thease Headaches. most of them play dumb ass like my GP and keep giving you narcotic pain meds which we all know causes rebound headaches,and some of us have even wound up in detox centers, but they keep going over and over the same fucking meds lithium inderal , topamax, sancert, verapamil, imitrix,zomig...etc...so when you go in the office looking to ask for the GAMMA KNIFE to stop this for good they always come up with some more stupid pill to satisfi the insurance quta or drug rep screw you and your cluster. I am telling you we need not to be suffering like this this is a violation of the oath they took as DRS>>>love Harvey.  [/center][ftp][/ftp][center]
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tommyD
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #1 on: May 14th, 2003, 5:42am » |
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Harvey --
Please reconsider. Reports here on the message board on gamma knife surgery are not good. You lose sense and function, and it doesn't always work. Cut the nerve on the left side, and next year, the Beast moves into the right.
You have tried everything, and the doctors just want to push more drugs. It's a frustrating experience, I'm sure.
But take a good look around the board, there may be alternatives, and not all depend on insurance companies, doctors and prescription pharmaceuticals...
The answer might be growing in a cow pasture somewhere. But it's no bullshit... Look into shrooms before you try the knife.
-tommyD
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Jup
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #3 on: May 14th, 2003, 2:30pm » |
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Hallo,
I think I am going to try the Gamma Knife.
I am chronic since 1999.
Here is an article I found:
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Gamma knife treatment of refractory cluster headache.
Ford RG, Ford KT, Swaid S, Young P, Jennelle R.
Ford Headache Clinic, Birmingham, AL 35213, USA.
Four men and two women were treated for refractory cluster headache by gamma knife radiosurgery of the trigeminal nerve root entry zone. The maximum dose of radiation was 70 Gy to the isocenter. Of five patients treated who had refractory chronic cluster headache and one with refractory episodic cluster headache, four had relief judged excellent. Of the two remaining patients with refractory chronic cluster headache, one had relief judged good and the other fair. Five of the six patients treated had relief within a few days to a week following gamma knife radiosurgery. Three with chronic cluster headache had remissions allowing cessation of all preventive and abortive medication. Although one patient experienced complete relief of chronic cluster headache, he continued to have migraine requiring medication. None of the patients treated developed significant postradiation side effects during a follow-up period of 8 to 14 months. The authors conclude that gamma knife radiosurgery of the trigeminal nerve affords great promise in the management of chronic and refractory cluster headache. The technique seemingly carries negligible short- and long- term risk.
PMID: 9504996 [PubMed - indexed for MEDLINE]
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I tried a lot, why not this???
Jup
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ken_b
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #4 on: May 14th, 2003, 3:30pm » |
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Hope you dont mind me putting my two cents worth in on this. i live in the b/ham area and i use dr. ford to me he is a live saver!!!! we have talked about this topic before he help to write the book on gamma knife this is true. but i truly hope you think long and hard before you have it done ! if you can you might wont to talk to someone who has had it done before. the last time i saw him he was telling me about a man he had done this to before and after five or six years he was back in cycle and comeing in to have it done again. i dont know if it was on the other side of his head or not i did not ask. not everyone who comes to see him to get this done get's it ! he does not like to do this if he can get out of it. im not going to take up to much space on the board but if i can help you in any way feel free to p.m me and i will be glad to cive you my home phone number and see if i can get info from him or any thing else i can do from my end since i live close by him. around 50 miles or so. wishing you luck ken
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BobG
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #5 on: May 14th, 2003, 4:23pm » |
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Hey Jup............
Did you click on the links I posted above, and read them?
You said "The technique seemingly carries negligible short- and long- term risk" and "I tried a lot, why not this"
Negligible risk?
If you want to it's OK with me. It's your face that will be numb and sagging. It's OK with me if you want to go through the rest of your life with a drooping smile.
BUT, it won't stop the cluster headaches for very long (if at all)
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Marc
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #6 on: May 14th, 2003, 8:56pm » |
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OK, my two cents worth:
I agree with Bob G!
If someone REALLY wants to do it, then go for it. But, I feel that there are MANY other routes to exhaust first.
I cannot even count the number of times I've heard "I've tried all the meds out there" when I KNOW that many combinations of meds have not been tried. Sometimes, the right combination works wonders, when individual drugs fail.
Bottom line is that with CH's you have to take responsibility for your own treatment. Good luck!
Marc
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hdbngr
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #7 on: May 16th, 2003, 8:32am » |
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Ummm...
5 years of no pain, and then you would have to have it done again? 5 years sounds pretty good. No in fact, it sounds great! Like heaven! I have seen the links, and I have seen others that say different things, better things, but I know the nerve isn't severed in this procedure.
They fire a gamma ray at the nerve, wait for a scar to form in response (6 weeks later) and hope it interrupts the pain. How long it last depends on the individuals natural healing ability. If it doesn't work, then you keep pushing on.
A numb face doesn't sound so bad, numb sounds beter than pain, and as far as drooping, my left eye droops when I have a headache, and I'm chronic, so it droops most of the time. Would I trade my droopy eye for a droopy smile to be pain free? YES! At least I could smile, would feel like smiling, if it worked.
Doctors WOULD rather push a pill, a combination of the pills, in different dosages and times of day than even mention any kind of possible procedure. Did you know the average pain clinic counts on having you as a patient for at least one year to maximize revenue? One year of appointments, tests, consultations, physical therapy, massage, biofeedback and many, many prescriptions. It's a money maker, and there is no reason to hurry you toward a cure, then the money would dry up. An average year comes to $16,000 per patient. You can do the math.
Most of us who have tried every med out there have also tried every conceivable combination as well. I can no longer count the number of combinations I have tried. What do you do when there isn't a magic pill or pills? When is enough enough?
Question: When does a procedure with "risks" sound like a good idea? Answer: When you hurt all of the time, more pain that anyone should ever have to bear, you cease to recognize your life, and your family no longer recognizes you, meds don't work, and to die sounds like a break from the pain.
When the benefits outweigh the risks, get a procedure. For all of you who have found a magic pill or combo and can go longer than 4 hours without pain, every day of their life, lend an ear, have a heart, and know that you are very, very lucky.
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Margi
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #8 on: May 16th, 2003, 10:39am » |
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hdbanger
I'm so sorry to hear that you're having such a rough time and I do try to understand where you're coming from as to the quality of your life (or lack thereof) because you're chronic.
But this surgery still doesn't guarantee that you won't still get hit on the OTHER side. I don't mean to be a downer here, and I absolutely cringe when I think of my chronic friends and what you all go through all the time, but, in my opinion, this surgery isn't any better than any of the meds out there that don't help.
I hope you find your answer soon. I do know one thing though - death certainly isn't the answer you need to explore, ok? Permanent solution to a temporary problem. Yes, it is temporary even though it doesn't feel like it now.
Please hang in there, hdbngr. OK? Promise?
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Ueli
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #9 on: May 16th, 2003, 10:42am » |
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Not for me, thank you
A numb face and a droopy smile doesn't sound so bad, but what if you can no longer control your lips and get slurred speech that nobody understands? If you start slavering like an old bulldog, so you no longer dare to show in public?
We are used to a droopy eye, but what if the tear gland stops working? Then you have to use eye drops every hour (throughout the night too). And when you go blind finally you can cover up the useless eye with a fancy pirate patch.
Goadsby says: We don't do destructive procedures any longer.
PFNADs
Ueli
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CJohnson
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #10 on: May 16th, 2003, 11:16am » |
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on May 16th, 2003, 10:42am, Ueli wrote:
Chicks dig em'.
-Curtis
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MarkHW
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #11 on: May 18th, 2003, 8:27pm » |
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My Doctor is giving me the Gamma Knife as an option....
I have had cluster for over 15 years... I've been chronic for like 10 years....
I'm now 40, a single Father of 2 boys and none of the meds work for very long. I take 2-3 imitrex a day for long periods of time and then some drug works for a while, I go on steroids, etc. But in the end, I'm back to 2-3 clusters a day. I'm having trouble working with this f@%#ing disorder. Then the imitrex throws me into a rebound migraine.....
I'm seriously considering the gamma knife also... even after everything I'm hearing. I don't know what to do - I have tried every drug that is on every list I have ever seen. Only three things have ever worked - Imitrex injections, Steroids in large doses, and Sansert for about 11 months.
My dr. says I am in serious risk of heart failure as I get older with the stress I am putting on my body..... So what's worse, the side effects of the gamma knife or being dead?
I don't know any more....
I'm not going to run out tomorrow and get the procedure, but I am looking at my options and running out of ideas!
Mark
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tommyD
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #12 on: May 19th, 2003, 6:08am » |
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mark -
I'm assuming, as you say you've tried everything, you have tried psilocybin (shrooms) or another indole-ring hallucinogen, and it didn't work. If this is so, please tell us your experience. We need to hear the details of unsuccessful attempts at using this therapy, so we can get add to our knowledge, since no formal research is being done.
If you haven't tried hallucinogen therapy....well, not to keep beating that mule, but...
http://home.attbi.com/~rwold350/
http://www.geocities.com/ClusterBusters2002/
If you are willing to resort to surgery. why not look into the new brain implant stimulation techniques...check the "Deep brain stimulation," "occipital nerve stimulation" and "Electrode implant - hypothalamus" threads. These are not without risk, but they don't kill your nerves.
-tommyD
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hdbngr
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #13 on: May 19th, 2003, 8:29am » |
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TommyD
I'm intrigued by the "all natural" therapy, I think it makes sense. One of the only things I have not tried. But because it is hard to obtain, or obtaining the materials to do yourself leaves a paper trail, those of us with children have just about ruled this method out.
If we tried it, and were found out, there goes your kids, there goes your job, there goes your freedom. Kids are also into everything. Where would you hide something like that so that it isn't announced to all their little friends at school that their parents are growing "special" plants in the basement?
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Mastifflvr28
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #14 on: May 19th, 2003, 10:24am » |
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understand your concerns hdbngr...
My son farmed with us, innoculated his own jars, call it a science experiment.
We explained to him what imitrex was doing to mom, and that the shrooms were taken at a much lower dose then recreationally getting high.
I dunno, we just made it VERY clear the how's and why's...he gets it.
(he's 12)
Good luck in your research
Mast
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Mastifflvr28 (aka Michelle A.)
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hdbngr
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #15 on: May 19th, 2003, 10:41am » |
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Michelle:
Guess the next question would be: Did the all natural approach help you? The meds have a pretty lousy set of side effects, not to mention the expense.
Sounds like you have a great kid.
Thanks,
V
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Mastifflvr28
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #16 on: May 19th, 2003, 2:28pm » |
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By god they sure did!!
I'm only a weanie episodic, once a year for 4 months...dosed once every 2 weeks for a total of 4 times. The cycle was an absolute BREEZE!!
I hated the shrooms, they made me sick, and I really didn't like the high...but SOOOOO much better then nightly shots and waking up every 2hours, and dealing with the doc, etc.
Please read up on it and consider before you do something permanent. We're hearing more success stories weekly...and not even breaking the cycle success, but daily or weekly success, ya know?
The best of luck!!
Mast
btw hdbngr (no vowels is driving me nuts, lol)
Ralphster is a great supplier of syringes and he takes good care of his clusterhead clients. I seriously doubt he keeps a paper trail, just tell him Mastifflvr28 sent ya 
http://www.ralphstersspores.com/
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| « Last Edit: May 19th, 2003, 2:33pm by Mastifflvr28 » |
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Mastifflvr28 (aka Michelle A.)
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hdbngr
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #17 on: May 19th, 2003, 4:01pm » |
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I know, I know. You aren't the first to notice the difficulty with lack of vows. "Headbanger" was taken when I chose the name, and it was so apt that day, I wasn't willing to give up some variation of it. I don't know how to change my name without losing the consistency. I changed screen names in 2000 from Vanasam to hdbngr and got stuck with lots of "you must be a newbie" responses. Hate to do that again.
Thanks for the link, haven't seen this one before. It's always in the back of my and my husband's minds. We were really close once and chickened out. We are pursuing the spinal chord stimulator, but I think we are still months away from the actual event. Relief is the goal. At this point, I don't really care how I get there, as long as something would work.
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icepickeye
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #18 on: May 19th, 2003, 5:45pm » |
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I would avoid any invasive procedures. I had sporadic CH's for 5 years. I finally had a ganglion nerve block and my episodic CH's are now chronic. At least I have a fantastic M.D. I disagree that pain meds don't work. I am on a combo of oxycontin (oramorph) and oxycodone. It has taken a few years to get the mix right but the headaches are under control. They are there but the pain level has gone from 10's to 4's.
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MarkHW
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #19 on: May 20th, 2003, 8:43am » |
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After much thought I've decided to forgo the Gamma Knife.
I am considering trying to get the nerve stimulation thing.... That sounds less risky and actually more hopeful.
My concern with shrooms is the thing I heard that you have to be off all meds before doing them. I also heard no imitrex! I absolutely refuse to do anything that won't let me take imitrex. My old Dr. put me on something once and said no imitrex. Told me that I wouldn't need it. Had a 10 and wanted to kill myself....
So... is it true about no imitrex with shrooms??
Mark
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Roxy
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #20 on: May 20th, 2003, 9:30am » |
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Mark,
I stay off the imitrex for 24 hrs. before dosing, and 24 hrs. after dosing. It's hard, but I use dramamine at night, and most of the time it really helps.
Tracey
Just go read up on everything. tommyD gave the links up above.
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I used to have a handle on life....but it broke.
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hdbngr
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #21 on: May 20th, 2003, 11:20am » |
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Mark
Glad you found peace reagarding your decision. I was interested to see you were also thinking of checking in to the nerve stimulation. There seem to be more and more Doctors that are considering it as a valid treatment for CH. I am really hopeful about this, that it will be an answer for me, and maybe for other chronics out there as well. It's also nice that they do a "practice" procedure to see if it works before they hook you up for real. Do you have a Doctor who would be willing to consider this?
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Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
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Jup
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #22 on: May 21st, 2003, 4:38am » |
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Hi,
Next week I am going for Gamma Knife. I will let you know the results.
Regards
Jup
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Jup
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #23 on: May 21st, 2003, 4:43am » |
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Hi again,
I forgot to sent you another article I found about Gamma Knife. Here it is;
Abstract # S64-001
[S64.001] Percutaneous Radiofrequency Trigeminal Rhizolysis in Intractable Chronic Cluster Headache; Twenty Years Experience; One Hundred and Twenty Five Patients
Ninan T. Mathew, Wayne Hurt, Jayasree Kailasam, Lori Meadors Houston, TX
Thursday, April 18, 2002, 3:45 PM, Platform: Trends in Headache Therapy (3:45 - 5:00 PM) A 108/10/12
OBJECTIVE: To report a long-term experience with radiofrequency trigeminal rhizolysis in the treatment of chronic intractable cluster headache resistant to medical treatment
BACKGROUND: Inspite of diligent attempts in managing chronic cluster headaches, many patients become totally resistant to medical treatment and the illness becomes alarmingly disabling. Procedures directed to the trigeminal nerve, namely radiofrequency trigeminal rhizolysis, retro-Gasserian glycerol injections and gamma knife procedures have been reported to be useful in such patients. We previously (198 reported 27 patients who underwent readiofrequency trigeminal rhizolysis for chronic cluster headache with very encouraging results. This report is a 20 years experience of 125 patients who underwent the same procedure.
DESIGN/METHODS: Patients who met the International Headache Society (IHS) criteria for chronic cluster headache were selected for surgery if they met the following: 1) strictly unilateral headache atacks, 2) totally resistent to medical therapy having tried all possible combinations of prophylactic pharmacotherapy, 3) stable psychological and behavioral profile without addiction potential,or 4) patients with contraindications for triptans, and methysergide as in the case of ischemic heart disease.
Radiofrequency trigeminal rhizolysis directed towards the first and second division of the trigeminal nerve on the side of the head pain was performed under light anesthesia. One hundred and twenty-five patients (123 males and 2 females) between 1982 and 2001 underwent this procedure. Age range ws 22 to 74. Fourteen patients had to have repeat procedures, once in 12 and twice in 3. Average follow up period was 6.3 years with a range of 4 months to 19 years.
RESULTS: Excellent results (no cluster headaches, no medications) were obtained in 72, very good(occasional isolated mild cluster type headache) in 17, good (bouts of cluster headaches but reduced intensity and responsive to medications) in 15, fair (continuing to have chronic cluster headache but of reduced frequency and severity) in 8 and poor (no change) in 13. Complications were anesthesia dolorsa in 2, stabbing pain over the vertex in 2, ice pick pain over the ipsilateral eye in 3, transient corneal infection in 1, transient diplopia in 2, localized dermatosis of the forehead in 1, recurrent sty in 1. Complications were mild and transient in the majority of patients.
Reasons for poor results were mainly technical resulting in poor analgesia of the first and second division. Complete analgesia guaranteed better results.
CONCLUSIONS: In the treatment of resistant chronic disabling cluster headaches, radiofrequency trigeminal rhizolysis, which will achieve complete analgesia of the first and second division of the trigeminal nerve, appears to be a very effective procedure.
Category: Headache and Pain
SubCategory: Treatment1>
Bye
Jup
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MarkHW
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Re: GAMMA FOR ALL>SCREW THE DOCS
« Reply #24 on: May 23rd, 2003, 12:59pm » |
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Well, I contacted the clinic in Arizona (actually got an email from the Dr). I am now making plans and trying to get an appointment for an evaluation.
I'll keep you updated.
I'm back to 3 clusters per day / every day.
What do I have to lose? The evaluation at least should be painless!
Mark
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The clusterhead formerly known as williamsmh.
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