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Topic: gamma knife (Read 1730 times) |
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fireball
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My husband has been a chronic sufferer for about 6 years (has had clusters for 8 total) and he is non-responsive to every medication, to oxygen, to seeds. He is a candidate for gamma knife. Is there any member who has had this procedure that can tell me their experience?
We met with the specialist who would do the procedure, and he could do it at any time. At this point my husband is against the idea. We were informed of the risks. We know there aren't many people who have had this procedure for clusters. The day we were there, a woman who had it done 2 years ago was there for a consult to have it done on the other side. She was 2 years PF before starting to get pain on the other side.
My opinion is this: nothing else works, he isn't enjoying, let alone living, life. He has been in this cycle since November of 2004 -- yes, that isn't a typo -- I am talking NO PF DAYS in almost 16 months. I feel like he has nothing to lose -- so what if the pain comes back on the other side in a year or 2 -- at least there is the possiblity of being pain free. Otherwise, sitting around and doing nothing but waiting and hoping for the cycle to end is the only alternative.
Any information would be great.
Thank you!!!
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StressFree
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James4:8 I'm a moral failure, but there is hope...
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Re: gamma knife
« Reply #1 on: Mar 6th, 2006, 6:02pm » |
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Hi Fireball,
You should read the post called "histamine desensitization" from UnSolved. It is on this board, under this same medication/treatment/therapy topic. He is a chronic who has used this treatment with quite a bit of success. There are a couple of links in his post with basic info on it.
Prayers for you and your husband, Rich
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Sean_C
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Fireball can you list the preventative meds, abortive meds, and alternative meds that failed for us? Just curious of whats going on.
PF wishes comin your way
Sean...................................
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nani
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Re: gamma knife
« Reply #3 on: Mar 6th, 2006, 6:21pm » |
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Hi Kathi. Did he try the seeds?
Even with the surgery there are no guarantees for any PF time.  Sorry he's still struggling.
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Roxy
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Re: gamma knife
« Reply #4 on: Mar 6th, 2006, 6:37pm » |
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There are quite a few on this board who have gone longer than 16 months without a PF day, it's tough.
Has he tried all of the triptans out there? There are some triptans on the market which will give you close to 12 hours PF.
How is he using the 02, does he have a clustermax? How did he use the seeds? Has he tried shrooms? If he has a problem with the legality of clusterbusters, I would think it would be cheaper to take a trip to the Islands than to pay for surgery. It is at least worth a shot.
Has he tried Kudzu, Melatonin? What preventatives has he been on? I hope he has at least tried verap and lithium.
Does exercise trigger him or work as an abortive? How many times does he get hit in a 24 hr period?
Waiting for the cycle to end is self-defeating....it might not end. I know mine won't. He has to learn to live around the ch's, but personally I would never take the surgery....but that is my choice.
Sorry for all the questions, but we can't help him without information.
Roxy
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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CHTom
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The gamma knife procedure is worthless. IF it works, the effects may last up to a year or two, then the nerves have grown back and back comes the CH. There are also some permanent side effects, such as a drooping of the facial muscles on the side that the procedure was done, the chance of blindness as the tear ducts are destroyed, thus increasing the chance of blindness or other damage to the eye if something, such as a grain of sand, gets on the eye because the feeling is lost and that sand grain can tear up the eyeball, cornea, etc. and lead to blindness. It is an operation that has fallen out of favor, several years ago, amognst the neurosurgical community for these reasons, but some neurosurgeons continue to perform it. To the best of my knowledge (I had considered it at one time), the cost, which is VERY high, will not be covered by health insurance. I would consider trying various medications from a good pain clinic working in conjunction with your neurologist-anything but the gamma knife procedure. By the way, is the place that is offering this service located in Alabama or any state near there? My advice is don't get it done-the CH will come back anyhow and your husband will be disfigured for the rest of his life.
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fireball
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Re: gamma knife
« Reply #6 on: Mar 6th, 2006, 7:56pm » |
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I'll try to answer all of the question:
he tried the oxygen w/ the non-rebreather max, at the higher flow rate, as recommended on the CH sites.
he has tried both types of seeds, following all of the instructions on the clusterbusters web site; he has tried the mushrooms as well.
re: the medications, there are too many (probably 30 or more) to remember. Some of the ones tried were:
depakote, verapamil, lithium, imitrex, migranal, prednisone, shots of kenalog, in-patient for dhe-45, regulin & decadron; the latest med tried was lamictal
The surgery would be at Presbyterian hospital in Pittsburgh. It would be covered by our insurance.
I know the risks but I also know that I would rather have a disfigured husband than a dead one.
Thank you for all of the responses. I appreciate your input more than you know.
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Sean_C
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on Mar 6th, 2006, 7:56pm, fireball wrote:I'll try to answer all of the question:
he tried the oxygen w/ the non-rebreather max, at the higher flow rate, as recommended on the CH sites.
he has tried both types of seeds, following all of the instructions on the clusterbusters web site; he has tried the mushrooms as well.
re: the medications, there are too many (probably 30 or more) to remember. Some of the ones tried were:
depakote, verapamil, lithium, imitrex, migranal, prednisone, shots of kenalog, in-patient for dhe-45, regulin & decadron; the latest med tried was lamictal
The surgery would be at Presbyterian hospital in Pittsburgh. It would be covered by our insurance.
I know the risks but I also know that I would rather have a disfigured husband than a dead one.
Thank you for all of the responses. I appreciate your input more than you know. |
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Its not your best solution Fireball, as others have said they CAN still come back. You failed to mention any triptans? Has he used these? If so what kind and what type.
Who's his Nuerologist, just curious.
Keep us posted
Sean...........................................
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chewy
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If I were looking into surgical proceedures I'd try the nerve implant first.
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CHTom
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on Mar 6th, 2006, 8:51pm, chewy wrote:| If I were looking into surgical proceedures I'd try the nerve implant first. |
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I'd recommend DBS surgery-it works, but it is not available in th US. PM me if interested, fireball.
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fireball
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Re: gamma knife
« Reply #10 on: Mar 6th, 2006, 10:18pm » |
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Re: which triptans he has tried, I know for sure he has been given imitrex, zomig, axert and relpax (which are sumatriptan, zolmitriptan, almotriptan & eletriptan). There may have been others that aren't coming to mind right now.
His neurologist is Dr. Kaneicki; he is the head of the University of Pittsburgh Medical Center Headache Center. We've gone to others previously, and he is by far the most knowledgable and current.
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fireball
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Re: gamma knife
« Reply #11 on: Mar 6th, 2006, 10:23pm » |
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What can you tell me about "nerve implant"?
He did have a nerve block but it didn't work.
Re: the DBS surgery -- I hadn't read anything about it being used for clusters -- just MS and Parkinsons, etc. I've read about the experimental surgery being done in Italy for clusters, but our neurologist said he doesn't know if it will ever be something done in the US. At this point it sounds promising, just very dangerous.
Thank you again for all of your responses.
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CHTom
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[quote author=fireball
Re: the DBS surgery -- I hadn't read anything about it being used for clusters -- just MS and Parkinsons, etc. I've read about the experimental surgery being done in Italy for clusters, but our neurologist said he doesn't know if it will ever be something done in the US. At this point it sounds promising, just very dangerous.
Thank you again for all of your responses. [/quote]
I've had it done and it is not dangerous and it works. I know of 2 DBS operations that have been done in the US, one at UCLA and one at the Mayo Clinic (I forgot in which state); I was in touch for awhile with the person who had it done at UCLA and he reported positive progress. There have been about 50 DBS surgeries done in Europe for clusters, mostly in Italy and the results have been very good based upon a 2 year follow up. The main problems with the surgery are that you must travel to Europe to be evaluated for it and to have it done and then for initial follow-up visits (but there are a few neurologists in the US who can adjust the voltage settings). The operation is very expensive, about $50,000, not including follow-up visits and travel expenses; I do hope that your neurologist is wrong and that it will be done, eventually, in the US for severe chronic cluster headaches and that medical insurance companies will pay for it once it is no longer considered experimental. Good luck to you and your husband whatever course of treatment that you two choose.
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| « Last Edit: Mar 8th, 2006, 7:30am by CHTom » |
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Pinkfloyd
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Re: gamma knife
« Reply #13 on: Mar 8th, 2006, 12:34am » |
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on Mar 7th, 2006, 12:34am, CHTom wrote:| I've had it done and it is not dangerous and it works. |
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You can say that because you woke up.
The guy that died would probably disagree, if he could.
DBS Morbidity and mortality rates
The rate of complications depends highly on the skill and experience of the surgical team performing the procedure. Rates from one of the most experienced teams, in a study of over 200 patients, were as follows.
Post-operative complications:
asymptomatic intracranial bleed (10% of procedures)
symptomatic intracranial bleed (2%)
seizures (3%)
headache (25%)
infection (6%)
Device-related complications:
lead replacements (9%)
lead repositionings (8%)
extension wire replacements (6%)
implantable pulse generator replacements (17%), approximately half of which were due to malfunction
The risk of death is less than 1%.
Gamma knife treatment for refractory cluster headache: prospective open trial
A Donnet1, D Valade2 and J Régis3
Results: The mean follow up was 13.2 months. No improvement was observed in two patients and three patients had no further attacks. Three patients showed dramatic improvement with a few attacks per month or very few attacks over the last six months. Two patients were pain free for only one and two weeks and their headaches recurred with the same severity as before. Three patients developed paraesthesia with no hypoaesthesia, one developed hypoaesthesia, and one developed deafferentation pain.
Conclusions: The rate and severity of trigeminal nerve injury appeared to be significantly higher than in trigeminal neuralgia, and this study does not support the positive results of the study of Ford et al. We consider the morbidity to be significant for the low rate of pain cessation, making this procedure less attractive even for the more severely affected subgroup of patients. "
Bobw
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"Nothing is so firmly believed as what we least know."
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tanner
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Re: gamma knife
« Reply #14 on: Mar 8th, 2006, 12:48am » |
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Please listen to all of the above advice! I have not had a pfd in over 3 yrs now and before that respite in over 20. Don't jump!
I took a fey years off of this board and am very sorry that i did. these people are your very best source of non-invasive alternatives. please give it a chance!
............................tim
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
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fireball
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Re: gamma knife
« Reply #16 on: Mar 8th, 2006, 1:51pm » |
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Thank you again for all of the information.
He has an appt. next month w/ the neurologist -- I plan on printing and taking all of the information with me.
For those of you who have gone 3 years, etc., with no PF days -- how do you find hope? How are you not severely depressed? How do you overcome the inability to do all of the things you want to do?
I do everything that I can to provide support. But, I feel like a failure.
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ArCane
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Onward through the fog
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Re: gamma knife
« Reply #17 on: Mar 8th, 2006, 2:33pm » |
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on Mar 8th, 2006, 1:51pm, fireball wrote:| I do everything that I can to provide support. But, I feel like a failure. |
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Just you being here and trying to get information makes you a WINNER in my book. A supporter is just that, a supporter. You are not required to cure the disorder or anything. Don't be so hard on yourself. Some people would jump for joy just to have a supporter as half as interested as you. Your doing a great thing. I hope everything works out for your hubby and yourself. Have a great day!
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Dragnlance
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Re: gamma knife
« Reply #18 on: Mar 8th, 2006, 4:11pm » |
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Quote:| For those of you who have gone 3 years, etc., with no PF days -- how do you find hope? How are you not severely depressed? How do you overcome the inability to do all of the things you want to do? |
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I seem to be one of the lucky ones, born chronic. I do get a few days pain free. (6 so far this year and 28 last year)
Hope is where you find it. Since I have always known pain, to me it is just a part of every day life. There is joy to be had. The joy I found in this place cannot be described. I had not realized how alone I was until I got here.
Mostly, to be able to do the things I want, it is a frame of mind. I am sick of not being able to do things, so I just do them, in pain or not. I concluded that I had a choice to take part in life, or live in a cave. Caves get boring, so I take part in life instead. (read my motto at the bottom)
Thank you for being a supporter. You really have no idea how much it means to have a supporter there when we hurt. You are a gift.
Dragnlance
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zuesthedog
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Re: gamma knife
« Reply #19 on: Mar 8th, 2006, 6:42pm » |
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my name is john. Been a suffer for 30 years,and have tried everything.Including ocipitial nerve stim.,and now trgenial nerve stim. this beats the burnning of the nerve because its reversiable.It also comes with remote you can control the intensity and freq. its been great pf for 5 weeks
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zues
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CHTom
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Floyd-one woman died in Liege, Belgium several years ago now due to a stroke. That has been the only fatality in the DBS implant procedure. It is a safe operation, but, not as much fun as taking LSD I'm sure.
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Pinkfloyd
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Re: gamma knife
« Reply #21 on: Mar 9th, 2006, 1:53am » |
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on Mar 8th, 2006, 8:54pm, CHTom wrote:| Floyd-one woman died in Liege, Belgium several years ago now due to a stroke. That has been the only fatality in the DBS implant procedure. It is a safe operation, but, not as much fun as taking LSD I'm sure. |
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Well don't go making it sound like it was a stroke....not from the operation.
Post-operative complications:
asymptomatic intracranial bleed (10% of procedures)
symptomatic intracranial bleed (2%)
I just thought you were throwing around the word "safe" a little too easily. There are ALWAYS levels of safety. Since you didn't want to qualify it's safety record, I thought I would.
Joke about LSD if you'd like. Let's skip over the supposed inconsequential brain bleeds, and you've still got about 50 years to see if jolting brains with low voltage electrical charges ends up with as safe a record as LSD. (and 4000 years with psilocybin)
Look, I'm not against the research that is being done with the ONSI or DBS. For those that decide to give it a try, I wish them all the best and hope it works forever for them, with no side effects and no complications. I hope it continues to be done with fewer complications so it does become as "safe as possible."
Saying people treat their clusters with psychedelics because it's fun, is like me saying you implanted a vibrator into your brain for your pleasure.
Bobw
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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CHTom
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I wish that it did vibrate! 
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LeLimey
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Re: gamma knife
« Reply #23 on: Mar 9th, 2006, 3:42am » |
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on Mar 6th, 2006, 9:41pm, CHTom wrote:
I'd recommend DBS surgery-it works, but it is not available in th US. PM me if interested, fireball.
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on Mar 8th, 2006, 8:48pm, CHTom wrote:| 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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Define works??? I can't see any sign of it.
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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CHTom
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on Mar 9th, 2006, 3:42am, LeLimey wrote:
Define works??? I can't see any sign of it.
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I remember you-you're the person who thought that some Nazi allies were good guys! Intelligence? I can't see any sign of it. 
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