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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> gamma knife
        
(Message started by: fireball on Mar 6^th, 2006, 5:45pm)

Title: gamma knife
Post by fireball on Mar 6^th, 2006, 5:45pm

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!!!

Title: Re: gamma knife
Post by StressFree on Mar 6^th, 2006, 6:02pm

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

Title: Re: gamma knife
Post by Sean_C on Mar 6^th, 2006, 6:15pm

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...................................

Title: Re: gamma knife
Post by nani on Mar 6^th, 2006, 6:21pm

Hi Kathi. Did he try the seeds?
Even with the surgery there are no guarantees for any PF time. :-/ Sorry he's still struggling.

Title: Re: gamma knife
Post by Roxy on Mar 6^th, 2006, 6:37pm

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

Title: Re: gamma knife
Post by CHTom on Mar 6^th, 2006, 6:48pm

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.

Title: Re: gamma knife
Post by fireball on Mar 6^th, 2006, 7:56pm

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.

Title: Re: gamma knife
Post by Sean_C on Mar 6^th, 2006, 8:38pm

on 03/06/06 at 19:56:02, fireball wrote:

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...........................................

Title: Re: gamma knife
Post by chewy on Mar 6^th, 2006, 8:51pm

If I were looking into surgical proceedures I'd try the nerve implant first.

Title: Re: gamma knife
Post by CHTom on Mar 6^th, 2006, 9:41pm

on 03/06/06 at 20:51:48, chewy wrote:

If I were looking into surgical proceedures I'd try the nerve implant first.

I'd recommend DBS surgery-it works, but it is not available in th US. PM me if interested, fireball.

Title: Re: gamma knife
Post by fireball on Mar 6^th, 2006, 10:18pm

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.

Title: Re: gamma knife
Post by fireball on Mar 6^th, 2006, 10:23pm

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.

Title: Re: gamma knife
Post by CHTom on Mar 7^th, 2006, 12:34am

[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.

Title: Re: gamma knife
Post by Pinkfloyd on Mar 8^th, 2006, 12:34am

on 03/07/06 at 00:34:14, CHTom wrote:

I've had it done and it is not dangerous and it works.

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

Title: Re: gamma knife
Post by tanner on Mar 8^th, 2006, 12:48am

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

Title: Re: gamma knife
Post by chewy on Mar 8^th, 2006, 6:50am

Occipital Nerve Implant

http://www.intelihealth.com/IH/ihtIH/EMIHC000/333/333/361293.html

Title: Re: gamma knife
Post by fireball on Mar 8^th, 2006, 1:51pm

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.

Title: Re: gamma knife
Post by ArCane on Mar 8^th, 2006, 2:33pm

on 03/08/06 at 13:51:06, fireball wrote:

I do everything that I can to provide support. But, I feel like a failure.

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!

Title: Re: gamma knife
Post by Dragnlance on Mar 8^th, 2006, 4:11pm

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?

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

Title: Re: gamma knife
Post by zuesthedog on Mar 8^th, 2006, 6:42pm

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

Title: Re: gamma knife
Post by CHTom on Mar 8^th, 2006, 8:54pm

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.

Title: Re: gamma knife
Post by Pinkfloyd on Mar 9^th, 2006, 1:53am

on 03/08/06 at 20:54:54, CHTom wrote:

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

Title: Re: gamma knife
Post by CHTom on Mar 9^th, 2006, 2:49am

I wish that it did vibrate! ::)

Title: Re: gamma knife
Post by LeLimey on Mar 9^th, 2006, 3:42am

on 03/06/06 at 21:41:26, CHTom wrote:

I'd recommend DBS surgery-it works, but it is not available in th US. PM me if interested, fireball.

on 03/08/06 at 20:48:57, 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?

Define works??? I can't see any sign of it.

Title: Re: gamma knife
Post by CHTom on Mar 9^th, 2006, 4:20am

on 03/09/06 at 03:42:59, LeLimey wrote:

Define works??? I can't see any sign of it.

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. :o

Title: Re: gamma knife
Post by LeLimey on Mar 9^th, 2006, 4:41am

If you want to get into a pissing match take it to the general board. I have had enough of you hijacking threads here with your inanities and if you don't want to be caught out lying.. don't!

Title: Re: gamma knife
Post by Ghost on Mar 9^th, 2006, 10:25am

on 03/09/06 at 04:20:47, CHTom wrote:

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. :o

Dang it I thought I had covered this once already, Why do you insist on being the south end of a north bound horse? Do you thing it builds your ability to help others? Do you honestly believe anyone takes you serious after you do stuff like this? Do personal attacks against my Favorite CHenz wont pull a response? That must be it you must be TROLLING for response! Again I am sorry for you loss and will try to get a search party together to find your testicals! This area is for people seeking help not attacks! If you have the desire to respond to this please do so in the proper area. try to leave this area for those needing advise and assistance.

Mike

Title: Re: gamma knife
Post by fireball on Mar 9^th, 2006, 10:23pm

I just wanted to say thank you again. Your encouragement is wonderful. And, I was actually moved to tears with the kind words for being a good supporter. I appreciate you more than you know.

Title: Re: gamma knife
Post by LeLimey on Mar 10^th, 2006, 5:52am

Hi Fireball,
Supporter's are worth their weight in gold to most of us here, not everyone is lucky enough to have someone like you backing them to the hilt so we do all we can to encourage and support you too.. and always will!
You are more than welcome here, please don't ever think otherwise and we'll do all we can to help you find what's right for your sufferer too.
Keep fighting!
love
Helen xx

Title: Re: gamma knife
Post by Ghost on Mar 10^th, 2006, 10:18am

Sorry fireball got side tracked. I haven't had any direct experience with surgical procedures with CH but I do understand the non responsiveness to treatment. Most meds I cant take and O2 didnt get to do till recently thanks to certian angels here, And pretty much even still have to ride out attacks wholescale full ride. Ultimately it is your decision and I can truly understand the pain as most here will attest to and frustration too. I hope if you and your husband do get the surgery you will stick around and let us know how it went. also maybe help others here and let us help both of you. GOD BLESS THE GREAT SUPPORTERS!!!!!!!

Mike

Title: Re: gamma knife
Post by burnt-toast on Mar 10^th, 2006, 10:23am

Fireball,

This is only my opinion on this subject based on my research.

Research on CH surgery is not easy. I've found claims of nearly 100% success in one study and from the same study less than 40% - (long-term) success. Side effects ranging from facial numbness, to sagging facial muscles to death depending on the surgery performed.

More U.S. research seems to be under way however the bulk of existing research appears to be from Europe.

Sufferering from a primarily chronic condition - I have chased this idea with assistance from my Neurologist and independently - we keep arriving at the same conclusion in our research - It is currently difficult to determine if surgery has long-term value to cluster sufferers.

There are a large variety of abortive/preventative treatments to wade through and it can take a lot of work to find something that works. A good headache journal will help in experimenting with doses/schedules to find out what workes best.

I realize I've been dishing all the negatives but here's some encouraging news.

After over 3.5 years in contineous cycle a combination of 1200mg Lithium Carbonate, 720mg Verapamil, 9mg Melatonin and two Prenisone tapers have provided me with over a month of relief so far (actually working on 1 1/2 months).

I know what it is like to be barely living with this disorder but research all options before turning to surgery. Everything I have been able to find and everything my Neurologist has found indicates that today's CH surgeries may not be the answer to our problem. Consult with your Neurologist and work up a game plan for attempting to treat the problem with meds. Turn to surgery only as a last resort.

Best wishes

Tom