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Topic: Gamma Knife (Read 364 times) |
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Connie2
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Gamma Knife
« on: May 11th, 2005, 2:48pm » |
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Hi Guy's,
It's been a while since my last post. Although I do visit frequently... I just didn't have anything to say that would be helpful to anyone.
After a 3 wk stay in the hospital in Jan 03, I've been diagnosed w/chronic CH and chronic Transformed Migraines. I've had "headaches” for 23 yrs but they weren't properly diagnosed. After diagnosis, I've been in treatment with a neuro at a well known east coast ha clinic on a monthly basis. My neuro said that I’ve tried all available meds “cocktails” and they have failed. O2 doesn't work for me, tried Botox and nerve block treatments. I drink tons of water, avoid alcohol and have quit smoking. Trex works however relief is short lived.
I have seen a neurosurgeon that deemed me a poor candidate for the trial occipital nerve stimulator due to acute sensitive scalp. My neuro said that the sensitive scalp and hair loss is caused by pain from the headaches. He is sending me to another neurosurgeon for a second opinion for the stimulator trial.
He is also suggesting the Gamma Knife procedure and I am SCARED. Can anyone provide info or testimonials about this procedure? I have found the sales pitches for it... I've learned that bad side effects can come of it however I've not heard testimonials from folks who have experienced it for CH nor have I seen any real studies or statistics as it relates to CH.
Thanks,
Connie
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vig
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Re: Gamma Knife
« Reply #1 on: May 11th, 2005, 2:52pm » |
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I would try ALL the alternatives before letting anyone at me with a knife.
In general, the surgeries have low effectiveness records and huge risks.
My $.02
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never, Never, NEVER quit. -Winston Churchill
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floridian
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Some gamma-knife centers have stopped performing this procedure on clusterheads as the sucess rate is so low and there are risks of losing sensation or developing phantom pain. Ask the doc that is reccomending it for some statistics - how many people does he (or she) think benefit from it??
Quote: J Neurol Neurosurg Psychiatry. 2005 Feb;76(2):218-21.
Gamma knife treatment for refractory cluster headache: prospective open trial.
Donnet A, Valade D, Regis J. Service de Neurochirurgie, Hopital la Timone, 264 bd Saint Pierre, 13385 Marseille Cedex 05, France. adonnet@AP-HM.fr
BACKGROUND: Since the initial report of Ford et al in 1998 no further study has evaluated radiosurgery of the trigeminal nerve in chronic cluster headache (CCH). METHODS: We carried out a prospective open trial of neurosurgery and enrolled 10 patients (nine men, one woman; mean age 49.8 years, range 32-77) presenting with severe and drug resistant CCH (mean duration 9 years, range 2-33). The cisternal segment of the nerve was targeted with a single 4 mm collimator (80-85 Gy max). 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. |
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Giovanni
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Re: Gamma Knife
« Reply #3 on: May 11th, 2005, 7:18pm » |
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Connie,
Before you ever try something like this please consider the alternative treatment.
www.clusterbusters.com
Look at Miapet's thread on her husband "D". I have about 90% relief from pain from this method. Also, investigate the information on melatonin and kudzu.
Best of luck to you,
John
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Connie2
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Re: Gamma Knife
« Reply #4 on: May 11th, 2005, 7:37pm » |
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Thanks Vig and Floridian,
After spending the last 19 hrs researching this site for info about Gamma Knife and many more hours searching for info elsewhere, I’m definitely leaning towards the no way in hell am I gonna be a guinea pig for you reply to my neuro. After reading, I’ve noticed that quite a few of us are asking questions about this procedure and not getting answers. When I asked my neuro for stats, he said that he doesn't really know... that the neurosurgeon would and was ready to send me on to him. I said hold off until I look into this a bit further.
I do want to throw another question out there. Is there anyone else here that suffers from sensitive scalp and hair loss and if so, have you been told that it is caused by the pain of your CH?
I’m also very interested in reading about Kudzu. I’ll look over the site but please tell me more if anyone wants to discuss.
Connie
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Connie2
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Re: Gamma Knife
« Reply #5 on: May 11th, 2005, 7:42pm » |
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90% releif? Will do John. Many thanks to all of you.
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nani
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Re: Gamma Knife
« Reply #6 on: May 12th, 2005, 8:48am » |
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on May 11th, 2005, 7:37pm, Connie2 wrote:
I’m also very interested in reading about Kudzu. I’ll look over the site but please tell me more if anyone wants to discuss.
Connie
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The best thing to do Connie, is to read over all the info, and ask any questions you may have. Kudzu has been very effective for some of us, didn't work at all for a couple of us and possibly dangerous for a couple of us. I will be happy to talk about it with you. PM me if you'd like. PF wishes, nani
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Others may come and go, but MY power is MINE.
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Connie2
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Re: Gamma Knife
« Reply #7 on: May 12th, 2005, 10:32am » |
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Nani,
One of the meds that I currently take is Klonapin. Is it safe to try Kudzu while taking that medication? PF wishes for all of you...
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nani
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Re: Gamma Knife
« Reply #8 on: May 13th, 2005, 12:45am » |
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Connie, when I checked this on drug digest interactions site this is what came up:
1 potential interaction was found for the drugs you selected.
You searched for interactions between the following drugs and herbs:
Klonopin
Kudzu
Add or Delete Drugs
Start Over with a New List of Drugs
(Note: Herbal products are not subject to review or approval from the FDA. Not all of the risks, side effects, or interactions associated with the use of herbal products have been studied. Not all drug interactions are known or reported in the literature, and new drug interactions are continually being reported. This information is provided only for your education and for you to discuss with your personal healthcare provider. )
ALCOHOL may interact with CLONAZEPAM (in Klonopin)
Although the cause of this potential interaction is not fully understood, intolerable or otherwise undesirable side effects may occur when clonazepam is taken with alcoholic beverages or alcohol-containing products (such as some cough syrups and elixirs). Potential side effects include drowsiness, dizziness, blurred vision, headache, and nervousness. Because the combination of clonazepam and alcohol (ethanol) may impair your judgment and/or reflexes, it may be dangerous to drive or to perform tasks which require you to be alert after taking these together. It would be advisable to avoid consuming alcohol while you are taking clonazepam. Discuss this potential interaction with your healthcare provider at your next appointment, or sooner if you think you are having problems.
This interaction is well-documented and is considered moderate in severity.
At this point there is no way to be sure kudzu is really safe taken along with any other drug. We know it's not wise to use triptans or verapamil along with it, but some have done so with no ill effects. All kudzu info at this time is either speculation or tester experience. I will say that kudzu may be all you need to take. Print the kudzu info from Flo's site and take it to you dr. See what he (she) thinks. Good luck and pf wishes, nani
http://med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu
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Others may come and go, but MY power is MINE.
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Connie2
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Re: Gamma Knife
« Reply #9 on: May 13th, 2005, 8:57am » |
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Nani,
Thank you so much for taking the time to show me this information. I will take this info to my next appt and will follow up and let you know how it works out. Many thanks to you...
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Lizzie2
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Re: Gamma Knife
« Reply #10 on: May 13th, 2005, 10:18am » |
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Still seeing Dr. Young?
If so, he's not going to make you stop Klonopin to take Kudzu, but still a good idea to run it by him.
If you ARE still seeing him, did he bring up Kudzu without you askiing or did you have to bring it up? If he brought it up, did he mention that one of his other patients had a potential serious complication from taking it. We can never be sure of all the exact reasons, but I had a major hemorrhage while taking Kudzu.
I'm not saying that's the cause, but if you are in fact still seeing Dr. Young, I'm just curious if he mentioned the adverse event since I think I was probably his only patient taking it at the time.
Hang in there and best of luck! I started to write a longer message yesterday about neurosurgery and some other things, but somehow I hit a button, and it all deleted!
Hugz,
Lizzie2/Carrie 
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Connie2
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Re: Gamma Knife
« Reply #11 on: May 13th, 2005, 3:37pm » |
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Hey there!
It’s nice to hear from you lil Liz. How have you been? No I’m not seeing Dr. Young, I’m seeing Dr. Silberstein now. I’m sorry to hear about your hemorrhage. Wow that’s scary stuff. What the heck happened? How is school going for you? I’ve read some of your posts. So you are living in Phili now. How do you like it?
Oops have to update... I forgot to answer your question. I have not discussed Kudzu with Dr. Silberstein yet. I just saw him last Monday and am expecting a call from the neurology center at Jefferson any day now to discuss the Occip Nerve Stim. I will talk to Dr. Silberstein about Kudzu because of the meds that I'm currently taking.
Please when you have the time, write to me about neurosurgery and the other things. Has Dr. Young suggested the Occipital Nerve Stimulator or Gamma Knife for you? I’m very frustrated right now and frightened of both surgeries. I feel like I’ve been pushed in that direction too quickly.
Hugz right back atcha,
Connie
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| « Last Edit: May 13th, 2005, 3:50pm by Connie2 » |
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Lizzie2
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Re: Gamma Knife
« Reply #12 on: May 13th, 2005, 4:22pm » |
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Never gamma knife, and I've been going there for 4 years now and been completely refractory to everything they've tried except for the hospital stays will drop my chronic daily migraine level down, but my clusters don't even completely go away with that anymore. 17 days the last time.
I went to see Dr. Sharan in neurosurgery. Let's see if this link works to get to the thread I posted about for it:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;a ction=display;num=1107821543
I'm not pursuing neurosurgery at all right now - and when you read the thread you'll see why. Dr. Sharan thinks maybe in like 3 years they might have a surgical procedure safe enough to try that may have better than a snowball's chance in hell of helping me.
I'm currently waiting for the release of the drug Lyrica (pregabalin) which should come out in September. I'm only living in Philly until May 31 (just about graduated from nursing school), and then I'm having bilateral knee surgery on June 1 at Presbyterian because I got Avascular Necrosis of both knees from taking steroids for headache. I'm going to Florida shortly after that...then to the American Headache Society conference at the end of June. On June 27, I begin working as a graduate nurse in the neonatal unit.
I hope to move to a new apartment by August?? Right now our 3 choices are in Malvern, Boothwyn (sp?), and King of Prussia. We'll see!
Take care!
Lizzie
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Connie2
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Re: Gamma Knife
« Reply #13 on: May 13th, 2005, 6:43pm » |
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Liz,
That made for very interesting reading. My CH & daily Migraines are located around the same area as yours. Also, the nerve blocks didn't work for me and my HA's do not stem from muscle tension...
I wonder why Dr. Silberstein doesn't know this informationand if he does why is he suggesting that I pursue this? I printed the thread to take to my next appt. I will not mention names. I do want to let him know that I have this info. and will ask questions.
Good luck to you. Thanks again and PF wishes!
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