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Topic: Surgery (Read 663 times) |
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Headacheboy
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There is hope. I have suffered from chronic Cluster Headaches since 7/2000. After every medication stopped working after a short time, I was referred to a Neurosurgen who invented a simple surgery. I had surgery in April for the left side, surgery in June for the right side. This Doctor uses electric currents to fry the Ganglion nerve below your eye. There is a slight numbness in your mouth and nose, but the pain is so mild I don't need to take anymore medication. Yes, I have true Cluster Headaches and was on suicide watch for over 2 years. I know for a FACT that anyone who suffers from this DEMON should contact Dr. Antonio De Salles at UCLA in Los Angeles WWW.neurosurgery.medsch.edu . I am living proof that these horrible headaches can be stopped. This is no joke, I would not wish these headaches on my worst enemy.
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don
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Quote:| was on suicide watch for over 2 years. |
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2 years?
Who was watching?
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Headacheboy
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Do you still suffer from the Beast? My family was watching me for three years of hell. Now I live life without pain, Not whinning---Living. Do you know the difference?
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rumplestiltskin
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Yer UCLA link seems broken. Butt G and I went throughout the entire UCLA site. They seem to be on the "cutting" edge of some radiosurgical procedures.
Just gotta lot of questions.
Was this radiosurgery that they performed?
There is a conspicuous absence of mention of CH at their sites. Did it fall under the Autonomic Disorders Program? They did mention working on intractable pain patients under that umbrella.
Is this procedure for CH as new there as it seems? We kinda hoped to find some abstracts of research mentioning CH and this procedure.
Quote:| but the pain is so mild I don't need to take anymore medication. |
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so you still experience some pain? Does the pain follow the same frequency as yer CH did in the past? IE...do you think yer still getting clusterheadaches but just no OUCH anymore? Do you still get the classic eye drooping , tearing, nose running etc?
Did you get Clusters on both sides prior to the surgery or did it switch to the other side only after the first one?
Whats yer prognosis?
Quote:| I am living proof that these horrible headaches can be stopped. |
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Please realize that a statement like that sends reverberations through the Clusterheadache population like an 8 on the richter scale. We are a legion of greying medical guinea pigs, many still suffering daily from the worst pain known to man....skepticism and sarcasm run deep with us.
I feel like I'm cautioning you to be prepared for a plethora of disbelief and/or a lot more serious requests, like mine, for confirmation and qualification.
Yer concern for people who know CH pain will be evident.
ANY Cluster aborted or prevented or lessened is a reason for joy.
Thanks
den
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Hooter
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Thanks for the post Den, everything and more that I would have said.
Headache Boy, I really am delighted that you have found relief, but please do be careful what you are posting and where. You are already recommending an unproven surgery on other people's posts e.g. Josie's where you do not know all their medical backgrounds, and they are not even in the same country.
As Den says, you are dealing with a lot of people who are looking for a miracle cure, but may not have tried some of the first choice treatments yet.
Sorry to make it sound like I am a doubting Thomas, but what you recommend should not be depicted as a miracle cure yet. I am no doctor but "Frying" nerves in the face must carry risks for facial paralysis. Sounds weird to me, as I didn't think the ganglion nerve in the face had anything whatever to do with causing CH??
Must be someone here who can clarify this??
Hooter
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| « Last Edit: Jul 20th, 2003, 11:56am by Hooter » |
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Hooter
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Simon,
Have you formed a view here?
Does this link mean that the procedure is dealing with ONE of the resultant pain areas for some CH sufferers (trigeminal nerve) but not treating the seat of the problem.??
Hooter
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cathy
CH.com Alumnus
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Not all those that wander are lost......
  
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Re: Surgery
« Reply #7 on: Jul 20th, 2003, 3:25am » |
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Hi Headacheboy...glad your not in pain anymore, but I wonder was it clusters or was it headaches...or maybe it was TN...what were your symptoms etc, not being pickey here just want to know whether to book the tickets!
Hope you continue to be free of your headaches.
Cathy
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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Opus
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Re: Surgery
« Reply #8 on: Jul 20th, 2003, 9:07am » |
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Headacheboy,
I have only been here for a little over a year now but I have seen stories of this twice, the person has the surgery to stop chronic clusters, they are pain free for about two years, the pain comes back and they have a second surgery to complete the "cure", then they are worse than before the first surgery. Since these people don't stay to warn others I can only guess that they became incapacitated to the point of not being able to post.
I hope your PF time lasts forever and you never have to have a second surgery, If you do then talk to as many people who have had the second surgery as you can.
Opus/Paul
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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don
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You were on a suicide watch ffrom the age of 35 to 38 ?
I've had CH for 26 years and have never been on a suicide watch and I have never heard of one lastinfg for three years.
Quote:Dr. De Salles directs the Stereotactic Surgery Section at UCLA where he is responsible for the treatment of patients with brain tumors, cancer pain and several nervous system degenerative diseases. Dr. De Salles is nationally and internationally known for his scientific work on mechanisms of brain injury, and stereotactic techniques for radiosurgery and radiofrequency. He is currently an Associate Professor of Neurosurgery and Radiation Oncology at UCLA, and holds collaboration with several universities in the U.S., Europe and South America. He also has a large bibliography including a basic textbook entitled Stereotactic Surgery and Radiosurgery.
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Smart guy. Where is the experiance for treating CH ?
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Headacheboy
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Thanks to all who have replied. Yes,I do have true clusters, starts in the neck-eyebrow-temple-leaves through my ear. My eye waters-nose waters-then my nose becomes stuffed-eye droops-eye is red and can't stand light -noise and bang my head. The last medicine I was on was a combo ( Lithium/Verapamil). Imitrex,Max-alt,Frova etc. started to make the pain increase. My headaches were always on my left side until surgery. A month after the surgery they switched to the right side. I know when I'm having the beast, my eyes water,my nose is stuffy and I feel a tolerable amount of pain. I'm not a Dr. but know this surgery has been the only savior in my life. (Prednisone (30mg. daily) did contain my pain to some degree). I would recommend every CH sufferer to contact a Dr. that is knowledgeable in nerves. This surgery did not stop the headaches, it stopped the pain so far. To reply to the statement regarding the pain being worst after two years, I will find that out in years to come. One last thing, I will be having Radiation on the ganglion nerves to keep them numb for a longer period of time.
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Ted
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Re: Surgery
« Reply #11 on: Jul 20th, 2003, 11:21am » |
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I'm somewhat curious as to which ganglion was fried. Do you know if it was the sphenopalatine ganglion and if so had you tried the anesthetic procedure of a sphenopalatine ganglion block beforehand. And if so what the results were. If not, make up some results. 
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| « Last Edit: Jul 20th, 2003, 11:22am by Ted » |
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don
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Quote:| If not, make up some results. |
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ROFLMMFAO
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Headacheboy
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Ted, I did not have any procedures prior to this surgery. I have been told by my neuro at UCLA I am one of the worst cases they have seen. Not only do I suffer from the clusters, but I had the shooting pain from my eyebrow to my ear when I was not having an attack. One question I have to all CH sufferers, do you have to always try to crack your neck? I know when my attacks are coming on when I start feeling my neck tightening up!
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don
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It cracks all by its lonely. I move my head around and it sounds like my neck is cooking Jiffy Pop.
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Hooter
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I may be wrong here, but having been worried that people might be keen to follow in Headache Boy's footsteps to have this 'miracle cure', I feel quite happy that most of us would go for trepanning by an axe-murderer first rather than having our brains fried twice then then having our heads irradiated.
Or is that just me?
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Headacheboy
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Hi this is Headache Boys wife. I'd like to respond to having your brain fried!! This is not what happens. The surgery is dealing with the nerves not the brain. It has helped my husband and may not help everyone else. I thank god for this procedure and have watched my husband get his life back. As a spouse there is nothing worse than watching the person you love suffering in such horrible pain and not able to do anything, This procedure is worth checking into. I know I too was skeptical at first but now its true it can work. He does have side effects numbness of the top of his mouth and dry nose, but I think thats a small price to pay compared to these headaches.
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Ted
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Re: Surgery
« Reply #17 on: Jul 20th, 2003, 12:17pm » |
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Nope. I'd probably rather have my brains fried twice and then having my head irradiated before having my head trepanned by an axe murderer. However, it doesn't sound like this procedure is touching the brain at all but is applied to a ganglion in the face.
Also, just so you're not worried about lines forming for this procedure, generally when a procedure is introduced here, especially surgery, it goes through many questions so we can do our own evaluation on if it really would be effective or a load of shit (You should have seen the questioning and skepticism Flash got when he first brought the concept of shrooms to this board years ago). Kind of an open air policy. Actually, the questions aren't asked of all procedures brought here. Sometimes we just beat up on the salesmen who bring their wares and we have lots of fun doing it.
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| « Last Edit: Jul 20th, 2003, 12:18pm by Ted » |
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Donna
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Re: Surgery
« Reply #18 on: Jul 20th, 2003, 12:31pm » |
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Headacheboy........thanks for sharing. Be prepared for lots of comments and questions.......we are a large group of sufferers trying to weed out the many phoney people and cures who drop by.
I truly hope that your procedure will do all that you hope it will. We are happy to see any ch sufferer find relief, even if it doesn't work for us all.
No matter what, stay with us and help support those who need it. Just pull up a chair and get comfortable for awhile before jonny sees you and throws the oars to you......he's a tough captain. He wants everybody to row doubletime when they're feeling good. 
Headacheboy's wife......you are so right about how hard it is watching a loved one suffer, especially when there's not a darned thing you can do to help but stay out of the way and be quiet. Why don't you join us supporters in our corner? We'd love to talk to you, and perhaps draw from your strength now that your husband is finding relief.
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Headacheboy
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Words to all CH sufferers. You have NOTHING to lose but alot to gain if this procedure will work for you! We are all optomistic about surgery on nerves, but one phone call could change your life. Remember you have nothing to lose except your pain.
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Hooter
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Sorry Headache Boy and your wife. I was being facetious as I am personally far too much of a coward to go for ANY of the surgical interventions until they have been tried on a few thousand other people first.
I am truly glad for both of you that this has worked for you and absolutely would defend your right to tell people about it. What I was concerned about was you recommending it to newbies who have not tried the conventional routes first. I still think this is inadvisable.
I recognise that you sound like you fall into the group I mentioned, those whose condition is chronic and recalcitrant and for whom neurological procedures are the only thing left. Were I in that position myself I might sing a different tune about allowing someone to try a procedure they had 'invented' on me.
I hope beyond anything that this procedure works permanently for you.
Hooter
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Headacheboy
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Thanks Hooter, I do recommend trying meds and any other treatments before surgery. I was told by my neuro at UCLA there was NO MORE meds to try. I am a chronic sufferer who would do anything to get my life back. I'm not afraid to voice my opinion to all. I no all about the fear of going to sleep and waking up to an attack worst than any nightmare. I'm giving this info for those who cannot stand the HELL I've lived for the past three years.
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Ted
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Re: Surgery
« Reply #22 on: Jul 20th, 2003, 1:15pm » |
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I haven't read which procedure this is yet and will be doing so later in the day. But to make the comments you have nothing to lose and that we are all optimistic about surgery on the nerves is a pretty irresponsible message to send out. We have a lot to lose with nerve surgery (though, as I said, I haven't read up on yours yet). Facial paralysis, a new and constant pain and severe numbing (which could result in not knowing when another pain is present and should be taking care of what would have been a warning) only to have the clusters come back in a year or so, assuming the surgery actually did work on the given patient. If not there's the numbing, a new and constant pain, paralysis AND clusters not being affected. For clusterheads this is more the case with most nerve surgeries. So, that's quite a lot to lose. And, as you can imagine, we ALL are not optimistic about nerve surgery. Most are skeptical.
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| « Last Edit: Jul 20th, 2003, 1:23pm by Ted » |
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Headacheboy
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Ted, In regards to nothing to lose. I lived 20 hours a day in pain. Morphine, Demeral etc. no longer took away my pain. I have NO facial numbness, the roof of my mouth in numb (Yes, I do have to be careful eating hot food) I do use saline solution 2 to 3 times a day to keep my nose moist. But it sure beats the hell out of the PAIN. Like I said, I am a chronic sufferer who had this beast EVERY day. I personally had nothing to lose!
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Ted
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Re: Surgery
« Reply #24 on: Jul 20th, 2003, 1:42pm » |
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First of all, I don't think you really want to get into a pissing match with me of how long we've had CH and how bad our headaches have been because you'll embarass yourself.
Second of all, I haven't knocked the procedure you've had because I haven't educated myself to it yet. I DID knock your blanket statements of we are all optimistic about nerve surgery because there are several of them out there and most are detrimental. And your statement of we have nothing to lose since, as you said, it's a very new treatment and you're judging from your own experience where you lost partial feeling in your mouth. Not from any long-term studies that have been performed on numerous patients and what they've lost, if anything.
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| « Last Edit: Jul 20th, 2003, 2:04pm by Ted » |
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