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Topic: Surgery WTF no I don’t want to! (Read 251 times) |
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Mattrf
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Surgery WTF no I don’t want to!
« on: Jul 7th, 2006, 5:54pm » |
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First off most of you already know I have SUNCT not CH but they are probably bad brothers sharing most of the bad chromosomes.
So I get a call from my doctor, he is concerned about my liver test, second one and he can see a bit of damage from the Tylenol I have been taking for seven months now.
He is very concerned about the headaches not going away and is concerned for my liver, nice of him, hay I have a lot of beer to still drink in this life so I really appreciate him looking out for me.
He put me on Lamictal and it did not seem to help a week ago he added a second med twice a day, sorry do not remember the name but it does seem to have helped some. He said that if we don’t see a dramatic decrease in my headaches in two weeks that he wants me to go see a doctor in Scottsdale that is supposed to be one of the best in the world he is at the male clinic there, he said that they will wont to do some kind of surgery on me to get rid of the SUNCT headaches. Now since CH and SUNCT seem very close in what they do I am assuming that the surgery is probably the same as some people her have had and it scares the crap out of me, I don’t think I have heard of anyone having a positive experience with surgery.
Say some prayers send some positive vibes that this little brake I have had for the past two days sends me to permanent PF time till next time so they don’t want to cut my noggin.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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floridian
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Re: Surgery WTF no I don’t want to!
« Reply #1 on: Jul 7th, 2006, 6:08pm » |
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Surgery for clusters is a last resort. Worth considering if a person has tried everything, and nothing works. Not sure how deep they go for SUNCT - might be a different procedure, not as deep. Check it out thoroughly, hope you get PF.
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Karla
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Re: Surgery WTF no I don’t want to!
« Reply #2 on: Jul 7th, 2006, 10:05pm » |
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There is no way I would go for that! Sounds like your dr just doesn't know what to do for you and is passing the buck off to someone else. Find yourself a knowledgeable neurologist. I will be praying for you.
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Karla
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Jonny
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Re: Surgery WTF no I don’t want to!
« Reply #3 on: Jul 7th, 2006, 10:06pm » |
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on Jul 7th, 2006, 10:05pm, Karla wrote:| There is no way I would go for that! Sounds like your dr just doesn't know what to do for you and is passing the buck off to someone else. Find yourself a knowledgeable neurologist. I will be praying for you. |
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DITTO!!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Mattrf
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Re: Surgery WTF no I don’t want to!
« Reply #4 on: Jul 8th, 2006, 12:12am » |
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He is supposed to be the best in NorCal and the guy at the Male Clinic is suppsed to be one of the best in the world. Well I had two days PF and I think it may be from the new meds but was hurting again today but nothing over a 4 so not bad and better then I have been for the past seven months so I am praying that the new meds work so I don’t have to even consider the surgery. Remember that I have SUNCT no CH but be certain I will research what ever type of surgery they want to do and post it here to see if it is the same as a few here have had and if it is I will tell them how far to stuff it up, well you know where. I am not going to take the chance of loosing the feeling in my face or the sense of taste just to have the pain come back, it is to big of a price to pay for a maybe it will work.
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There is no stronger a person then one who can deal with brain pain and still function.
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noneya
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Re: Surgery WTF no I don’t want to!
« Reply #5 on: Jul 8th, 2006, 12:52am » |
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I'm about 99% sure that the surgery for SUNCT is the same as for CH. My friend also has SUNCT and they tried to get him to go the surgery route (he told them politely to kiss his rear).
Matt, you could wind up with the horrible sunct + the loss of facial movement, hearing loss and many other negative side effects. Please do some research before you agree to this procedure...get a 2nd opinion...then a 3rd!
Sending those permanent PF vibes your way my man.
BJ
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Charlie
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Re: Surgery WTF no I don’t want to!
« Reply #6 on: Jul 8th, 2006, 2:33am » |
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Lay off the surgery. Not a good idea and there is way too much done in this country today. I've turned down several surgeries. My current neurologist said I did the right thing. Nobody digs around in your brain to explore.
You know, there have been many articles in the last week about Tylenol and the liver. Take your time worrying about that too. Doctors are a little nervous because of it.
By the way, I take Lamictal too for my seizures. It's not all that great, helps a little and of course, it's primarily an anti-depressant.  Great.
Charlie
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Kirk
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Re: Surgery WTF no I don’t want to!
« Reply #7 on: Jul 8th, 2006, 3:19am » |
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I'm not sure. But I think I have the record for major surgical procedures on the board. Although DJ might have me beat on having his skull delved into. Could be a tie.
Think lonnnnnnng and hard before you elect to have a procedure like that done. The success rate is not good.
YMMV 
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Bob P
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Re: Surgery WTF no I don’t want to!
« Reply #8 on: Jul 8th, 2006, 7:53am » |
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The Mayo in Scottsdale, it's probably Dr. Dodick. He is one of the best and a good friend of OUCH.
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BarbaraD
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Re: Surgery WTF no I don’t want to!
« Reply #9 on: Jul 8th, 2006, 8:05am » |
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Had the surgery in 99 - didn't help, but I've got optic nerve damage, paralysis in my jaw and a few other things -- for life!
Mine was a Stereotactic - Radiofrequency - Trigeminal Rizotomy. Think LONG and HARD before you have the surgery.
Hugs BD
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deltadarlin
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Re: Surgery WTF no I don’t want to!
« Reply #10 on: Jul 8th, 2006, 9:30am » |
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This is a bit off the subject here, but Matt, there is something you can take that will help with your liver. It's called milk thistle and you can buy it otc at Wal Mart. My liver gets very upset when I don't treat it just right, so when I have to take meds that damage the liver, I take milk thistle. So far, so good.
Carolyn
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alchemy
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Re: Surgery WTF no I don’t want to!
« Reply #11 on: Jul 8th, 2006, 10:15am » |
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Dr. Dodick is the doc at Mayo that just accepted me. waiting on an appt.
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karma
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Re: Surgery WTF no I don’t want to!
« Reply #12 on: Jul 8th, 2006, 10:32am » |
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There is no way that anyone, regardless of their credentials, would get my go ahead to cut open my head and fuk around with anything inside it to alleviate CH.
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| « Last Edit: Jul 8th, 2006, 10:33am by karma » |
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