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Topic: surgery option (Read 290 times) |
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govna12
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surgery option
« on: May 3rd, 2006, 7:06am » |
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I am in my 2nd month of this cycle. It is getting to the point of being life changing. I am on perkoset, steroids, and topamax, it seems to be lowering the pain but they are still there. I am considering surgery as an option to cut the nerve that causes the headaches. It is permanent and can't be reversed. Has anyone had this surgery and what was the outcome?
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E-Double
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Re: surgery option
« Reply #1 on: May 3rd, 2006, 7:16am » |
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I have not had it done but will speak for those here who have.
They not only have permanent paralysis on the side of the face where the nerve was cut but still have Clusters!!!
My friend 2 months is nothing in the grand scheme of things.
You need to find an effective abortive!!!
You do not mention any use of triptans, ergots or OXYGEN!!!!!!
Those are what will bring you relief
read this:
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2 005;action=display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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BarbaraD
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Re: surgery option
« Reply #2 on: May 3rd, 2006, 7:17am » |
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If you're episodic, surgery is not an option. After you've been chronic for a year or two, a doc will discuss it with you, but it's a LAST resort.
I was interviewed for four straight hours before Dr. Hurt decided I was a candidate for the surgery and even then he gave me a cooling off period. I was at the point of NOTHING WAS WORKING and nothing had worked and even death didn't sound like a downside at that time (and yes that is one of the things that can happen with the surgery).
Some of us have been chronic for years (I have been since 97) and you learn to live (and carry on) with CH.
Since the surgery, I have a paralysis on the left side and optic nerve damage that I have to live with from now on. I had an 80/20 chance going in that this surgery would help the headaches and it didn't. I still have CH and after all this - I found topamax and it actually helped to control them.
When I was episodic, I can remember the last few weeks of my cycle I would beg to die, but it would end and I'd be ok for a while till the next one. After I went chronic, I really wanted to die, but after years of living with it, I've learned to accept that I'm gonna have them and there's not a damn thing I can do about it so I've learned to live AROUND them and just go on with my life.
There's a lot of stuff in the archives about this surgery and the Gamma Knife and some others. Read all you can and don't go to some kook who's knife happy. As you said it irreversable and it's not a fun thing to live with.
Hugs BD
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clarence
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Re: surgery option
« Reply #3 on: May 3rd, 2006, 7:55am » |
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I might have missed it in E2's post, but I didn't see www.clusterbusters.com mentioned above. Before you ever consider surgery, at least give Cluster Busters some consideration.
Casey
edit to add - If you have Cluster Headache, it is life changing. No two ways about it, your life has changed. It sucks, but that is the way it is. It is not the end of the world. It is the beginning of a whole new stage of life. And I promise you one thing - if you need help on this journey, you are in the right place.
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| « Last Edit: May 3rd, 2006, 7:59am by clarence » |
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The mad viking
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Re: surgery option
« Reply #4 on: May 3rd, 2006, 8:04am » |
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All i can say in this matter is that our docs and neurollogists here say NO to "clustersurgery"of any kind.
Its devastating and destructive in their mind.
There is a LOT of things that you should consider before even think that thought.
There is a lot of good combo meds out there that help,and also www.clusterbusters.com
Svenn
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gore2424
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Re: surgery option
« Reply #5 on: May 5th, 2006, 8:04am » |
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Hello I had the surgery done (trigeminal rhizotomy) in May 2002 as last resort after being chronic since 1999 and trying over 67 different meds in many combos. Had it done in Mayo Clinic in Rochester Minn. They cut the trigeminal nerve on right side. Face numb forever not revesible and I only got over 4 months relief then back to clusters full force. I was the 6th one the Dr had done others was 2 no clusters for over 3 years , 3 clusters from chronic to mild episodic, 1 did not help at all. I was so tired of pain and almost losing everything I decided to do it and if had the choice again wouldnt do it but am on good enough meds now that I can function daily. Terry
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govna12
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Re: surgery option
« Reply #6 on: May 9th, 2006, 9:29am » |
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This is my 2nd cycle. The 1st one lasted about 8 months and felt like it took 8 years off of my life. Oxygen has not helped. It has been 2 years since the the 1st cyle ended and I thought it was over. The pounding lasted 2hours and 20 minutes on Sunday, the worst I have had. I just want the pain to go away. The surgery option was something I read about and thought I could get opinions from some of you. I am not to the point of having it done.
Tim
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unsolved1
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Tim,
This must all be new and terrifying to you (dealing with clusters). I understand your fear. You must know that there are many different things out there to try first. Many medications to try. No one should have surgery for clusters until they have tried all else. If there is a doc offering you surgery now, he must be a quack!
The others have given you many examples. Eric provided you with a few good links. Check them out.
If the Topomax is not helping with the headaches, maybe you should consider the next med to try. Have you tried the most common CH treatment ... the Lithium/Verapamil combo?Oxygen?Imitrex?
Start at the top of the list and work your way through it til you find something that helps.
If you have any questions, feel free to ask. Post here on the board or PM me or Eric or somebody.
Until then ... take a deep breath ... try to relax. You will overcome this! You MUST overcome it! 2 months in may just be the beginning! 
Goodluck
UNsolved
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