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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Plz share your surgery experiences with me.

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Plz share your surgery experiences with me. (Read 1390 times)

ariel

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Plz share your surgery experiences with me.
Mar 31^st, 2012 at 7:11pm

Hello, I am just posting this here to get an idea of how many have had invasive procedures done in an attempt to stop your HA's. I am talking about radio frequency rhizotomy or the gamma knife, or trigeminal nerve root injury & nerve decompression procedures. I know these all aren't the exact terms but, I am going from memory. My quick background, I am on verapamil & continue to increase it with each EKG & also depakote & prednisone & the D3 regimin. About 20 years, most of those years chronic. Getting 1-2 Ha's a day now (down from at least 4 a day before steroids). Thank you to anyone who can reply to me.

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CHMatt

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Re: Plz share your surgery experiences with me.
Reply #1 - Apr 2^nd, 2012 at 1:59pm

I'm also a little over 20 years chronic. Back when I was about 6 years chronic and no meds were working at all I had two radio frequency rhizotomies on branches 1 and 2 of my trigeminal nerve.

The first surgery gave me complete relief for 6 months and then they crept back over the next 2 months. The follow up surgery gave me zero relief, just more facial and cornea numbness.

I'm still numb on that side of my face and in that eye but I still get the headaches (and I can't figure out how that can be). If you ask me now, post-surgery, the headaches are the worst pain I can imagine. However, if I look back at my behaviour during attacks pre-surgery I realize that it must have reduced my pain even now because my actions during the headaches aren't as extreme as they were pre-surgery.

Would I do it again, knowing it would only last 6 months? As desperate as I was when it was done, I would absolutely do it again just for those 6 months pain free.

Also they seem to be more controllable now with medication (or my doctor is better, it's tough to say which is the case).

Hope that helps.

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ariel

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Re: Plz share your surgery experiences with me.
Reply #2 - Apr 2^nd, 2012 at 3:53pm

Thank you for your reply. I understand how you feel. 6 months PF is a wonderful thing. You said you have numbness from the rhizotomies. Did you get that numbness mostly from the first one, or after the 2nd one? And, if you don't mind me asking, where is the majority of your pain (like, temple, eye, or face?) But my biggest question is if you were left with any type of new pain afterwards. I have read about some people getting a constant burning type of pain after the rhizotomy. I now have an appt for April 24 to discuss surgical options and I will keep everyone informed as to my progress. I wish the appt was sooner, but that was the quickest they could get me in. For now, it's just another verapamil increase.

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CHMatt

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Re: Plz share your surgery experiences with me.
Reply #3 - Apr 3^rd, 2012 at 9:25am

The numbness was from my first rhizotomy and it was my understanding that it wasn't even just a side effect but the ultimate goal of the procedure.

The majority of my pain was and still is in my eye and temple.

I did not have any new pain after the surgery. The numbness feels weird for a few days, but now I don't even realize it's numb 99% of the time I'm so used to it. You would have to be careful about getting dust or anything in the eye because you can't feel there's an irritant there so your eye won't water to flush the irritant out and you could end up with a scratched cornea. Similarly you may need to travel with eye drops to keep it lubricated.

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ariel CH.com Junior Offline I Love CH.com! Posts: 83 Long Island new York Gender:	Re: Plz share your surgery experiences with me. Reply #4 - Apr 3^rd, 2012 at 2:23pm Thanks for that. I looked up online about the 1st & 2nd branches, but really I have no idea whether it would help me as far as where I get most of my pain. I guess the only thing I can do is talk with a neurosurgeon. I'm sorry it didn't help you for more than those few months.
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CHMatt CH.com Junior Offline Posts: 45 Chicago Gender:	Re: Plz share your surgery experiences with me. Reply #5 - Apr 3^rd, 2012 at 5:34pm Regarding the branches, I'm basically numb from my upper lip and gums to about half-way back on the top of my head. I have full sensation in my ear but most everything in front of the ear (and above the upper lip) is numb. Full feeling in my tongue and lower-lip, chin, etc. Hope that helps.
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ariel CH.com Junior Offline I Love CH.com! Posts: 83 Long Island new York Gender:	Re: Plz share your surgery experiences with me. Reply #6 - Apr 4^th, 2012 at 5:49pm It does help, thank you so much. My appt has been moved to tomorrow morning to discuss surgery options after they had a cancellation. I will post what he says tomorrow.
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