Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

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Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

Post  Hpfl4relf on Thu 12 Mar 2015, 8:09 pm

Good evening (or morning or afternoon depending on your location:)

I'm new to this forum but noticed posts regarding surgical procedures for migraine. I was curious what members thought about the pros/cons of the available surgeries. I recently attended a webinar about neuro stimulation but have also read about nerve decompression. I was curious if anyone has had either of these procedures (or other surgical procedures) the outcome, and any wisdom you may be able to lend. I have been a Migrainer since my late teens, early twenties. They became much worse and I have not worked in three years, the last two plus years being a barrage of daily migraines. I did have a 3 ½ day break, which was wonderful while it lasted. I have tried so many treatments familiar to everyone who has been in this "Underworld" for any significant time. I am at a crossroads. After ditching my second "headache specialist" (as a side note, I think a prerequisite for becoming a headache specialist should be that he or she have a significant personal relationship with migraine - just saying!), I'm looking at other options. My FP is wonderful. She has a daughter who suffers from migraines and she had actually had a migraine before. She is definitely a doc "out of the box" and open to trying new things. I told her about the nerve stimulation sx and she suggested I try Marinol while I research and ponder my other options. Any takers on this topic?
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Re: Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

Post  Cluelesskitty on Thu 12 Mar 2015, 8:20 pm

Hello and welcome cheers

I personally never had any surgeries done for my M (migraines), somehow it never came up for discussion,  
but as you saw Trinity has done nerve decompression and is very happy with the results.
I am sure she will pop in sooner or later,  and will give you whatever info you need.

You mentioned you take Marinol currently, does it help? and how about other medications, have you ever tried typically triptans,
and/or any preventive meds in the past? did they help any?

Risa

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Re: Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

Post  sconesail on Sat 14 Mar 2015, 5:37 pm

Hi and Welcome,

I have chronic intractable migraine/New Daily persistent Headache and I have an occipital nerve stimulator. For me, the stimulator works pretty well. I know that it isn't for everyone, but it has helped me tremendously.

I got my first headache at 12, but they did not become chronic until I was 17. I was eventually diagnosed with chronic intractable migraine/New Daily persistent headache. I saw countless doctors and tried almost everything imaginable. When I was a junior in college, I went on long acting pain meds for a bit to keep me out of the ER until I could get in to a headache clinic in Michigan. When they finally did some occipital nerve blocks, I had tremendous relief. This was followed by radiofrequency to nerves in my neck and led to a period of remission lasting eight months. A few years later, I went to the Jefferson clinic and the doctor there suggested the stimulator. I said "When can you do it." The ten day trial qent well and it was permanently implanted in June 2004.

I had another great period of remission lasting about eight months. During this time, I would still get migraines, but they responded to medication and I might get a really bad one that required either a course of steroids or an IV once a month- and I had pain free days! This is great. In March 2005, a lead broke. Fortunately, it was only one lead and they were able to program things so I could use just one lead. Once the lead broke, I had to go back on some long acting pain meds, which worked- but didn't cut out a lot of the pain. After the repair, the migraines were daily once more. However, the stimulator allowed medications to work and I did not have to take as much pain medication. This alone was enough to prove to me that I was better with it than without it.

I had to have it the extension replaced in 2007. And, after breaking both leads in 2010, my doctor essentially replaced the entire thing. It works very well for me. Without it, I'm not sure what I would do. Years ago, my doctors and I basically decided to deal with the pain and other symptoms in order to keep me out of the ER or Hospital. If I didn't have it, I would probably have to be on extremely high doses of pain meds and even then, it was nearly impossible to control.

I know that everyone's experience is unique. Also, I hope I didn't scare you too much with the information. For me, the stimulator has been a godsend.

One of the most important things is to find the right doctor or surgeon who is experienced and who will work with you. Do your research. You want someone who has a good bit of experience in doing this for headaches. This is still an "experimental" procedure, so definitely check things out.
Some insurance companies will cover this treatment, others will not. It is always hard to get it approved.
If nerve blocks have helped you in the past, then this would be good route to take.

I don't know much about the nerve decompression surgeries, but there are people here who have had it and have had good results.

Feel free to PM me if you want more information.

Pain free days,
sconesail

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Re: Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

Post  Hpfl4relf on Sat 14 Mar 2015, 6:52 pm

Sconesail,

Thank you so much. This is exactly the kind of information I was looking for...I haven't explores PM yet so I may have to give it a try. You didn't scare me. I would rather have someone be honest and frank with me than anything else. I'm trying to get as much info as possible. I have not had nerve blocks before. I have had a series of injections in my head, neck, shoulders and face with Marcaine/Lidocaine. I would get them every other Friday for 4-6 sessions. It was between 30-50 injections. It would numb my head for an hour or so but that was about it. Of ciurse, I've tried more meds than I can count from triptans to pain pills to antidepressants and the typical anti-seizure meds. I haven't had pains meds in a couple of years. I've just found I would build up a tolerance and make the migraines worse. I'm actually getting so tired, physically and mentally, from these things. I'm sure I'm not alone when I say there have been many moments when I would ask God to just let me die rather than deal with another. I've just started a new Rx called Marinol (drionabinol. Many people think it is a pain med because is is synthetic THC but while it is a Cannabinoid, it is not a pain med. It definitely helps with the nausea and until an hour ago, I had no nausea and my migraine pain was much more tolerable. I never got a high or dizzy feeling or any other possible side effects. You take it twice a day so I'm waiting until just before bed to take it again. It seems to only last 4-6 hours. I'd rather have take it when it is time to sleep since a poor night's sleep is definitely a trigger that makes matters much worse. Right now, I'm taking 2.5mg BID (twice a day). Next week, I will increase it by another 2.5 a day. The following week another increase in 2.5 mg. Apparently, the dosage can go up significantly but I'm sure it is smarter to start slow. Thank you so much for sharing. If you can think of any questions for me to ask about the procedure, let me know. I do have a question for you? Was this procedure also called the Reed Procedure? I ask because this was the name of the procedure I was looking into. Apparently, it was started in Dallas, Tx. Not sure if this is the same but I sounds like it. The only concern I have about the nerve decompression sx is that by essentially stopping the pain in those nerves, my understanding (which could be wrong) is that you still have the migraine, you just don't feel them or know when you are having them. That sounds a bit dangerous to me. Studies has shown chronic daily migraine (especially those with aura, which I have had all my life) is the increase in possibility for stroke. Maybe the research has changed. Anyway, thank you, again. God bless and I really hope you continue to have improvement.
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Re: Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

Post  7777Trinity on Sun 15 Mar 2015, 7:34 am

Hi!
You caught up with me on FaceBook and as you can see there is a lot of information on different treatment plans. Migraine Nerve Decompression surgery has given me a life again.

It feels odd for me to be starting over in a sense, I am nearly 60 but feel 30 inside. Joining the YMCA again this week to try to get my atrophied muscles to co-operate with my mind Smile Right now that is the biggest challenge after being bedridden for so long, getting bones, muscle and tendons strengthened again. The first 3 months after surgery I had shredded my Achilles tendon's in both heels, not realizing they had shrunk. I was just doing a lot of walking and did not realize just because I could do it, I needed to pace the physical activity until my body caught up Smile

Heels are fine now and it has been 9 1/2 months since surgery. I am hoping by my 60th birthday I will have the physical recovery that I have had for my head!!!
Trinity
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Re: Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

Post  Hpfl4relf on Thu 19 Mar 2015, 8:54 pm

That is more good news. How nice to hear you are getting to find out who you are capable of being again. I am a member of the YMCA and am lucky if I get to go once a week. If my migraine isn't too bad, I can get on the treadmill and jog awhile and it will actually subside for a little while. If I work out too hard, which I seem to apparently do often, the ,migraine will be so much worse when it returns. I can hardly believe I am 47 and live like a disabled adult. I still refuse to say I am sick or would hate for someone to refer to me that way...crazy thing is...this is a disease...it certainly has affected my life more than any other illness ever has....it has destroyed my quality of life...eats at my hope of a better life and sometimes has even sparked me to question my life....yet, I still believe other than this "small detail called migraine", I'm a healthy adult....I may need more help than I thought. (;
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Re: Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

Post  Migrainegirl on Fri 20 Mar 2015, 11:22 am

Hpfl4relf - have you looked into bio-identical hormones?  I got a lot of relief from natural progesterone and magnesium.
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Re: Migraine Surgical Procedures: Spinal Stimulation versus Nerve Decompression

Post  sconesail on Sat 21 Mar 2015, 4:54 pm

Hi All,

No, I did not have the Reed Procedure.

My stimulator was implanted in 2004 at the Jefferson Clinic in Philadelphia. I had the option of being in a clinical trial, but chose not to pursue it via trial. I was between phase II and III clinical trials. It works very well. I really love my neurosurgeon, who moved to Denver and currently practices there.

I have heard very good things about the Reed procedure though. I think the only difference is that they implant 4 leads instead of two. I believe they place leads over both the trigeminal nerve- located near the temples and the occipital nerves in the back of the head. This gives more stimulation. So that is good. I now get botoz injections which cover the area. That and the stimulator have greatly improved my quality of life.

I'll be happy to answer any more questions you may have.

Love,
Anne

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