New member...migraine surgery tomorrow

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New member...migraine surgery tomorrow

Post  Shannyn on Thu Oct 09, 2014 10:05 pm

Hello, my name is Shannyn, I'm 40 yrs and have been suffering from migraines for the past 25 yrs and chronic migraine for the past 4 yrs. I've tried every kind of med possible and botox. Botox worked at first and now not so much. I'm having surgery tomorrow and just googled the "side affects of removing the occipital nerve". I came across this group. I wish I had found out about this group along time ago. It's late now but has anyone had the surgery and if so, did you have the nerve removed or just decompressed. The dr said I can make my decision and tell him before surgery. I'm not sure what the downfall would be of having it removed. The dr says there is really no downfall except numbness. If there were no downfall to it, why wouldn't people just have it removed...so I'm a little concerned there has to be some kind of downfall.
I'm glad to have found this group and I will report back in a week or so regarding the surgery. I will check the posts before I leave for surgery and see if anyone had the chance to answer.
Thanks and I hope everyone has a migraine-free day!!
Shannyn Very Happy

Shannyn

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Re: New member...migraine surgery tomorrow

Post  Mini on Fri Oct 10, 2014 4:15 am

Welcome to our forum Shannyn. I am glad you've found us, this is friendly group of people who try to cope with this difficult condition.
I do not experience of surgery, but I have been having occipital nerve injections with steroid and lidocaine, which I found quite helpful, but not the same kind of relief each time. But of course this is not the same as a surgery, so sorry I cannot really comment of advantages, or disadvantages of going through it.

It sounds to me that perhaps you need a little more research before committing to an operation, which is likely to be irreversible. I am sure your surgeon would understand.
Perhaps you can start by doing a search on removal of the occ nerve this site, you might get some  useful feedback.
Have you tried any other method of controlling your migraine (M) before deciding surgery?

Whatever you decide I wish that you get a relief from pain soon.
Mini (UK)
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Mini

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Re: New member...migraine surgery tomorrow

Post  Lauren23 on Sun Oct 12, 2014 5:34 am

Shame they did not mention the fact, that sometimes we can also hear our own heartbeat.
Thank you MG, I will keep the link and sent it to all "non-believers". Rolling Eyes

Lauren23

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Migraine Nerve Decompression Surgery

Post  GypsyQueen on Sun Feb 12, 2017 6:10 pm

I found this forum trying to research other’s experiences with this surgery. I’m struggling a little right now but hope this can help you.

Just a little history: I’m 40 years old and had decompression/excision surgery on 8 November of last year. I’ve been suffering migraines since age 13, and EVERYTHING has been a trigger, but mostly weather (which I have no control over). I’ve tried every medicine and treatment (SNRI, SSRI, opiates, elimination diets, DHE, nerve blocks, Botox, SPG blocks, seizure meds, biofeedback, massage therapy, beta blockers, etc. etc.) under the sun and have seen at least a couple dozen neurologists, primary care doctors and ER doctors. My veins are beef jerky from all the infusions and I missed my eldest child’s college graduation because I was hospitalized after DHE gone wrong. To make matters worse, now any time they need a vein, they can only access it via painful PICC line or central line due to the brutal infusions so a quick ER jaunt isn’t even an option.

I was finally directed to a headache clinic in Dallas, that specialized in migraines, by an ER doctor whose wife suffered migraines and really felt for our plight. Unfortunately, while they opened up more options, nothing helped for the last year and I had to give up my full-time job, and, well frankly, my life. My husband had to drive me 2 hours into the city at least once a week to get injections and miss work himself because I never knew how I’d react – lucky me, the side effect queen. Living in the dark of your bedroom stinks and I hear depression is a co-morbidity, but how could you not be depressed when you live your life hiding from noise, pain and everyone you love? My husband married a well woman who within months couldn’t do anything resembling living, help support our household, or even vacation since every vacation off work since our honeymoon has included a hospital stay instead of a resort – plus who with chronic migraine would dare plan a vacation?!

Even the migraine specialist, who was a neurologist btw, finally reached the point where all we had left to try were more medicine combinations – not even new meds, just new hellish combos. I was still in pain but now also suffering a traveling sideshow of side effects from the meds that were almost as awful. I mean the icing on the cake is weight gain, hair loss, insomnia, drowsiness, muscle pain, elimination issues (feast or famine), mood swings, hot flashes, etc. etc., right?! Let me also add that during the testing phase, they discovered a cyst on the pituitary gland close to an artery and I went through a barrage of tests with a neurosurgeon to determine if this was causing my pain, added to it or was worth the risk of operating and ultimately decided it was not. Now, I just go once every year to get a PICC line for the day and new scans. Still, it was like waiting on presents Christmas morning, because you PRAY there is something wrong because that means there is the possibility of fixing it.

All this crescendoed into a do-or-die situation where I had to reassess my life and conquer these migraines or give up and be disabled – but I could no longer live with it. Finally, my neuro referred me to a plastic surgeon with whom she had interned. Even though the Botox had not worked, the nerve blocks done on only one side of my face DID work which was a ray of light after a very dark year. Things moved quickly after that and he scheduled the surgery, approved it through my insurance and set up the PICC line to get started. I don’t have to tell any of you who have been through this that we know there are risks. My risks were always a little scarier because I’m a medical bad luck story – like the WORST. If Final Destination had been based in a hospital, I would be the star. I ended up with extra bleeding and the worst case of nausea in the world, high BP, etc. Since we lived two hours away from the nearest decent hospital, he kept me an extra couple of days to get it under control.

Once I healed from the immediate pain, I felt great. I had a headache, but not a migraine… FOR 21 DAYS! I had taken 2 months off work on disability to really get over this once and for all. I had some issues with BP but took my pain meds and such for a couple weeks and then started adding normal tasks and moving about to my routine to be ready to go back to work after the Christmas holidays. I actually enjoyed the holidays with my adult children for the first time in forever because I got to PARTICIPATE! Unfortnately, also during this time, I began to wean off the last of my migraine preventatives.

FLASH FORWARD: I am miserable. I get these “brain zaps” that feel like someone is playing pincushion with my scalp a hundred times a day, and they make me visiblly flinch like I’m having mini seizures. I have had 2 migraine free days in the last 10 days. I’m so depressed because number one – the thought this was all for naught, and number two – that this was our last ditch effort and it failed. My work, my job, my kids, my parents – all these people that depend on me bought into my “miracle cure” philosophy because while I knew there is no cure, I needed hope. I’m hoping the “honeymoon” phase is over but that maybe some of this levels out over the next few months to a year. The surgeon reassured me that while most people get immediate results, some can take up to a year to see the full benefits.

I've read where people say it's a miracle and others who feel worse off. I can talk all day about this to my friends, family and coworkers but no one really understands how awful this up-down battle is. The hope is the worst part. I was told not to believe it as a cure but you cannot help it. I'm back to missing days out of every week at work but not just headaches now - weird muscle and joint pain, feeling like wasps are stinging me all the time, worsening depression daily, and itchiness that feel like the most extreme allergic reaction I've ever had.

GypsyQueen

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Re: New member...migraine surgery tomorrow

Post  lorente on Wed Mar 15, 2017 10:12 pm

Gypsy Queen, I sincerely hope things are improving for you. I know what you mean by the "ups and downs" of migraines, and of the "hope" that we all have every time we are given a new drug or a surgery or whatever. Please let us know how you're doing. -- Carol

lorente

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Re: New member...migraine surgery tomorrow

Post  GypsyQueen on Thu Mar 16, 2017 8:22 am

Thank you, Carol. Things aren't great but better than they were. I've had to go on a medicine for nerve pain, and am still having migraines. However, that being said it is only one med, not four, and the migraines are less frequent (weekly vs daily) and not as much status migrainosus. The neuropathy in my legs is troubling but not sure it's related. I try to be positive that there is improvement, just not as much as I'd hoped for.

GypsyQueen

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Re: New member...migraine surgery tomorrow

Post  lorente on Thu Mar 16, 2017 1:20 pm

Well, it is good to hear your migraines have gone from daily to weekly. I know that, when you're in the midst of daily migraines, once a week sounds like heaven. I have neuropathy as well, in my feet and hands, due to chemotherapy. The migraine med I'm on now is supposed to help with both. So far, it has helped with the migs -- I haven't had one in five days -- but not with the neuropathy, which seems to be getting worse. Oh, well, win one, lose one. So far, I can deal with the neurop if I don't have to have the migs.

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Re: New member...migraine surgery tomorrow

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