18 days Post-op

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18 days Post-op

Post  7777Trinity on Sat 05 Jul 2014, 6:09 am

Hi!
It's been 18 days since surgery and I am feeling really well. The monster is gone Smile I started walking last Monday 1 1/2 miles each morning, early before it gets hot out. It feels so nice to be outdoors again!!

I have noticed the sun on the top of my head causes a "pins and needles" feeling, so I wear a cap. Sunglasses are for light sensitivity. All of this will clear out by my 90 days recovery, which is September 17th. I have to go back to Boston to see the surgeon on September 25th to see how I am doing.

If I can say anything, it would be to find a surgeon who will do all your trigger sites and diagnose it as "Neuralgia" so insurance will cover it.

Trinity
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Re: 18 days Post-op

Post  milo on Sun 06 Jul 2014, 9:58 pm

Doing a happy dance for you!!!!!
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Re: 18 days Post-op

Post  7777Trinity on Mon 07 Jul 2014, 12:09 pm

Milo
Me too! I made it yesterday without the muscle relaxers and today, no spasms in fore head Smile oh yeah! So I ditched the muscle relaxers too!

I will be 3 weeks post op tomorrow. Meds: Motrin for achy feeling in neck. Still feels like my head is very heavy and my neck gets tired of holding it up. I nap every day to help with that. Eyes are much better and the monster is gone Smile

What a new life this is, I am not sure how to act. Sometimes I feel silly and laugh a lot, other times I wonder if I am being too child like ?? Then I think of the decades lost and think, "it's okay for me to have fun, to be happy".

Trinity
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Re: 18 days Post-op

Post  Migrainegirl on Mon 07 Jul 2014, 12:20 pm

Just enjoy life as much as you can. You see what many people take for granted. We know to savor the good days. So glad for you.
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Re: 18 days Post-op

Post  30yrsofheadache on Mon 07 Jul 2014, 3:54 pm

Laugh all you want to, dance around. You deserve to have some fun! cheers 
Hugs,
Cindy

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Re: 18 days Post-op

Post  kimsmom on Fri 11 Jul 2014, 8:11 am

I am so happy for you! You are right to dance, sing, yell, anything you want to do. Losing all those years to migraine is horrible. I have lost so much. People just think I do not like to do things, when in reality I would love to go downtown to see an NFL football game live, but the crowd and noise would kill me.

I had to go to my daughters orientation for college and spend the night with a stranger that the college just randomly put me with as a roommate. This stressed me out so much I got a horrible migraine that my meds did not hardly touch. After I met the "stranger" we got along beautifully, my migraine subsided.

Enjoy your new found freedom and do anything and all you would like to do. This is your time to shine!

Hugs to you,

kimsmom
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Re: 18 days Post-op

Post  7777Trinity on Fri 11 Jul 2014, 6:26 pm

Kimsmom
Thank you. Today is 3 weeks 4 days post op. I am doing great, monster is gone Smile I got off the Nerve Board that was on FB. There was a girl, Amy Bagall(?) who has had multiple surgeries, only 2 sites at a time and is always complaining and saying her surgeries are not successful. Such a downer to hear someone like that when others are looking for hope.

It turns out, that people who have "Full Decompression and Excision" done at the same time, addressing all trigger sites at once are the once who are 80%-100% reduction or end to migraine. This lady keeps telling everyone to have multiple surgeries, that the recovery is too hard from a Full Decompression. ( what a butt head)

No shit Sherlock Smile , it is hard BUT the monster is gone! The surgical recovery is 90 days...period, so we just have to work through it, rest, rest, rest and not think at 5 or 6 weeks you can carry a case of water or something stupid like that and then rip apart everything in the GON that has to heal specifically over that period of time.

So I am a little pissed at this girl, she really does a lot of damage being on that board. I can't stand to read her comments are those of who read them and are so distressed. I wish she could be banned.

My rant and Vent for today Smile Hey, at least I feel so good I can think clearly enough to rant! Smile

Trinity
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Re: 18 days Post-op

Post  Sara79 on Sat 12 Jul 2014, 1:03 am

I'm so happy for you! I've been quiet on the boards due to a bad spell, but wanted to send you a huge smile! Very Happy 

As for that Amy person, I wouldn't let her run you off completely. I'd at least post your thoughts and experience so far, so that others can see that multiple surgeries could extend the amount of time they remain in pain. If, after you put your side of the story on the site; you still feel that she's horribly caustic and not someone to stay around, leave, without any possible regrets from not sharing your story.

But obviously, this is my opinion, and we should all know the saying about those  Wink , so you know what's in your best interests more than I ever could.

Thanks for keeping us in the loop, I'm loving hearing a success story!

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Re: 18 days Post-op

Post  Cluelesskitty on Sat 12 Jul 2014, 2:54 am

I am ecstatic for you, Trinity! what a wonderful, wonderful news!  cheers 

Risa

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Re: 18 days Post-op

Post  Migrainegirl on Mon 14 Jul 2014, 1:04 pm

Hi Trinity,

Where exactly did they do the incisions, if you don't mind my asking? Are they big or small? And how do they determine just which nerves to operate on?

Am reading more about this surgery. It certainly seems to be working for many people. I hope you are continuing to do great!
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Re: 18 days Post-op

Post  7777Trinity on Mon 14 Jul 2014, 3:46 pm

Hi MG!

The surgery is a miracle Smile I received my "Operative report" in the mail today so I can tell you where everything was. The incisions are at the base of my neck going straight up to about the middle of the back of my head. This is where the Greater Occipital Nerves are and they ablated the neurovascular structures there, removed a cuff muscle that was pressing on the nerves and did a bunch of other stuff around the nerves to keep them from being touched and prevent nerve scarring.

Then an incision was made over the right lesser occipital nerve, part excised and all widely decompressed. That is an area between the back of the neck and up behind the ear.

Then they flipped me over and went through my upper lids to get to the neurovascular bundle in the supraorbital nerve area. There was a notch on both side which were released and followed to the supratrochlear nerve and it too was released (near ears). Then incision over the zygomaticotemporal and avulsed(removed) these nerves bilaterally as well as the temporal neurovascular bundle was ligated, (closed off so they can send messages any longer, both temples).

Fore head muscles were cut as well so the nerve between the eyebrows can't be triggered.

Tomorrow is 4 weeks since surgery and the monster is gone. The recovery from this surgery is slow, 90 days so plan on taking it easy. about 70% of my skull is still numb, feels weird Smile I have been off narcotics since day 5 after surgery. I only take Motrin now for a muscle spasm I was having in my right brow, which is now gone and some achiness in my eyes, which is about 75% gone now. My neck is weak from having a chunk of muscle cut out of it that was pressing on the Greater Occipital Nerves, it doesn't "hurt" just gets tired and a little achy. That said, I am only 1/3 of the way through the 90 day surgical recovery, so I think I am doing great!

Trinity
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Re: 18 days Post-op

Post  Migrainegirl on Mon 14 Jul 2014, 7:22 pm

Wow, that's a lot. But it sounds like it has done the trick. I've been reading about a number of people doing this surgery. Thanks for sharing your experience.
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Re: 18 days Post-op

Post  milo on Tue 15 Jul 2014, 9:25 pm

I'm so happy that you are doing so well.  I've been away from the board a bit and came back today.  I saw your picture and see a totally different person!  Your picture looks like you are FREE!!!!!!!

Please do keep posting your success.  I know it is tough on a site when there are a bunch of Debbie downers (of course I do NOT mean this site!!!), but so many people with migraine have so little hope and your success brings is hope.  

I'm so very happy you are willing to share this with us and am so unbelievably happy for you!!!!

Dance, song, laugh, sky dive.....do it all sister!!!!


Last edited by milo on Wed 16 Jul 2014, 6:56 pm; edited 1 time in total
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Re: 18 days Post-op

Post  7777Trinity on Wed 16 Jul 2014, 6:59 am

Thanks Milo! I did post my 4 week post op status too.

I am dancing my happy dance!!!

Trinity
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Re: 18 days Post-op

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