Four 1/2 month post op

Hello to all Eagle warriors,
I hope you all had a wonderful Thanksgiving. I am sorry I have not posted an update sooner but my recovery has been very challenging for several reasons. The first week I went back to work I ended up with strep throat. Then a week later I ended up r and gastritous caused by Cymbalta which was supposed to help me with nerve pain. It made my mood better but did nothing for my pain. the only symptoms that improved for me after es surgery was the ability to swallow without choking and the ringing in my right ear was gone. the surgery however made the pain in my neck,my shoulder, face, my back, my head and down into my arm 100 times worse. The nausea was worse along with the throat pain. Not What I had hoped for.

I was able to take a two week vacation that was the planned at the beginning of October. when I returned from vacation I had doctors appointments lined up in hopes to get diagnosed for what I thought i had back in January. Thoracic outlet syndrome. My ENT said he would not do the other side until we figured out if I had TOS.

I was back at work for 3 days when I was rear ended 2 times in my work vehicle. Needless to say this did not make my pain any better in my head, neck and arms. The guy hit me twice because he slammed on what he thought was the brake pedalwhen in fact it was the gas pedal. I got to go to the hospital again for more images to make sure he didn’t mess up my spinal fusion

long story short my fusion was fine, my pain increased more and I am now symptomatic with TOS on both sides constantly. In all of the madness I was able to finally get diagnosed with neurogenic thoracic outlet syndrome. the thoracic surgeon I saw recommended that I have decompression surgery where he will remove 2 of my scalene muscles on the right side along with the first rib and possibly a pectoral minor muscle. I have already tried everything non surgical and everything else has been addressed. my skull base surgeon and my neurologist thought I may have tos and both of them referred me to the same doctor.I am in constant pain I’ve had to increase my pain medication along with muscle relaxer and am now taking nortriptyline to help with the nerve pain. it hurts to be on the computer so thank goodness for the smartphone and talk texting. I am not proof reading this for errors. So I hope this makes sense there are not too many errors.
I see the thoracic surgeon again on the 9th of December to go over all of my questions, concerns and pain management after surgery. I’ll be in the hospital for 3 days after the surgery and they will not let me leave until I can manage the pain on my oral pain medicine.
I hope you are all doing well I do pop in once and a while and read post to try and keep up with everyone have surgery and so glad so many are having good results. I will let you know when my surgery is scheduled for TOS. I have decided to wait till after the first of the year. Do not want to be in that much pain for Christmas. Never stop looking for answers and God bless.

Holy cow this is a story. I'm sorry for all of the rough stuff that has happened…and there is no shortage of it! It's kind of unbelievable to read what has happened, and all after the surgery seems to have exacerbated symptoms. I am so sorry-- I wish I knew what to say. :(

I will send you a msg about a friend of mine who had the TOS surgery. I see a TOS doc as well, but I am helped greatly by working on the muscles myself. Denver has some TOS experts, including Dr Sanders, who wrote one of the first books on it. I am unsure of which symptoms are ES and which could be TOS.

Thank you for the update…I appreciate knowing what happens, it really is helpful.

Wow!! You have been through soooo much.......one thing after another! :(

There really seems to be quite the overlap in symptoms between TOS and ES. (One of my friend's also has TOS and we are constantly comparing symptoms). I brought this up during my consultation appt with my surgeon (ENT). He said what is important is to find the source of the compression/ irritation. Some of the same nerves, arteries etc are involved. Glad to hear that are working with you on figuring out which is causing your pain and making sure that is addressed first.

Another thing that you might want to check into ......is having them check your B12 and Iron levels (possibly a vitamin panel) for vitamin deficiencies since you mentioned the gastritis. If any of these get low they can wreak havoc on the body.....nerves/ nervous system. I have celiac disease (malabsorption) and improving these levels lessened some of my symptoms before my ES surgery.

Praying for you :)

Take care,

Sheila

I had TOS surgery 6/2009, 2 scalene muscles and first rib removed. Then had pec minor released on both sides, 9/09. A great website is on TOS FB page. Best advice, find the best surgeon if you decide to have surgery. Please message me if you have any questions.

Tee,

The cymbalta caused an Ulcer and Gastritis. I knew talk texting would mess something up. I think I may have NTOS and I perhaps VTOS but we all know images and testing do not show everything. Unfortunately they only find out how bad it is when they go in. Like with the disc.

I have a massage every 2 weeks and was working with a PT and a neurologist who know a lot about TOS. The physical therapist worked on me 3 times and things got even worse. So he said he could not work on me anymore until we figured out if I had TOS or not. We discussed botox but my scalen muscles will probably not respond to it and it is only a temp fix.

Tee said:

Holy cow this is a story. I'm sorry for all of the rough stuff that has happened…and there is no shortage of it! It's kind of unbelievable to read what has happened, and all after the surgery seems to have exacerbated symptoms. I am so sorry-- I wish I knew what to say. :(

I will send you a msg about a friend of mine who had the TOS surgery. I see a TOS doc as well, but I am helped greatly by working on the muscles myself. Denver has some TOS experts, including Dr Sanders, who wrote one of the first books on it. I am unsure of which symptoms are ES and which could be TOS.

Thank you for the update…I appreciate knowing what happens, it really is helpful.

Hi Amy,

thanks for the info. I joined the FB page a while back. I see that Dr. Donahue seems to be the rock star for TOS. There is another doc in Tucson that is listed on the website too. I just hate the fact I would have to travel to Boston for dr donahue. I am in so much pain and force myself to work everyday and when I get home I just medicate, ice and pray. The weekends I am so exhausted and tired I can barely do anything any more. I just want the pain to stop and it won't even with medication.


Amy said:

I had TOS surgery 6/2009, 2 scalene muscles and first rib removed. Then had pec minor released on both sides, 9/09. A great website is on TOS FB page. Best advice, find the best surgeon if you decide to have surgery. Please message me if you have any questions.
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