Shoulda Had Surgery
 

Friday was when I should have had surgery.

Instead, I was at work with a big storm that cut the power out, made my boss yell at me, and after doing just a small task, has my arms burning the day after. Storm took down many trees and my windows at home were open a crack and my floor is all wet.

A sign from the universe I should have had surgery?

So hard to pull the trigger! If there were not so many horror stories, I would have.

I'll check in with my PT again. She doesn't know any more than I do. And even though I am going with Dr. D, he is up in the air too. He'll do it. And he is OK with not doing it.

Ugh.

Hi Mark,

My experience with Dr. D was that he only does surgery if he truly BELIEVES it will help. He doesn't promise results as no surgeon should because each person's situation is unique. I think that if your saying he is also "up in the air" about it, you should feel okay with your decision and not rush into surgery. We all have real bad flare-ups from time to time, and as you improve you should get flare-ups less often. Bad weather is a huge cause of pain increase for me too. Try to stay positive and keep on trucking with the therapy and also most importantly, watching your limitations and making sure you take many breaks at work. Hopefully with more time and restrictions, you will improve. If not, you will always still have the option to turn to surgery.

i know, but i DO NOTHING. i mean, take breaks, hell, i hardly do anything at work. i hardly move my arms at all. i never bend them ever. at night, i sleep with them straight.

bad weather makes you worse? how so? didn't think it was the weather.

A TOS expert like Dr. D is not likely to make someone worse. I also believe that the longer people wait and the worse they get, the less chance for an excellent recovery.

Surgery might not make TOS go away completely, but it can make one's TOS much easier to live with.

Yes rain and cold weather significantly increases my pain. I don't know how or why but it happens to a lot of people with chronic pain. I wish I could sleep with my arms straight I keep moving I can never find a comfortable position therefore I barely get any sleep. Talk to Dr. D again, this is only a decision you can make at the end of day. But if your pain is not constant and you usually get numb but less pain, surgery may not be the right path to go unless Dr. D really believes it will help you, like I said before if he is up in the air that says a lot. What are your symptoms right now??

Strong / rapid barometer/weather changes often make me have a pain increase too.

I don't know how much you are limiting movement , but sometimes we need it to keep the blood flowing, moving the bad toxins /blood out and bringing in the new fresh blood w/ oxygen and fluids..

Sharon Butler has a lean over and let arms dangle and slowly let arms swing circle from the shoulder

or stand up and do a twisting of body so that arms are gently swing around loosely from the shoulders

I did these often when still working at break times in the restroom.

parbie,
here is the problem.

if surgery should only be an option if you are in a lot of pain, I CAN GET THERE FOR YA EASY. All I would have to do is take one lap around the pool. Or, I could talk on a phone for 5 minutes. How bout I lay on my stomach or my side for 1 minute.

I am very smart to avoid and very limited in what I do.

I am young. I want the *chance* to see if I can do more in life. I want the chance.

Right now, my pinkies go numb and I get pain/pressure in my forearms/elbow. I am able to keep it to this because I do so little.

I do not know the answer but I think I should give surgery a shot. I have done a year of PT weekly and she has loosened me up greatly. But, that does not translate to any decrease in symptoms. If it does, it is like the difference between being able to hold a phone for 10 seconds instead of just 5 seconds. I mean, that is so small.

Also wanted to add that Dr. D says "You are a good candidate for surgery. Your symptoms should improve based on the narrowing on the CT scan."

He does not promise anything and likes to keep expectations low. I love that about him. He says most get 85% better. 100% is uncommon.

If Dr. D thinks you are a good candidate and you are at a point where you don't feel like you will get any better or be able to expand your limitations a little, then maybe surgery is the way to go. I am just trying to think in your shoes. I have constant pain and me typing this is already increasing all of my pain. I am still flared up from going to a store with my mother in the rain on Saturday. But please remember that the limitations you have now, you will still need to have a lot of them after surgery and also be very conscientious in the activities you do for the rest of your life to avoid recurrence of your symptoms. I know going into surgery my success rate is lower than most because of how severe my case is and because I had the surgery once and have nerve injuries as a result of it. But I am still hopeful for ANY improvement because just like you, I am so young and so limited in what I can do, and it really is the worst thing to be living with this. At the end of the day, the decision will be ultimately up to you, it is a very invasive surgery with a long recovery time. And it definitely is not a "cure". That is the sheer reality of it. Also, just a tip, use headphones when you talk on the phone, it helps tremendously and you can make a habit of it for life.

it sucks parbie.

It does. But keep your head up, as hard as it is. Maybe you can try to make a pros/cons list on doing surgery? That is what I did and it really helped me in making my decision.

pro:
Mass General #1
Doctor D #1
Chance at a better life
I will never know for sure unless I do it.
I am young now.
I would not have flown to Dr. D if I didn't want a go at this.

con:
It may make me worse (this seems unlikely and I'll get worse without having surgery it seems).
physical therapy may be better (physical therapy can be tried after surgery too though)
expensive (physical therapy is just as expensive in the long term)
disrupts life (my life is already disrupted by TOS)
painful (i'm already in pain, this could potentially end pain)
scared (life is scary anyway)

It sounds like even if you didn't make this list, your mind is made up, you just haven't realized it. Go for surgery then? The pros sound better than the cons in your list that is for sure. But remember this, physical therapy may be life long regardless whether you have the surgery in order to maintain everything to keep from recurrence of symptoms AFTER the physical therapy during the initial recovery. But then again, eventually once you learn a bunch of helpful techniques, you can make it part of your daily home regime like many people have, and see a therapist here and there.

Maybe I'll see you at Mass Gen... My surgery with Dr. D is July 18 right when he returns to Boston. He is gone for the first 2 weeks.

Keep us posted on your surgery & recovery

I will. I'll continue to post on my thread of any/all updates :)

Heybro-it sounds like you are leaning towards surgery again-but its good that you took this time to decide. You can always do the surgery-you still have that option. A couple of more months to decide wont be the worst thing.What would be worse if you rushed into it. If Dr. D thinks you are a good candidate-thats a good thing. Good Luck!

Under "pros" you forgot to add:

Likely to help based on CT scan results.

Right?

My ribs can creep up on me over time. Then I go to the chiro and he smacks them back down after which I feel fairly normal.

<<<Under "pros" you forgot to add:

Likely to help based on CT scan results.

Right?>>

True that.

i swear my ribs elevate from clenching my jaw and mouth breathing

i need to sleep with my arms straight :(


people who have the worst recovery have like latent rsd just waiting to jump out of hiding, if you have neuropathy anywhere else i would not get surgery

no, i am actually probably the best i have been. this is due to completely changing my life, completely not doing anything, and the botox helped some too. but i have seen doing the smallest things make me go, so i stay away from them.

just have the numbness in the pinkies and pressure in forearms/eblows.

A successful TOS story!
 

Hello,

I am so sorry you are struggling with TOS and the decision on what to do going forward.

I wanted to chime in to let you know that there are success stories out there as long as the workup/diagnosis is accurate. I had bilateral thoracic outlet decompression and scalenectomy w/neurolysis on 7/20/11 (left) and then 8/10/11 my OS did the same on the right side. I was immediately free of all symptoms within hours of waking up from the surgeries. Prior to surgery I was very nervous about the recovery and long term prognosis after reading many horror stories on the internet. I had mixed TOS both vascular and neurogenic that had caused severe symptoms that was affecting every aspect of my life which was why I decided to go forward with the surgery and I am SO SO glad I did. My recovery went very smoothly, I didn't go to PT due to other injuries from an MVA but, that didn't at all affect my overall recovery. The only residual issue I have is a numb patch on the back side of my bicep which was initially annoying but now I don't really even notice it but otherwise full function.

The only thing that concerns me in reading your story is the burning pain.. this type of pain can be a symptom of a more severe type of nerve injury/damage like CRPS/RSD for instance. I would highly recommend discussing that particular description of pain with your doctor and get another opinion or 2 prior to any surgical intervention. I see you have had CT scans - has your Cervical spine been completely worked up? Are you also seeing a physiatrist as part of your diagnostic team? How about B12 are you taking it?

I wish you the best and hope that you find relief one way or the other sooner rather than later.

-Tessa

I take a multivitmin that has 300 percent daily value b12. is that enough? i have heard people say on here to take like 26000 percent daily value or something. that seems a lot.

when i said "burn" I didn't mean burn. i get a huge pressure and then I guess you would call it pain. i never like to call it pain because to me, nerves don't cause "pain" they cause something really really odd that hurts but it isn't like if you stub your toe pain or bite your lip pain, i dunno how to say it.

What doctor did you have?

Personally I would add an additional B12, Vitamin C 500 and Vitamin D3 2000 to your multivitamin.

Actually I would have to disagree nerves can and do cause severe (worse than any pain one could imagine) pain when they are damaged. When they are irritated they can cause discomfort more like what you describe and that is often at an early enough stage that you could recover. The most important thing in helping yourself and your doctors would be to really clarify the type of pain you are having as this makes a HUGE difference in the diagnostic process. Be as descriptive as you can like is it burning, tingly, numb, crawling ants feeling, knife like, searing etc. Then also pay close attention to exactly where the pain is. It is not enough to say it causes xyz in my right arm. You need to tell them or better yet draw out where and what type of pain you are having. Color and temp changes are also very important as is things that might reproduce all of the symptoms. For example: when I would drive I could not keep one hand on the steering wheel for more than just a few min. or it would turn white, get ice cold and all then the numbness, tingling and lack of coordination in my fingers would occur. Working at my computer would do the same.

My doctor was Dr. Mark Ombrellaro at Eastiside Vascular in Washington State he is brilliant but, I see you are in MN so that won't likely help you.

Again, I wish you the best!
Tessa

I have no regrets with either surgery. The right was for severe nTOS, the left for arterial, venous TOS. Both sides had abnormal 1st ribs but different abnormalities and the surgeon handled the complications well. I have no symptoms on the right side (> 9 years ago) but I do have some residual muscle atrophy as the nerve damage was severe enough to show up on EMG/NCV.

My quality of life has dramatically improved from these surgeries. Now, if only I could stop incurring orthopedic injuries requiring surgeries maybe I could stop being a frequent flyer in orthopedic offices, ORs and physical therapy.

My surgeon was also Dr. Ombrellaro mentioned above by Tessa.

Tessa,
How much b12? I see levels that range up to 5000 i believe.

I have "burning" pain surrounding both of my incisions from my first surgery. Dr. Donahue believes this is permanent nerve damage to my small cutaneous nerves. But this not equate to having RSD. So, what I am saying is just because a person has nerve damage that is severe doesn't necessarily mean they have RSD. RSD is another difficult diagnosis to make anyway. Also, I have nerve pain down my right leg to my foot. Dr. Donahue said this is not real pain, it just because my TOS symptoms are so severe, my brain is sending signals that I have pain there and he believes this will all resolve within 1 year post op.

Parbie,
Do not you worry one bit with Dr. D !

re: your surgery?
 

Wondering how long ago was ur surgery? Where did u have it done?
I hope as time goes on u get better n better!
Life's not fair!
Bless you