About 5 days post of of transaxillary rib resection on my right side for my crippling NTOS.
Surgery by Dr Reifsnyder at Johns Hopkins.

Spewing my story and looking for insight from other people who have had this surgery or even know a lot about it as well..

It's hard to tell how much immediate relief I have from the surgery thus far.
They did let me keep my rib, which they said was unusually wide. It looks pretty blade like to me too. Yikes!
There's still a lot of swelling and pain. A lot of the same nerve pain and lightening in the back of my neck, scapula, down my arm and into my hands. It Does immediately feel like a tight rope has been cut in my neck and it's no longer trying to crank my head down into my chest.. So I've got that going for me.

Anyone got any tips on how to manage the first few weeks before my post op appt and pt starts?
I don't want to risk losing ground on nerve recovery by not being proactive. Or retrain my body to do something that could be damaging.

My condition had deteriorated so much that my activity was already pretty limited to mostly staying in bed, family helping me cut my meals, dress, and drive Soong before surgery it was hard to take the aftercare instruction of "take it easy" seriously..

So turning to the people who actually Know things about TOS..
Any ideas and experience:
-Good arm positions? For sleep? Eating? Sitting?
-Good passive exercise? Scapula pulls? Neck stretchs?
-Any stretches? (I still feel something weird pulling back and forth behind my collar bone during muscle cramps and movement)
-I'm getting mixed instructions about whether or not I should wear a sling depending on what nurse I talked to while I was inpatient recovery. Did anyone have good luck with a sling? Or bad luck?
-Should I be encouraging more range of motion?
-Ice? Where did it work for you?
-pillows? I still can't seem to figure this arrangement out since leaving the hospital.
- any light low impact work outs work for you after surgery?( I had to stop jogging before, it pulled on my arm and neck nerves and wrecked me. )

Any "you would never think of it, but absolutely DO NOT try to do X!" Words of warning?

Thanks

Post op -
Don't make any fast grabs for anything
avoid trips and falls , rough car rides

sling only sometimes if needed. not 24/7 as you might get frozen shoulder..

Some do mild & gentle slow range of motion - perhaps lean over and let arm dangle and slowly let circle.

I'd look into diaphragmatic breathing to reduce nerve irritation and relax the neck without flaring you up.

After four surgery for TOS, I've done the following.

The first 10 days or so it will be very, very painful. So, don't do too much.

I would only wear a sling when needed, you might end up with frozen shoulder like I did. Especially if you wear it all the time.

Don't worry about any exercises, you should ask your doctor at your next appointment. One of my doctors told me to swing my arm back n forth for 30 minutes. You can do this as you are able to walk around the house.

Grab a bunch of pillows. I would stand one up against the bed board, and stack the any other ones. I didnt get much sleep due to the pain. But as time passes, (months) the pain will get better. If you have one, try sleeping on a recliner.

Try using ice packs for swelling and heating pad for pain. TRUST ME, these two items will become your best friend.

Be patient, relax, and don't overdo it. I pray your recovery goes well. If I can answer anymore questions, please let me know. I've been dealing with TOS for 22yrs. GOD bless!!!

Walk....I can always feel better the next day if I go for a walk. Take it nice and slow.

Thanks for the input guys.

This surgeon told me Not to use a sling.
That's fine by me, I just got out of 4 months of having to wear one all the time.

20YrsTOS- was your after surgery pain mostly like.. surgical pain? Wound pain, soreness, that kinda stuff? Or was it like a demon monster version of your nerve symptoms too?
My wound pain seemed to be decreasing quickly, but there's new weird nerve stuff surfacing. The nerve stuff was less the first few days and it was just PAIN pain.. so it was kind of hard to remind myself to keep at my usual slow pace because.. Pffft just pain is nothing. Just Pain is something I can work with.
Now with the nerves + the surgical pain it feels almost like surgery never happened, and I feel about like I did the week before surgery.
With your 4 surgeries, did this kind of stuff surface for you?
Was it an indication the surgery was ineffective?


I wound up back in ER last night due to sudden onset pain so bad it was making me vomit, and a stabbing head pain, shortness of breath.
I was laying in bed and let my head list to the left, away from the surgical side. the shooting sudden pain was so bad I got the sweats.. and the barfs.. And the crawling sensation in my neck was terrible. I kept having diaphragm spasms that felt like half of a hiccup and Could Not draw in air. I kept getting really lost and confused in my own room trying to get my pants to go to the hospital..
Surgeon's PA wanted me to make sure it wasn't a blood clot or I didn't re-injure my nerves or anything...

ER team had a different idea of the situation, mostly that I am probably just sore from surgery and wasting their time.
One of the resident Dr's that was part of my surgery came in and told me I was just complaining about a previous nerve issue that had nothing to do with the surgery. (Forget that I had the surgery to correct the nerve issue, apparently irrelevant).

When I tried to get more details motions restrictions, or body positions form them it was more of the same "Just General limited motion". One PA got so angry she left the room after saying that 4 times. She also told me that "extreme head movements" may just be something I can't do any more.. Such as Looking Left.

The trouble is my whole life has been "General limited motion" in increasing levels. But holding still also hurts. So does laying down, or sitting up.
So they sent me home and told me not to do anything crazy with my arms, they didn't know why I hurt, didn't know what was up with my nerves, and didn't know who in all of Hopkins I could possibly talk to about it.

It's not like I'm having people drive me to the ER because I get some symptoms after I do too much mountain biking! I just want to be able to be an adult again, to dress myself, to be able to hold up my own head without feeling like I've been hit by a truck.

I've gone to the hospital in almost that exact state on more than one occasion. When I hurt so much and am so confused from the meds that I don't know what to do to take care of myself, and it is scary.

I finally was given a rx for torodal from my neurologist to keep at home because that was generally all that the hospital did for me anyway. I just can't take it very often because it is extremely bad for the stomach, but I'm not sure how many hosptial trips this med has saved me from, lol.

It's better to go to the hospital and have it turn out that it is not an emergency than not go and find out it was.... Hang in there!!!

Thats terrible, I hope you feel better soon - as Eight said, hang in there.

BTW:
ER team had a different idea of the situation, mostly that I am probably just sore from surgery and wasting their time.
One of the resident Dr's that was part of my surgery came in and told me I was just complaining about a previous nerve issue that had nothing to do with the surgery. (Forget that I had the surgery to correct the nerve issue, apparently irrelevant). When I tried to get more details motions restrictions, or body positions form them it was more of the same "Just General limited motion". One PA got so angry she left the room after saying that 4 times. She also told me that "extreme head movements" may just be something I can't do any more.. Such as Looking Left.

Are these people even human or do they even have basic training in empathy?
Somebody is in pain and they can't even respond with kindness. Ridiculous.

Snapple, sorry to hear about the things that went on in the ER. Unfortunately, the majority of these doctors do not know about TOS, and they don't care.
Regarding my pain, it's all the above. The pain came from the incision and nerves. My nerves were burning and I had electrical shocks. Since I've had this for 22 yrs or so, my tolerance for pain is easy. So I only take Tylenol for pain.
As I stated in my previous message, you will need to take it easy. Trust me, TOS has taken 22yrs of my life, so I know how you are feeling. I was an athlete, exercise a lot, and love to have fun. So I know how you feel wanting to be an adult again. I had my fifth surgery three months ago, and I'm MUCH better. I'm back exercising and shooting ball again. But I'm not trying to rush anything. Doing light weights, but was told nothing heavy. No push-ups, bench pressing etc. After this fifth surgery, my nerves have been burning, electrical shocks, etc. I was told this is part of the healing, because nerves takes a long time to recovery. But as I stated before and just like my previous surgeries, I couldn't sleep, look left, couldn't drive, loss strength, etc. But now I have all of my strength, my neck is getting better, and I'm able to do more. I still have some ways to go, but I'm much better. Still have some pain, swelling on occasion, and nerve pain. But all of this is part of my recovery. If you want to know more about who, where, and what surgery I had, I can send u an IM.

Take care of yourself, and try to allow your wounds to heal.

Hey snapple, hope you are doing okay.