Good luck. I took hydromorphone for the post surgical pain. Unfortunately, I still take it 8 years later, but that's another story.

I'll be sending positive thoughts your way.

Also very curious on how you are doing after your surgery so far? Also, who was your surgeon? I am originally from TO and if I knew of a good surgeon there, I would consider him/her since my immediate family lives there.

Hi parbie,

Dr. de Perrot (thoracic surgeon) at TGH. he's AMAZING!! I definitely recommend him .

Unfortunately, they couldn't do the full resection due to the extensive damage they found when they opened me up. They ended up removing "ALOT" (docs words) of scar tissue which was attached to the bone, and nerves (which was causing the numbness in the entire right arm), and that was causing severe compression on the subclavian vein (making my hand go purple/ blue). So pretty much he said they scrapped the crap out of inner part of the 1st rib, and removed as much scar tissue as possible without causing too much damage.

Surgery was 1.5 weeks ago. still in ALOT of pain (still needing pain meds every 3 hours) - severe lack of sleep (3:29 am right now - have only slept about 3 hours in the past 48). i have limitations with the movement of my right arm (which is to be expected) - THANK GOD! for the advice from kellysf & BDBomg about using a sling - this has been a life saver!!

My battle scar is located at the base of my neck on the right side (lovely 3.5 inches) plus a nice ugly hole below that where they had to put a drain in.

Unfortunately, i'm still having all the same symptoms I had previous to the surgery (discolouration, numbness) - i'm hoping this is only due to the swelling. only time will tell.

follow-up with the surgeon is in another 2.5 weeks. They said they only wanted to see me in the office once the pathology reports are in (which is kind of strange, if it's only scar tissue what's the concern?).

I will write another update within the next few weeks on the recovery progress.


Katie

My nerves were really aggravated after surgery. It took almost 2 months for it to calm down so don't get too discouraged. As my surgeon said, "Nerves can't take a joke." Just be REALLY gentle with yourself.

Take care,
Kelly

Hi Katie,

I hope your recovery goes as smoothly as possible! Thanks for the response, really appreciate it. Would you happen to know how much experience Dr. de Perrot has specifically with treating TOS? I did not think there were ANY experienced surgeons in Toronto and having one there even just to consult with would be so great. Also, how long did you have to wait to be seen by him?

Sooo, I saw my surgeon for a follow-up today. conflicting details, my parents (who were with me the day of surgery) said the surgeon told them he didn't remove the 1st rib but only "alot of scar tissue". well today during my follow-up I wanted confirm what was actually done, and he said infact, yes he did remove the rib, alot of scar tissue, and a bit of muscle (to relieve pressure on my nerves/vein). So far all the symptoms I had before the surgery I still have, although I was reassured it's still in the healing process so it's nothing to worry about just yet, it's probably just inflammation (which makes sense). I've been told i'll be off work for at least another 1.5 weeks, and need to see my referring dr before I can go back full-time or starting back as part-time (mid-june), which is going to be a challenge - his secretary is a b---- hope an email to the dr himself might help?, plus I'm going to try and get both consults/OR report for my own records.

My biggest issue right now is trying to relax, letting my body heal! I can't seem to sit still (I feel like if i keep myself occupied i'll get back into things) which is defiantly not working in my favour right now. Going out for a walk (trying to at least once a day) but my deep breathing issue is getting in my way, plus (has anyone had severe pain when out walking - ie. in the upper chest area?) - i usually end up in tears on my way home (not sure if it's just part of the healing process?) I'm still trying not to lift more than 5lbs which is harder said than done.

PRAYING! I the feeling in my arm comes back soon - frustrating as hell when i'm breaking dishes every other day (thank god for cheap dish sets) - guess I should invest in some plastic dishes...

I'll keep my progress updated!


Katie

I'm really concerned you're doing too much. Returning from a walk in tears is not conducive to healing. Take stock of how you're actually feeling -- as opposed to how you want to be feeling -- and act accordingly.

Take care,
Kelly

The vascular surgeon who wants to do surgery on me said I won't be able to return to work for at least 3 months. This would be after removal of a cervical rib, scalenectomy, and removal of scar tissue.

3 weeks sounds way too soon from what I have read of others experiences, but what do I know?

Hi, twelveleaves


oh wow 3 months? Cervical rib is a little different from my case, Cervical is an extra rib (so your surgery might be more complicated due to the anatomy in which the rib grew and what structures it has effected). Thankfully I didn't have the cervical rib, I just 1st rib (the regular rib) removal, scalenectomy, aswell as scar tissue removal . Do you happen to know the approach (the way) they are doing your surgery? (under the armpit?).

I was caught off guard when I woke up after surgery, I thought my incision was going to be under the collarbone, but it was on the side on my neck (roughly 3 inches vertical and above and along the collarbone). I'm curious if anyone has had this approach?

I'm seeing my referring physician on June 10th, to fill out my "return to work" documents. My surgery was on May 16th. so just over the 3 week mark. I'll find out then if i'll be on modified work duties (my surgeon stated I might have to work part-time at first), or if i'm still going to be off work longer. I'm hoping he'll state when I do go back to work, I have to work from home (due to the weight limitations) - I never knew how hard it was going to be not lifting more than 5lbs (being a women my purse/bag comes very close to that 5lbs mark).

I guess it's just to see how the progress is in the recovery process, yesterday and today's been a rough day - a bed ridden day. Pain is still the biggest concern as my pain meds are almost gone, which i'll have to switch back to my old prescription - praying it helps, even a little. Aswell as my breathing is a huge issue still (it's hard to breathe deeply - and painful) - having mild asthma is also a concern i'm just hoping a attack doesn't happen . the last 3 days here in Toronto have been Heat Advisories - therefore housebound - which sucks.


Anyways good luck on your surgery!! let me know how everything turned out!


Katie

sooooo..... my recovery is going to be a bit more complicated than I thought. came down with a case of shingles on my face - totally obvious (on the right side of my nose, and a patch just below my eye) and because pain is very common with singles... my jaw is killing me and having severe chronic right TMJ pain (jaw joint) is obviously NOT helping, also the pain has spread to my neck, shoulder and close to where the rib was removed, and headaches are another story... the Dr is pretty sure because the surgery was so recent, and I haven't been eating much, being in pain, lack of sleep, and just in general run down, it might have triggered an outbreak.

Seriously... of all times...

follow-up surgical appointment is in 8 days, I will post an update.


Hope everyone else is feeling good!


Katie