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?

I believe from your post that you live in Canada and I am unaware of their policies for help. I told my Dr. that I will have NO help which concerned me to no end. I called my insurance company (Medicare and AARP supplement) and asked what the circumstance would be for me to either go to a re-had after the hospital or have someone from the VNA (Visiting Nurses). The told me that you must be in the hospital 4 days, not come out on the 4th day, be in the hospital a full 4 days in order to qualify for the re-hab and your doctor must request it in writing. I will be in 2 days. The qualifications for the VNA are the the doctor request it. When I told the doctor I would have no help he said, don't worry at all about it. When you are in the hospital the VNA will come to you and make the arrangements. My insurance co said you are allowed to have the VNA 1-8 hrs a day depending upon need. I surely hope this can help you because I know the fear and insecurity of feeling alone without help. Let me know what you find out about getting help because now I'm worried about you. Maybe you were unaware there may be help. Don't be afraid to ASK for HELP, please.

Irisheyesmilin

Hi Parbie,

I'm not 100% sure as to how many TOS patients he has seen. my referring Dr. (from Mt. Sinai) has referred 2 prior patients (dx with TOS) and he stated 1 of the 2 had surgery - and it was a success (the other pt refused, and sent for vascular physio ?). I think you're right i'm not sure if there is a specialist surgeon who treats patients with TOS specifically. Although i'm sooo glad he's my doctor, I completely recommend him. in terms of wait times (I was shocked! when i got a phone call within 2 weeks - usually it's 2-4 MONTH wait), and my appointment was made for early the following week. His assistant (sue) is fabulous! i'm not sure if I was having good luck or what! within a month I had 2 appointments a CT Scan, and was booked for surgery - and 3 weeks after I had my surgery (surgical wait times here are like a minimum of 4-6months if your lucky). Although waiting in the clinic is different beware you might have to wait up to 2 hours.

If you have anymore questions, please don't hesitate to ask.


Toronto, Canada

Unfortunately here in Canada is sort of the same. I have "sunlife" (private insurance) and I am only able to use $400.00 worth of physiotherapy/homecare nurses a year (Plus I need a request from my dr). which is like 5 physio treatments, and the closest one to me is a 30min walk. I was given a booklet of physio exercises I'm to do, my biggest issue is the nerves that are healing still (keep dropping things) - embarrassed to say yesterday alone i broke a pint glass, coffee mug, small plate, and a magic bullet cup with banana smoothie all over my floor. So far this morning it's been good nothing broken.

I see my surgeon on tuesday, i'll talk to him about physio (or if it is just the healing process thats taken it's toll on me) and not realizing my limitations due to surgery.

thank you for your suggestions

Toronto, Canada

Thanks for the response! Yes I am very aware of the wait time hence why I like the US healthcare system, as expensive as it may be, way better than Canadian. I am Canadian but have been living in the US for 5+ years and coming back for a year maybe more after my redo surgery and left side surgery with Dr. Donahue. I just wanted to make sure I wasn't missing anything about there being a specialist even closer to home that I wasn't aware of. Good luck with your surgery!

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