I was diagnosed with Pagett Schroeder's syndrome 4 years ago, and proceeded with the rib resection. I was hoping someone who has been through this could have some advice for me. My pain post-op has always been a constant, not terrible, but still there. recently, in the past month or so, it has gotten consistently worse. It's been a mix of sharp pain & numbness going down my arm. Any ideas? I haven't been able to find much information on patients long term recovery with this sort of thing.

Was your procedure transaxillary or supraclavicular? It sounds like you have some neurogenic symptoms now as a result of the surgery (perhaps scarring/adhesions). Have you been to physical therapy? Nerve mobilization/gliding/flossing have helped my arm pain & numbness. Also, icing from my clavicle to my underarm has been beneficial as well.

However, I'm only 6 weeks post-op from left rib resection (transaxillary) and 1 week from the right (hardly long-term post-op). My case is both neurogenic and vascular.

bump...found this post useful in my research before surgery.

I found this thread very helpful as well. After dealing with tos for 15 or so years, it finally got the best of me and I decided on surgery. I had surgery back in June with Dr. Annest and Dr. Sanders in Denver. So far I've been doing very good. Back to work, slowly getting back into cycling and best of all back to being a husband and a dad. Working with the physical therapists from Denver, (I'm from Utah) has been invaluable. Dr Annest was awesome, and the recovery although hard and frustrating at times has been far better than the ordeal tos was before surgery. Thanks to all for sharing your insights into surgery and if anyone has questions about going to Denver for surgery feel free to ask.

Hi,
Had surgery to remove the 1st R rib mid-June of this year. For the most part, bounced back, but even now (3 1/2 months later) the tricep-area of my arm is still numb and my forearm/wrist area will swell after long bouts of exercise.
Wondering how long the numbness lasts--my TOS was caused from pinched subclavial vein causing blood clot(1) two weeks before surgery. As well as how long I may have to endure the swelling after working out (some days I still wrap my arm which helps).
Thanks!

Hi Barstow,
can you please share who you had surgery with, the type of TOS you had, and surgical approach? Thanks

1.How was it right after surgery? Day of? The first couple days?

a.) right after surgery was pretty groggy and with the anesthesia that was given I couldn't feel the pain but the incision areas (subclavicular rib resection (2 incisions about 8cm each)were very numb
b.) had surgery at 2pm so was asleep most of the first day
c.) The first couple of days was very difficult. First night was spent in the ICU for close monitoring. I was given morphine as needed which on that first day was 3-4 hours. Moving at that point was very difficult but with the help of one fantastic nurse was able to sit up on the first night. Was moved to a regular room the next afternoon. During the time that I was switching rooms the took me on my rolling bed to get X-rays. Moving that day was difficult but I was determined to sit in an upright position during the times that I was not sleeping. That was also the day that I switched over to oxys. Stayed an additional night in a regular room and was discharged the following morning at 11am after my vascular surgeon, Dr. Akers of Premier surgical associates, had visited. I was so ready to go home that day and be in the comfort of my family that I had changed by myself out of night clothes and into frumpy casual clothing before the doctor had came to visit.

2.What was it was like when you left the hospital?

My husband who was at home taking care of the girls and visiting while the older was at school came to pick me up. The discharge process can take some time and if you are alone for the majority of the hospital stay you will need to start well in advance to get everything you need packed up.
The drive home can be semi difficult. You will want the path with the least amount of turns. Bring pillows.

3.What was it like getting around?

At first it was difficult but the more you move and try to sit up the easier it is. Have a table or cart with things that you frequently need. I'm on week 3 now (tomorrow) and it is still very handy to have. Mine is stocked with books, drinks, personal grooming items, medications, ribbon (okay I'm crafty).

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?

At first things were still difficult and I welcomed a loving arm helping me to get up from place to place.
After the first night in the ICU they removed a catheter and so I was able to get up and go to the bathroom on my own. I was able to take a shower on the 4th day after surgery. A wonderful tip that I picked up from here are the Walgreens bathing wipes that were refreshing enough to not feel as though I hadn't bathed. I preferred showering because I could sit down in the tub let the water rain down and wash my hair/body with my good arm(surgery on left side).
What I did need help at first with was lifting items. I did not use my left arm at all for the first 5 days and after that being on the 3rd week nothing more than 5lbs and that is pushing it. *I'm a lefty who must have morning coffee and so I've learned to train my right arm to do a lot of the things that I feel my left side just isn't conditioned enough to do yet. (such as filling the coffee machine)

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?

I took my dressings off on the day after I came home. I have been since using vitamin E capsules broken open on my incision. For the first week and a half I did not want my incision to get wet and still wanted it to be protected and so I would put waterproof bandaid dressings (the see through tape looking kind- also purchased at Walgreens drug store). You cant wear it with the vitamin E and so I alternated sometimes leaving the showering strips on for 2 days. They are wonderful.

6.How did you manage pain? Did you need ice a lot?

When I left the hospital I was taking my Oxys about 4-5 hours apart and it would cause me to wake up. I did use ice packs at night to help on my worst pain spots and to stay asleep longer. I gradually increased the time in between my doses and just used them at night to try and get better quality rest. I came off them right before my 2nd week. (also have lowered the med that the doctors have had me on for the past 2-3 years for pain-no more ibuprofen or Tramadol and have decreased levels of cymbalta and lyrica)

7.What was it like the first couple of days? Challenging.

8.The first week? The hardest thing was getting used to doing things slow..is not in my nature.

9.The second week? On the 8th day after surgery I tested the waters out to a craft store to try and find things to keep me busy during recovery. I learned that day what pushing too fast means. I was browsing around the store for around 2 hours and while I only seemed tired and achy when I got home the following day was pure torture. I got a sharp pain that caused me to hurt every time I moved in my trapezius muscle. After 2 days in bed regretting what I had done I slowly started to feel better. (ice was what got me through it...on the direct ache spot and above my incisions).

10.a month post op? Not quite there yet. Had surgery on Sept 10th and today is the 30th.

11.two months post op? etc.? I'll let you know.

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?

I am lucky to have a wonderful husband that cooks almost every night, but I also did alot of quick meal shopping at the grocery store right before the surgery. I am able to make most things now without any problems. I can feel that I am pushing myself when mixing or cutting things most....more from the repetitive motion than anything. Still trying to take things easy and I am glad I have a dishwasher/and or wonderful spouse who scrubs the greasy ones.
Laundry is something I have to pace myself on not to tire myself out to easily. I have started a game since our machines are within out kitchen vicinity that I fold only a few things when I go by and when I have my piles I put them up only a room at a time.
Shopping is something that I enjoy all too much. I'm a bargain girl and am used to taking my time in stores scouring for the deal. That is what got me in trouble on the 8th day and I still have to watch myself with. I am now at the point where I am able to go out in about 2-3 hour periods without hurting too much. This is my biggest difficulty.


13.How active were you, ie. walking around?

The surgery has helped me feel wonderful...and I have to pace myself which is so very hard. If I am sitting or standing for long periods at this point I become sore and achy to the point that it is difficult to fall asleep. I have until Oct 17 to try and get to a point to where I am able to sit for long periods (have a sit down office job and am considering starting back at 30 hours at first which is the minimum my job allows and will allow me to keep my health insurance. My spouse is a stay at home dad to our 2 girls ages 2 and 8. I have enough FMLA left to make it until Nov 25th with it renewing in April.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?

1.) The button to adjust the bed was my best friend and what helped me to move around so quickly.
2.) Make sure you get a pain med dose before you go home because pharmacies are slow and you will want to just lay down once you get home. (save the extra trip out for your recovery helper)
3.) First few days slept on a comfy couch at a elevated position sleeping on my back with a pillow under my left arm as well.
4.) Take it slow. See above. I would have been better than I am now if I had. Learning from my mistake and trying to take it easy.
5.) Scott Sonnon's youtube joint mobility exercises have prevented me from having to return to physical therapy and slowly ease back into using the muscles.
6.) Have a wonderful support team.
7.) If you are used to doing most thing in your household try to prep well in advance so that it is less on you in those first few days. Example: I prepped school outfits for our 8 year old enough for the first 2 weeks (she has different classes such as art, gym, etc that she likes to dress differently for), prepaid the next 2 weeks of bills so I didn't have that on top of the hospitals, grocery quick meal (try to stay away from things that involve a fork or knife for the first week).
8.) Hot showers on tired muscles are wonderful.


Hope this helps someone. This thread was what helped me feel confident going through with surgery. I am not 100% better yet but that is what I am gear and working towards. The pain in my upper neck and back which was the worst thing and what was causing me the worse agony is gone. I still get these spots and numbness in that arm when I over exert myself. Its a slow process recovering and though it is difficult taking it slow I know that it is what will and does make me feel better. I just need to allow myself to heal. Thank you to this community that has shared their issues and experience. Before I found the forum I felt very scared and alone in my pain.

Amber

Hi Antikamars,
can you please share who you had surgery with, the type of TOS you had, and surgical approach? Thanks

TOStrojan, I live in Tennessee and had my surgery with Dr. Donald L Akers of Premier Surgical Associates in Knoxville. I had my surgery by anterior supraclavicular approach on my left side removing the first rib and scalenes with some of the scar tissue that had built up. I was diagnosed with true neurogenic TOS and was given the option for the surgery after going through physical therapy. My TOS was developed from several possible causes. Had a car accident in 2007 where clavicle was fractured, re injury at job where was manager of pizza place for 5 years (repetitive), pregnancy that set of the TOS in 2009 and job with no ergonomics for last 4 years.

Amber

Because I found this forum so helpful prior to my surgery I thought I'd share my experience as well! I had a transaxillary first rib section by Dr. Freischlag at Johns Hopkins in Baltimore. Had been experiencing symptoms/pain since January of 2004 but didn't receive a diagnosis of neurogenic TOS till 2011 when I had a scalenectomy in September (from above the collar bone). This did not help my symptoms so was offered the rib resection after an intensive PT course pre-op (Dr. Freischlag gives you a very specific PT protocol to give to the PT.

I had the surgery on 12/14/2012, lasted less than 2 hours (surgery itself).

Some of my questions:

1.How was it right after surgery? Day of? The first couple days?

Right after surgery you're really kind of out of it and sleepy/medicated, i just wanyed to get to my room so i could relax. The skin was completely numb but it felt weird to have my arm against my body since the area was so swollen, the nurses had put a pillow under my arm to prop it up a bit any this trick made recovery for the first few weeks soooo muc easier and less painful. Regarding pain, I was lucky to have a PCA of Hydromorphone both in recovery and in my room. This was fabulous as in my prior surgery I had only po Percocet post-op which left me in a constant state of anxiety. I was inpatient one night, they did put me on bed restriction as a fall risk so I'd have to call if I needed to get up for anything. The first night is painful - but with proper meds not too bad - ask for more if you're hurting more!

I also noticed pain when I breathed in deeply - sometimes I felt almost short of breath or that my left lung was inflating all the way - I'd get a sharp pain when I tried to fill that lung. This side effect was probably the most disconcerting at I know pnuemothorax can occur - but it was just a bit sure from being poked at. This symptom lasted for probably a week or two before it resolved completely.

The next day I was a bit more sore - they removed my IV a little before they started the discharge which was problematic because they couldn't give me any other meds at the moment so I was in horrible pain about 2 hours later when we were waiting for the PO rx to be filled & then kick in (was given soma & Hydromorphone).


2.What was it was like when you left the hospital?

The ride home wasn't too bad. I'd say bring a pillow or roll up a sweatshirt to support your arm in the car. They gave me a sling & the option to wear it - I didn't like it because I felt like it pressed my arm to tightly to my body which is uncomfortable.

Coming home and laying flat in a bed was the worst part of the whole ordeal. I had been without meds for a few hours and was really really hurting - I was shivering and scared and laying flat (tempur-pedic pillow worked wonders) hurt as its a braing new position. I took my meds and slept all day. I didn't even try to get set up on the couch until the second or third day as it hurt too much to get up and manipulate pillows and such. I had to sleep flat on my back for the first week.

I also had a lot of pain in my upper back, like lots and lots of knots/spasms etc wll muscular. the heating pad worked well on that - it was pretty uncomfortable.


3.What was it like getting around?

It was painful to stand up and sit down, walking around wasn't bad... But I was terrified I would fall so I tried not to do it so much at first. I probably didn't leave my apartment for the first time until a week after the surgery when I went for a walk around the block.

I couldn't drive for about 3 weeks. I was released to do so after 2 weeks as long as I wasn't taking meds, but when I tried it in a parking lot I had soooo much rebound pain that I didn't try it again until a week and a half later after I'd been in PT for a bit.

I can drive w/o problems now (5 weeks post-op) but have only gone maybe 10mi one way, not really long distances.


4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?

I had my husband to help me, but I didn't need help showing or using the bathroom or anything once I got home. I wasnt supposed to shower for 3 days post op so it did give me a bit of time to recouperate before tyring it.

My husband needed to assist me with opening jars or bottles, cleaning the apartment, doing laundry, procuring me food - first week and a half I depended on him a lot & he was great. I started feeling more self sufficient after about 2 weeks.


5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?

I did not, my incision was under my arm pit. It was very swollen and uncomfortable for about 2 weeks. My stitches were dissolvable, other than not being able to shave/wear deodorant for the first 2 weeks.


6.How did you manage pain? Did you need ice a lot?

I never used ice, used heat for the muscle pains and soaking in a hot bath after the incision healed. I took Hydromorphone for the first week, Percocet for the 2nd and third, and was off narcotics after the 3rd week. Still take Advil & Soma.


7.What was it like the first couple of days?

See above (difficult, painful, sleepy, medicated!)

8.The first week?

See above

9.The second week?

See above

10.a month post op?

See above

11.two months post op? etc.?

Not there yet!

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?

My husband assisted, it would be difficult to do those things yourself so I'd suggest asking someone for help. You could but I would plan easy to eat meals and make sure things are not high up (reaching is difficult and painful), make sure you have enough laundry and food to last a couple weeks and have someone who can help if you really need anything. Prepare like you're preparing for a huge storm.

13.How active were you, ie. walking around?

By 4 weeks post-up I felt pretty sure on my feet and wasn't have a whole lot of pain. I was also able to do light cleaning and cooking, etc.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?

A maleable pillow, a heating pad, temperpedic pillow for nighttime sleeping.

Also:

I got to keep my rib