Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 05-20-2011, 11:35 AM #41
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Originally Posted by 184jones View Post
Well done! having read some bits on this website, it seemss the the post operative recovery can beinfluenced by what sort of TOS and rib resection you had and by the level of fitness before the op

I am 7 weeks post op for a rib resection and scalenectomy and its a bit of a roller coaster. I only had 10 days from initial symptom & diagnosis to the actual operation as mine was arterial and had already had a blood clot in my hand.
It was a whirlwind of tests, specialists and second opinions and almost wish I had more time before the operation to prepare mentally. I went from being quite fit (still need to shed a few kilos!)with a cold, numb finger to the operation and completely imoble and that was the real shock.

The operation was abouto 4.5 hours and the first few days after the op were agony with shoulder pain and breathing problems. My diaphram had come right up my chest due to nerve paralysis adn was extremely uncomfortable. I take my hat off to all those people who were discharged after one or two nights, I was in hospital for over a week and had physio twice a day from day 2. I was on morphine for 3 days which gave me migraines and for the first 2 weeks after the operation i was unable to sleep for longer than 2 hours at a stretch.

Things do improve, I have been lucky with complete home help ( we live in Singapore) and so I think my recovery has speeded up as I have been able to rest as much as I want.

7 weeks down the track, still having pain in my elbow and this last week periodic coldness of my middle finger (this is not painful just irritating). It seems that the pec muscle may be pinching as this is very tight and painful. I have been back to my surgeon who has put me on muscle relaxants to see if it is truly the cause ( I think this is why, Singaporean surgeons are great but not at explaining things).

I have begun to exercise again, managed 20 mins on the runner today and am feeling very chuffed with myself.

My scar has healed really well, if anyone is contemplating the surgery its worth asking if a plastic surgeon can close up. Its not much cost in the relative scheme of things and because of the location of the surgery lots of insurance companies will pay for it.

I have been shocked by the total cost of the whole procedure and thank god that we had great medical over. So far my bill has come to approx SGD $60,000 ($48,000USD aprrox) and that is without any of the physio which they estimate for another $5000SGD.

I had Arterial TOS so there was no option to not have surgery but I have realised I will rpobably take the full 3-6 months to fully recover
Hi, Can I check with u which surgeons performed the surgery for you? I live in Singapore and was diagnosed with TOS for 2yrs. I have yet to go for the first rib removal surgery as I am indecisive of its outcome. Thanks.
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Old 05-23-2011, 03:10 PM #42
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Default TOS Surgery 6 days Post-Op

Hi,

Last Tuesday I had a first rib resection, scalenectomy and pectoralis minor tenotomy. I have bilateral vascular and neurogenic TOS and Pectoralis Minor Syndrome. I have arterial and venous impingement on both sides, as well as severe brachial plexus lesions. Four weeks prior to the surgery I was given Neurontin to alleviate some of the nerve tremors. I was discharged from the hospital a little over 48 hours after surgery. I refrained from using my dilaudid (similar to morphine) drip 24 hours post op, as I did not like the headaches and nausea it caused. Since then I have been taking my neurontin faithfully 3 times per day, as well as a 5mg oxycodone as needed, but no more than 3 per day . I also take Fiorcet as needed for my headaches... which have dramatically declined in frequency and duration over the last week.

Since my return home, I have noticed marked swelling of the vessels traveling up my neck from the clavicle incision. My surgeon called this afternoon to check on me, and indicated that the vessels were unusually swollen as he needed to separate the vein. I am not sure quite what that means, but I will find out Friday at my post op visit. He was also upset to hear that I had not begun my PT or OT regime, as the surgical fellow assigned to my unusual case did not write the necessary prescriptions. Has anyone begun PT and/or OT a week post op? I am doing well otherwise, and now realize how much pain I have been in for so long, as my left arm (the surgery site) is less painful than my right arm. Go figure.

I would love to hear of anyone else's stories.
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Old 05-23-2011, 05:21 PM #43
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Sounds like things are improving for you, TOSPITA. That's always good to hear! Do you mind if I ask who your surgeon is and where you had the procedure performed?

I haven't had the surgery yet, but one of the docs I have met with routinely prescribes a PT course to start 2 weeks after surgery.
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Old 05-23-2011, 07:43 PM #44
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I had my surgery at UPMC Mercy Hospital in Pittsburgh, Pennsylvania. My Surgeon's name is Dr. Jae Sung Cho. He is an associate professor of Vascular Surgery at Pitt Medical School, and a member of the UPMC vascular surgery team. He is an exceptional technical surgeon, and was very highly recommended from various doctors at Mayo, JHU, etc.

If you are considering surgery, please be sure that you have gone through every diagnostic test to ensure exactly what the diagnosis is, and the best way to treat it.... and get a very thorough seond and/or third opinion.
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Old 05-24-2011, 09:33 PM #45
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Yeah, I've seen 3 docs and had all the tests for TOS. What test did Dr. Cho use to diagnose the pec minor syndrome?
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Old 05-25-2011, 04:52 AM #46
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Default Scared is putting it mild.

Hi. Thanks for all the info. I am going for first rib removal leftside on 13 June. This site has helped me a great deal and I am going to try aff the healpful tips. Any more tips would be greatly appreciated. Regards
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Old 05-25-2011, 06:49 AM #47
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There are three tests that were used to diagnose the pec minor issue. The first was a simple push test on the nerve bundle behind the pec minor tendon. The second is a comparative analysis of a specific muscle response and Erb's point (over time) of EMG tests and NCV tests. the third is a higly specific Doppler test that shows axillaryvein and artery impingement at that location.

My tests over 30 months included multiple EEG, EMG/NCV, Doppler flow symmetry, Doppler ultrasound, MRI/MRA of the bilateral bracial plexus, multiple MR of my spine and brain, as well as a physical therapy evaluation. I should note that was never a physical therapy candidate. I am a former national level swimmer, who suffered severe spinal fractures in 1996 and 2001, thus leading to a bad mix of ingredients for TOS
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Old 06-14-2011, 10:53 AM #48
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Folks,

Very interesting and valuable read.

While it seems like recovery depends on the individual and their specific circumstances, I'm wondering what guidelines most of you were given in terms of recovery and timing for the following:

1. Rest -- I would imagine your doctor's ordered you to do absolutely nothing for some period of time. Couple weeks?

2. Stretching / Manual Therapy -- At what point did you start doing range of motion movements? Have somebody execute manual therapy?

3. Strengthening -- At what point was it "safe" to start doing strengthening work to start rehabing the injury? After a month? Six weeks? Two months?

4. Back To Activities As Normal -- This would mean, whatever you were doing prior to the condition (i.e. riding your bike, playing tennis, etc.) you can now do safely. Three months post op? Six months?

Trying to get a general gauge in the case I have to have surgery myself. I need to fit this into my life so it has the least impact on my personal and professional situations.

Thanks in advance.

KY
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Old 06-14-2011, 11:04 AM #49
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Originally Posted by kyoun1e View Post
Folks,

Very interesting and valuable read.

While it seems like recovery depends on the individual and their specific circumstances, I'm wondering what guidelines most of you were given in terms of recovery and timing for the following:

1. Rest -- I would imagine your doctor's ordered you to do absolutely nothing for some period of time. Couple weeks?

2. Stretching / Manual Therapy -- At what point did you start doing range of motion movements? Have somebody execute manual therapy?

3. Strengthening -- At what point was it "safe" to start doing strengthening work to start rehabing the injury? After a month? Six weeks? Two months?

4. Back To Activities As Normal -- This would mean, whatever you were doing prior to the condition (i.e. riding your bike, playing tennis, etc.) you can now do safely. Three months post op? Six months?

Trying to get a general gauge in the case I have to have surgery myself. I need to fit this into my life so it has the least impact on my personal and professional situations.

Thanks in advance.

KY
Hi there
I can let you know what my doctor told me to do, although I'm sure doctors and guidelines vary from place to place...

1) I didn't get told specifically to rest, although I was told that I would probably feel quite out of it for a couple of weeks. They said that it really varies from person to person how much the op impacts on you - I was lucky and recovered quickly but I've read about a lot of people who have had taken a while to get back on their feet.

2) I saw the physiotherapist just before I was discharged from hospital (around 36h after the op) and she gave me exercises for my shoulder to do as often and soon as possible, to prevent it 'freezing'. It mostly consisted of lifting my arm and stretching my neck to improve the range of motion as it was very stiff to start with.

3) After a few weeks I was sent to a physiotherapist who carried on with getting my shoulder strength back and helping me with my range of motion. I saw her once a week for around 6 weeks I think, and she advised me that I could go to the gym and do light exercises as soon as I felt ready.

4) This again, I think, must vary a lot depending on exactly what op you have/any complications and prior health etc, I got back to uni after about 2.5 weeks (walking the 3-4 miles there and back!) and the gym a couple of weeks after this. I built up slowly as I didn't want to overdo it. I would say it took at least 3-4 months before I could do pretty much everything again, although I got some problems with muscle cramping after prolonged standing for 6 months or so.

Hope this is helpful

Bex
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Old 06-14-2011, 11:25 AM #50
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Hi there
I can let you know what my doctor told me to do, although I'm sure doctors and guidelines vary from place to place...

1) I didn't get told specifically to rest, although I was told that I would probably feel quite out of it for a couple of weeks. They said that it really varies from person to person how much the op impacts on you - I was lucky and recovered quickly but I've read about a lot of people who have had taken a while to get back on their feet.

2) I saw the physiotherapist just before I was discharged from hospital (around 36h after the op) and she gave me exercises for my shoulder to do as often and soon as possible, to prevent it 'freezing'. It mostly consisted of lifting my arm and stretching my neck to improve the range of motion as it was very stiff to start with.

3) After a few weeks I was sent to a physiotherapist who carried on with getting my shoulder strength back and helping me with my range of motion. I saw her once a week for around 6 weeks I think, and she advised me that I could go to the gym and do light exercises as soon as I felt ready.

4) This again, I think, must vary a lot depending on exactly what op you have/any complications and prior health etc, I got back to uni after about 2.5 weeks (walking the 3-4 miles there and back!) and the gym a couple of weeks after this. I built up slowly as I didn't want to overdo it. I would say it took at least 3-4 months before I could do pretty much everything again, although I got some problems with muscle cramping after prolonged standing for 6 months or so.

Hope this is helpful

Bex
Bex,

Very helpful.

I read somewhere that you consider yourself a "gym bunny" so I am definitely interested in your recovery details. I too am a gym bunny and consider myself to be in great shape. I'm hoping this beneifts me if I need to go the surgical route.

I was told that I don't have any rib issues and this would be more of a scalenectonomy along with some potential subclavian artery repair work (maybe).

Two weeks of complete rest, with PT starting at six weeks, and then full recovery by 3 to 4 months sounds reasonable. If I need this done, I was thinking of doing it post summer/early fall. With any luck, that would have me on the rebound after new years.

Thanks much!

KY

P.S. Bex...tried sending you a PM...couldn't for some reason.
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