[BostonBailey]

Hi:

My daughter has been diagnosed with neurologic TOS and her vascular surgeon is sort of recommending surgery. He has been careful to not predict any outcomes, but claims that the only bad thing that could happen would be that the surgery would not work. She is having difficulty making up her mind to have the surgery because she read information on the internet that said that TOS is a complex surgery with potentially disabling outcomes. She feels that she could live with the way her hands are now, but the symptoms are really affecting her daily and work life. Also, she is a graduate student and is worried about having surgery in the summer before starting her program in September.

Does anyone have any advice about the outcomes of TOS surgery and how long the recovery period would be? The surgeon says that it would take about 4 weeks recovery.

[Jomar]

Hello & welcome,

I have some questions so we can give better suggestions.

What is her avg pain level most days?
Any pain meds, over the counter, or rx'd?
Is it a constant pain?
What other symptoms does she have?
How is her posture overall , esp her upper body?
From the side is her head forward of her shoulders , are her shoulders hunched or rolled forward?

Has she had any expert TOS PT or expert chiropractic that also uses a multi focused approach with PT type modalities?

Most surgeons suggest a session or 2 of skilled focused TOS PT for most surgical candidates, unless there are urgent vascular issues (clots) or severe & extreme pain.

Our useful sticky threads
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread135.html
http://neurotalk.psychcentral.com/thread125577.html

[BostonBailey]

Hello:

Thank you for your reply. I have answered your questions below:

[QUOTE=Jo*mar;891748]Hello & welcome,

I have some questions so we can give better suggestions.

What is her avg pain level most days? It depends on what she is doing and for how long. Repetitive work esp. computer work seems to agravate her condition and pain is usually around a 6.
Any pain meds, over the counter, or rx'd? She takes naproxen and meloxocam when needed
Is it a constant pain? pain is intermitent and this has caused a lot of problems in getting a diagnoses.
What other symptoms does she have? She has cold hands esp. after working on the computer. Numbness in all fingers and tenderness in the wrist as well as burning sensations in the wrist and elbow.
How is her posture overall , esp her upper body? She has poor posture and sloped shoulders with a long neck. Her neurologist commented on this many times.
From the side is her head forward of her shoulders , are her shoulders hunched or rolled forward? Shoulders are rolled foward and unequal with the right lower than the left.

Has she had any expert TOS PT or expert chiropractic that also uses a multi focused approach with PT type modalities? She has tried ART, chriopractic and PT with some limited success, however symptoms also come back

Most surgeons suggest a session or 2 of skilled focused TOS PT for most surgical candidates, unless there are urgent vascular issues (clots) or severe & extreme pain.

[Jomar]

Even really good PT can't offset the impact of working or continuing to do activities that aggravate our symptoms.
If PT/ART/DC etc - seem to be helping try to continue the sessions if possible.
TOS isn't a quick fix at all , it takes lots of time..


Here are some things she can try at home, to help w/ posture - many times a day-
The yoga corpse pose is a good start for relaxation w/ diaphragmatic breathing (belly breathing)

and
or
lay on foam roll or large towels rolled up tightly - pillow if needed for neck comfort - then just relax with arms at a comfortable position


You asked for surgery advice..
Most recommend it as a last resort , unless there is something specifically wrong, or showing on tests or imaging.

If you go with that surgeon , make sure he is highly skilled and an expert at TOS surgery and has done many successful operations.
Always best to get a few more opinions.
Of course most surgeons suggest surgery...

Did the dr mention the type of surgery ? rib resection (full rib no stump left behind), scalenes cut or removed, those sorts of things.

[heybro]

Marc, these are GREAT!

i am going to look more in to these posture things.

my symptoms have been better since i am on a set schedule now at work and my sleep has improved.

also, i like the idea of doing more with posture.

why have both my vascular surgeons said surgery now and both told me to not even try posture or physical therapy. why not at least try? they said surgery now. hahahahahaha.

can't wait to see what my next physical therapist will come up with.

i even asked the vascular surgeons what a good physical therapist would be that knows about tos. they said to not even do physical therapy.

i asked them what physical therapist they would send me to after surgery and they said that they would only address that after surgery.

come on?

[BostonBailey]

The only test she has tested positive on is the one where she raises her hand over her head and then measure her pulse. I think the test was called the allen's test and it was a doplar study. I am not clear on what type of surgery it will be other than that the doctor plans on going in through the arm pit and removing the first rib. He says that the worst thing that could happen is that the surgery is unsuccessful and that the symptoms remain. He says that he has never made anyone worse. He also teaches at the local university in the vascular surgery department.

We are worried that if we delay surgery he will become annoyed and not want anything further to do with us. It took a long time to get a surgeon's interest. But, at the same time we are worried, based on the location and some reading on the internet, that the surgery might cause worse problems down the line.

[jkl626]

Originally Posted by BostonBailey

The only test she has tested positive on is the one where she raises her hand over her head and then measure her pulse. I think the test was called the allen's test and it was a doplar study. I am not clear on what type of surgery it will be other than that the doctor plans on going in through the arm pit and removing the first rib. He says that the worst thing that could happen is that the surgery is unsuccessful and that the symptoms remain. He says that he has never made anyone worse. He also teaches at the local university in the vascular surgery department.

We are worried that if we delay surgery he will become annoyed and not want anything further to do with us. It took a long time to get a surgeon's interest. But, at the same time we are worried, based on the location and some reading on the internet, that the surgery might cause worse problems down the line.

Hi,
I am guesssing you are from Boston. Is Dr. Donohue your surgeon? He has been highly recommended on this site by others. Also I believe at his university there are physical therapists that he works with. I know he also does botox injections.Surgery should be a last resort. You cannot worry about the Dr. being annoyed. If he is then he is not the dr. for you. YOU ARE IN CONTROL and must do what is best for your daughter. If you havent tried a good pt who has experience with TOS,she should try this first. Perhaps over the summer when she doesnt have as much work.

I have NTOS,I have been off work for a year. I was getting treatment for a disc problem for 9 months and my symptoms kept getting worse. I saw several pt's chiros etc before I finally got the TOS diagnosis . I then tried 2 pts that I found from this forum and on the second one I hit a jackpot with. It is targeted Rib and joint mobilization and soft tissue mobilization. It has really helped me. I still have a long road ahead, and dont know what will happen when I try to go back to work. I kept thinking I would be better in a couple of months and be back to work, but it didnt happen that way,and we cant just will our bodies to behave.
I looked into surgery and decided I am not going to go that route for now. The average surgical outcome is 70 percent. Some dr's will tell you theirs is 90. I believe these froums are skewed because people dont go on as much unless they have a problem so it can be a little scary to hear about all the things that can go wrong after. It has definately colored my view rightly or wrongly,but there was a time I was desperate enough to try anything. I think the recovery can take awhile before going back to work. It may be that she will have to take some time off from school

This is only MY EXPERIENCE from talking to Many dr's and doing research. GOOD LUCK I hope this helps.
jkl

[BostonBailey]

Hi:

Thank you for your reply. You are the second person who has thought we are from Boston because of the username. Actually, BostonBailey are the names of our two cats and we are from Canada. So, our medical system is very different with long wait times and cranky doctors. We have been trying to get a clear diagnoses for over 5 years and she has already undergone carpal tunnel release and ulnar nerve translocation surgeries. Yet, her symptoms remain and the neurologist, vascular surgeon, and a PT all believe that she has TOS. She is thinking that she would like to delay surgery for a year, but is worried that she will become lost in the system and perhaps not have this chance again.

[jkl626]

Originally Posted by BostonBailey

Hi:

Thank you for your reply. You are the second person who has thought we are from Boston because of the username. Actually, BostonBailey are the names of our two cats and we are from Canada. So, our medical system is very different with long wait times and cranky doctors. We have been trying to get a clear diagnoses for over 5 years and she has already undergone carpal tunnel release and ulnar nerve translocation surgeries. Yet, her symptoms remain and the neurologist, vascular surgeon, and a PT all believe that she has TOS. She is thinking that she would like to delay surgery for a year, but is worried that she will become lost in the system and perhaps not have this chance again.

okay,sorry I am not too familiar with the system there although I have always heard that Canada has great health Insurance! If there is any way she can delay and try explaining it to the dr's and in the meantime try some targeted pt ,stretching and stregthening exercises -I think that would be the best course of action.

[Jomar]

Oh , so she either had multiple "crush syndromes" or was mis diagnosed for the ulnar & carpal..

Is she hyper mobile by any chance?
that can be an added factor in RSI's & TOS
http://www.hypermobility.org/beighton.php

If you/she decide on surgery , best to connect with the highest skilled surgeon that you can, even if you have to wait.

We did have a few from Canada posting years ago and they had surgery, you could use the search link and try - surgeon Canada or just Canada to see if those come up for you.
One was on the western side and one was mid area I believe.