anyone who is hypermobile wouldnt benefit from tos surgery unless they have a cerival rib, imho

i freakin hate my shoulders now i used to think shoulders were attractive. no more.

Why wouldn't the removal of the first rib and scalenes help a hypermobile person? Wouldn't the compression be reduced?

Argh. TOS is leaving me with little hope. I have read nearly every pub med article that exists. Every thread on this forum going back years. Links on the net. Twitter even. Emailing people going back to 2002 about their long term relief of surgery.

I am having a very difficult time believing there is any real hope for serious NTOS relief unless I am willing to simply drop everything in life and quit working entirely. Even with a remote chance of two (I am bilateral) decompression surgeries the likelihood of relapse is great if I go back to a computer job. Or the likelihood of being left worse is very probable with scar tissue and such.

I feel out of options. Have tried PT. Chrios. Active release. Deep tissue. Muscle relaxants. Etc. etc. I am depressed and exhausted from seeing doctor after doctor. I have an orthopedic appt. tomorrow and a vascular surgeon appt. on Friday. I am not expecting any good news but rather more input on how complicated my situation is. Hoping for no vascular involvement but am not guessing I will be that lucky.

I do self care -every- day and still find myself worsening little by little. I don't want to live the rest of my life on opioids and fentanyl or be reduced to having people drive me everywhere because I am unable to use my hands overhead. I want my old life back and feel like I am dying slowly with this.

I feel very dark and helpless as I watch my career, my marriage, my world, and my sense of life just dwindle away. Just so unjust and unfair to have this. I truly feel a sense of sadness for anyone afflicted with TOS. It is horrible and mentally torturing in addition to the physical symptoms. I would rather die than live like this indefinitely.

well people with hypermobility (not just a ltitle but A LOT , like eds http://fmshmscfs.bravehost.com/myPictures/phpX686v5.gif)
nothing is stable. cutting out a rib would help someone with an extra rib definitely but if a rib is just hiked up because of the scalenes which are turned on bc the neck isnt stable from fhp. hypermobile people need stability. for example, i used to think there was something wrong with my pec muscles until i saw my back

not only that but surgery=scar tissue. our tissues are really sensitive.

this is all just my opinion anyways

if i ever do fully recover from all this (and i think i will) i'll feel like ive been given a second chance at life, lol

Hang in there 343v343. I understand well the feeling of grief over loss of one's "real" life. The biggest hurdle with TOS is mental. Somehow we all have to make sense with the "new normal" of our lives.

I have weeks where I can do almost nothing. But the last 3 days I've actually had pretty good pain relief. I've gone out to dinner with friends, been able to drive a little, read without getting headaches. It might not sound like much but it's huge for me.

Chronic pain gives you an opportunity to really live in the present. When I'm able to stay in the present and not spin out with worry about my future, I realize that even the pain changes from moment to moment. It is not a solid, unchanging wall of pain. Seeing that even the pain changes has been helpful for me.

Take care,
Kelly

343,
I really agree with what Kelly says, please don't give up or think your life is over.

You do need to remember that most of the ones doing well , just don't post anywhere.

Maybe you should mention the depression aspect to your doctor.
ADs can improve the effect of some pain meds also.

I agree, you need to be mentally very strong.

pain, loss of strength, less money, less activities, no more work, considered Benin, a desire to tear our own scalenes sometimes

I mean it's not like cancer, the desease of all the desease, above there is nothing.

If you got cancer you are a warrior, if you got TOS you are a lazybones. ( You can be cured of cancer 1 time out of 2, and for tos ? i bet 0,10 out of 2 )

Finally it's like we can't understand with our little neck muscles problems.
Poor boytos he have tense muscles -_- do some shoulders girdle, keep a good posture and it's ok !!... NO !

my radiologist and my gp said TOS is not a "desease" lol. Yeah it is a syndrome, so what ? Steven-jonhson syndrome is a syndrome too

But i have read a study that say TOS is as problematic as a cardiac condition.

i personaly have some ideas for treating TOS with drugs, you can see my threads.

http://www.ncbi.nlm.nih.gov/m/pubmed...340101/related

Scary pub med report. Surgery for NTOS ended up so bad, one person committed suicide. I can understand the desperation and would probably do the same.

I hear what you guys are saying, but I'm so screwed. I don't qualify for disability or SSDI, or workers comp. If I don't work I literally have nothing. That is my conundrum. The pain is bad enough, but having no money to even pursue AD's or therapy, let alone any pain relief. It's a catch 22.