Question: Who's Had TOS The Longest?
 

Questions:

How long have you had TOS?

Do you think it's gotten better or worse? In what ways?



I've had TOS five years.

In year 4 I had my right rib resection, and as a result, I didn't have headaches for over a year, (although they are now back about 30%.) Also, the vast color changes and swelling went away. The RSD calmed down. The "suicide pain" (the highest pain imagineable) has almost completely gone away - I still have occasional bouts, but most of the worst pain is about a 9, rather than the level where I just can't believe it could go...

Overall, in five years I've gotten generally worse since I am usually (90%) bedridden, and need an aide in order to survive. (As almost everyone knows, before TOS I was working more than full-time, worked out or ran almost every day, and I travelled a lot.)

P.S. You do not have to participate in this, if you prefer not to. I just wondered about other people's experience as far as "time."

9 long years!
 

Howdy!

"How long have you had TOS?"
It's almost 9 years :cool:

"Do you think it's gotten better or worse? In what ways?"
It's sooo hard to tell. 'cause pain and numbness levels change
everyday.
I'd had amazingly wonderful almost pain and numbness free days
during my trip to KCMO. Then they came right back on my way back
home (during the flight back to Japan!!).

Yasuko

12 years and counting
 

Hi Tam,

I've had TOS all my life (extra ribs, etc) and had episodes since early childhood but never knew what the muscle spasms and migraines were from.

I began having sx (weak arms, painful elbows when carrying the lightest of bags) in 1995. Didn't get dx until 2000. I tried to ride it out for another 4 years - by then the sx were unbearable. Had 4 surgeries from Jan. 2004-April 2005.

Surgery relieved the swelling hands and severe daily sx, but I still am unable to live a normal life. Migraines come and go with weather systems and are more frequent in fall, winter and early spring.

:grouphug:

Tos
 

I've had TOS for 3 1/2 years.

The last 2 years of it have been so much better due to surgery Sept. 2005.

Still suffer some from time to time and I guess I always will.

Peggy :hug:

9 years and also still counting
 

First symptoms were in 9/98 after surgery. I was either misplaced or dropped during the surgery. Immediate pain in jaw. I could not eat. I was put in traction and hospitalized for 1 week and then home traction for around 2 months. One doctor said it was Lyme disease. What a joke. The others said it was a herniated disc. I had disc replacement surgery 6/99. Did not help. The doctors thought I just wanted more pain medication when I said I was still in pain. After seeing my neurologist, then Dr. Schwartzmann in Philly, was sent to Dr. Togut for the real diagnosis. Dr. Togut performed the rib resection and scalenectomy in 2000. About 1 year later Iwas pain free. I have suffered a set back since 2006 but would not trade those 6 years for anything. I gave birth to my 4th child, a daughter who is the light of all of ourt lives. I am in pain but it is controlable. I beleive I will always suffer from symptoms but if I can live a fairly "normal" life, that is ok. I am sorry for all of you TOS'rs who can't. It is a horrible syndrome that more needs to be done about. Linda

I am saddened by your posts, but also, it is important to note how different each one is, by small parts...anyways.

My best wishes for each poster, for a better day...and thank you for sharing your story with me, and not taking offense to my question - it was not meant to intrude.

I've had TOS for only 7 months!

Doing great after my surgery, like Peg, but will probably always have some symptoms for the rest of my life. And like Linda am so sorry for the TOS'rs who suffer daily with the pain associated with this. If only there was a full proof cure!

I've had TOS for 5 and 1/2 years. I had a left rib resection and scalenectomy almost 3 years ago. Over time I've gotten worse. Surgery took away a few symptoms (tight feeling in hand and near elbow), but all the nerve symptoms remained and I developed migraines.

I went to a new pain doctor last week, and he's looking at my neck again, and mentioned MS. He also said TOS is a "controversial" diagnosis. We've all heard that before. So, anyway, I've had something for 5 and 1/2 years.

Kelly

"Controversial" - a word brought up in this post and in one from ihtos in her (hopefully only temporary) good -bye. Sadly, I think the controversy is actually a misunderstanding, or even non-understanding, in the medical community in general about this. Perhaps becasue it is so difficult to diagnos? It sounds to me like those who experiance symtoms of neorgenic TOS get the run around from doctors for up to years, before they get a clear diagnosis. :confused:

In a sense, my TOS diagnosis was pretty simple. Subclavian vein blood clot = TOS. Within hours of being admitted to the ER, they knew exactly what it was and why it had happened - and they got right to buisness to make me better.

I cant even imagine the frustration that some of you have had.

My 1999 RSI might have been a precursor to the major onset in 2003, I also had upper back, neck, shoulder problems each year in between.hmmmmm:rolleyes:

If I only knew then what I know now .. LOL
Might have been able to avoid the chronic/lingering discomfort stuff.

controversial...oy vay...it's not controversial to the three Denver docs who have devoted their entire professional lives to researching, documenting and performing surgeries almost daily on TOSers!!!

controversial...until you've got TOS and know it's real!

my heavens but I tire of the ignorant docs!

Hang in there Kelly...best thoughts to you...

Maybe if some of those Drs would read Sharon Butlers Book or something about fascia and how it can become sticky - sticking to all other tissues and spreading that way.
- they might see that it is actually quite logical.
Just hard to prove from a legal standpoint for comp and such...:(

Of course I'm sure they wouldn't read a lowly body workers book.

All --

That's why I put the "controversial" in quotes. I don't know about you all, but I kind of wait to see how long it takes for a doctor to get to the disputed", "controversial" bit . I use it, in part, to assess his/her understanding of what I'm going through.

At the same time, because surgery didn't help me, I'm open to finding out if something else or in addition is going on.

Kelly

How long have you had TOS?
I've had symptoms/problems for 13 years and after seeing countless doctors recieved a "probable" diagnosis of TOS 6 years ago. I'm dealing pretty well with the pain right now.

I think I've had TOS for about 10 years but only the last 3 have been unbearable. I had a horse fall on me 4 yrs ago exacerbating the problem.
I work for vascular surgeons and had been asking them for years if it could be TOS and they always said no, it was just Raynauds. That was until 8 months ago, I couldn't take the pain anymore and I asked our ultrasound tech to run a study just to ease my own mind and she freaked out at the results and went right to my bosses. (it was normal laying flat but when sitting up the subclavian artery occluded) They were so sorry for not believing me all these years!!! And I highly respect and regard my bosses, they are the best in their field but like alot of docs always checked my pulse with my arm in the wrong position. Thus not occluding the artery. But once I had ultrasound proof it was easy to replicate it. Now they bug me weekly as to when I'm having surgery!!!
My pain is about a 4 most days but when it's bad there are no words to explain it.
So I guess it depends on the individual has to how long you can endure the pain and getting the right diagnosis. For me it was years and alot of convincing.

I have had TOS just over 1 1/2 years, or longer? I think I was having a lot of unnoticed neck and back muscle spasms, and my neck had been able to crink in funny ways that would cause a lot of pain for a few years...but in April 2006 a yoga injury really set everything off and I started having a lot of pain and dysfunction in my arms.

Had rib resections in May and August of 2007, still hurt a lot, but functioning and improving. Always have to be careful. I have been off work since May and hoping to return early in 2008.

8 or so years
 

Of course, my diagnosis wasn't official till a few years ago.

I know what everyone is saying about TOS being 'controversial', it's one of those things that a medical professional either believes in or not, kinda like TMJ when it was a "new" thing. The best way TOS has been explained to me is that it is a diagnosis of exclusion - meaning when everything else has been excluded TOS is the likely cause...sounds funny but explains the many many tests that a TOSer goes through...

15 years this past August for severe symptoms. First suspected Dx was probably in 1993 or 1994.

Linda you are the first person that I have seen talking about eating there are many times I am choking on my own saliva as gross as that may sound to others here I gag to the poit of passing out!!! I am still the new kid on the block to TOS@ 3yrs and it has been a roller coaster the intrathecal pump has leveled me some and sure once they get me up to a theraputic level and I get out to Denver for surgery thing will get better.

I’m coming up on 9 years. I remember I had stepped on a rake, just like in the cartoons only instead of hitting myself in the face I hit my brachial plexus, I remember it hurting like hell for weeks, then about a month later I did it again on the same spot. I don’t know if that was the actual incident which started my symptoms, because the onset didn’t occur for six months; I lifted weights frequently for years and had overly developed shoulder and chest muscles. I also started playing racquetball just before my symptoms peaked. It started with a lump feeling in my throat, stabbing ear pain, jaw pain, tongue, teeth, and a tight collar feeling, and then it spread to my collarbone, middle chest, upper back, armpit, index finger, forearm, and thumb, also the pinky finger at times.

CT scans had revealed stretch marks on my ride side sternocleidomastoid but the doctor felt that it had nothing to do with my pain and sent me to PT twice to no avail. I’ve seen so many doctors and tried just about everything short of surgery. I feel like one of the patients on House.

Bumping up for the 17 year TOSer to post a bit perhaps -

and also this has a lot of good info. for several new TOSers, I thought.

I don't know if you mean me, Tam,(I'm at 15years) but I'm finally a week past left side surgery and not typing much of anything for awhile!:mad: Everything right handed at the moment...interestingly I'm not flaring on that side!:D

I am thinking of looking for/inventing a foot operated trackball though.:)

I don't know if you remember me.
 

I have had TOS for 2 1/2 years. I had bi-lateral rib resections in October 2006. I was gettin better steadily. I tried to go back to work (restaurant) in the summer. The pain came back, with everthing else, and even things I never had first time round.
I am on about triple the pain medication etc. than I was even before surgery. I can hardly function. The pain is unreasonable. I am going back to see the surgeon in January. I hope he has some ideas.

Bump up for Twila.

One person suggested that this post was offensive in some manner - I can see the pessimism that could be drawn from it, but that would be going against my intention and hopes. Rather, look at it from a different angle - which I MUST do if I am to survive. And of course you do not have to respond, you can be silent and that's always A-OK here. (Silent, talk, rage, cry, we love it all here.)

Like the new concept that people "live" with their cancer and manage and get all they can from life, I now view this TOS as part of me, it will probably not be "cured" and I must manage it, I must see the bright side of things and value the living things in my life (who) I love them all so very, very much.

And together we form this support group here.

We care if one person sounds down.

We absolutely will fight to help someone change their negative mindset, if they will let us in.

Remember to keep your anonymity perhaps, definitely consider keeping your doctors to yourself in case of internet pranks, but at least on an anonymous basis and for the few chosen people here you might start a friendship, this place really has a part in my treatment and survival.

Thank you all for that.

Iv had TOS since around 2000, had a fall ini 1999 that started symptoms. Only diagnosed in 2005 after insisting on MRI, Ultrasound Doppler tests etc. I do loose my pulse so I dont know why it took so long to diagnose, just one arm movement would of saved me 5 years of pain and thinking "its all in my head" (thats what the Dr's told me anyway!) I have great glee in taking in my results now. I just put them in front of the Dr and sit back and wait for their response (workers comp Dr's love this). No more im crazy or "I find it hard to believe what your telling me" comments. Its a lot better visiting these so called specialists with my results! I didnt find your post offensive at all. If you dont want to reply, dont. Every little bit of info I can find out about TOS and people living with TOS the better for me.

Hope everyone is having low pain day!

Ozzy

early morning ramblings
 

Tam, what an excellent attitude! This way of thinking is what keeps me feeling 'of value', because so many of my days have to be spent on me (or in bed). When I wake up I ask myself to try to do whatever I can for others and surprisingly, I CAN do small things! Small but important (giving a ride to an elderly friend, running an errand for mom, picking up trash blown in the street, etc).

Which also follows a similar idea in this thread: My pain is not greater than your pain.

I am encouraged to see so many others who have dealt with TOS for many more years than me. But that's not to say their pain is greater or lesser than mine. In Group therapy, we have a saying "our pain is equal, nobody's suffering is better than". Some of my group-ies have been abused as children, some have pins in their bones, some have mental issues... I look at them and think, gee, maybe I'm not so bad off. But they look at me and think the same thing! :eek:

Tamaras' so positive given the pain and loss she suffers. As are many, many others here. I get so much encouragement to live when I come here.

:grouphug:
I LOVE YOU GUYS!!!

I was diagnosed with TOS in February, but I would say that I've had symptoms since 1999. I went to a doctor then because of the pain and I could feel a lump in my neck. They told me it was just scar tissue from lifting weights and it was left at that. The pain would always come and go and always get worse if my heart rate went up. My symptoms got much worse last June and kept getting worse. Now I'm in constant pain, yesterday I felt like puking I hurt so bad. I also bumped my thumb on a chair lastnight and thought I was going to pass out. The main cause for my TOS is that I have a cervical rib on the right side. I'm glad I didn't listen to the first doctor I seen, he told me there was nothing they could do for me and didn't believe I was in any pain.
:hug:

I had my first surgeries 1990, but had been having symptoms for about 5 + years before that. I could never keep up with dictation in lectures at school without hideous burning pain in arms neck and hands and also always had cold hands . The bil rib extras found in 1988 when felt lump by collarbone.
Seemed to have a break for a few years and then 2004 back with a vengance!!
Hx

Dx in 1995, making it almost 14 years:mad:

I've had tos since 2002
 

So I guess I have been bitten by the tos bug for almost six years now!!!
thanks for this thread tam!!!

love and hugs,
Victoria:hug:

Lol............I think most of us have gotten the "it's all in your head" treatment at some point during our quests for a dx and tx :p

Hi will i am not sure when i got TOS i was first diagnosed with Bilateral Carpel Tunnel in Sept 2004 then i had surgery done on both sides went back to work in May 2005. In the first week back i had the same symptoms i got off the ship the first week of July it wasn't till the end of August 05 that i was diagnosed with TOS. Had surgery done on my right side the end of August 07 and it did not work so i still have bilateral TOS.