[minnnimee]

I have what I believe is TOS. I am so glad I found this web site, but scared from all the things I have read. I kinda figured open me up, stich me back together and I am good. It doesn't sound like surgery is the cure all though

A quick history. I have had a tightness on the left side of my neck for a few years, making it difficult to hold the phone ear/shoulder. Also couldn't crack neck to relieve pressure on the left side.
Didn't pay much attention to it, just compensated.

At Christmas time, I was putting a heavy tray of lasagna into the oven. When I stood back up and took a step, I got this sharp pain on my right side- sort of in the middle of my body but near the inner rib area. It felt like labor contractions and took my breath away. The pain would make me groan gutteral, like childbirth. Each step I took to get to the couch resulted in this very same pain. Once sitting, it continued with even a minor movement, for maybe about an hour.

Then it just stopped. It was gone. Weird, I thought. But over the next couple of days I started to get a pain near what I would have thought was my kidney- lower rib cage right side to the back, brother said- kidney stones, from the moment it happened. Pain seemed to confirm it. After a couple of days, with the pain getting more obvious, I went to the E.R.

They did a CT Scan, said no kidney stones, muscle sprain.
I didn't buy it, but whatever.

Next day, Hospital calls- saw mass on kidney- get to primary dr. -asap.

Go to primary dr., sets up mri and blood tests. Then proceeds to go out of country for a month leaving me wondering if I have cancer.

Finally get report back, kidney is normal. Does show degenerative bone something..

Dr. says I dont know where to send you. Gives referral to gastro, and urologist. I know neither is what I need.

Pain getting increasingly worse. Back pulling and burning when I walk. Goes from shoulder blade to shoulder blade across and down. Have to take constant sit downs to alleviate pain. Can't hold pocketbook or anything else with weight while walking.

Can't walk for more than a couple of minutes- Pain goes from zero to 10 quickly. Can't shop for groceries- impossible.

Can't stand to do household chores for more than 2-3 minutes. Cooking etc..all next to non existent.

Work at desk in office, so I am good for coming in and staying put.

I think left shoulder had started to give me pain before the incident- I remember thinking I strained it by trying to open a locked window at the office ( thinking it was unlocked )

Now, arms go numb when trying to sleep at night, or when holding phone to ear. Left side especially.

Can't get a good nights sleep. Teen daughter is assisting in day to day things- sometimes even need help unhooking the bra.


I am thinking something snapped that day over the oven, and has gotten progressively more painful.
Thoughts anyone?

[Jomar]

Hello minnie,

Welcome
I copied this from your intro post -
so you can get more replies from our members.

I am thinking maybe you did pull or pop something-
Have you considered getting an evaluation by a very good chiropractor?
I have had some really great results from the one I see - nearly 3 yrs now.
He does a lot more than only spinal adjustments, and he is very gentle. He also does ultrasound, low level laser, INF{electric} stim, NIMMO {mix of triggerpoint and myofascial release}, he also does adjustments on the joints of the body like my elbows and my daughters knee.

Did you see the useful links thread when you posted on the intro thread?
tons of info links - i have some chiro links on the first post there.

[astern]

Welcome to you minniemee!

From what you said, they dx you as DDD? (Degenerative Disc Disease) The event that happend at Christmas sounds like the fractured rib I had. The numb arms sounds like TOS...

I wonder, can DDD at C7-T1 also contribute to TOS? As opposed to a compression at the Brachial Plexus or thoracic outlet? Or would we then call it "DDD" and pass it over to an ortho doc or chiro?

everyone seems to have a unique set of circumstances.

Anne

[johannakat]

Minniemee- A good neurologist and/or orthopedic might also be a great place to start. neurologist is generally who you go to for numbness and tingling, orthopedic for pulling and strain.

If you get a good one, they will know when to refer you to the other.

Also, I thin Pain docs are pretty knowledgeable regarding conditions that cause pain and could help you get it sorted out.

Johanna

[minnnimee]

for the warm greeting and the advice and extensive knowledge that you have shared. Finding this site has given me peace of mind to know that other people have had this type of thing happen.

I have always been a firm believer in Chiropractors being "make believe" doctors and that physical therapy ala chiropractors being medical spa massages ( Don't shoot! ) As a result, I have always endured any ache or pain without trying to get help alleviating the problem.

I realize now that I am an ***.
That being said, I will look into chiropractors that accept my coverage- how does one find a "good" chiro??
I am also going to make an appointment with a neurologist.

I hope something it is something fixable ( don't we all) and I am pretty positive about the TOS because all the symptoms fit to a "T".
I wish I were a back sleeper...

Big question- can you get a blood clot from arm going numb? I have woke up many times with actual pain in the arm that goes numb ( in the upper arm area) It goes away after a bit once I have moved it, but the pain is real.

[Jomar]

I was leary and didn't even consider a chiro for years until I was in major spasms and the one I found {LOL a karma thing or fate i think} really seemed very knowledgeable and trustworthy.

most will do a "evaluation appt" use it like an interview or test drive of sorts. Visit quite a few.
Ask around , look em up online , call the offices and ask about the drs expertise and any specialties and other therapies dr might use.
ask about soft tissue, chronic conditions, maybe ask about brachial plexus pain?

If you can find one that will treat & see you as an individual and not just a cookie cutter patient { same as for phys therapy} and do some of the PT type tx it will save you a bundle as far as not having to go to DC & PT & massage.

my DC told me that if the compression is artery related there is less chance of a clot where if it is a vein possibility could be higher.
Mine is more artery and uses related compression.

But I would have it checked out just to be sure.
What position was your arm in while sleeping?
Pre TOS?? mine used to go to sleep if folded under pillow- dead arms totally .
and when i got RSI/TOS they would go to sleep a few times but I pretty much became very careful how I slept and my arm positions.
Now I can sleep normally but don't put arms over head or under pillow much at all. Why tempt it?

most will use lots of pillows and padding to make themselves comfy and in a good position for arms and sleep.

[johannakat]

a note about chiro coverage, at least here in CA...many that are out of network do not charge you for the part your insurance doesn't pay, if your insurance pays well...they bill adn then they may or may not charge a small copay, then they write off the rest. I am sure that's wrong on many levels, but lots of them do it. I think it is because the ins co's make it a better option for them, but whatever. Lots also have great cash plans...like buy 10 visits for a reduced price or some such thing. Most will work with you because they'd love to have your business...lots of chiro's in the world these days.

Also, MANY do a little massage, stim, and ultrasound. These are particularly good for TOS sufferers because it can help loosen some of those muscles. Just warn them not to turn the stim up too high.

Try more than one before you settle in...also, ask how much they know about RSI's. I think a chiro who has taken the time to learn about RSI's are more responsive to hard to describe and unusual pains.

However, they (like most healthcare professionals) don't really understand just HOW gentle you have to be with TOS'ers. SO stress that to them with the massage and electrostim.

good luck to you!!!

Johanna

Good luck!

[kellysf]

I had a very similar experience in a Costco when this all started years ago. I found myself doubled over in pain near my left ribs/chest. I went to the ER and they said "kidney stones." In about an hour, the pain was gone.

Several months later I was diagnosed with TOS. I had a left rib resection and scalenectomy more than two years ago. Unfortunately, I'm in more pain now than I was before the surgery.

I would urge you to see a neurologist for a diagnosis. I had PT and other therapy before I really knew what was going on and it only made matters worse. Proceed with caution and trust your own intuition. If it hurts, don't do it.

Good luck.

Kelly

[Sea Pines 50]

I agree with what Kelly said. While I think that some excellent suggestions have been made, it is VERY important not to jump to any conclusions here.

TOS is not a diagnosis I would wish on anyone. No medical diagnosis has,in fact, been made - when I read the poster's story (I am going to call her "M" here) the sx did not add up. They still don't.

M and I have exchanged a couple of emails about this. I won't say anything here that I wouldn't say directly to her (I think you guys know that about me anyway, at least I hope that you do).

The right chiro could be a valued part of the tx team, for sure. But with respect, I think the big guns need to be called in at the same time - something is wrong here, causing M acute pain - to me it sounds like more than one issue, but I am no doc.

We all know the drill, there is whole process for ruling out a host of other disorders before a determination can be made as to what is truly going on. That is why it is so important to find an excellent diagnostician.

Starting with a neurologist makes sense b/c the numbness and tingling, I think, are nerve sx. (And yes, I know that is a TOS-like sx but it could also be caused by several other things, including cervical syndrome.) Word of caution: I had an excellent neurologist for many years, but he belongs to one of those practices who subscribe to the "there is no such thing as TOS" school of thought! So it pays to find out beforehand whether the practice treats neurovascular entrapment vascular disorders including TOS (even though M is hopefully going to be able to rule this beast out in her case). Same thing with finding a PT - can't emphasize enough the need to find one who knows how to treat TOS if in fact that does end up to be the dx.

But let's not get ahead of ourselves! Last time I looked, alcoholism was the only disease in the world that was self=diagnosed. (kidding, I'm kidding...sorta)

I am not trying to embarrass anyone here, but this is a serious thing. It is important to keep an open mind. A PCP who says they don't know where to send you when you tell them you are in excruciating pain, or who leaves on vacation for weeks while you're left wondering whether your dx is terminal? Hmmm, I might have to rethink that one, I don't know. But I also know from personal experience, being in a high level of pain 24/7 can make one very emotional - does nothing for my decision-making ability (or for my disposition). The kindness of strangers can be all you have to hang onto sometimes, and all that's pointing you in the direction of clarity.

Baby steps. Pain, when it comes on you all of a sudden like that, is your body's way of telling you something is seriously amiss. There are plenty of stories among us of being overlooked, misdiagnosed, undertreated for years before our TOS was properly diagnosed. I think we sometimes lose sight of the fact that the opposite can also occur. TOS can MIMIC so many darned other pain syndromes, that it can play these tricks on you.

So it's really important to be careful and get the proper testing. The good news is, M has found us and I do think we can help her through this. Hopefully, she will find the right treating professionals and they will be able to get at the SOURCE(s) of her pain, treat it aggressively within that 3-month window so that whatever the cause, it will not become a chronic pain issue.

My 2 cents on the blood clot Q: you only need to worry about clots if you have veinous compression; with arterial compression the issue would be aneurisms; and with nerve compression the risk is nerve damage. In all cases, though I believe the compression has to be pretty bad to be of major concern or to do severe damage. I'm sure the location of the compression is also a key factor.

For what it's worth, M - I don't think you're in any immediate danger arm-wise, but you might want to start writing down your sx in a sort of "pain journal" - a good neurologist will be able to glean all sorts of information from the details you provide - you'll be amazed!

Good luck to you and stay in touch with us please, OK?

Night, all - Alison

[Jomar]

Oh - I can add that my niece and my sis in law have each had a blood clot - one in the calf and one in the forearm.

Pain was at the exact location, pink/red, swollen - at the location of their clots.
First week was the worst for both and then second week pain faded.
This was with treatment and dr care.