Hi Peggy,
I just started going to PT about 3 weeks ago for my cervical spine fusion that I had repaired back in Sept. My physical therapist is also familiar with TOS.
I had my TOS surgery approximatley 10 months ago and have started to have reocurring symptoms pain etc..
My physical therapist does very gentle massage and nerve release stretches for me but never deep tissue.. I go home and later that night I am so sore and have a raging headache.. He told me to use moist heat and that seems to help.. Plus I take my Meds..
Just curious.. Have you seen your TOS Dr since you have had the return of some pain and now numbness you may have some scar tissue that could be irritating things.. Or a bad disc in your neck.. Just a thought..
I hope your able to get your flare under control.. And numbness can be so scarey...
((Hugs))
Dawn

Hey Dawn,

No, I haven't seen him, but I am working on a referral to go back and talk to him. I am so scared all this is coming back.

thanks

Peggy

Peg, with De sometimes in her flares, the touch is too much. I use a gentle pressure over the trigger point. Hot towels in a microwave, the hot tub with whirlpool, no pulsing. But the biggest help, and we are lucky to ahve Dr.Togut only 15 minutes away is his ability to do a trigger point in the trap area and neck to calm the nerve.
He uses Marcaine and a novacaine type med.....A huge life saver after a week of stiff neck. Just forgeting and turning towards a sound would send her to tears, or to look down for something that fell.

Once the nerve is calm and she can move her neck again, she can use some massage (not often, just too much for her), or the hottub.

I will never forget once she asked me to try the tens unit she ahd. I made a mistake and listened to her placement. Instead of on the traps, she wanted one towrd the neck base...oh, my gosh she screamed in pain and ripped them off. Too much stim directly over the inflamed nerve.

I feel when the nerve is this bad, the muscle is making a brace around it, the trick is to calm the nerve to relax the muscle. That is why I keep up on my trigger points.

IF you can touch the spots...the doc can mark them and give you a dose...The key one to help was not in De's neck, it was in the trap above the wing, for her.
Di

Di,

The trap above my wing is so tender. It was before I had that massage today.

Even though my surgery was so successful, I still feel there is some entrapment going on. Today that therapist did some stretches with my arms. Just about killed and now I have that pain I had before surgery in the upper arm just below the shoulder.

Hurts too bad to type tonight. Will talk with you later.

Thanks for the advice.

Peggy

Sounds like they may have over worked and stretched you -
baby yourself for a week or 2 -
just some slow gentle movements and plenty of warmth if that feels best for you.
and see if that helps it.
i way over worked my forearms once and I thought I did my self in - i was sore for about 2 weeks.

But if you can get in to the dr do that also.

{I think that person was too rough on you - those with TOS, RSD, CMP & fybro, etc ALL need to find verrry gentle and expert therapists {IMO}

Di Marie,
I was wondering if you or De had tried Dr Toguts, S-D Alpha wave unit, and if you had gotten any reslt out of it. My time with it on did not do any athing even when I worked it up to the hightest level and was on my 2nd 20 minute with this contraption when he decicied to put a stop to it, how ever the trip into see te Dr was not a total waste as I met a nice lady whom her and I conversed about our lovely malady and a attorney came it to take a deposition for the other side not the patients and beleive it or not I may have eaves dropped a bit and unlike my true nature had become a tad rude, this attorney was for the guy that shares Dr T's office so guess that made him fair game I will quote some of the things that little devil made me spew out.... whilst he and the court reporterwere waiting for the the patients attorney to show up, I was not trying to eaves drop, but hearing this raised my brow and even opened my bad ear! As it did for the lady who was waiting for Dr T. This led to some fun for me, as shameful of how it may sound! If memory is correct it started out by stating with something like how can a corporation spend dollars lest drop a dime to fight a claim when all one truly wants is to feel better! By better judgement upon my part and mood, had to say to my new found lady friend, but loud enough for the ATTY to hear "that everyone who seeks a doctor or help is not looking for a large suit.. ! At that moment I have gained an attitude I do not know where it came from, but this tiny devil appeared by my good ear and promoted, each and every single word that came out of my mouth ! Or maybe prior in life was not a solitary person and ejoyed work and excercise I had been able to lift 200+ lbs exercising after working around my parents farm doing various chores as I had in the past and doing a manual job year round in and out of a truck with the smell of diesel fuel permeating my clothes and as a rule had to change out in the garage during summer and winter (the garage was not heated either, so that sped things up a bit ) before coming into the house, though as strange as it sounds it may have been hard work but I enjoyed doing every bit of it. Of course at times may just have cussed over a slammed shin or stepped in something that did not have the aroma of roses but that's life . Than again have to say my restrictions that I live with now are harder than any endeavor I may have faced before mentally and the physical part takes away so much of my man hood. Though still got one in for the good guys!!!!

Jo,

I think you are right. I guess I thought anything would make it feel better, because everything is so tight, that I just wasn't thinking that it would flare it up again.

THe therapist commented on how bad it is. She said that my whole left side is about 1 1/2 inches higher than the right just because it is so knotted up.

Went to bed early last night. Slept better and feel alittle better today, although I feel that stiff neck coming right back.

Of coarse its raining here today, and I don't think that helps.

Everybody have a Great Day!

Hugs and Kisses

Peggy

Peg, I don't know how long ago your surgery was, and I can understand your concern about the symptoms returning, but I hope you can try to put that out of your mind long enough to relax. If you think about it too much, the stress will only make it worse, and cause you to tense up more, which certainly WON'T help you to relax that muscle. That won't help at all now, will it.

While I was going to PT, another patient had this issue and my therapist told him that for tight muscles, the best thing to do is to take motrin (up to 2400 mg's a day, so that works out to 800 mg's every 8 hours) and ALTERNATE hot and cold compresses for 20 minutes each. Skip an hour, then do it again. That will make the muscles contract and expand, which means they are going up and down and "working themselves" kind of simulating a massage. The motrin, however, MUST be used consistently. There is a trick to that...if you DON'T use it every 8 hours, it's not going to work. The way she put it was "it's like a fire...you have to keep adding wood to the fire to keep the fire going...and motrin is the same way - in order for it to work, you have to consistently keep it in your system."

My SO does hard labor over the summer (he owns a landscaping business). He also had a really bad back, and the muscles tensed up in his lower back, so we used this technique on him...and within a couple days he was feeling MUCH better. Normally his back hurts for WEEKS when it gets like that, so we feel this really did help him. He worries too cuz he had surgery for blown discs a few years ago and at that time the surgeon said there was another one or two "ready to go at any time" so every time his back bothers him, that's what he thinks.

So perhaps you can TRY this????

When my neck would get tight like that, it usually went down towards the sholder too. My scalenes were removed, but it felt like the tightness was in my "phantom scalenes" and also towards the back of my neck. Rather than rubbing my neck, I'd sit in the chair and pull my shoulder DOWN until I'd feel the stretch up my neck. If you were in PT, did they have you do the towel stretches? If so, try those maybe.

You mentioned you're trying to get your pcp to giv you a referral back to your TOS doc....do you think you can request a referral for an Xray FIRST, BEFORE referring you back to the tos doc, to see if there is scar tissue building up in there? Perhaps someone who has been thru this can tell you what the first thing is a TOS doc would look for, and if it's scar tissue, then you can "head it off at the pass" and be prepared with xrays or whatever test is necessary before you even go back.

In the meantime, baby yourself. If you have a heating pad that turns off by itself, it always felt good to me to fall asleep with it tucked under my neck at night when mine was stiff. Got to where I HAD to have it though

Gentle Hugs to you sweetie...and take care of yourself. pain sucks...

Hi Mark, Glad you got some fun in...I had a little fun with the oppositon attorney when they started about TOS not realizing I knew what I did and put them in their place. Great fun I agree!

No never did try it, Is it ultra sound or like the tens, tens does a bad job to De. Is that the medtronic machine? They had one at Geisinger a friend of mine with RSD had used and she ended up with ulcerations like huge fever blisters at the site the pads were on. It was so bad she was in ICU for almost a month when they would not heal and got infected.

I think if nerves are sick one of two things can happen with outside stim:
1. the machines can confuse the nerves and make them stop their nutty signals of pain or reduce them...
2. It increases the pain signals makes them hyper and increases the pain.

OT, Sorry to hijack a second:
Mark did you read about Judge Lokuta? I pray she gets her due and thrown off the bench. She is the Judge that apologised to my abuser last year for wasting his time!. She is NUTS!

The lady is just plain carzy, ans uses the robe and gavel to do as she pleases. I must say the trist with her legal assistant was the best... what part of the word no does she understand? Glad this lady she was seeking did not sue the county, tha is all we need is another lawsuit to raise taxes once again while she was having drinks and playing school girl antics with this FRIEND AS SHE CALLED HER !not everyone is as blind amd got her out of it before anythibg took p;ace!