It's not suppose to hurt??
 

It's Sunday morning, beautiful sunny summer weather, hubby had to work all weekend. I't just me and the boy(dog). My hands, wrists,elbows are burning. My neck is about the usual level 4 pain, and my scpula(in my back) Is starting that weird tingeling, burning,crawling pain. I know from reading all of the posts here everyone says pt isn't suppose to hurt. Well after Friday, and some cervical traction and my arm being raised,, I am hurting since and still. Immediately after the procedure I had increased buring in my neck and in the centre of my spine(never had burning in my centre of my spine??? I told this to pt and I was told you can expect an increase of pain. Although I hate this I think I should increase gabapentin dose. I can not endure added pain. I am wearing down. I am suppose to have an emg(monofuller needle exam) soon, but as to what I'm reading it seems it could increase my pain. I had the last one 2 yrs ago, after which I had bi-lateral carpal tunnel release.P.S I know it hurts having those needles stuck in and trying to move your muscles. I am awaiting another mri. Thanks for letting me whine

It Shouldn't.. But it does Sometimes...
 

Thanks Dawn I appreciate your support. There is no weight lifting. Cervical traction, left arm raised and moved around, accu check, heat, ice, and taping of my neck to shoulder area. I am getting worried about the traction, what if it's doing more harm than good? I see my Doctor on Monday, and I will ask these questions to her as well. It seems I have some misfiring of nerves. I wonder if it's safe to use ice?? I always have before. I am scared although not diagnosed that I may have rsd, gabapentine (new drug) is helping with the burning really well at first but I think I may need more, not working as well now. These dogs are worse than children!! Thanks again, Your support is really appreciated.

I can't remember -did you have c spine problems also, is that why the traction? How much pulling is there- does it seem to be too much ?
I'm thinking if you feel you need to resist the pull you may be tensing your muscles unconsciously and getting spasms from that?

If you are wondering about RSD might be best to mention the subject it to the dr.
see what he says.

Thanks for responding Jo, I will mention this to my doctor on Monday.

Just a Thought
 

it sounds like you have very good instincts about what might be going on. i would trust those!

regarding the traction - i read somewhere in my travels that cervical traction is NOT a good thing for a TOS'er in PT. of course, there are mounds and mounds of theories, aren't there, and everyone has his or her own approach to things. the last thing i want to do is step on your PT's toes.

but it's YOU who should be running the show here. if you think it might be flaring you up - even if it doesn't hurt you at the time - then try not having the traction for a few PT sessions, would be my suggestion, i guess, and see if that doesn't help calm things down a bit for you.

part of the nightmare with TOS i think for all of us, is it's so hard to tell, with a delayed reaction time of 12 hours or more, exactly which activity it was that caused our pain to flare up or our nerve sx to sky-rocket so drastically!

but i am suspicious as i think you are, of the traction. i also would want to know more about how your arm is being manipulated in those PT sessions.

hopefully, you are with a good, TOS-savvy PT who communicates well and often with your doctor and of course with you. talk to your doctor about all of these concerns. it always feels better, for me, when adjustments are made in my tx plan in specific response to stuff that's going on with me. then i know my tx team is not only listening to me, but they are talking to each other. so important!

use today like dawn said to rest up, ice ice baby, go easy on yourself. also, it would probably be v e r y helpful for your doc if you were to keep track of your sx over the next several hours. like exactly how the "nerve pain" travels, the pattern, what triggers it, makes it better/worse, etc.

they like that kind of stuff. helps them to help us.

good luck, and i hope you feel better. and do better. soonest.

alison

I totally agree!
PT especially must be asking you first thing at every visit and making adjustments to treatments depending on your responses.
If there isn't the open communication like that and they just follow a preset plan - The therapy will most likely not be of much positive help for you.

The place that did the best PT for me - always went over a quick check off sheet as to how I was feeling since the last visit and what my pain level was on avg. After 2 weeks {of improvement} they would take new measurements - ROMs , pinch grips, strength.

Hello to all; thanks so much for your replies, went to the doctor and basically she said to tell the therapist that it has created more pain.My gabapentine is upped, and my doctor says the specialist has booked the mri for plexus. I am having sooo much pain today. I had to drive about 15 min. to go to the doctor, couldn't get home fast enough.I feel like I can hardly hold my neck up, even feels like burning in my throat?? I feel so sick to my stomache from pain. For a long time I denied my pain, disability and truly thought I could resume my life, now I am face to face with all of this, being in pain, no income,a trade I loved that I am unable to work at and absolutely no help from wc except for a small care allowance and physio, and medications. I feel ashamed as I know of lots that never got any help at all. I am grateful to my hard working husband, my family, and to all my friends here that help more than they know(crying), I am such a sapp. Just can't be strong today.

Annest told me (in the diagnosis phase) to go home and try some traction to rule in or out TOS, and to rule in or out cervical issues. IF the traction caused any discomfort, stop immediately and it was basically a confirmation of TOS causing my pain. If it helped, then my diagnosis would include cervical issues to be further explored, while we delayed TOS surgery. OR something like that...I am not quoting here. (And not waiving my medical privacy by sharing a small bit of my understanding of traction on TOS.)

So in my understanding, the traction should not by used if it causes any discomfort, and if it is beneficial, I understood it would be somewhat immediate. This was also confirmed by a neighbor who had similar symptoms to me, but she immediately benefited from traction and w/in one month all symptoms were gone, and she returned to a highly physical position in medicine / emergency.

I cannot, I repeat, I CANNOT tolerate any PT except for massage. PT according to Drs. (multiple) whom I spoken to should NEVER hurt for TOS. We have an OVERUSE syndrome, for which more overuse is not good. Now this is what I have been told, and I'm not a doctor, but in the past, PT left me totally immobile, so whether I wanted to return or not, I could not.

I am surprised that no one has really talked about this lately, but not everyone on this Board can do PT - there are many (or some) who are like me and cannot be moved / touched in any way, or in only some ways, such as in water, or by a specific PT (Feldenkrais.)

Just about every PT I've ever spoken to boasts that they can "cure" TOS or have "cured" TOS but can NEVER give me a patient name to call...so again, I like was Sea said about listening to your own instincts very carefully.

God bless you and I wish you some good days ahead...

Tam

P.S. Crying is part of the process of recognizing what's going on. This is a major occurrence in our lives. I couldn't believe it myself, and did a lot of crying.

I know for me, during the PT evaluation, they did a traction test and also a compression test - testing the c spine - since I had some osteophytes/spurs @ C5-5-6 showing on the MRI & xrays.

They did some simple downward pressures and pulling upward and then a few side to side and turned head positions with pressures to see if any pain or symptoms were increased or decreased from the pressure or positions of my head/neck.
none of those had any effect at all for me -so C spine was ruled out as a cause for my arm, neck, hand symptoms.

Of course the PTs that did do this testing - one was a spine rehab spec and one was a teacher of PT - so both were advanced in learning.
My chiro did similar tests when I first went to him too.

Thanks Tam and Jo; I truly belive this is all tos, and I think I may have some rsd as well after having my surgeries last year, my left arm has never been the same since Functional capacity evaluations, when I was released from work recovery the first time I felt some better but after lifting weighted crieghts beyond shoulder level and working above head tasks my shoulder and left arm have never been the same, my neck has good and bad days but the left arm, hand, scapula area in the back... My neck is so tight by times, I just can't take the pain anymore, Hoping whether it helps my case or not someone can tell me whats wrong and help me get some sort of relief. Tam your response is starting to make things clearer for me.

?ice
 

I'm not sure but I thought I read somewhere that

Ice was not a good thing fearing rsd.

I think the rsd forum would probably have information on if ice should be used.

Physical therapy recommendations from Dr Sanders book
 

Deborah from the old Braintalk forum posted this, she was given these by Dr Sanders when she saw him at an appointment

The initial treatment of TOS is certain types {or modalities} of physical therapy {PT}. Over the last few years, we have learned that a few modalities of PT are effective, while MANY OTHER modalities are ineffective or can make the symptoms WORSE. The recommendations below are based on the experience of OVER 1000 patients who have received therapy for TOS.
RECOMMENDED MODALITIES:

1.) Neck stretching exercises. Holding each stretch a minimum of 15-20 seconds, using your hands to help hold the head in the stretched position, and NOT trying to stretch through severe pain. If a stretch HURTS, reduce that range of stretch. Do NO MORE than 3 repetitions at one sitting; do this 2-4 times a day or more.

The 2 positions that are useful for TOS are:
1) Neck rotation and
2) Head tilting.

2.) Posture correction. Proper posture for people with TOS includes:
1) Head back,
2) Chin down and,
3) Shoulders relaxed in a neutral position, NOT STRETCHED BACK SO THAT THE SHOULDER BLADES APPROACH EACH OTHER, This position should be maintained as much of the time as possible when standing an sitting.

3.) Abdominal breathing: Practice this lying flat on your back on the floor.

4.) Nerve glides.

5.) Feldenkrais method. This is a total body approach of slow gentle movements of arms and spine with an emphasis on learning what motions bring on symptoms in your body and developing ways to avoid these motions. There is a national registry of Feldenkrais practitioners across the United States and practitioners in your area can be found on the Internet by looking up: www.feldenkrais.com

MODALITIES THAT OFTEN DON'T WORK AND CAN MAKE SYMPTOMS WORSE:
1. Strengthening exercises
2. Theraband use
3. Resistance exercises with machines
4. Neck traction
5. Exercises with weights
6. The concept of "No pain - No Gain"

The above are guidelines that have been effective in TOS patients. They will work for many people, but not everyone. Additional modalities of PT are indicated for other conditions that accompany TOS, such as fibromyalgia, shoulder tendinitis, cervical spine strain, and others.

Therapy must be individualized and it is best carried out with the guidance of a physical therapist plus additional training in the Feldenkrais method, usually with a different therapist.

Much more information about TOS can be found in the book, "Thoracic Outlet Syndrome - A Common Sequela of Neck Injuries", by Dr. Richard Sanders. The book describes the causes, symptoms, methods of diagnosis, treatment, results and complications of treatment, and other aspects of TOS.

raising the arm
 

If someone is raising your arm and moving it into positions it is going against your natural limits. Like an IME putting up your arm and moving it around saying, you have FULL RANGE OF MOTION, BUT if you did the same thing, raised your arm, and did the range YOU could do it would not be as high, far, long, and would be very uncomfortable.

You are at your natural limit. No one should ever allow a doc or PT to move the arm..they should ask you to place your arm to where they want it, then it is your limit and not beyond.....
Anything with resistance, like laying on a table with hand wirghts lifting, thera bands, and hand bikes is bad.

Also, doing a doorway arm lean, don;t be overzelous and lean into it ten times of you hurt at five.
Another thing is passive traction, some some hands on your head and gentle not pressure to release helps, if they use a contraption that bears weight in it, it is too much for sick/inflamed nerves.

I like Biofreeze- or ice, I mix 2 part alcohol and 2 parts water, in double ziplock bags.
ALso, lidoderm patches and valium for muscle spasms. It is what keeps me able towork part time.
Oh and a hottub....
di

Hello; Thanks Ocgirl and DiMarie, I was laying on the table and she was moving my arm all around and bending it at the elbow. The traction was gentle on my neck no turning just along the cervical spine. I think it's time for a change in treatment, more stretching or something, no more... Thanks for your replies, it's truly appreciated. Thanks again:hug:

ps what are nerve glides

good point OCgirl- my doc told me to watch my posture, and NOT to hold my shoulders so far back. I had/have this nasty habit of holding my shoulders too far back because they are slumped forward. Doc said that doing that (trying to make my shoulderblades touch, esentially) actually can contribute to any nerve/arterial compression thats going on....

Di- why do you mix alcohol and water in ziplock bags?
:cool: I usually mix that stuff in a glass :)

MRI vs MRA
 

Hi Hairdresser,
I think that I read that you are having a MRI soon.

In my experience the regular MRI does not show the information you need to diagnosis tos.
My regular MRI came back completely normal, the 3DMRA I had with Dr Collins at UCLA showed severe bilateral neurovascular compression. It showed dilated blood vessels that should not be dilated and compression from the bones and scalene muscle on the brachial plexus and vena cava (huge vein)

It there a large teaching hospital that has a 3DMRA? If not just keep in mind that the regular MRI will not show what you need for tos.

info
 

Anything overhead is not a good thing for tos. I remember Dr Ahn telling me keep things below the shoulder.

I got this from the American Pain Foundation, I think Dr Annest wrote it.



Diagnosing TOS
Physicians may use many different tests to determine if you have TOS. Your doctor may have you undergo one or more of the following tests:

• Plain X-rays. The standard X-ray shows bony structure the best.
• Magnetic Resonance Imaging. An MRI scanner may be shaped like a torpedo tube or a four-poster bed, and can be very noisy with banging and tapping during the scan. It is sensitive to the hydrogen atoms in water molecules and produces finely detailed pictures of almost all the tissues of the body.
• Angiography. Angiography is an X-ray exam of the arteries and veins to diagnose blockages and other blood vessel problems.
• Arteriography. Arteriography involves injecting a special dye into the bloodstream to make the arteries visible and then taking X-rays to see if they are damaged.
• Venography. Venography involves injecting a special dye into the veins to make them visible and then taking X-rays to see if the veins are damaged.
• Electromyogram (EMG). Occasionally, more information about which nerve is involved is needed and an EMG is ordered. This study uses small needles or skin electrodes to measure the electrical response in muscles related to specific nerves or nerve roots. If the response in the muscle is abnormal, this can give your doctor information about the status of the nerve going to that muscle.
• Nerve Conduction velocity (NVC). NVC tests the speed of impulses through a nerve. The nerve is stimulated with electrodes placed on the skin. The nerve activity is recorded by the electrodes and measures the time it takes for electrical impulses to travel between the electrodes, which allows your doctor to calculate the nerve conduction velocity.
• Computerized Tomography. Known as a CT or CAT (Computerized Axial Tomography) scanner, this instrument is shaped like a big donut and is sensitive to the hardness of tissue. Hard tissue, such as bone, appears white, soft material such as water appears black, and tissues of intermediate density are seen as shades of gray. CT scans work best for bone problems.

TOS is usually associated with at least one other medical condition. Other common conditions associated with TOS include: biceps/rotator cuff tendonitis, shoulder impingement syndrome, cervical spine strain, fibromyositis, cervical disc disease, spinal stenosis, cervical arthritis, brachial plexus injury, carpal tunnel syndrome, pectoralis minor syndrome and TMJ abnormalities.
Overview | Causes of TOS | Signs and Symptoms | Getting Help | Diagnosing TOS
Medications | Complementary | Physical Therapy | Psychology | Surgery
.

PT
 

Here is what he says about PT


Thoracic Outlet Syndrome Physical Therapy
Physical therapy (PT) is an important part of treating TOS. It’s best to work with a physical therapist who has experience treating TOS. When done correctly, physical therapy may improve TOS symptoms enough that more invasive therapy is not necessary. If surgery becomes necessary physical therapy improves outcomes after surgery.
Conservative management of TOS with physical therapy begins with a comprehensive assessment. A physical therapist’s assessment will include tests that, when used with medical diagnostic tests, can contribute to a more accurate diagnosis of TOS.
A specific TOS evaluation focuses on the following:

• history of symptoms including mechanism of injury if applicable,
• static posture and dynamic posture,
• joint play of cervical and thoracic spine,
• 1st and 2nd rib mobility,
• clavicle and shoulder mobility,
• over used and/or underused muscles, and
• upper limb neurodynamic tests.

Specific tests for TOS used by physical therapists are Adson’s test, stress abduction test, postural positioning tests, supraclavicular test and costoclavicular test. 90% of patients with TOS have tenderness over the scalene muscles and can have their symptoms reproduced with the stress abduction test.
Each patient with TOS has different signs, symptoms, and causes of the syndrome. Physical therapy should address individual differences. It is very important that the treatment administered does not worsen nerve symptoms at any time throughout the rehabilitation. It is also very important that the patient take an active role in continuing their care with a home exercise program in addition to clinical treatment.
Physical therapy for TOS can be divided into three phases.
Phase 1 – Managing Acute Symptoms
During the first phase of physical therapy, the therapist concentrates relieving the acute or severe symptoms of the syndrome. He or she may educate the patient about the anatomy involved in TOS and the purpose of the techniques he or she is using to treat the symptoms.
The physical therapist may use ice to control swelling and manual techniques to relieve swelling. He or she may position your arm for comfort and may use a shoulder immobilizer until pain is reduced. The physical therapist will guide you through passive range of motion (PROM) exercises, active assisted range of motion (AAROM) exercises, and active range of motion exercises (AROM) of your spine, shoulder, and joints.
To control nerve pain, the physical therapist may use ice, positioning and desensitization techniques such as vibration, brushing, or touching with various textures.
During phase one, the physical therapist will address bony or soft tissue restrictions as tolerated by patient and educate the patient about neutral joint positioning. The physical therapist will begin stabilizing muscles, as well.
Phase 2 – Pain Stabilized
During phase two, the physical therapist will introduce more exercises for stabilization and neutral positioning. He or she may introduce neural mobilization techniques of specific nerves and will continue to work on joint and/or soft tissue dysfunction with manual techniques.
By the end of phase 2, the patient should be able to control cervical, thoracic, lumbar and scapular neutral positions in sitting, standing, supine/prone and side-lying.
Phase 3 – Progressing to function
During phase three, the patient will progress to functional movement slowly, with a focus on actively controlling neutral positions before adding weight.
TThe physical therapist will make recommendations about ergonomics and working. He or she will add resistance to exercises so that muscles can be strengthened. The patient and physical therapist work on continuing to progress to increased function and activities.
Next Steps
If, at the end of six to eight weeks of physical therapy, no significant progress has been made, the patient should be referred back to the physician or specialist for re-evaluation. If conservative physical therapy fails, the patient may undergo surgery or be referred to a chronic pain management program.
If surgery becomes necessary, physical therapy improves outcomes after surgery. After surgery, however, the emphasis is placed on maintaining freedom of the plexus to minimize scar tissue.
Overview | Causes of TOS | Signs and Symptoms | Getting Help | Diagnosing TOS
Medications | Complementary | Physical Therapy | Psychology | Surgery
.

Nerve glides and info-
http://neurotalk.psychcentral.com/sh...2&postcount=11

its not supposed to hurt -therefore they dont know what they are doing
 

hi hairdresser,
towelhorse here, i dont know whether you have read any of the things that i have written, but essentially i had traction and it made me worse, then nerve glides, it made me much worse, then truncal strengthening , worse still, then work hardening agh!!!. then they called it chronic pain syndrome..

they do not know what is actually happening. my theory is that we are compromising the nerve that goes under the scapula (long thoracic nerve) every time we use our affected arm, everytime we lay on our backs, everytime we breathe deeply, everytime the clinician massages the area, everytime we sit and increase pressure on our diaphragm that causes our ribs to place more pressure on the nerve, all the time we increase our weight that places more pressure on our diaphragm etc., everytime we bend down to the ground and use our affected arm and then breathe which puts 3 times the pressure on that nerve. this in turn makes the arm unstabilised and then other compensating muscles (pectoralis minor) put pressure on the nerves to our hands. please, try putting your arm in a sling for a while and anything that hurts is bad, any drugs which give you the ability to do things which compromise the nerve are bad, anybody who tries to get you to do things that make your situation worse doesnt know what they are doing. i understand your position, i have been there, you are just trying anything that may make you better. focus on those things that improve your situation and don't succumb to the pressure to do the others regards towelhorse

Thanks so much to all of you. What a great support system. With hubby working 7 days a week lately and I don't like to say too much to my mom and dad, they are older and thier health is not good. I hate to worry them. My injury and wc and 3 years of not getting the proper help, I have gotten much worse. I am going to physio today, No more traction!! It's hard enough to cope without all of this added pain. I'm not even sure OCgirl if there is an mra around here. My doctor said an mri is planned of the plexus. I have emg(needle) testing the end of June. Yesterday my gabapentine was incresed, I had a sleepless night as well as the night before. I am staring this thing in the eye, no more deniel, doing things I shoudln't be doing pushing to hard. I have to learn to respect my pain. It's so hard, but the flareups are hell and knock me down for so long, and gives me absolutely no quality of life.Towelhorse I have read alot of your threads, I have had some pressure on my left side of my ribs(hurts) I thought it was a fat pain<LOL, is this related or could be related to tos?I don't know why it takes so long for the right medical help, I have appeals coming the end of August, not sure if I will get more proof that I belive this is and still all work related. At this stage I want some help in getting better.Thanks again

Went to physio today. I told the physiotherapists about all the pain, reaching very high levels and not being able to function. I am glad to say no more cervical traction!!! She took it easy on me and between increasing my gabapentine and the ultrasound, heat and ice my pain levels are back to about a level 6.Di I also have a bag of frozen peas, and lots of ice-paks. I will try your idea!!! I also asked the therapist about a mri verus a mra. She said she would and could answer questions about this on Thursday(some reasearch). You guys are so good to me. Honestly the support all have given is TRULY APPRECIATED FROM THE BOTTOM OF MY HEART. BIG HUGS< BUT GENTLE!!!:grouphug:

I like the alcohol in a baggy response LOL

MRI vs MRA
An MRI is only 2 deminsional
the 3d MRI/MRA is just that 3d. an incredible machine
The techs didn't even know what a 3d MRA was until I gave them the info on paper and they were oooing and ahhhing.

MRI's do NOT show TOS cmpressions per Dr. Williams
However, I had a 2d MRI/MRA as requested by the defense and it still showed the compressions.
Then they asked for a MRV (with dye) and it showed.
They are still denying me medical trreatment after 5 years.
So, yes, I'm paying for it in more ways than one.

Olecyn; thanks for telling me the difference between the mri and mra. Honestly I didn't know. I not even sure if there is a mra here?? I will ask. I asked what if things aren't coming all from my neck, What if the mri doesn't show anything? the therapist said then there will be more investigating. Do you think the emg with the needles inserted into muscles will tell them much? I came home from therapy today feeling some better, then went to pick up my newspaper in the driveway, I got alot of pain instantly in my neck, really bad headache. I took some of my zanaflex and used my icepak immediately, and I am feeling some better. I also took my increased dosage of gabapentine, it's not working as well, but helps to take the edge off. Thanks so much and thanks in advance for any additional comments or help.

The Best
 

Jane,
I'm sorry you continue to go through such pain. I hope you get the testing you need and they come up with the results so they can treat your problem appropriately.

You guys on this forum are the bestest ever for support.

Go TOS'rs :grouphug:

Hope

Nice to see a post from you Hope!
Take it easy though:cool:

Hope I am so glad to hear from you! I have been worried. I read that you are doing better, thank god and your doctor. Please take it easy, and know we will be here when your able to return. Honestly, take care and know you are missed terribly. Your pal Jane:hug:

She Has a Name!
 

hi, jane,

i'm so sorry you're having such a hard time right now. i think part of what's going on with you, if you don't mind me being so bold, is that maybe you are coming to the terms with the sad realization that you may not be able to return to the profession you trained so long for, worked so hard at for so many years...and were i'm sure, so very good at!

TOS takes so much from us, on so many levels. what i hear in between the lines of your posts is pure grief. you are a W/C case, if i'm not mistaken, and this is a work-related injury for you. keep very careful records. are you seeing a pain psychologist to help you through this? i think that might be very helpful for you, jane. just something to think about. and there is absolutely no shame or stigma attached to it, i want you to hear that loud and clear. now, it would probably need to be "approved" or whatever by your primary W/C doc, i would think, but maybe the referral would be better coming from your PM doc or even your PT (that PT sounds like someone that's willing to work with you, do research on your behalf and that is awesome, jane!). i hope this doesn't offend you in any way, it applies to a lot of us. TOS'ers tend to be workaholics - take away our ability to function in the workplace and you've got some very unhappy type A personalities on your hands, people! think about it.

the EMG/NCV isn't likely to show much in the way of TOS, i'm afraid. most of us come back "normal" on those studies, with 2 major exceptions. if there has been EXTENSIVE damage and you're a very advanced case, a regular EMG/NCV might show some abnormalities. or, if they are using the evoked potential technology to test all the way up across the brachial plexus to the C-8 and T-1 spinal nerves to look specifically for TOS, then that might show something. the so-called SSEP test.

dimarie sometimes posts about this and is much more knowledgable than i about the reasons why. but in a nutshell, i think that TOS affects the smaller sensory nerves first, and it's the larger motor nerves that get tested in these clunky basic electrodx studies. so unless you are having the SSEP done, don't expect to get a TOS-specific result. what they ARE useful for, however, is ruling other stuff out or in in your case, like carpal tunnel syndrome or cubital tunnel syndrome, or even setting the stage for dread "double-" or even "triple-crush" stuff. i have that. we are all vulnerable to it, once the ulnar nerve is damaged at the BP level. if you take a look at dr. fried's site at http://nervepain.com there might be more info there for you, or PM dimarie or perhaps she'll take the bait and chime in on this thread (mommy? are you reading this? come home, all is forgiven!:winky:)

anyway, keep taking good care of yourself, hair....oops i mean jane:D !

this, too, shall pass.

alison

p.s. the MRI of the neck won't show much either... it's no big deal. search tshadow's thread on testing for TOS - she goes into a lot of detail about some of the hoops they have us jump through (not to say your docs will order each of the tests listed, by any means!). it's all a process of ruling out other stuff, mostly. some day hopefully there will be an AFFIRMATIVE diagnostic test for TOS, but we're not there yet except in the rare case of C-ribs or something like that; even then it can be touch and go. the dx is fraught with controversy. W/C will fight it to the bitter end. just keep doing what you're doing - you take care of YOU and let your lawyer worry about the legalities.

Hi Jane, Hi to everyone !!!!
Jane, I to have had ALOT of problems with Arterial TOS. I have been fighting to stay alive financially for 3 years now. My neck is a big problem and I too have the throat thing. MRA'S seem to be one of better test with dye to see the compressions. I had 4 EMG tests(neg. results on all ) and 8 MRI"S since 04(neg. except the neck) until I learned here on the forum about MRA'S and MRV'S. I suggested it to my doc in Boston and it showed Subclavian compressions in the neck and at the Brachial Plexus. Along with DDD (Degenaritve disk disease )

Unfortunately my doc is non-surgical and can't do more. I went to see a Thoracic Surgeon yesterday and he said that I do have TOS but wants a venology (?) and a new MRA. I have tried for disability and got denied at the ALJ level. Now I am filing a new claim !!(after 3 years of fighting). The reason I want to say all this is because WE all have been there and it downright **** s to have fight for everything. I know and feel what you feel. This is THE BEST PLACE to be tho so, Keep on fighting , finding new Dr's, keeping a pain diary is also helpful too !

As far as your dealing with the pain posting is good because these people here can help I think better than some of the Dr's I have gone to see ! I always get new info here ! Take care of yourself and again HI EVERYONE !!

Dolfinz :hug:

You guys are great, I will bring up this stuff with pt tomorrow, and I will read some more links this evening. What is one to do.Honestly, I feel like giving up but really how can you? You guys aren't going to belive this one?LOL you probably will.Remember Christmas time wc cut me off my lyrica, well these are some meds the pm doctor put me on after being in the wc pain clinic. Well I am in appeals right now, because they cut me off the first of March. I went to the pharmacey today and not 1 of my 4 meds is being covered???I am ok for now but if its not straightened out soon???I went for my IME 3 wks ago and while waiting for the gabapentine approval, IME doctor said he would look after getting it approved, and he did, no problem last month. I then went to the pharmacey today and there is nothing being covered????? By the way I didn't cash that cheque yet!!! I am so mad right now and at the same time I would like to cry.If I have to go and stand in front of wc building I think I will. I am fet up. A big sign board...
Thanks so much for being there, to all. You really don't know how much your support and friendship means to me, hopefully I can get some proper medical care soon....:grouphug:

Well
 

Alison you do a good job, with the nerves, and Dr Frieds site...:)
I am battleing a bit with this bronchitis and fever so I have to take a break, but the info is good for all.

jane if you can search gypsymom2go had information on how she filled meds while waiting for the w/c. When De had that situation she had secondary coverage that paid....then the w/c had to pay back.

If you still do not get your meds covered PM, I will research for information for you later.
Di

Hi

I don't post much but sometimes I just have a few things to add. I've read your posts and replys here and for the life of me I can't remember if you've had surgery for TOS or not? In one post you mentioned "surgeries" so I am not sure.
I just wanted to say that I too had lots of pain before my rib resection, which caused my blood pressure to go sky high, emergency room visits and everything. The first time the doc there said I just was not being given enough meds to control the pain. I was seeing my PC physician every few weeks for toradol shots, plus 2 loritabs a day. So the ER doc gave me a script for Demoral...needless to say I held onto that like it was gold-only for high high pain.
Well I've gotten way off track now, but I wanted to add that there was a very knowledgeable PT guy I had that was able to bring my ribs down. It helped a lot. Not very many PTs know how. I have had so much PT I could almost treat myself now. But nothing compares to the decrease in pain I had following my rib resection. Now that only goes for AFTER the intense pain from surgery let up.
It's been 4 years now with this and no life still so I can empathize with the way you're feeling. You lose so much and your life changes immensly. Just know there are people out there that are praying for you and hope you get the help you need soon. Feel Better...

Sandy

This may have already been mentioned (I didn't go back and read the whole thread) but if you have any doctors who are really understanding of your pain and situation, have you asked any of them if they could keep you supplied with samples? Or at least, anough to help you until you get approval? I know that alot of doctors do this for patients. I see alot of elderly people come into my PCP's office picking up samples and from the looks of the sacks they're given, it's quite a bit of medicine. I would guess that they can't afford some or all of the meds they need to be on. Surely there are other drs. who would be willing to help their patients out like this.

Hello; I have never had tos surgery, still in limbo. My surgery was last year bi-lateral carpal tunnel release.

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"It's been 4 years now with this and no life still so I can empathize with the way you're feeling. "You lose so much and your life changes immensly. Just know there are people out there that are praying for you and hope you get the help you need soon. Feel Better..."

Thankyou, it's been the worst 3 yrs of my life. My condition has gotten alot worse. My problem has been that I didn't accept this disability.Although, I'm starring at it face to face now. I've always pushed myself which caused major flares but my pain is different now much worse, just bending over to get my newspaper in the driveway yesterday was immediate, thought I'd have to go to the emerg.Pain was a level 9. Thankyou for the prayers, and kind words. I wish the same for you .:hug: I will be able to get my meds refilled, and I will but I think wc should be responsible, and I will start calling tomorrow am. There must be an explanation??

Just wanted to let you all know, wc is approving my precriptions. Just got the call today. Am I glad of that!!!

Mri And Mra
 

What is MR Angiography?

"Magnetic resonance imaging (MRI) is a method of producing extremely detailed pictures of body tissues and organs without the need for x-rays. The electromagnetic energy that is released when exposing a patient to radiofrequency waves in a strong magnetic field is measured and analyzed by a computer, which forms two- or three-dimensional images that may be viewed on a TV monitor. MR angiography (MRA) is an MRI study of the blood vessels. It utilizes MRI technology to detect, diagnose and aid the treatment of heart disorders, stroke, and blood vessel diseases. MRA provides detailed images of blood vessels without using any contrast material, although a special form of contrast material is often given to make the MRI images even clearer. The procedure is painless, and the magnetic field is not known to cause tissue damage of any kind."