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Definitive Tests to diagnose TOS....
I know we have posted this question before, but with all the newbies, especially Colorado7 and marabunta who seem especially knowledgeable, I thought it would be good to get everyone's input on the different ways of diagnosing Tos.
For example I was able to have an Mri/Mra performed. I was hoping everyone would be able to share the tests that were used for their diagnosis, and how effective they were, and for those who had the surgery, did they help you at all in making that decision or were they the deciding factor?? Also would you recommend that test to others? For myself, one of the tests that I had is the MRI/MRA . I had it performed here in the Bay Area. The doctor is no longer there and is practicing elsewhere, I understand. If I were to do it again, I would go down to Southern Calif. and have it done by Dr. Collins for personal reasons that I will share if you want to p.m. me. Also because there are far more TOS physicians there that I might also consult with while there as there as fewer here every day. I would see Dr. Collin's as he is known for the amount of time he spends talking to his patients, explaining his findings to them and educating them about TOS. In my experience, the Radiologist inthe Bay area didn't do this. I don't feel like the MRI/MRA was a deciding factor for me. It is a very expensive procedure that only provides limited information. For example, my prior doctor's MRI/MRA missed 2 of the nerves involved in my compression; and I was told by another physician at UCSF who's name I don't recall that the MRI/MRA's can show a compression one day and not show a compression another. They are not the difinitive diagnosis that some might be hoping they are. I also had a doppler test and numerous diagnositics performed by Peter Edglow that I wil go into further if any one wants that information, that helped to confirm my TOS. I also went through the "standards", the hands up, etc. etc. I decided to have surgery only after 1 year and 1/2 of Edglow p.t. and after the pain and vascular symptoms continued and became more than I could tolerate. I can say that the surgery helped with my vascular symptoms, but I have been told by Dr.Ellis that the length of time of my compression and the incorrect care and p.t. contributed to the severity of my TOS, so surgery was a risk I was willing to take, even knowing that the long term outcome is not good. Currently I am feeling less pain, but still unalbe to drive, cook , clean, entertain, garden, basically have a life. :Sob: But, hopefully, eventually things will get better. I still feel like the Edglow protocol is what has helped most (besides the surgery) and pacing myself. :I-Agree: I hope others will add to this thread and share their experiences!! I think it could be really helpful to everyone!! Thanks Guys!!! G ~:winky: |
G
My MRI/MRA by Dr. Collins is the only test I have had pre and post surgery.
It still shows a bilateral compression And YES Dr. C is the coolest person you will meet You knows the anaytomy better than anyone on this earth. Who would YOU see down in So Cal? Dr. Agnew is my newest Neuro/Pain Management doc and he's in Santa Barbara. So knowledgable about TOS. He even compared Dr. C's films with us and showed us sided by side where the prob is... But, I want a venogram, neurogram or doppler to be more definitive. Surgery is not out of the question again but I don't see one person on this forum thats better from any one surgeon. They all have different approaches. But, then Why would a well person be on the forum? |
Here's what I used to post all of the time:
I don't think any of my tests came up abnormal except the scalene block was positive for taking away the pain - and the high, high pain was the primary symptom - and, blood tests, obvious color changes on arm skin, loss of use of the hand / arm, temp changes, and where I pointed out the pain locations copied known TOS patterns, and differing blood pressure from one arm to the other. So the docs put all of those facts together, with the absence of any other known diseases, and concluded neurogenic TOS. TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. You may test normal to ALL of these tests but still have neurogenic TOS. (Vascular TOS alone is only about 5% of all TOS cases, and it is seen by the abnormal vein imaging.) TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS tests to rule these out, then you might have missed an obvious tumor, etc., which could be life-threatening. Yet it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present as a whole. There is no single, one-shot test for TOS. You can't usually "see" it. I am not a doctor, and this description of tests is just "laymens' terms." 1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI to rule out MS or other copycat conditions. 2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages. 3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for. 4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy. 5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP. 6. MRAs or MRIs with fluid involves cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up. 7. 3d MRAs (or is it MRIs? I always get this one wrong.) By Dr. Collins shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $7,500 right now?) 8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery. 9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc. If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!" We have a ton of articles post on the upper left hand corner. We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors ho say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis." Pain control is another big fight. Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem. The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too. Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition. |
Beth, Dimarie, and others care to post??
bumping for other posts... :)
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Dr Jordan does an ultrasound examination during an initial test block procedure. He looks real time at the blood flow during the procedure. I don't know if it has a specific name.
there is a news release form a presentation he made last Feb here Prioir to this test, the diagnosis was made by symptoms (numbness and weakness) and various maneuvers where I lost my pulse very quickly. Johanna |
I'll try to share some...not a good typing day, though!
The tests I've had, with results: -Physical exams, of course...Dr. Centeno's was the most thorough soft-tissue exam I've had, I think, and he's the first one who mentioned TOS. I had another exam the following day by an IME PM&R doc, who also mentioned TOS...both of these dx based only on exam and history. Have had many exams that included specifics for TOS (Roos, Adson's, etc.)...pulse usually disappears, hand gets numb with Roos. -EMG/NCV: 1st one showed slowing over the brachial plexus; 2nd one showed slowing of something compared to right arm. -C-spine x-rays, MRI, shoulder MRIs, brachial plexus MRI: had disc bulging and encroachment on exit foramen at C5-7; BP MRI showed swollen lymph nodes. Shoulder MRI showed some leftovers after shoulder surgery, with joint and ligament repairs. -Multitudes of injections! Most definitive was the interscalene (brachial plexus) block...arm was completely numb for a day, and numb enough to be unusable for a couple more days. Pain was gone for several hours, except some mild pain under shoulder blade. Also have had facet injections, scalene block, pec minor block, SC block, IMS, selective nerve root block, epidural steroid injection...feeling a bit like a pincushion after remembering all these! -Dr. Centeno had me do a test where I stood on a platform, and it measured how steady my balance was. He said it was really off, but I was taking Lyrica at the time which made me dizzy, so I'm not sure if that was the cause. I'm sure there have probably been more...just can't remember any more right now. I'll add later if I think of something else that might be helpful. I've had a LOT of docs, from a wide variety of specialities, all come up with the TOS diagnosis...mine originated from a car accident, with obvious shoulder injuries and collarbone instability, so I'm sure having a clear precipitating factor helped piece things together. I will add, though, that even Dr. Centeno says he's not sure how much is due to ongoing compression, and how much is actual brachial plexus damage from the accident itself. Gotta stop... Take care, all! |
If a person can get to a doctor that knows TOS it may cost less in time and money to get or not get a TOS DX first then work their way back. It also won't look like one has doctor shopped for pain meds and a DX's.
One does not need all the tests listed to DX TOS. Certain types with the new imaging can be clear. Blood work will not DX TOS. It isn't a hematologic syndrome. It will cause arterial and venous blocks but thats all. Labs will rule out or in rheumatology problems but one can also have them along with TOS but they won't cause each others DX's. Different body systems again. TOS also has NOTHING to do with Thyroid issues. This has been pounded out here before & it just isn't possible. That is a complete different body system. Many cases of TOS are DX'd in women over 40 and that happens to be the most commen age for the DX's of Thyroid disease. Ask the TOP docs, they'll tell you. Many have had to have tons of tests and walked a long road before finding out they have TOS. But if one suspects it after seeing one or two docs then get to a TOS doc and see what they say before subjecting yourself to more spent $ and pain. I have dealt with this for over 10 yrs and had great results post op and a clear DX with his type of imaging almost 8 yrs ago by Brantigan. And yes, I work in medicine, understand body systems and test results. This is not only my opinion but that of the TOS docs, research and medical history from when doctors started to understand different body systems and how they work. Again, my opinion and NOT directed at anyone so don't take it that way. |
depends on opinions
I believe it depends on personal opinion and doctor.
I was over 40 and had no Thyroid or TOS symptoms. I was diagx with the thyroid problems after TOS injury. The spasms felt in my scalense and compression from the right is strangling my thyroid. Sometimes I can have ok thyroid test and others off the wall. doctor did in my case relate the test readings to compression and spasms affecting limited space and inflamation of thyroid, specifically the right side compression area pressing. The same with my eye sight and blurriness, a high day like today and the eyes are blurred, buy the time I calm it down tonight now, the vision is fine. I trust my doctors. Dianne 1: Vojnosanit Pregl. 2000 Nov-Dec;57(6):709-16. Links [Multiple intrathoracic compression syndrome of thyroid etiology][Article in Serbian] Ignjatovic M, Stanic V. The aim of this article is to present a case report of multiple compression syndrome caused by intrathoracic thyroid papillary carcinoma and the review of compression intrathoracic syndrome of thyroid etiology. In our patient were confirmed: tracheal and esophageal deviation and compression, superior vena cava syndrome, downhill varices, chylothorax, pericardial effusion, compression of the left subclavian artery, unilateral lesion of recurrent and phrenic nerve, and brachial plexopathy. This was a unique case with multiple compression syndrome out of 2000 patients surgically treated for all kinds of thyroid diseases. Intrathoracic goiter can cause all the known symptoms and syndromes of intrathoracic compression with a possibility of rapid deterioration and fatal outcome. PMID: 11332365 [PubMed - indexed for MEDLINE] Compromising abnormalities of the brachial plexus as displayed by magnetic resonance imaging Dr. James D. Collins 1 *, Marla L. Shaver 2, Anthony C. Disher 2, Theodore Q. Miller 2 1UCLA School of Medicine, Department of Radiological Sciences, Los Angeles, California 2The Charles R. Drew Postgraduate School of Medicine, Department of Radiology, Los Angeles, California *Correspondence to James D. Collins, UCLA School of Medicine, Department of Radiological Sciences, 10833 Le Conte Avenue, Los Angeles, CA 90024-1721 Keywords anatomy • brachial plexopathy • nerve model • neuropathy • MRI • patholog Abstract Magnetic resonance images (MRI) of brachial plexus anatomy bilaterally, not possible by plain radiographs or CT, were presented to the Vascular Surgery, Neurology, and the Neurosurgery departments. Patients were requested for MRI of their brachial plexus. They were referred for imaging and the imaging results were presented to the faculty and housestaff. Our technique was accepted and adopted to begin referrals for MRI evaluation of brachial plexopathy. Over 175 patients have been studied. Eighty-five patients were imaged with the 1.5 Tesla magnet (Signa; General Electric Medical Systems, Milwaukee, WI) 3-D reconstruction MRI. Coronal, transverse (axial), oblique transverse, and sagittal plane T1-weighted and selected T2-weighted pulse sequences were obtained at 4-5 mm slice thickness, 40-45 full field of view, and a 512 × 256 size matrix. Saline water bags were used to enhance the signal between the neck and the thorax. Sites of brachial plexus compromise were demonstrated. Our technique with 3-D reconstruction increased the definition of brachial plexus pathology. The increased anatomical definition enabled the vascular surgeons and neurosurgeons to improve patient care. Brachial plexus in vivo anatomy as displayed by MRI, magnetic resonance angiography (MRA), and 3-D reconstruction offered an opportunity to augment the teaching of clinical anatomy to medical students and health professionals. Selected case presentations (body builder, anomalous muscle, fractured clavicle, thyroid goiter, silicone breast implant rupture, and cervical rib) demonstrated compromise of the brachial plexus displayed by MRI. The MRI and 3-D reconstruction techniques, demonstrating the bilateral landmark anatomy, increased the definition of the clinical anatomy and resulted in greater knowledge of patient care management. © 1995 WiIey-Liss, Inc. -------------------------------------------------------------------------------- Received: 22 March 1994; Revised: 6 September 1994 Digital Object Identifier (DOI) 10.1002/ca.980080102 About DOI J. Noterman1, 2 , P. Dor1, 2 and A. M. Jortay1, 2 (1) Department of Neurosurgery, HÔpital St. Pierre, 1 rue Héger-Bordet, 1000 Brussels, Belgium (2) Head and Neck Service, Institut Jules Bordet, Free University of Brussels, Brussels, Belgium Abstract This is a report of 3 patients who had brachial plexus tumors associated with thyroid tumors. The brachial plexus tumors were schwannomas in 2 patients and a neurofibrosarcoma in one. The thyroid tumors were a carcinoma in 2 patients and a large colloid goiter in one. The association of these two conditions may be coincidental, particularly since they have nothing in common from the standpoints of embryology and pathology. However, it is interesting that approximately 10% of the reported cases of brachial plexus schwannoma have had an associated thyroid tumor. Horner’s Syndrome and Thyroid Neoplasms - group of 6 » I Leuchter, M Becker, R Mickel, P Dulguerov - ORL, 2002 - content.karger.com ... 1988) 65 cases of thyroid enlargement with compression syndromes ... and hand pain due to brachial plexus invasion ... Thyroid neoplasms, benign or malignant, are an un ... Cited by 2 - Related Articles - Web Search - BL Direct Ectopic thyroid tissue on the ascending aorta: an operative finding - group of 3 » RJ Williams, G Lindop, J Butler - 2002 - Soc Thorac Surgeons ... present with symptoms due to compression of adjacent ... Aberrant thyroid gland attached to ascending aorta ... in a closed traction injury or a brachial plexus neuritis ... Cited by 5 - Related Articles - Web Search |
The only test I would rely on are the EMG's and the MRA/MRI/MRV.....I know I sound like a broken record, but I only believe in these tests...now maybe I'm lucky because my tests were so clear and there was no need to continue more testing, but some of other seem painful and expensive, and doctors can have different opinions sometimes.......I just hate the guessing part.
Ann |
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As I know nothing about the MRA/MRI/MRV, I can't address that, but FWIW, I was told by Dr. Sanders that he would never base a surgical decision on an EMG/NCV, as they can vary from day to day. (This was even referring to the neurologist he uses, who does a specialized TOS-specific testing procedure.) A neurosurgeon recently told me that they are only helpful when they are positive (IOW, a neg. test doesn't mean much...)
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I don't know if a couple of you skimmed my post - because a couple are just not "getting" it.
If one is in work comp, fighting a private disability insurance policy, or fighting for social security, you must have EVIDENCE. It is NOT enough for one neuro to say, without any testing, that you have TOS. Likewise, you don't want to pin yourself down to TOS, and then get examined and tested by a defense doctor, only to have them find an internal cancerous tumor at the base of your neck, and conclude you do not have TOS and thereby chuck your whole case. The tests are for PRECLUDING OR RULING OUT certain possibilities. Of course TOS is not seen on a BLOOD TEST! But a lot of rheumatological and immunilogical diseases like RA, which can mimic TOS, are. And if you have a mixed condition / disease case, you need to know it. This list is posted as a generalized yet comprehensive testing regimen in effect to block out as many medical errors and help one get to a proper diagnosis as we can, with TOS. Ultimately, it is a TOS guru doc who will put all of the puzzle pieces together - and make the decisive diagnosis. I personally wouldn't skip any of these tests for that reason, and if you don't agree, you certainly have the right to manage your case as you see fit. Good luck! |
Hiya Tam- I think you make a great point for anyone who IS fighting a workers comp or disability case....In that case you must be very organized and make sure you have all the relevant info.
I think this is also a prudent course of action to rule out or at least be aware of other possible complications if you are seriously considering surgery. But, not everyone is going that route... I thought this thread was just for people to call out what the Most Definitive test they had was. In my case, been through oodles of tests...but Dr. Jordan's ultrasound of my brachial plexus was the definitive test. Johanna |
My Dx; was the result of having an MRI and normal X-ray of the cervical spine which did show problems within my neck, but none that would confirm the symptoms that I was having. These done by the Neuro-surgeon that I was sent to by my work! However, in the past I did have problems with my neck, though never felt like what I ws going thru! The kicker was when I had PT done the second time the therapist did manual traction which caused both to explode with pain! That was the point that my faith in the Neuro-surgeon, PT and employee health Drs. was over and I sought help elsewhere and thankfully through investigation through the internet came about Dr. Togut.
Dr Togut did an amazing evaluation of my past history and a highly intense exam, and followed up with an EMG to confirm his findings, here again, he did not discount the cervical findings, but definately called Bi-lateral TOS and as I have been waiting for surgery have since decompensated and now am fortunate to be labled with RSD/CRPS! When I went to Denver to see Dr. Sanders, he also had done a detailed past history, a major physical exam which included Scalene and Pectoral Minor Blocks that especially felt wonderful after flying out and only having an hour between the airport and the office visit. Though only lasted a short while which with all the rest of the info I had there was not doubt of Bi-lateral TOS! This is how I was DX'ed and hope it is some use to others! Mark-n-Goober |
Those who have a medical background (and some whom don't) do "get it". We "get" the medical part of it.
If you as a "lawyer" view the medical part of a disease differently I guess that's the way different professions view things. It still doesn't change body systems and how they work. No one but God can change that, and even he, after all this time, may have a hard time doing it. Coming from the medical part of those who "get it" it's always important to make sure people don't relate everything they have to a "certain" syndrome like TOS (that can't cause someone's constipation & beleive it or not it has been condsidered by others here), docs look at patients that do as hypochondriacs. Now, before anyone goes off on the constipation thing and come back and say yes it does, stop and think before you post. :confused: TOS does not cause constipation. Now, the meds that you take for it will, but not TOS itself. Patients who are able to separate the difference look smart in the docs eyes and have more of a chance having the docs treat them like they are the smarter patient who can teach docs something about TOS that they may not know. Knowledge is power, as long as the knowledge is correct. Many do end up going through many types of tests before TOS is found, it happens more then not. But one shouldn't automatically open themselves up to many tests that just are not needed. Get to a TOS doc and allow them to order more testing if they feel it's needed. If we as patients could order our own testing we probably would have had a DX sooner then later, but we can't. Pt's also can't go in to a docs office demanding what tests they want, they can, but chances are the doc won't order them. There's nothing wrong with "gentle" suggestions but the doc does the ordering in the end. The bottom line is that there's a fine line between what we as patients want to see done and what the docs are willing to do without being told what to do by the patient. |
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I do not feel that this statement is fair and want to make sure you did not misunderstand "someones" post. I searched all 9 threads that discuss constipation. I did not read anyone that did not seperate the issue. Constipation is noted as a side effect for TOS medications. We use this forum for support and sharing personal information and experiance. I give great credit to all that share, and request information. Besides, that person may have something related to TOS why it causes constipation that their doctor told them and whom are we to judge.I found the statement meant to discredit kind folks. Dianne |
et al
Anything and everything can happen internally and externally to TOSers.
Are bodies are the same Even though the symptoms may change depending on the individual where the compression is and how it is treated. Sorry, Better...I have to disagree with you that GOD can only change this. Not GOD... Just as TOS has nothing to do with thyroid, constipation or even lower body sciatica, leg stiffness, toe numbness (which a well know TOS surgeon believes). How can that be? We have a closed circuit, circulation in the human body. The anatomy is controlled by the nervouse system and circulation. Only us as informative researchers can help each other. We are teaching the docs, the surgeons, the attorneys, our family and friends consistantly. We are not in this as a game. This is serious ****. It is a life of pain, sorrow and can cause death. Do you hear me? We as most TOSers are searching out every aspect to help our chronic pain and hopefully in the fututre the medical field will come together. In meantime we come together To share our experiences, our reseach, our pain. Regards And live life to the fullest Each and everyday through the pain. I believe in us! |
Very powerful
olecyn,
I have read your statement several times and cannot help but feel the need to congratulate you. You very clearly and concisely summed up my life at least and most of our lives in a few sentences. I think I will print this out and pin it to my wall. You're right this is serious ****! I only hope that physicians understand how serious it is. How much work we do to research our disorder. How much help we give each other here. I know I truly would be lost without all my friends and what I consider family here. So thank you for saying these very concise points!!! You are a master of linguistic style!:D Love and hugs, Victoria :hug: |
Hi everyone,
I would like to ask, for now, that statements about testing and dx only be posted on this thread. Let's stay on topic "Definitive Tests to diagnose TOS...." Lets avoid certain discussions because many of us have formed our own opinions and discussing it won't change anyones mind. If any new members would like clarification on a test or topic here they may PM the poster that they have the question for. Thank you very much. PS- I will do edits if I feel they are needed. |
Like I said, it was my opinion and that of the medical profession. You can believe what you want, as can I.
I have better things to do like enjoy life then try to change thousands of years of medical practice and the way docs think. To those who need medical tests done, get to a TOP tos doc and let them order the tests needed. It may cost less in travel and time then paying for the tests depending on what ins one has. I won't reply to this thread again. Sorry it got off topic Jo55. |
For All The Newbies
There is some valuable notations here on the forum regarding testing...
We have all had some mof the tests and some of us cannot even get ok's to get them done. After 7 years I'm still asking you~all questions on testing. My thread on Vascular and arterial testing. I take that information and suggest it to the treating MD's even though I'm post surgery 2002. Finding a FAB TOS doc is essential. I just founf mine after all these years. The BEST thing I agree with Grom is the PT. The Edgelow program has sure helped me. You can order it without seeing Peter but its up to YOU as a patient to do it daily, 4-6 times a day whatever it takes. It's not a cure but relief and strengthening when our bodies come crashing down. Tamara has pointed out in her post thread on all the tests to have done to rule out and rule in TOS. Informative, supportive, intelligent peeps here that have been through it all. I don't know what I'd do if I had not found this forum. And I have to think about all the thousands who have TOS and don't know about it. |
Cyn-Cyn
I agree with every thing you've posted here. I posted my "testing list" only because that's the topic here. And IF ONLY there WAS a BLOOD TEST that could say "positive - 80% neuro 20& vascular TOS 7 cm from the first rib!" Ha, ha, what a treat that would have been. I just had my 5th set of EMGs / soma nerve testing. They are going to do my lower body & legs because my left foot is "dead gone" and my right is going, and the rheumy said it's "idopathic" - they can't explain it - BUT, he said, it's obviously got some connection to the TOS situation as my body circulation and systems are "blocked" like Cyndy was saying. This man runs the UCLA disability in patient program and pain control program. He is world renown. So it gets confusing. But I went almost TWO years with no testing, and despite my medical / legal knowledge, because my hand ortho specialist just kept saying "overuse" and nothing more, I took to the internet, found you guys, and we ALL chipped in to brainstorm "my" test list. (It's not mine! :grouphug: ) Now I do notice some things about my surgery, so I'm going to post a new post. Love to you guys, and I totally agree with Better that finding a TOP DOC for TOS is job #1. I think I did talk about that in my post. But for someone out there like me, who is a neurogenic TOSer with no visible / discernible compressions and with RSD and supposedly whole body fibromyalgia - or according to Dr. B an unnamed rheumatological disease overlay, I push forward for testing just trying to make sure we are not overlooking an identifiable condition that may be mimicing the TOS or is along with the TOS. As far as legal stuff, when I heard that now we need those home or ability studies in addition to our doc's report - for a strong 100% case - I merely want to share that with everyone so that they can take it to their attorney or court and ask if it's appropriate for them also. I don't want anyone not to get the most fair outcome of any cases due to TOS. But it also doesn't mean that my word is correct! I could be wrong. It takes guts, and frankly more energy than I have, to stick my neck out and share what I've "heard" via the grapevine because then I am a target for a shoot-down - but the point is that we are ALL a TOS family, and I hope you'll forgive me if I ever have a wrong opinion. sorry to write so much, but I've been unable to talk / write without bad pain for many months now, so I'm enjoying coming out of this period!!! |
thanks Tam
Hi Tam,
glad to see you're able to type n share your info again missed having your insightful posts!:D Love and hugs, Victoria:hug: |
I'd like to add a test that they should come up with-
a test for pain levels! that will be proof of the pain that is caused by the "invisible" injuries. now that would be a big plus. for so many conditions. |
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