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Vascular/Arterial Testing
What type of testing has everyone had who has vascular and or arterial TOS?
Venogram? Doppler? |
Hi,
I had a venogram. But it was in Denver with Dr. Brantigan. I had one in my home town but then he wanted one done HIS WAY. He has designed a protocol for what he needs in the test with the radiologists there. One "fill-in" radiologist who hadn't worked with him before did it and proclaimed I didn't have TOS! Well.......I had to have another test done the next day the "right way" with one of the regular radiologists and it clearly showed up that I had complete arterial and venous blockage in certain positions! So make sure they know how to test for TOS! |
I have had one
I have had a veinogram and a doppler ultrasound of the brachial plexus vessels.. I had no blood flow on the doppler the guy had to go out of the room for help he had never seen it before!!!!:eek:
The veinogram clinched the surgery for me....it showed over a 90% occlucion on the right side subclavian vein so it was why I had my surgery to correct this issue....I think it is still there as all my symptoms are back.........:mad: anyhow good valid test to see about your blood flow, but make sure they put you in provocative positions...ie the superman test...arms overhead like you are flying.....and arm in weird positions....the ones that cause you problems... best of luck love and hugs, Victoria |
I had 3d cat scan in Denver that showed artery and venous TOS.
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Hi,
Check this out, for subclavicle artery compression. http://www.circ.ahajournals.org/cgi/...ll/112/17/e280 Also vertebral artery that never seems to come up. http://www.tos-syndrome.com/newpage12.htm I hope you don't have this vascular crap going on. My goodness you have been through so much. Hugs, Roz |
I have had two doppler ultrasounds...the first gave indication of TOS as per the report. The second, the woman who did it went...'woah that was weird, the blood flow stopped and then just started again'.
Gibbrn is right - unless they put your arms in those nasty positions the tests can be all over the place |
vertebral artery
those were the weirdest sx! - I had all of them during my worst times. I think in my case the tightness and spasms were pulling on the c spine just enough to cause those problems. As we {PT, chiro & I} got rid of the tightness and spasms the vertebral artery sx resolved too. |
Jo how long did it take for the spasms to resolve or lessen?
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I missed this - sorry.
it was july when we did the concrete slab work- didn't really hit me bad until the 3rd day of it. we had 2 more squares {6x12} to finish still - uugghh. totally did me in- but hubby wanted to finish it ! Git er Done LOL About 2 weeks later at the county fair was when I happened upon the chiro & massage booth. I signed up for appts right then since he was so helpful that first time. I didn't even know what spasms were then - just knew I was locked up and hurting. it got much better after just a few visits - he did the deep tissue /nimmo stuff , adjustments, ultrasound & about 2 weeks later was when they got the INF stim - that really helped too. Probably 2 months for the worst to resolve - But I wasn't working or doing much at all during that time- just Sharon Butlers stretches, self TrP and lots of rest too. - I was still was having the choking tight neck feelings and very limited arm use. Every time I did use my hands i would get really tight in my forearms and neck muscles. So from mid September 04 til February 05 I was in that condition -til i found the adv PT guy that did the rib mobilization thing. After that amazing fix I told the chiro and he followed up with checking it and adjusting if needed. |
I just got back the written report from MRI/MRV/MRA at PremiereScan in San Jose. 4 pages worth, and very impressive. He was recommended to me by both Dr. Ellis in Berkeley and Dr. Avery in San Francisco. Finally I got at least some insurance coverage for it. They're redoing their website and only have a little bit of the TOS scan info online.
I've been dealing with TOS since 1992...probably seen more than 30 different Drs. over the past 15 years. Drs. Ellis and Avery are the best so far! Especially Dr. Avery, he really took the time to explain to me what was probably happening and my non-surgical alternatives. marabunta, Auburn, CA |
marabunta,
Re: MRA/MRV/MRI test....... Hi Just wondering, What were the results? did Dr. Avery tell what the narrowing was at the clavicle ( the mm ) and what did he recommend? I'm under his care but haven't decided what to yet..... Thanks for your help, Ann |
Ann,
I haven't seen Dr. Avery yet for a follow-up, my Primary, by chance, is pretty well-versed in TOS. I had PremiereScan fax the report directly to me and I'm interpreting it as best I can on my own before I go talk to the Docs. This is a VERY detailed mapping of the brachial plexus, specific to diagnosing the "Real" cause for TOS symptoms. Its a good 3 full pages, with 10:eek: listed impressions. My wife is an RN, so she's able to help with all the anatomical terms. Still, I bought a "Color Atlas of Human Anatomy" for $20 at Barnes & Noble. To answer your question, on the right it narrows to a minimum of 11mm and on the left to a minimum of 14. I have no idea what normal is? Dr. W's impressions include numerous anomolies in both scalene triangles, many appear to be genetic and others have occurred over time. He says no incidence of Cervical ribs, just mild to moderately enlargements of both C7 transverse processes. I'm now convinced different DRs have different definitions of cervical ribs, because I've had them pointed out to me on an x-ray more than once and had one vascular surgeon ready to cut 'em out after a 20 second review of my x-ray. Most disturbing is an anomalous aortic arch, with several anomolies including a left dorsal scapular artery piercing the middle scalene muscle. Haven't studied enough to know what that means, it looks normal on the anatomy charts. An additional right transverse cervical artery coursing anterior to the anterior scalene. More stuff too... Moderate right and mild left extrinsic compression of subclavian veins on hyperabduction. I think I'm going to send it to Dr. Sanders in Denver,...hoping to evaluate for the "pectoralis minor tenotomy" as a stopgap measure before getting scalenectomies, etc. If I can hold out for another year or so my disability insurance gets much better. As always, just taking it day-by-day at the moment and trying to stay upbeat and not let the pain, etc. get to me. The chest pain worries me more than anything, its a recent development, comes along with flares, and scares me to no end. I've had full heart workups recently, and EKGs while it was happening and I could barely speak, and everything looked normal. But us TOSers know about Drs telling us everthing looks normal:( :( :( Marabunta No. California. |
good info, guys
keep the information and sharing coming...
I hear Avery has lessened his practice. Is it true? Avery, Saunders, Brantigan, Annest, Filler.... Can we get them all in a room to agreee to disagreee with the best treatment. Then we really can't since everyone's condition is different and they all have a different take on the surgery procedures |
Thanks
This is awesome! Thank you for sharing this with us. There is hope out there yet for people to be able to get the answers they need.
Peggy |
marabunta,
Dr. Avery said that normal was 15-20mm, when he gave my report back he said mine were 6mm on the right and 7mm on left.....that explains why he wanted to do surgery asap....you might get lucky and be sent to Peter Edglowfor therapy, if you follow his program you will feel better, I've been in his program for about 6 months, but because of of small my narrowing is the therapy will never resolve my problem.....I have spoken to Dr. Sanders and he's thinks I shoud try the Pec procedure first ( of course, that's what he's selling ). And of course that's what I'll do before the other surgery. Good luck...I too am happy to have found Dr. Avery, he's very detailed and I do love details...... Ann |
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Medical imaging capability is growing exponentially, and I think "exploratory" surgery will become a relic of the past in the near future. Hopefully we'll rarely hear "We won't know until we get in there." I am not in the industry, but I would highly advise anyone contemplating major surgery in an area as complex as the brachial plexus, get the best scans that you can, even if it means travelling for the scan. It will provide your surgeon with essential information. If there are any anomalies of nerve or vascular locations, your surgeon will know where to look to visualize these and avoid complications. |
marabunta,
Just to give you a heads up....That amazing test we both had done that gave sooo much info is the same test that Dr. Sanders will tell you he doesn't put much merit into...In my last conversation with him, I brought up the test and what did he think.....and he said he felt they were too complicated and too difficult to read...Just thought you might want to know before you asked him to read it....Also I heard through this site that Dr. Avery is going to be doing the Pec procedure soon......Yippee for us. no traveling Ann |
That's interesting because I found it to be detailed yet concise. That's the reason, on Dr Avery's advice, I waited for Dr. W to be available instead of traveling elsewhere. I had heard that some of these specialized imaging reports can go on forever to the point of being ignored because it takes too long to read and comprehend them...but I really would have a hard time believing that's the case with this report.
TOS is such a complex animal, with symptoms for many coming from secondary disorders and not the original previously undiagnosed or symptomatic disorder. For someone as experienced as Dr. Sanders, I wouldn't think the reports would be entirely necessary, and they've worked for so long without them. But in the case of multiple anatomical anomolies, which seem to be not so anomolous in TOSers, I think it pays to know what to expect and what they'll find before they go in there. |
Marabunta & Annhere
Did I miss the specific tests you mention?
Which tests did you have? |
O, Wait
You mean the NEO Vista 3D Imaging? So, it's like Dr. Collins' here down at UCLA |
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A quick note...
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The examination has several technical differences from Dr. Collins' excellent test in LA. The interpretation of the test is focused more on the anatomy that is described in decades of surgical literature. I have been told by a very well-respected prestigious university that my report on each patient is "like I read the surgical report". In other words, the focus of my examination addresses the presence or absence of all the anomalies the surgeons would look for BEFORE they go in and do any procedure. The purposes are: 1. To prevent surgery on those patients with a syndrome like TOS but without correctable anatomic or pathologic problems. Some studies in the medical literature have demonstrated that up to 30% of TOS patients do not have anatomic anomalies of the scalene muscles. Why do surgery on these patients? 2. To prepare the surgeon for what he or she might expect before they go in. There are numerous vascular anomalies as well, with arteries in a very superficial location that the surgeon would want to avoid. 3. To provide objective evidence of pathology in TOS patients struggling to convince their physicians or insurers to take the symptoms of TOS seriously 4. To enable the medical community to correlate the known anatomic anomalies in any single patient with the patient's symptoms. This will hopefully allow docs in the future to better understand why some clinical signs and symptoms occur in some patients and not in others, which patients do better with surgery and which do better with PT, and to allow minimal or less invasive surgery in those patients with certain minor anomalies, rather than a rib resection or more major procedure. While some of these may not be at their full potential right now, the design of the examination is based on hundreds of papers in the literature, and on the experience I have with hundreds of patients to date. I am optimistic that i can continue to contribute to understanding of this condition. I visited with Dr. Sanders, a very nice man, and observed surgery, clinical examination of patients, and a pec minor block. I got to spend about fifteen minutes demonstrating some of this new MRI to Dr. Sanders, and he asked me to teach him how to read the examination. I think it is admirable for any physician to want to learn new things, but radiologists spend five years learning in residency and more years in fellowship, which makes it nearly impossible for a non-radiologist to learn ANY MRI, much less a new technique with up to a thousand images, in fifteen minutes. I CAN tell you that there are several physicians in the SF Bay area that use my examination on a regular basis, and I consult with them regularly to try to help them learn little bits over months to years. So Dr. Sanders is likely unable to read this new test, but that does not in any way mean it is too complex. It HAS to be complex because TOS is by nature so complex. I think Dr. Sanders is just setting his personal bar rather high, high enough that I wouldn't expect anyone, even as knowledgable as Dr. Sanders, to be able to meet it. Bear in mind that there are numerous papers in peer-reviewed radiology journals that are widely-accepted by expert radiologists. I think that expert opinion carries a lot of credibility. Since we all know how complex TOS is, we should all expect that the MRI would be complex, as well. I have worked very hard over several years to be comprehensive, yet concise and and organized in my reports. The website explaining more about this test will be up within a week. I welcome any questions people might have about the examination, although I cannot answer specific medical questions. Have a great Sunday! |
Dr. Brantigan along with a radiologist at PSl has come up with a CT, (I think) that will show the pec minor if it is part of the cause. Sorry I can't recall what it is but you can call his office and ask.
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SAWXRAY......
Thanks so much for the information....And for the record I feel lucky to have had this image test done...( not many people have had it yet)...I pushed my doctor to order it because I read it would give me the most information and allow to make the best choice. Peter Edglow will tell his patients...." If you really want to know what's going on in there get this test"..... This test allowed Dr. Avery to determine that I needed surgery becasue your scan/image told him (clearly) how small my narrowings were.... And that's the best part.....no guessing !!! Thanks again for helping and keeping us TOS's informed, sometimes it get's a little bumpy.... Ann |
I would like to learn more about this test, and where it is available. What was it like? Do a lot of doctors know about it? Thanks
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Thank you for the comments
Thank you!
I am glad to contribute what I can, and certainly continue to learn the needs and concerns of those here. Many here know more than a lot of docs, and that kind of hard-working cooperative attitude is very inspiring. TOS is a big part of my life now, fortunately from the viewpoint of a caregiver rather than as a patient. I want to help make a difference, and am now luckily involved with some very good people like Dr. Avery, and Peter Edgelow. Regards |
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Just my layman opinion... Marabunta, N. California |
Re: Pec minor
Please also bear in mind that the balance of muscles around the shoulder girdle, ie the tension of the anterior vs posterior muscles, affects the position of the scapula and the clavicle, which may narrow the costoclavicular interval (the space between the rib and the clavicle). So relaxing the pec minor, which can be done in a number of ways, may widen the space and relieve compression on the brachial plexus.
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hmmmmmm
my symptoms have all come back since my surgery in July 2005...had my
MRI of brachial plexus today....hope scar tissue is not the culpret.....fingers crossed as all my sx are the same as pre surgery!!!!!!!!!!!!!!!!!!:eek: :eek: :eek: :eek: :eek: :eek: :eek: :eek: :eek: :eek::eek: I guess you get the point here...lol take care all love and hugs to all:grouphug: Victoria (man can't even spell my own name right....guess it's bed time...or this damn arm isn't working properly...... hope it is the former!!):p |
Re: Pec Minor involvement.
Bettertoser,
I like differing opinions. It helps us figure out the right choice for each of us. I've been seeing osteopaths the past few years so that's probably where my train of thought is now coming from. As a long-time TOSer, I know that my cervical ribs(or elongations of the C7 transverse processes, depending on who's reading my scans!) have, over time contributed to basically trashing my scalenes as well as my cervical spine. In my case, I think focusing on the cause, aka a Cervical rib resection, would do me almost no good whatsover because of all the downstream damage that's been done all my life. It's gone from a simple anatomical anomoly to an infinitely more complex one. I tell people it's like being an alcoholic all your life and scarring up your liver. Just because you become sober and take the alcohol away doesn't mean your liver(and the rest of your body) is suddenly OK. It's the same with TOS. Not quite the right analogy, but like sawxray said above, its about a balance of tension. That's what got me on the osteopathic tangent above. You may also want more than one read of a scan since it seems there's differing levels of knowledge of the balance of all those muscles in there. |
Hi Everyone,
Will anyone of these tests show a mircocirculation problem? Hugs, Roz |
Victoria - let us know what you find out with your MRI??
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Everyone has responded with great effort here.
Hmmm...so many responses I probably should and don't want to step on any toes here. I too feel, the same as some of the others... You ain't cutting on me no more without damn good reason just to cut. I want to see the facts like Dr. Agnew in Santa Barbara showed us which he could read Dr. Collins' films and compare. I want a venogram and a doppler and whatever else it takes to pin point the eact compression. Only then if I am in harms way due to arterial of venous compressions after all these years I'll consider. But, who, which surgeon? Again, not to cut just to cut. I don't see the rib resections have helped much with the TOSers that post here and the pec minor being ripped out and.... Being decompressed is the best way to go and learn to live with the pain as we all do anyways along with daily drugs and therapy. Until the docs come to a resolution of helping, not hurting our chronic pain and pocket book. |
Cyn,
Here is my list of tests as far as I know for TOS. I have gotten all of them but the Collins' or Filler imaging test. My fear has been that if I didn't get one of the tests done, there might have been another problem other than TOS. None of my tests showed any arterial (vein, vascular) proof, but we've all seen me turn bright red, blow up and swell, and not be able to move my fingers, which to me, seems like there are physical blockages besides the nerve abnormalities. But again, didn't show up on the veinograms, etc. Some of my results have been conflicting. I've had 5 EMGs, and each doctor does them a little differently and comes up with slightly different conclusions. Thank God they almost all agreed at least on the TOS (slowing of the nerves in particular.) It is important to get and keep all of your test reports / records, so that IF you have any repeated, you yourself can read and see if there is any difference in the numbers or narrative by the testor. I found these things myself - and showed the doctors how I was getting worse. They did not read my old tests themselves - lazy. On your blood tests, always go over them with your private, general medical doctor, because as you know, the drug "Lyrica" took my blood sugar from a normal 80, to an outrageous 455. (Severe level of sugar.) None of the work comp docs even noted it. There is also something I am learning about called a "Home Study" (?) which we need to show the court how disabled we are. We should all ask our attorneys to have one set up. I believe there is a center in Riverside, where they test abilities and rate them. I have been told that our medical records are now "not enough to show 100% disability." So this is something new. Also, the new law has made it so tough, that the attorneys are relying on a good psych report - so it is imperative that you get a "Final P&S Psych Report" from YOUR psych doctor and make sure your PTP reviews (reviews and incorporates its findings in his own report to make it evidence.) This adds value for all of the emotional problems we now have as a result of the chronic pain and loss of pleasure in our lives, as well as loss of career, family, travel, etc. 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. 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. 10. There is also something called a "Home Study" (in CA, outside I think they are called functional tests) which we need to show the court how disabled we are. We should all ask our attorneys to have one set up. I believe there is a center in Riverside, where they test abilities and rate them. I have been told that our medical records are now "not enough to show 100% disability." So this is something new for CA. 11. Also, the new law has made it so tough to get permanent disability in a reasonable amount, (the AMA guidelines are not working fairly), that the attorneys are relying on a good psych report to include and add disability - so it is imperative that you get a "Final P&S Psych Report" from YOUR psych doctor and make sure your PTP reviews (reviews and incorporates its findings in his own report to make it evidence.) This adds value for all of the emotional problems we now have as a result of the chronic pain and loss of pleasure in our lives, as well as loss of career, family, travel, etc. 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. |
another doppler
Ocelyn, I had another arterial doppler this week. This was more extensive than the first 1 I had done a year ago. The 1 last year was just to help diagnose if I had TOS. This 1 checked all my arteries in upper extremities including subclavian arteries. I expected my right side to show compression, as I've had TOS diagnosis for almost a year now. The surprise was that it also showed some compression in my left subclavian artery also. I thought that most of the vascular TOS was usually 1 sided, except in the case of cervical ribs? I do not have those. My left side so far shows no symptoms except shoulder pain which is the same as the right side that we attribute to bilateral shoulder impingement. My right side is horrid to say the least, burning arm, ribs, hand, jabbing pains in neck, hand and armpit. Ulnar nerve numb for a year now. Hope this helps someone. ihtos
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I would suggest you start doing stretching, posture work and TOS type pt for the left side now - if you haven't already been doing it -before it spreads or does start to show more sx. Many have had it spred due to overuse of the other arm/hand plus just the imbalance of the use of the body. If you change postures due to pain both sides will tend to follow. |
MRA/MRV Today
My MRV is scheduled today, guys.
Hope it is nothing like the CT scans with contrast when I was going through chemo. It was only a minute CT scan and burned as in went into the body and took your breath away, literally. Scary "ish" Pray the MRV shows the exact issue with the arteries and veins. And agress with Collins'. Questions, what would the "doppler" show differently? Are there more than one type of dopplers for us nerve/vein/arterial TOSers? |
bumping for new member
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