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New here- opinions please
Afternoon all- 25 y/o female from Tucson, AZ here. Was previously "softly" DX'd with TOS (venous and/or Arterial) in '08- had to stop all work up due to relocating and a subsequent divorce. I am now remarried and moved to Tucson AZ, where the medical hunt has begun again. Recently saw a vascular doc in town- and said without a doubt that it is TOS- again, either Venus or arterial, or both. Having a doppler on Wed first thing am and compare those results to the doppler from '08. Can't imagine it will be good, considering my symptoms have gotten considerably worse in the last 2.5 years! Which leads me to my symptoms- which seemed to perplex some Drs along the way. Some background:
My left arm- from finger tips to right above the elbow- turns a deep red/maroon color that lasts anywhere from 3-10 seconds. Sensation/temp change is also associated with the color change, as well as swelling of hand/wrist/fingers. After some "shaking" out of the hand and arm, the color will return to normal. I also have noticed with greater frequency that my veins from right above the left pec/chest area across my left shoulder and down my arm- those veins have become more and more noticeable in conjunction with my hand/arm turning red, swelling, temp change, ect. I know that many people describe a high incidence of pain in the affected limb- I suppose I may be a lucky one, or else I have had symptoms so long that I have become very tolerant of it. I DO however, have what I can best describe as a "Tourniquet" feeling around my left bicep/triceps area. It can begin in the middle of the night, it can have an onset while I'm in the car, at any time really. The pain can last from half an hour to an entire day! Not taking any pain meds, just Advil prn. My left arm- which the measurements are fairly the same to my dominant right hand in terms of muscle tone, gets heavy and tired easily- and becomes almost a dead weight after use of simple tasks- like blow-drying my hair! My symptoms began in late 07/early 08. Started a small TOS workup that quickly ended for the reasons stated above. The most notable test that I did complete, however was the doppler that CLEARLY showed a complete lack of pulse in left hand associated with TOS maneuvers/positions. Also, had xrays done- negative for cervical rib. Had a Neuro workup- Neg EMG/NCS, neg ulnar nerve damage, neg brain MRI, ect. Back then, symptoms came around 2-3times a week- so it is was fairly easy to not get too concerned. NOW- I have returning symptoms every single day anywhere from 3-4 times a day, up to lasting an entire day or weekend (as happened once or twice) where symptoms were coming and going constantly- THAT is when I got worried and have been back in the medical hunt since! Also, I should note- my right arm/hand has been exhibiting the same behavior as my "early" symptoms of my left hand back in 07/08. Time to get on the ball... My questions- does anyone here also have their arm/hand turn RED instead of what is characteristically described as blue or pale white??? My current and new vascular Dr here in Tucson seems hesitant on ordering new tests- is this common?? I know, based on my doppler from 08 most likely proves everything, and based on the in-office maneuvers that obliterate my pulse(s) <right one as well, but we are focusing on the left>> the Dr feels that further testing isn't necessary. What are your thoughts/opinions on this?? Any and all help is appreciated, Jocelyn |
Hi,
Do the veins and /or arteries them selves seem to swell when the arm gets red like that? I would say the arteries are getting blocked /pooling?? and that's why it gets so red instead of the pale white of loss of pulse. just guessing a really good PT should be able to pin it down. Or possible RSD, if skin gets blotchy, and mottled and hyper sensitive to touch and such.:confused: Mine only go whitish when raised and then reddish as the blood flow returns when they are lowered. Do you have an idea of how your TOS came about? RSI , fall or accident, car accident/whiplash..etc? ""Tourniquet" feeling around my left bicep/triceps area" yes quite a few have mentioned that, mine rarely flares up anymore. Testing - I think they are hesitant to rx many tests when pain & symptoms are mild, moderate and intermittent . (no rx pain meds being used.) Which I feel is a good thing for you, if you're sure there are no c spine causes for the pain /sx and the other basic possibles are ruled out -then proper PT with advanced therapists or an expert chiropractor along with self care and posture awareness, you should be able to turn it around. It isn't a quickie fix , it will still take time and learning to read your body. Some of my sx & pain levels were somewhat similar, I was taking advil/motrin at the time, although it was over the suggested dosages when i was still trying to stay at work. (3 months = too long to take it:() I only used vicodin a few times during the severe spasms to get some sleep. Once off work i stopped that stuff - as I read it does inhibit cellular healing after a time and it had affected my tummy/gut a bit. All in all it took me about 2.5 yrs to get it under control. I still go to a good chiro fairly regularly - if Ii miss more than 2 months I can begin to feel it all over. |
Welcome to the group, Jocelyn. I have bilateral neuro/arterial/venous TOS so I can speak from experience about symptoms and testing. Both of my arms from about mid-bicep down are reddish and I have distended forearm and hand veins. This is likely because of poor venous return at the compressed subclavian vein. If i am not mistaken, bluish discoloration has more to do with arterial problems (not enough blood getting to the arm and hand). I know the "white sign" is arterial as well. It sounds like the redness + visible veins in the chest, shoulder, and upper arm (I have those, too) are primarily venous symptoms.
It seems like a waste to order another arterial doppler test (the one where they put the probe on your fingertips to measure your pulse in different positions), although you should INSIST on getting a venous doppler test to check your axillary and subclavian veins on both sides. I have had specialized ultrasounds that look at the veins with my arm in different positions to see the effect on my blood flow. They can also check for any evidence of clots in a venous ultrasound, which is the most serious complication of venous TOS. It is really important that you get this checked out. |
Thanks for the replies and warm welcome!!
To answer the questions: Yes, the veins/arteries do seem engorged at the same time that my arm/hand become a deep/maroon red and swells slightly. I say slightly, bc I wear a size 5.5 wedding ring and have a small wrist watch- but I have to take each off when my arm/hand is very symptomatic multiple times in a row. I do not have Raynaud's phenomenon, or RSD as I have lived in the SW for nearly ten years now- extreme hot temps and mild low temps- along with the fact that the color isn't blotchy, mottled or affected by stress. I would take that DX, any day tho, over TOS!! :( My arm/hand turns a deep red mostly when my arm is by my side while standing. However, I am noticing more and more that recently (past 3 mos) that my arm/hand will change to this color while sitting on a chair, on the couch and laying in bed. I'm not sure how this could have developed- I do know that I noticed symptoms for the very first time when I was taking a driving test for my motorcycle license in 07. My ring and pinky finger on the left hand seemed numb- but not tingling. That afternoon my arm was aching badly. Symptoms went away by bedtime and I sort of blew it off, I guess you could say. I had a move and new house to worry about- sad to say that my numb fingers were at the bottom of my worry list. :o Later in the year and beginning of 08- the symptoms happened (numb fingers, dead arm feeling, tightness of the arm or touriquet feeling AND color change) became more frequent to 2-3 even 4 times a week. Thats when I began seeing a dr. I had a full neuro workup- neg for any findings. I passed the EMG/ncs with flying colors. Remember- now we are at every single day, mult times a day with symptoms. grrrr. :rolleyes: When I was younger, I had many adventure accidents- fell out of trees, off the roof, hit with a car (low speed, but I fell and had soreness and scrapes.) I had one rearend MVA with neg injuries (sore, stiff neck. I was the driver, think where my seatbelt is.) and I was a passanger in another MVA in 02 that destroyed the car- driver lost control of car at approx 70 MPH and we slammed the drivers side of car into retaining wall, wrapping front nose of car around edge of retaining wall. The drivers seatbelt was severed and she sad half in my lap and half on the center consol. She was worse off than I (tho not too bad considering) and I suffered all superficial injuries on my left side- scrapes, hit my head on left side, left side soreness, and neck of course sore as well. If I would pin point anything at all, it would be this accident, the rear-end accident or my falling down the stairs all the time. :eek: I have attended a very good PT program for a total of ten months with a TOS diagnosis- with no evail. Pt helped to strengthen where it needed to, but ultimately worsened my arm/hands' symptoms!! I do have the white hands when raising hands in the various TOS testing positions, loss of sensations, feels like temp change and so on. Thank you Pixified for suggesting that I have a venous doppler test completed. When I have my apnt tomorrow, I will ask the vascular DR for this. I do feel that although my symptoms are much worse on the left side, I feel that because my right arm/hand is becoming symptomatic, that BOTH sides need to be looked at- if only to determine status and baseline of where I am in right now. What if there is damage? This is a concern for me. When you have had this venous doppler completed- did they move your arm(s) around in different positions? I would hope they would do this. Are there any other tests that are worth the while to determine the extent of damage to veins/arteries, or to at least see how badly the blood flow is restricted and how (inbound blood or out going blood)??? :confused: Appreciate it folks!! Really helps me to feel most comfortable about this condition. BTW- it seems (after trolling this board-) that not too many ppl have vascular TOS- is this really correct?? Thanks again, Jocelyn |
I think one of the posts in the useful sticky thread breaks down the % of occurrence for neuro, vascular and such.
I can't recall what they are off hand. With vascular it would need to be sorted out between venous vs arterial - supposedly venous is more likely to produce possible clots, due to the blood pooling and just not getting circulated back to oxygenate. That article doesn't really account for mild /moderate RSI/TOS types that may be due to adhesions or sticky fascia. Those can be a mix of sx depending on where & what is being affected = "stuck" I don't know how you feel about chiropractic?? But it may be something to look into, getting some evaluations by a few expert DCs. And some that do the upper cervical (atlas axis) adjusting also, due to all the falls and accidents. see this for more info - http://www.upcspine.com/self.htm www.upcspine.com If there are misalignments, those really should be addressed before trying to more forward. It's like trying to build a house on a crooked or broken foundation. And unfortunately most MDs generally will not advise or suggest any DC care..so it's is up to us to sort it all out. But I had the best results from a very good chiro, that uses PT type modalities as well as adjustments. Out of a total of about 8 PTs that treated me - I found only 2 that were exceptionally good. So for PTs or DCs you have to search out the really good ones with advanced training. Don't settle for a standard PT plan that they do for almost everyone that walks in the door with neck/arm pain. |
The breakdown is roughly 90-95% neuro, 5% venous, 1-2% arterial. Although I think these percentages are based on the definitions of venous and arterial TOS meaning those who have had a clot. You can have venous and arterial symptoms without a doctor giving you that official diagnosis.
One thing to note about the EMG: I have learned from docs and reading others' experiences that many people with neuro TOS actually have a normal EMG. I have had multiple venous doppler tests. The standard test is looking at your whole chest/arm area from collarbone to wrist to see if there are any clots. The TOS doppler test is where the tech places a transducer over your subclavian vein (and sometimes axillary as well) and puts your arms in different positions to see if and in what positions you have diminished blood flow. From what I understand, only vascular surgeons who really specialize in TOS order this type of study. I would ask your doc about performing both. As far as other tests, ultrasounds are really the standard right now. There are more invasive tests (venograms for veins and angiograms for arteries) and tests with high radiation (CT scans) but those really only come into play if the ultrasound shows something that needs further investigation. One thing you could ask about is getting a C-Spine x-ray that can show if you have any cervical ribs or abnormalities of the first rib. |
JoMar, I will def look into the possibility of seeing a DC here in the Tucson area- will have a lot of research to do, but it seems I have a lot of time on my hands lately (have had a persistant cold/cough for more than a week now.. delightful.) :confused:
Pix- I will ask to Dr tmrw if he can put in the auth for the ultrasounds/doppler that you've suggested. As far as EMG studies go, I am not surprised that many have a normal EMG. In fact, I have been DX'd with a 100% subluxed (dislocated) ulnar nerve in my left elbow along with snapping triceps syndrome. If you look up the symtoms and definition- this DX describes most of my feelings associated with my hand. However, I say most, not all. It is completely clear to me that there is a vascular compression on the left side as well, not to mention the right side (with a 60% subluxed ulnar nerve as well.) But I am in the hunt to find which one needs attention first. I'm leading towards the venous/arterial issue. :mad: :rolleyes: I have had xrays of the chest/c spine, ect. No cervical ribs or defects in other structures. As far as vascular studies go- I haven't had anything done other than the doppler from 08 and the one that I will have completed tomorrow. I am anxious, though I don't know that I need to be, to ask the DR tomorrow for additional studies (like the ones you've suggested.) The Dr last week seemed to be incredibly sure of my symptoms, after a hands on exam and my history to say what was going on here, and no matter what- surgery will fix it!! Does anyone have any information on how not to doubt a DRs findings but to have them order another test to make you (the patient) feel more comfortable that all the "T"s have been crossed?? Thanks in advance, :hug: Jocelyn |
Have an update
Thank you for all the kind words and recomendations. Last week I went in, with my husband, and had a very lengthy TOS doppler/ultrasound done on both arms. In part to rule out a DVT- thankfully I do not have one. However, I do have severe compression of my subclavian artery on my left side and moderate compression on the right side. Not much of a surprise to me, considering my symptoms. When my left arm raises to 70 degrees, my pulse reduces by more than half. At 90 degrees, or just about anything above my heart as it turns out, I have ZERO blood flow out of my artery, though my subclavian vein remains open. On my right side, (where symptoms have been increasing slightly over the last half year- year) I have the exact same condition, though not as advanced. Seems as if my right arm will have to be looked into in the future as symtoms become worse.
As far as the left and far worse side, it appears that I am running out of time. Surgery to decompress the area is necessary. I have done plenty of research (as I've had symptoms for over three years now) and I have looked into posts on this forum regarding the surgery as well. I am in the process of making decisions and trying to find the best solutions. I've been told to limit all overhead activities with my left arm and to stop any type of weight training- even light hearted push ups. HA. Ugh. :( Although I do not have a blood clot, I have an extreme risk to developing one based on how badly and quickly my artery is closed off. I refuse to be placed on blood thinnners as a "just in case" measure, so limiting activity is just what I will have to do. And explore surgery. Meanwhile, the entire DEPt is amazed that I haven't created a clot yet or that the artery has torn. Grrrrrreat. So I am to come in/call in at any point when my symptoms are returning in a form that is not alleviated in precaution to look for a clot. Thank you all, Jocelyn |
email me
have a couple of TOSers looking for a TOS professional in Arizona. Who has been following you up and testing? You can email/PM me if you choose not to say publicly
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:) Sure you bet! I have been seeing Dr Michael Lavor from Saguaro Surgical here in Tucson, AZ. Dr Mordechai F. Twena was my Dr in 2008 whom is as highly regarded as Dr Lavor.
I would advise against seeing Dr John Hughes from UMC- he firmly believes that TOS is a state of mind, and a "fictitious" DX. :rolleyes: He sent me away from his office saying that I in no way have a vascular disorder (without a physical exam or reading my notes/chart- and that I may be having an allergic reaction to my lotion!! Regarding that my left hand/arm turns a deep red.. amazing. :mad: True story. Jocelyn |
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