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R there any tests to diagnose TOS for sure? Please help, i'm so confused about tos.
I was diagnosed with tos after a year of being diagnosed with 5 other things first.
The doctor who diagnosed me is a peripheral nerve surgeon/orthopedic surgeon. He did NO diagnostic tests other than lift your arm, turn your head, feel my pulse. He says there are NO other diagnostic tests, and the only way I will get better is for him to cut into me once & release the pinched nerve, and than possibly 2 other surgeries afterwards (maybe on my elbow, than my hand if need be) Please send me any info on diagnostic tests I can try, and what type of doctor I need to see. I am in New Jersey, so if your local any names of doctors you recommend would be great too. The only way I have found to keep my pain level relatively down is therapeutic massage & to not use my arm, and no lifting. This surgeon is trying to force me back to my (very physical job) which I am not physically able to do, to force me to choose the surgery. It's workmans comp, I have a lawyer, but I really need help on what to do.:confused: |
Hi there are other tests- but they are expensive - but don't agree to a surgery just on the basis of what that one dr says.
DOCTORS and PT List for TOS- http://neurotalk.psychcentral.com/showthread.php?t=135 Our Useful Links - Websites, Articles & Polls- http://neurotalk.psychcentral.com/showthread.php?t=84 thread with testing info- http://neurotalk.psychcentral.com/sh...ht=TOS+testing |
Hi sweettheresa,
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Hi Sweettheresa,
First of all, DO NOT let ANY surgeon pressure you into surgery without a second opinion (except for the rare case of an emergency...does not sound like that is your situation). Many here will confirm that diagnosis of TOS is a matter if exclusion of other conditions which are mimicked by TOS. Often, we have gone through many docs and varying opinions and lots of time before we really know what is going on. First let me say, do not let anyone perform surgery on your elbow or wrist until to source of the impingment is determined. My Rheumatologist tried a simple test to determine if I needed a release below my shoulder. 1.) I was given a shot of Cortisone in my wrist....no relief. 2.) I was given a shot of Cortisone, a few weeks later, in my shoulder.RELIEF!! This logical proceedure vividly demonstrated that a Carpal Tunnel release would have been a waste of time and could cause more harm than good. I have been seen my many specialists, including Johns Hopkins. There is a new TOS specialist there now, a woman, who may be a respected choice for a second opinion, (and Surgery) if necessary. I was seen by two male Neurosurgeons, whom I would not personally choose for reasons I will not go into on the forum. HOWEVER, my personal favorite is Dr. Michele Cerino, (A Male). He is a very through, kind, experienced and trustworthy Thoracic Surgeon. He practices a Harbor Hospital in Baltimore. He is listed in the forum registry. He will NOT recommened surgery unless it is a good idea for YOU. You will probably be expected to go through about 3 months of specialized physical therapy, before surgery would even be discussed. This is standard proceedure unless you have cervical ribs or extreme circulation issues. Dr. Cerino has a lab where specialized tests are available such as ultrasound on your shoulder/neck area, circulation studies, with blood pressure cuffs and special moniters, and so on. This determines if you have arterial or venous TOS. You will be sent for an MRI, and probably an X-Ray. He will refer you to a Rheumatologist experienced in TOS, this will rule out other disorders such as MS, etc. Also, fibormyalgia and other soft-tissues problems can be determined. He will refer you to a Physiatrist (Pain Doc), for tests such as EMG, SSEP, or other test that will determine if you have Carpal Tunnel, Cubital Tunnel, etc. These tests are designed to determine if you have neurogenic TOS and to what degree. Sometimes these tests do not show much, however mine were severely positive. You will be evaluated for depression. These Specialists know how to deal with WC, Social Security and so on. This is a comprehensive team approach with physicians who know what they are doing and will NOT just force you to have surgery, if that is not in your best interest. If you cannot be seen by Dr. Cerino, he may be able to refer you to other speicialists in your area. Many other members of the forum will have advice and ideas for you. Today is just slow because of the holiday weekend. Feel free to PM me if you have any quesetions. Try not to panic...there IS help out there. Also, many ins. companies will not pay for surgery without a 2nd opinion. There may be a few things I have missed, but these are the biggies. I just want you to know, there is appropriate help out there. This is difficult, but you will be alright. One thing I haven't mentioned: many forum members believe, or have been told, that surgery should not be delayed. BUT in my case, I was told by EVERY TOS surgeon, that it did not matter when I had surgery. If I had it done today, or ten years from now, the outcome would be the same. SO, be sure that question is cleared up. It is best to give yourself as much time as possible to make a desicion regarding a complicated surgery such as this. Unless you have something like cervical ribs, you should not be rushed. Many TOS patients live a reasonable life (this may NOT include working) with proper medication. I have been told that surgery 'might' help with pain temporarily, but surgery would NOT change the status of my disability. Just food for thought. No matter what, you will be OK. Life changes for all of us. With TOS, change is individual and varies widely in degree. So please tell your Surgeon that you need a second opinion. If he thinks you can go back to work for even one day, they you are probably not experiencing and emergency. :hug: Anne |
Sweettheresa,
I also live in NJ. I have bilateral TOS and was diagnosed by Dr. Pertchik a neurologist in Tinton Falls, NJ (Monmouth County). He is a good diagnostician and is friendly. Good luck. Jeanne |
Sweettheresa,
welcome, and i'm sorry for what you're going throught right now. When I finally got to my Pain Mgmt Doc specialzing in Neurology, he told me not to let ANYone cut on me without 1). talking to him again, and 2). getting 2 other opinions. That being said, tests for TOS can be inconclusive, and even get different results at different times! I had EMG's show different results not 2 weeks apart. I hope you are able to sort this out. Feel free to PM me with any info. -dabbo |
Thank YOu SO much for the information, doctors info & most of all for being so caring.
The hardest part of this whole ordeal is the 8 work comp doc's I have been to, can care less about me :( Your info will be most helpful to me, as it is the first time I have heard alot of it. I had no idea if I got the surgery now or later that it would be the same outcome (genius) and such a load off my mind. The questions without answers have been really bugging me, So I thank you immensely for these answers. You are very encouraging, & I am very greatful :) |
Hi & thanks for the info. I really appreciate u recommending this doctor.
If you don't mind me asking, what diagnostic tests did this doctor perform to rule in tos? I'm trying to find doc's with extensive testing to be sure I have tos (and not something else that can be confused with this) |
Oh, do you have a work comp atty on your side, and your own treating dr? You aren't just seeing the comp ins drs are you?
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Sweettheresa,
As was stated in another reply, Tos dx is a process of elimination and some of the tests can be very expensive and sometimes not useful. What I mean by that is that one Tos expert will perform one type of imaging scan (CT or MRI) that only that Tos expert believes in so that if you brought the results to another Tos expert they would dismiss the results. I was dx 6 years by Dr. Pertchik and from what I remember his exam involved the EAST test which is where you put your arms up in the stick em up position and flex your hands for 3 minutes in that position. If you develop sx's such as numbness, tingling, coldness, in your hands or arms then it's considered positive. He also does the Adson test you described in your first post, and another test involving you holding your arm up like your throwing a spear. He also orders a chest xray to rule out Pancost tumor, check for cervical ribs. He will also check your neck range of motion and if turning your neck in a particular way brings on symptoms which could indicate c-spine pathology. If your willing to travel to Wilkes Barre, PA there is a Tos expert there Dr. Togut. I have not seen Dr. Togut, but he is highly recommended by some members of this forum. Hope this was helpful. Jeanne |
God bless you and know we care
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. |
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Now I am trying to get them to authorize a 2nd opinion with the doctor i'm choosing. I do have an attorney (but he's so busy I'm having a hard time getting him to talk to me- although he did put in an appeal for a second opinion) I hope I can go see this doctor at John Hopkins university that was recommended on her to me. The thing is I need to see her in the next 2 weeks so hopefully she will see me & run some diagnostic tests. ( I just don't know how I can afford her on my own :( |
sweettheresa,
FYI: I was told once, long ago, to think of a "syndrome" as an intermediate diagnosis. It doesn't tell you what's causing your condition, it's just a name for a collection of symptoms without a clear origin. You'll be in a constant battle until you find someone who can objectively identify the origin of your symptoms. For me, that was one of the expensive MRI/MRA/MRVs that identified an abnormally large(3x) insertion point of the anterior scalene muscles on both sides. There s a whole waterfall of complications from that one anomaly that could explain every one of my symptoms. |
Hi SweetTheresa,
If you cannot be seen at Johns Hopkins in 2 weeks, please consider Dr. Cerino, I promise you will not regret it. He has offices in Towson and Baltimore, very close to Johns Hopkins. I do hope you can be seen by your first choice as Johns Hopkins does have a cache' which may or may not be important in your case. I did not have a positive experience there, but I was seen by someone else. I had an attorney who was suing the business where I was injured and he was enamored by the idea of a report from J-H. It took me four months for my first visit and another 3 1/2 months to receive a tepid admission that ALL of the other specialists I had seen were CORRECT in their diagnosis and I also had provided to J-H, a series of clearly positive test results. When I had my first appt. at Johns Hopkins, my medical records were not even looked by the Neurologist. He and his partner were two of the most arrogant people I have ever met....and I have met many. My Husband, an attorney, was with me and HE was shocked too. Oh, I could go on and on, but it would not be fair to the physican you will be seeing. I know many people who are highly educated and hold important professional positions, who were treated like dirt at J-H. That is just a fact, so don't be surprised. That is the 'culture' there. I hope this new speciaist has not adopted that 'attitude' yet. They are not gods, so if you feel they are wrong, YOU might be right! J-H had the only specialists who salivated at the idea of (multiple) surgeries on me and then admitted, after I questioned this advice, that these MAJOR proceedures might not make any difference and could make me worse. When I first inquired about surgery causing problems, he said "Oh, THAT won't happen!!!, then recanted after I stared in disbelief at his utter lack of humility. I am omitting a horror story about that Doc, because the woman you are trying to see might be wonderful. I just don't want you to believe that an opinion at J-H is the end all and be all...a word to the wise. Please PM me if you have questions. Anne |
sweet T,
If you haven't checked your State website for the workers compensation info , do that too , most states have helpful info and even case outcomes, judgments etc. I know in some states you can change to a dr of your choice at some point. And it doesn't need approval by w/c. Don't be afraid to fire your w/c atty if you can't get any help or results from him/her! at least mention that you are thinking of finding a new one if you don't get results. some just want the easy % of whatever $$ you might get and not what is the best thing for you. I think I should have fired mine and tried to find a better one. |
hello SweetT
I'm also from NJ! Where are you located? I'm in the southern half of our state. I do believe we have 2 or 3 other folks here from Jersey. (Is is epidemic here or what :eek::confused: ) Sorry you had to "FIND" us this way. If you have questions these folks are a great source of info. Just when I thought I was losing it, I found out that it was just another symptom and I wasn't imaging it! What type of TOS do they think you have may I ask?? I personally suffer from true neurogenic tos with vascular symptoms (subclavian steal syndrome) HM |
Another good doctor that you may be able to see on short notice would be Dr. Scott Fried in Blue Bell, PA (Southeastern PA, about 19 miles northwest of Philadelphia). I was very pleasantly surprised to be able to see him within the week or so of when when my "carpal tunnel" got unbearable in 2003. He's an orthopedic hand surgeon who specializes in conservative treatment of the entire upper extremity, with surgery as a last resort when nonsurgical treatments don't work. He looks at the patient as a whole and refers out to other specialists as necessary (pain management, neurology, etc. in my case), while overseeing care of upper extremity problems (hand through brachial plexus level).
He does a thorough initial exam using the various arm tests that have already been mentioned, as well as some others that were developed by Dr. Hunter, a co-author of a well-known text on surgery and rehabilitation of the hand and upper extremity (Dr. Fried did post fellowship training at Thomas Jefferson University with both Dr. Hunter and Dr. Whitenack in surgery and treatment of thoracic outlet syndrome and brachial plexus injuries). In my case he found that I had repetitive strain injury with nerve irritation on both sides at the median, ulnar and brachial plexus levels. He also reviews previous medical records(almost 10 years worth in my case) and has multiple x-rays done of the cervical spine and both wrists to check for cervical ribs and to rule in/out any obvious problems with the bones of the wrists and neck (none in my case). He also refers patients with brachial plexus problems for full upper body EMG and SSEP tests (both positive in my case). His office has a physical therapy center which will make custom wrist splints and elbow splints when needed (both soft splints and hard splints for my carpal tunnel). The therapists also also teach the basics of how to reduce nerve irritation by modifying daily tasks, nerve glides and other gentle stretches and exercises for the brachial plexus, elbow and wrist areas as needed (in my case, gentle stretches and exercises for the neck and shoulder areas, as well as tendon glides for the hands and brachial plexus level nerve glides). They also use heat, ice, paraffin, and ultrasound as needed. He also refers patients for massage (a nearby physical therapy center has two massage therapists who are familiar with brachial plexus injuries -- this has helped loosen up my neck and upper back) and biofeedback training (which has helped me with both pain and stress relief). When applicable, he also recommends an arm support system that provides support for either shoulder without straps going over the neck that cause neck problems. I've found this quite helpful for supporting my right arm that gets tired and heavy easily. When needed, he does surgeries at the hand through elbow levels, and refers patients that may need brachial plexus surgery to Dr. Julie Freischlag at Johns Hopkins University. He's also experienced in dealing with workers compensation. His office phone number is 610-277-1990. He also has a website at www.nervepain.com (note: the "e-mail me for free consultation" link appears to be broken currently) . Information on the arm support is at http://www.docinthehouse.info. One caveat: it can take a while to get the SSEP results, as he refers patients to a top Philadelphia area specialist (Dr. Ernest Baran) who only performs about two per week (your may be scheduled out three to six months from when you call Dr. Baran's office . Also, it took over a month to get the EMG test done and get the results back. . You can also check your local library for his two books, Light at the End of the Carpal Tunnel and the Carpal Tunnel Help Book. Both books mention brachial plexus injuries, with the second one going into more detail. The first one contains both basic education about nerve injuries, and his philosophy of diagnosis and treatment, illustrated by case studies of various patients he's treated. Hope this helps. I am "typing" this with Dragon NaturallySpeaking, as my arms are both practically shot for typing any length of time. Although I'm still not working, my pain level is much more livable than before. I'm currently on several medications managed by a pain management specialist and a neurologist (Dr. Tabby at Drexel University) who Dr. Fried referred me to. Regards, ThreeForOne |
Thank you So mUch for taking the time to respond to my 'cry for help'
It means SO much to me to have a community like this, of people who not only understand what I am going through, but can also use their own experiences to help others. A MILLION THANK YOU'S FOR BEING SO CONSIDERATE ... this is the hardest thing that has ever happened to me & every little bit of encouragement goes Such a LONG Way. |
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Said my only option was to get decompression of the brachial plexus ( and than possible surgery on my elbow and wrist the following year.:eek: I'm close to NYC, but will drive to Pa,NY, or anywhere in NJ if I can find a good doctor who takes insurance. I totally feel like i'm losing it, so i'm interested in finding out what you mean by it being just another symptom. After 1 1/2 years of such chronic pain, I have such little energy left that it's so hard to fight off this depression, let alone try and fight for myself to get better. I need strength, I need to fight for my health, it's just easier said than done. This is all so confusing. Thank you SO MUCH for writing to me. Just when I feel alone and at a loss for what to do, I sign on to this site and get re-energized a bit with new info as to what I can do next to fight this thing, fight these work comp doc's and get some help:hug: |
Bumping up for new people...just fyi. Thought there was a lot of good info. already posted here.
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