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New to this.
My son has YOS and is scheduled for surgery Nov 15. Looking for some info on what to expect. He is a competative tennis player and wants to return to the game to play college tennis
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Seriously stopping tennis is not so dramatic, i mean if the only thing he can't do is playing tennis he is lucky, for me :-)
Regards :grouphug: |
Verrrry long story short
I'm brand new to this forum and I am so excited to have found it. So thanks to everyone for sharing and to the admin. for running it :Smile:
I have been dealing with pain forever. I was stated complaining of pain in my back and neck as a kid (11 or 12 years old) and have been ever since. Finally, a decade later, I have a diagnosis. After seeing dozens of neurosurgeons, orthopedic surgeons and pain specialists, my Chiropractor diagnosed me with TOS in July of this year. My coworkers convinced me to go see a chiropractor after they noticed that I seemed to complain allllll the time about my neck and back hurting. Reluctantly, I went. After 6 weeks of 2 or 3 appointments a week, my chiro recommended an x-ray as my pain was barely lessened and my neck was out of place almost immediately after it was adjusted. She found what she suspected the whole time... bilateral c ribs. I went through 12 weeks of P.T and two months of leave from work before we decided that surgery seemed to be my only option. My surgery is scheduled for the day after tomorrow! :) It's so great to know that I am not the only one going through this. People don't seem to think that you are REALLY hurt or in pain unless there is blood or broken bones... Its nice to get advice sans skepticism from people who wont think I'm just making excuses for not going to work or doing the dishes. So again, Thank you! Oh, and Hello! :p |
RSD - could it be caused by pinched nerve in my neck?
Hello, this is my first post here. There might be some misplaced words, or some other grammatical errors in my message. This is because due to my hands being almost paralyzed, I cannot type, and have to use automatic dictation software to write this. So let me begin!
Last July, a Jubilant friend approached me, and without knowing what he was doing, pulled down very hard on the back of my neck. I have already gone through a laminectomy in my lower back last December. I suffered no immediate pain from the incident, other than to my hands when my legs collapsed to protect my back my hands hit pretty hard on the palms. The next day, I started feeling tingling and pain in both of my hands. As days progressed, it got worse and worse. I made an apartment with my sports physician who ordered MRI for my neck. Although my neck didn't have very much pain, my hands started getting worse and worse. Up until this time, I worked out three times a week in a health club. Doing the normal exercises one would do to keep trim and fit. I started noticing major pain in the hands and doing the press ups and other exercises involving the hands. Each day got worse instead of better. That was when I saw my sports physician. Although looking at the details of the MRI report, it shows that there are three protrusions between the discs in my vertebrae of my neck, getting dangerously close to my spinal cord. A cross-section analysis of the spine looking down from the top of the head, has revealed a lot less room for the root nerve going out between the C5 and C6 vertebrae. The disc was herniated, plus there was little room for the root nerves that go between the vertebrae, and a small canal or channel where the nerves live, has been greatly reduced in width. Furthermore, there are three such protrusions where spurs that are pushed out or in depending on your perspective, these are pressing into the spinal cord. They are actually on both sides. So further research into my condition resulted in the discovery of a endoscopic type of treatment, where the surgeon can go in with an endoscope along with other tools, and a very high pressure jet of saline water, to dissolve the spur and suck it away. This is a relatively new procedure, and very few medical institutions practice this which take Medicare. I'm 67 years old now on Medicare. None of my group of doctors practice this procedure, now knows much about it, and I sent them articles, but (sigh) none has time to totally review it, nor would want to be trained to do it. I found a place in Pomona California near where I live, to see a doctor who practices this procedure. I took all my records MRI, blood work to see the doctor. Unfortunately, I am not a candidate for this procedure. He then offered to do the surgery. I wasn't interested in trying out a new surgeon. So I also made an appointment to see my original surgeon who did my lower back laminectomy. He took a look at my records, and was very puzzled as to why I had so much pain, because the encroachment in my spinal cord didn't quite seem to touch it. This is because the spinal cord is in a sack of fluid. And when you look at it in the MRI, it doesn't show up that well. This was when my surgeon referred me to another surgeon which I am to see on 15 November. His name is Dr Lawner working out of St Josephs hospital in Burbank, near a large medical complex near the Walt Disney company, I live just blocks away. I hear he is supposed to be the best, but initial waiting time to see him as a new patient, has taken me a month. Not surprisingly, since he's supposed to be so good. I have already received two cortisone injections on my left back side of my neck, when in actuality both sides seem to have the pain, but the left side having the worst. Almost immediately after the injections, I started doing much better, pain level went down from a 10 to almost a three. About 7 to 10 days later, the pain came back with a vengeance. The doctor also gave me three pain medications to deal with the pain. Gabaentin, Vicoden, Tramadol, and Predniscone. The Predniscone has cortisone in it, and help reduce the inflammation and arthritus, but prolong use can have nasty side effects... he only prescribed 10 tablets to be taken over a week. About two weeks later, I had another injection in the same area. Again, the pain went down, and normally the second injections are usually expected to have a much longer affect in keeping down the pain. In my situation, the pain came back in about a week. What does that mean? Other then possible surgery, is there a longer term treatment? The third treatment involved a Stellar Ganglon nerve root block, which only reduced the pain to about half, by voice was very weak, because the injection was done in the front of the neck and not in the back, It was a heck of a lot more painful. That evening, I did notice a reduction in pain, and the doctor told me that after a 48-hour period, the pain centers would reboot. Sure enough after 48 hours, the pain returned. This procedure was done as a diagnostic measure to isolate the area and source of the pain. Obviously coming in from MANY sources. Based on information, both myself and my doctors have to make a decision as to where to go next, and this is why I joined this forum. To learn about any new procedures that may have been approved for human trial testing, or actual mainstream medicine, and to contact others who already had surgery and more invasive treatments. I am an electrical engineer by trade, the when computers first came out, I went to software development. I've been a developer for all my life, working as a contractor. As of last July, my career as a programmer has ended, because without my hands I cannot write a program. Capability tools such as MacSpeech, cannot be re-adapted to write programs. I just got on Social Security, which pays for only 80% of my living expenses, and it is in the best interest I try to get back into the workforce again and make a living, and more important, pay off a huge debt of co-payments I owe. Also bought a very good book on RSD *edit* Although I just haven't yet read it, in looking at the index it appears that a lot of information is useful. Others might want to check this out. Right now, I'm on a mission to try to find out any new research and human trials in the works for new procedures dealing with my particular RSD. if anyone else has any links that give me clues as to where to find these research institutes, and I don't care where they are. They can be anywhere in the world as far as I care, even Cuba. I will travel anywhere I have to go to deal with this problem. In the long waiting time, awaiting for the surgeon to see me, all I have done was constant research 12 hours a day, trying to find the best and the most advance medical treatments possible for this condition. I'm not very encouraged with what I've found so far, although I haven't as yet reached out to places like China, and other countries with modern medical technology. Anyway, this is my story, and I hope that other doctors and medical professionals read this forum and can give me some good advice. I already have my own set of doctors who I'm satisfied with. My sports physician, my surgeon, a neurologist, and a pain specialist. I trust their decisions, however they tend to lack details on new procedures. They are very good at what they do in more general medical procedures. But they tend to lack details on the cutting edge technologies. Most doctors tend to stick with the skill levels they are good at. But I believe there are newer procedures out there to my doctors don't know about. I was surprised to learn that most of them did not know about the endoscopic procedures. Which I later learned can only be applied to very specific problems of which mine do not match. Anyway enough said. I remain John |
Short-term disability denied - TOS
If anyone can offer some advice on my situation, it would be GREATLY appreciated.
I worked as a processor for 3 years, while taking on-line classes, to finish a college degree. Meaning, I was on the computer for an average of about 12 hours a day. By the end of July (this year) my arm, fingers, neck, right side of head where fully symptomatic. You know...pain, numbness, tingling, stiffness... I went to see a nurse practitioner at my local doctor’s office and she wrote a slip for me to be off of work until I saw an orthopedic surgeon. To make a long story, shorter, I ended up seeing 4 different medical professionals until the last one diagnosed me with TOS. I have been off of work since July, without pay. The disability insurance (Harford) refuses to pay me because of lack of evidence of injury/illness. I've been in physical therapy for the last 6 weeks and it's slowly but surely helping (along with not being on the computer very much). Has anyone experienced this-having your short-term disability denied? I'm not sure what or if I can do anything about it. I already sent an appeal letter to them and they rejected that. It's not right to deny someone benefits just because they don't understand it (TOS). Oh, I was terminated fro my job as well (on Oct 18th). Can anyone relate? Thanks for taking the time to read. Kelly |
I was diagnosed with TOS in June, after 2 1/2 years of various doctors, tests and surgeries. I recently saw another Thoracic Surgeon @ MGH who isn't positive that it is TOS, but he wants to do a CT since he claims their machine is better than the other Boston hospital's machine.
I am out of work due to the pain, muscle loss/weakness etc. |
I was diagnosed with bilateral TOS just recently after developing collateral vessels and a swollen hand while pregnant. I've had very mild symptoms for years (mild shoulder pain once in a while and arms tiring when held over my head for a short time) but had no idea they were part of a syndrome! I'm currently in between seeing a local doc and a specialist at UofMichigan and contemplating whether surgery is right for me. It's been great to find a forum with others who understand how frustrating this can be (although it sucks that anyone has to go through it, of course).
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Just found the forum!
Hi all!
So here is my story... Went to the doctor because I had veins showing in my chest down my left upper arm. They did a sonogram and found a clot in my arm, so I was sent to the hospital. They ran a WHOLE bunch of tests. It took them a week to diagnosis me with Paget Von Schroetter Syndrome (effort - venous TOS). They did a TPA/Heaprin IV which put me in the ICU. Doctors did a 2nd venogram which showed that the thrombolysis didn't work as well as they would have liked. Rib resection was done Feb. 2010, on warafin until May 2010 (Scars above and below clavicle) I still have random pains (warmth and coldness in the arm) from time to time. I have to go to my see my surgeon ever year now and have a sonogram of my arm every 2 years. FUN! :rolleyes: |
Tos
After 5 years of pain, tingling, tests, tests and more tests I was diagnosed wit TOS. I've had several whiplash injurues and brain surgery for Chiari 1 Malformation. Years of PT, accupressure, chiropractor - nothing worked. Now looking at surgery. I'm unlucky enough to now have this on both side, with the left being the worst. Surgeon talking about removing 1st rib going in under armpit. Said I'd be back to work (on a computer asll day) in 1 week. From what I've read, this sounds unrealistic. Looking for info on the surgery, recovery, etc.
Nice to find this group. Sue:confused: |
New Member Intro
I'm a 34 year old male. I'm an office/desk worker and until 2 months ago very active physically via resistance exercise, cycling and climbing.
I've been diagnosed by a Neurologist with bilateral vascular and neurogenic thoracic outlet syndrome, combined with bilateral ulnar nerve entrapment, which I believe can also be described as double crush syndrome. The diagnosis was made on the basis of: # My description of symptoms # Physical exam by a manual physical therapist and neurologist # Electromyography and Nerve Conduction Velocity exams # MRI of my upper back/neck/shoulders # Ultrasound to measure arterial blood flow upon abduction of the arms # X-Ray to look for cervical rib or other abnormality My first symptom, which lasted for 2 months before I sought help, was awakening from sleep with numbness present in left and/or right hand 4th and 5th digits. That was my one and only symptom for 3 months. After 3 months, and to the present day, my main complaint is that within 30-45 minutes of sitting/standing/walking with my head and neck unsupported, I develop pain in the rear neck area, which sometimes spreads to my trapezius and shoulders. I have less serious and frequent pain in my ulnar nerve around the elbow and forearm. I'm currently undergoing physical therapy with a physio using the Barral system (a french physio) |
new to site
I was injured in 1991. A car hoist came down and broke my right shoulder, clavical. I have had 8 surgerys. Two of them were bone grafts from my hips. I spent 5-6 years in either a uper body cast or airplane brace. My last surgery was in 1998. I have lived with cronic pain from the start, as i am geting older other med prolbem are acuring, i was just rx with tos.:(
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intro's...
my name is michelle, i am 33, and diagnosed in 2005 when i was 27. i have bi-lateral neuropathic tos, due to repetitive motions at work. i settled my work comp case in 2006, no where near to being healed. i started to work again in 2007, after my second round of pt. i sit at a desk and am on a computer for 8 hours a day. everything i ergonomically perfect at my desk. i am not as bad as when it first happened ( i couldnt even lay down flat w/out screaming), but my meds have continuosly increased over the last 4 years. i am not doing any outside activities anymore because everything causes a flare up now. so....i am having surgery in two weeks - 1st rib resection on left side.
i know it is a shot in the dark, but my next option is the phyntenol patch. i'm hoping i can keep working, even though i know this is causing me not to heal. perhaps while i am out on disability for the surgery i will change my mind about being permanetly disabled. |
Glad I found this forum!
Hi
My name is Diane. I live in Seattle. Been struggling for the last year and a half or so. Started out with frozen shoulder - eventually ended up with a physiatrist who worked me up and have received a diagnosis of bilateral TOS as well as C5-6 stenosis and bulging discs. Saw a well-respected vascular surgeon here on the Eastside of Seattle who recommends the axillary surgery. I had about 8 weeks of PT which didn't do anything; however a scalene block did give me about 80% relief. He says this indicates I would probably do well with surgery. Not sure I'm sold, as my neck/arm/shoulder pain also completely relieved with a C5-6 epidural steroid injection - lasted for 6 weeks. Leads me to think that a cervical foraminotomy may be the best option. I've never had chronic pain before and this is wearing me down. I work 8-10 hours per day as a medical transcriptionist and this sure makes it hard to my job. Would like some advice on the TOS surgery. I'm willing to give it a try if it will give me some relief. I feel confident in the surgeon. If you want his name, private message me. I'm getting a repeat scalene block this week to run that test again. My diagnosis is "true neurogenic TOS". He wants to go in under the armpit. thanks for any advice and look forward to hearing from some new TOS friends! Diane |
Regarding the ergo- I sit in a reclined position (unfortunately not the best for lumbar support) and have my right arm in a long arm splint while working, resting on the keyboard (with scroll-type mouse on keyboard), when I type I do have to sit up but the reclined position decreases the pain- it takes all of the stress off the scalenes and head is supported on back of chair-a special chair that stays reclined with lumbar support is needed but since it is too $$$ I make the chair I have work. This may help you too.
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3 weeks post op cervicle/1st rib resected
scared scared scared... part of me wishes i never had this operation, i was sent home the day after surgery no xray done no pain killers given the pain felt as if i was being stabbed in the chest,couldnt breathe or relax nothing, the next day i was back in hospital with a lung infection they kept me in for 5 days now i am at home breathing getting there just cant get rid of this scared feeling i am not sure if i was supposed to post this on here guess i just needed to voice how i feel right now,,feel kinda silly troubling a bunch of strangers no disrespect just need someone to talk to you know, am i supposed to feel so stiff and numb will it get easier xx
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new here
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:
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 question, does anyone here also have their arm/hand turn RED instead of what is characteristically described as blue or pale white??? Thank you to the forum- It is a relief to know that I am not alone in all of this. Jocelyn |
Edelweis
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thank |
help, new member searching for info into TOS
having alot of the symptoms most of you have mentioned 2 years into this stuff. fill me in with any info thanks |
newbie
I'm 40, newly diagnosed with TOS by Dr. Hugh Gelabert at UCLA. I developed TOS through a variety of factors, mainly chest breathing, lots of stress/tension, and having to overcompensate for having a short arm cast on my right (dominant) hand for 6 weeks (plus not being able to use it 100% afterwards as I was going through therapy). My TOS is bilateral, left is worse. MRA shows greater than 90% subclavian artery blockage in arms raised position. There is also some blockage on right side. I do not have an extra rib.
So my course of therapy is to start with PT for 4-6 weeks. Dr. Gelabert mentioned the scalene blocks but I'll hold off on that for now. I've also taken about 10 Alexander Technique lessons and will continue with that as it's helped me to become more aware of the subconscious tension in my body. To complicate all this, prior to TOS diagnosis, I was diagnosed with bilateral cubital tunnel; however, it could all be from TOS. I literally was ready to go under the knife at my elbow when TOS was thrown into the mix. Anyhow, this is a great site and very insightful for all of us going through this "journey." |
Welcome all.
Just wanted to mention that sometimes the posts in this section get overlooked as they get bumped back in history due to the main TOS threads being more active, so it's good to make a new thread to say hello also. TOS forum new thread link- http://neurotalk.psychcentral.com/im.../newthread.gif |
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Also, where did you take the Alexander Technique classes if you don't mind me asking? I'm in the LA area as well. |
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As for the Alexander Technique lessons, I'm in Orange County, and found a lovely older woman who has been teaching for 20+ years. Her name is Phyllis Gilmore. She has an amazing ability to sense tightness in the body. Her hands could be on my arm and she'll know that I'm tense in my left hamstring (or somewhere nowhere near my arm!). I can ask her for recommendations in the LA area if you'd like. Is there a particular area in LA? I'm still taking lessons about once a week and they really have taught me a lot. I am still amazed at how, with her guidance, I am able to inhibit my tension when I'm in a lesson. The lessons have taught me to become more aware of the overall tension in my body. While I'm still working on how to inhibit on my own, I've learned quite a bit. I highly recommend taking a few classes and have an open mind and be willing to "let go." It's hard at first but you will get the hang of it. I've also had a few massages over the last few weeks and they've helped as well. Make sure to ask your massage therapist if they've worked on TOS. I found one that has slight case of TOS herself as does her significant other. She spends a very heavenly hour massaging pretty much every muscle in the upper body with a heavy emphasis on pecs (minor and major), scalenes, subscapularis, traps, rhomboids. She also throws in a little active release when I can tolerate it. In case you are going to get a massage, I think it would be awkward if a man was massaging my pecs/chest region the way she does so I would request a woman. Anyhow, I've rambled on...off to do some deep breathing! |
Hello Shadow,
I'll place copies of your posts here on the main TOS thread area for more hellos & sharing. :) |
New member
I am a 36 y/o female diagnosed with TOS on my right side a couple months ago. I'm not sure of the cause but it's probably related to past MVA. My right side is in constant mild to moderate pain. I take gabapentin which helps somewhat. My spine doc recently told me unless I want surgery my only options are drugs or Botox. PT isn't helping much. I am looking for other options. I don't want o be in pain/on drugs the rest of my life.
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My name is Marc, 21 years old, Denmark - been suffering for 3 years, from what doctors now believe is neurogenic TOS. I first started being diagnosed with bilateral tennis elbow, but that diagnose quickly feel to the ground after doppler ultrasound, second opinion from a rheumatologist rheumat and x-rays.
Then the diagnosed went upon bilateral radial tunnel syndrome, but that eventually also fell to the ground. My pain is primary in my elbows, and that is where it started, right beside the epicondyle, in the supinator muscle and it is very sore. I then started having pins and needles in my hands and electrical shocks up my arm. I have very bad posture and have also lost the natural curve in my neck. Then i had a nerve conduction test made by a very experienced (45 years) Neurologist, who concluded bilateral pinched nerves in the thorax propably in the plexus brachiallis, furthermore he ruled out carpal tunnel and radial tunnel. Now after 3 rheumatologists, 1 neurologist, 2 nerve conduction tests and endless anti-inflammatory gels and acupuncture i think i finally have a diagnose. TOS |
Hi all,
I am comforted and relieved to find this support forum. It's disheartening and frustrating to feel weakness and in pain every day, and no one can see why it hurts. I'm a 24 year old female. Anyway, I believe I developed TOS from repetitive strain at work. I used to work in a mental health facility, where we had to restrain teenage girls multiple times a day. Last January and February, our restraints increased to over 40 in the month, and it was at the end of February that I started to notice my symptoms. Fast forward to September 2011, and I feel like I've been around the doctor block. I'm fortunate to live in Boston, MA, where we have so many great doctors and medical institutions. I've been to my PCP, a physiatrist, an OT, a vascular surgeon, a neurologist, and a thoracic surgeon. After these folks and lots of tests, a diagnosis is still inconclusive:
I'm now awaiting to hear about Botox injections into four muscles (two on either side). MGH's Dr. Donohue is working to get clearance from my insurance company. In the meantime, I continue to have daily struggles. My pain and weakness are sporadic, and there are now two days alike.
Glad to find everyone here. Take care. **placed a copy of your post on the main TOS page here- http://neurotalk.psychcentral.com/sh...055#post810055 |
@LadyLaura418, We have a lot of overlap in our symptoms and I've made some progress, so I thought I'd comment:
The #1 thing that helped me was elevating the arm on the symptomatic for the purpose of lifting up the collar bone/shoulder girdle in order to open up the space underneath it, to reduce compression. In other words, if TOS involves compression under the clavicle, then raise the clavicle. I found out later from literature than some people were already doing this as part of testing for TOS. I used it for relief. :-) I do this elevation when watching TV, reading and driving (it's my left arm so I just prop it on the door). When I walk, I don't let the arm hang down, but prop it on a hip, a top of a pocket or in a pocket. When working at the computer, I have books on the left side so I can prop it periodically. The huge reduction in symptoms was further confirmation that I had TOS. Here are other things that helped: http://neurotalk.psychcentral.com/post802248-72.html Good luck. |
Hi Everyone,
I was formally diagnosed with TOS about 3 months ago but its been an ongoing run around for the past 5 years. 5 years ago I started to notice some tightness in my shoulder and feeling of a rubberband just wrapped around the upper part of my right arm. Then the swelling came along and all my clothes started to fit differently. I was working in the therapy department of a skilled nursing facility at the time and talked to one of the PT's about it. She checked it out and recommened I go see an ortho surgeon. After 2 months of rehab, MRI's and CT scans the doctor was just lost on what to do. Then he gave me the scare of a lifetime when he referred me to a breast specialist in thoughts of breast cancer. She blammed it all on the underwires of my bra and told me to get rid of them and move on with it because nothing was wrong with me. I was 19 then. Here I am at 24 and in a month I'm having surgery to have my first rib removed on my right side. The pain and swelling has progressively gotten worse over the past year. If it wouldn't of been for my new ortho surgeron and the PT he sent me to- we would of never got to this point- even thou the ortho told me from the beginning when I first went to him 6 months ago that this is what he thought it was- he wanted to do eliminate all other possibilities but we weren't giving up until we knew what it was. All x-rays and scans were normal, MRI showed no problems, Nuero said all muscles were functioning well, but the pain in my clavical area was unusal and swelling was something they couldn't explain. Then the thoracic surgeon dx me. I put the surgery off because I was in the midst of planning my wedding and couldn't move the date- but now its far worse than it was. I have knots all through my arm and can't remember the last night of sleep I had. Doing my hair in the morning is a pain and my passion for drawing and painting is just an after thought because I can't hold a brush like I used to due to the numbness. Just looking for reliefe and anyone who can relate because its like the world just thinks I'm crazy.... |
Hi Chroma,
Thank you for your advice. I will certainly try to think of ways at which I can open the thoracic cavity when I'm going about my daily tasks. I appreciate your thoughts and advice! |
You're welcome!
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Hi everyone,
I'm new here for posting but have read this forum a few times before when my symptoms started in January of this year - reading everyone's comments has really helped me. This forum also encouraged me to persist and find a TOS specialist after FOUR doctors dismissed me when I said I thought I had TOS (none of them actually did diagnostic testing or imaging - they just looked at me and said, "no, you're not a weightlifter, you don't have TOS, you're just stressed/anxious/have a pulled muscle"). I am in Boston and finally found a great thoracic surgeon who studies TOS. He ordered a CT and some sort of specialized MRI and did all the movement/arms-above-head tests in his office. Both scans showed significant compression of the right-side thoracic outlet. He said I'm a three on a scale of one to four, one being no compression, four being the worst compression. I have an elongated C-7 and some weird tissue bands between it and my first rib (pretty sure I got that right...basically, I have no room in there!). Oh also, I broke my right collarbone when I was about ten and it healed sort of "lumpy," so I'm sure that doesn't help. Initial symptoms: Choking sensation on both sides of the base of my neck/throat and collarbone Right side of neck seized up - movement was very difficult Neck felt swollen Pain radiating through collarbone, neck, jaw, and ear Pressure in eye Current symptoms: Pain in right side of neck Rights side collarbone pain, usually sharp and sudden Can feel pulse in right side of neck when lying down or sitting still, right side pulse in neck is strong than left "Whoosing" in right ear Right side jaw pain Pain in forearm and bicep Tingling in right arm sometimes wakes me up Extreme tightness on right side trapezius, shoulder, the "ridge" across the top of my torso from neck to end of shoulder Can feel pulse in bottom of right foot (weird, I know), especially after a lot of walking or mild exercise I also can't stand for anyone or anything to put any pressure near my right collarbone. Makes me feel very icky. I think I'm the same as just about everyone here with what makes symptoms worse - basically, using my right arm, ever! Especially above my head or carrying something heavy. What helps: Valium Rest/sleep (usually feel best in the morning) Warm showers I used to LOVE massage and got one weekly to help with migraines, but I've found that no matter how careful my massage therapist is, massage tends to exacerbate my TOS symptoms. Really depressing. I haven't tried PT because my plan with my doctor was to try the Botox injection in the scalene first, then start PT. But of course my insurance won't approve the injection - we've been fighting with them for about six months. So right now I just try not to do anything to make it worse and take a half a Valium when the pain flares up. I'm thinking of just starting the PT anyway. Anyway, I hope this wasn't too long. Thanks to everyone for sharing and good luck to all. Nic |
Hi all,
Long time reader/lurker but first time poster as I have been hesitant to chime in since I can still work and my condition is not nearly as bad as most of yours. I don't have issues doing most day to day things unless they require a lot of arm strength or endurance both of which I have very little. Here's my brief story: I am 34 and was diagnosed with bilateral TOS a few years ago (2007). From what I can figure out, my TOS gradually developed over a long period of time as a kid due to a number of factors such as repetitive strain from swimming and computer use, bad posture, minor whiplash in an accident, etc. I had inklings something was not right as early as 2000 but it wasn't until late 2006 when it really became noticeable. Symptoms: -Poor circulation in arms/hands, especially when raised > 90 degrees. This results in fatigue, heaviness and tingling. -Poor circulation in feet -Winged scaplua on both sides (much worse on right) -Lots of muscle tension everywhere, especially scalene/traps/scapula/upper spine area -Tender spots all over that cause aching when pressed with light/moderate pressure -Cracking joints, especially my shoulders and neck which get cracked repeatedly throughout the day -Some minor tingling and coldness in my hands -Random aching in various places Things I have tried: -Saw a neurologist focused on TOS and was diagnosed with bilateral TOS and very minor carpal tunnel. -Physical therapy for ~3-4 months, didn't seem to do much good at all. -Massage therapy for ~3 months, went once a week and it loosened me up a bit but the relief only lasted a day or so. Eventually it stopped having much affect at all. -Saw a chiro who had me do spinal manipulation for ~6 months to help with posture, now I go every 6 weeks. Also found my vitamin D levels were quite low so I am taking that as well. No idea what to do next, but that's for another post! :) |
Hi all-reading your posts and messages has been such a help and mental relief since my TOS diagnosis. I was diagnosed with vascular TOS finally, two years after i had a traumatic fall where i dislocated my shoulder and fractured three upper ribs. I started PT two weeks ago, which is exacerbating all of my symptoms. Currently debating surgery. My symptoms are: numbness, tingling, twitching, shooting pain in my collarbone area and above the ribs that were injured, pain, nausea, pain... Shoulder surgery in June 2010, fixed my shoulder, but i am afraid now seems like just a second trauma to increase all of my other symptoms.
Thanks for all your posts, very informational. |
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I have many of the same symptoms including neck pain, tight traps, tinnitus and more. I also use valium and hot showers. I've been supplementing with Magnesium because a deficit of it can cause muscle spasms. After about a month, it seems to be helping. You can find us discussing it in some other threads. Regarding the botox injection, how much would they charge you if you paid for it yourself? |
Hey everyone :)
I'm hoping to find someone who shares my similar symptoms...especially someone with a happy ending. My name is Kristen and I'm a stay at home mom to 3 kids, I don't do anything repetitive, never had an accident or injury. I have had 3 c-sections and my kids are 7, almost 5 and one an a half. I'm 30 :) Over a year ago I noticed a slight pain in my wrist, especially when I pressed down on something. I hoped it would go away and didn't think much of it. A few months later and it didn't go away and in fact now the top of my hand and side of my thumb was hurting. I went to see my family dr who sent me for an xray. She didn't see anything but decided to treat me as a sprain, put me on a 7 day pack of steriods and told me if it didn't get better that she would refer me to a bone and joint dr. It didn't get better so I went to see him. He x-rayed it as well, put it in a splint for 6 weeks. During that time, I started feeling some numbness, mostly in my thumb and bottom of my wrist. Since it didn't get better with the splint, the bone dr sent me to have a nerve study done. Days leading up to the nerve study, my symptoms disappeared. Even on the day, I tried to get something to flare up so I even tried doing push ups (something that was very painful before) and nothing. I had the study done and it came back there was no damage in my nerves. Since my symptoms went away, I thought everything was finally healed and fine. Then a month later everything came back and this time I had pain all the way up my arm, almost to my shoulder. I went back tot he bone dr and he sent me to have an mri. They looked at my mri and said it "didn't look too bad" but decided I may have some arthritis in my cervical spine. Sent me to PT for 6 weeks along with a daily nsaid. During the PT, they mostly focused on traction. I did this for an entire month and my symptoms got worse. My grip was nearly gone, the numbness was so intense and the pain was awful. My husband travels a lot for work and I remember laying in bed one night while he was in another country, crying that I was going to have to drag all my kids into the ER. I went back in to see the bone dr and was a hysterical mess. They said they had no idea and gave me a referral to a spine dr. I called my family dr and cried to her on the phone and she ended up giving me a pain killer and a nerve pain killer. I was pretty emotional as the numbness and pain never goes away and now it was in my shoulder and I even felt something strange going up the side of my neck and every once in awhile in that side of my face. I did notice the numbness in my fingers were mostly on my 2 outer fingers and then also the fleshy part of my thumb. I went to see the spine dr who told me my mri was perfect and there was no arthritis or bulges in my neck. He read my the symptoms to thoracic outlet syndrome and referred me to a PT that actually dealt with several patients that had tos. I've been going for 3 weeks now. I have NO idea if it's working. Some days I think it is but then I have days like today where it's just as bad as ever. I do my stretches every day, I've been really trying to not pick up the baby with my left arm (though it's very difficult) as well as not lay on that side. I'm trying to have great posture throughout the day as well. At the first day of this diagnosis, I was pretty optimistic but as the weeks go on, I'm feeling down again. I feel like this is going to be my new normal, this is my life now and it stinks!! I'm still fairly young, my kids are young. I don't know why this happened, why nothing seems to be working? It's affecting my life in all areas and I'm feeling really...defeated. I'm open to any advice, stories, avenues I haven't taken...anything. Thank you for reading :) *I copied your post to a thread of your own for hello's & replies from members -Jo*mar* here- http://neurotalk.psychcentral.com/sh...d.php?t=160657 |
Hi,
I had bilateral venous occlusion in both axillary veins. My symptoms first appeared when lifting weights. My L arm was affected first in 2006. My R arm jumped on board in 2008. Up until my R arm was affected I was on coumadin for 9 months due to failure of a venogram in my L arm. Once my R arm became occluded (originally was being treated at the VA), I was sent to the Cleveland Clinic. A few venogram failures later on my R arm and I was running out of options. I had my 1st rib resected on my R arm in January of 2009 followed up by successful venoplasty! I have had zero issues with my R arm since! L arm... I had 1st rib resected in January of 2010, followed by unsuccessful venoplasty. I have developed some sever scar tissue restrictions. Over all I have pretty good drainage, due to extreme collateral flow, and other then intermiten numbness and tingling. Problem- I was love to lift weights and exercise and most of my issues are exercise induced. My vascular surgeon told me to keep hitting the weights and exercising, since forcing blood through, will over time increase the collateral flow and possibly get to a normal level. I kind of doubt it, but I want to believe it since that what I like to do. Over the past 4 weeks or so I have noticed some increased swelling in my hand and redness. Also, my L arm, shoulder, and axillary area, is somewhat bigger than my R side. The scar tissue I can tell is getting worse, and I am just trying to figure out what my options are both short term and long term complications. Thanks |
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I think your best option is some kind of consistent cardio, like walking. If you do a brisk pace, also known as power walking, do not forget to bend your elbows or you can injure yourself further. As I did. You can google for "power walking tips" and such for more info. If winter weather is interfering, there are indoor walking DVDs by Leslie Sansone which are nice to follow along with. They include side stepping, kicks, etc. to get the heart rate up. I also have problems with exercise and have to do take precautions such as incrementing my program very slowly and finding arm positions that work better for me. Also, I've read from more than one source now not to do deep dips. PT people have stated that this is bad for the shoulders due to compression. Another thing that is awful for TOS. HTH. Good luck. |
Hello!
Hi, I'm Sarah. I am 23 now and was diagnosed with bilateral TOS in junior high but definitely had it before that. This was not a result of an injury. Things got much worse in the last two years. I have arterial and venous TOS and had a left rib resection this summer and am doing MUCH better. I wanted to lend support to others who may be facing surgery or considering their options and learn more about other people's experiences as well. I also have Ehlers Danlos syndrome (hypermobility type) and was wondering if anyone else with TOS has the same thing? In addition, I had chest pain with my TOS as it got worse, which was what made me need surgery but I know that is very uncommon so I was also wondering if anyone else has had this experience. It took awhile, but doctors did confirm this was a result of TOS. I have posted a thread about the possible Ehlers Danlos connection and chest pain if anyone has more questions or has had the same experience-check it out! :)
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Hi, my name is Blu. I've had problems for about 10 years with my arms and mostly been told I have varying degrees of tendonitis. About 5 years ago I had carpal tunnel surgery done on my left wrist. That helped my symptoms some but they have come back over the last year or so. In September I catered a friends wedding and never really recovered from that. I finally got referred to rheumatologist who suggested TOS after listening to my symptoms and noticing that my pulse disappears when I raise my left arm. I was scheduled to have a scalene block done on the 18th but came down with the Norwalk virus so now I am trying to wait patiently for my rescheduled appointment on January 6th. Thank you all for being here, I've learned alot about TOS in the last few weeks from reading this board.
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Venous tos and rsd
I was finally dx with venous tos (75% mechanical occlusion of subclavien vein) feb 2011, symptoms started 12/10, in beginning were deep itching in breast that led to swelling of my arm and purple color along with the rest of typical tos symptoms. The 25 of feb I saw a thoracic surgeon who completed a first rib resection three days later. Extremely painful , had vats w/ chest tube 4 days in hospital. My symptoms never got better only worse except the color of my arm and hand changed from purple to blue/red to blotchy, I could not be touched on my upper right side at all ( sound familiar?) finally dx with rsd but lost the use of my right hand. Nerve blocks and meds didnt work. I was told use it or permanently disabled. I forced myself to use it and 9 months later begged to go back to work and did. It hurts like hell, I keep pushing forward always wondering if I have rsd or a failed surgery, fustrated and angry. Left side is beginning same symptoms. I am not on meds, the burning and stingy is the worse and second is the pain from swelling and cold hand. Who knows how I've pulled it off. Good actress? :)
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