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I'm new here.
Hi folks!
I just found this place while searching TOS and SLAP Lesion. In 2005 I was in a phase at work where I was lifting several thousand pounds a day in 30 - 50 pound increments. Much of this was removing 50# bags from pallets, placing on a cart, and relocating to shelving or piling them up in the work area. Anyway I had pain in my shoulder after lifting and throwing a 50# bag on to a shelf at or above my head. As usual I just dealt with the pain and hoped my day off would help if I rested. Nope it just got worse. I tried to report it to my managers but they were trying to get me to admit to doing it outside of work and to have my regular medical cover it. Well, after some persistance on my part they finally got the work injury paperwork going and I went to see the Company's doctor's office that they contract work related medical stuff out to. That doc said I had a strained shoulder. I insisted on seeing my own doc and she recommended MRI and a follow up with a shoulder surgeon. Work didn't want to deal with the restrictions my doc gave me and insisted my doc put me out on disability. Since then I've been on WorkerComp. Had three MRI's. One with a dye of some sort. Two were on my shoulder and one on my neck. The shoulder ones showed some slight tearing or impingment. In the neck it indicated some degenerative disc disease. The shoulder surgeon deferred from operating on my shoulder because he felt that my symptoms indicated TOS. Went and saw a neurologist and I guess it was determined that my problem was vascular. So off to the vacular surgeon. Vascular surgeon indicated I had three issues and he felt TOS surgery would be appropriate and said I might even get relief for my shoulder pain which is what I wanted releif from to begin with. To make a long story short we agreed to do TOS surgery. Somewhere in this process the Company and it's W/C insurance carrier were messing with me so I got an attorney. My attorney and the firm agreed to take my case. I'm not sure why as they will only be paid if I get some sort of settlement or pay off. My TOS surgery was in October and at this point I can say I am almost over the pain from surgery but nearly all my symptoms are still present and my shoulder feels worse. Followed up with vascular surgeon three time now. More meds and PT. He has me going back to see shoulder surgeon in a several weeks and then another follow-up with him. At this point I wish I would have known more about the TOS procedure. I'm still not sure if I'd do it again given a choice. The surgeon seemed like he knew what he was talking about and my symptoms made sense. Supposedly the vascular surgeon is one of the best at it in the N.E. The only good thing is he didn't freak out when I told I actually felt worse. I thought for sure he was going to tell me I'm nuts. I think I'm going nuts.......these pain meds aren't helping the pain much and I think they are making me depressed. Who knows????? I'm looking foward to being able to read about other peoples experiences with TOS. Take Care! |
Newby
Hi all I am new here m/51 Kentucky. I have Bilateral Thoracic Outlet secondary Carpel Tunnel. I am a Sr. Maintenance Tech. on work restrictions. No pushing, no puling, no pinching, no griping, no repetitive motion and I am not to raise my arms above the level of my heart.
I found out in Dec. that I had all of this going on with me. I feel lost, I don't know what to do about work. I set here and type this and my neck is hurting so bad that I can't feel the pain in my arms and hands. Work has been trying to put me on modified duty but everything they give me to do causes more pain. I’m fighting with work comp. I have been on Neurontin and it helps some but I am gaining weight like crazy from the meds or lack of exercise from not doing the work that I am accustomed to? I have always been in control of my life for the most part and now I feel lost in not knowing what is next. Thanks DA |
Welcome to our TOS family Love to Fish:welcome_sign:
It was great talking to you last night in chat! Hope you are feeling better today. Send us some pics of your new pontoon boat. Good luck at PT today :Good-Luck: |
new here cindyj
Hi all, I used to stop in at the old forum once in awhile to read.I was so tired of health troubles that I couldn't stand the thought of typing them out.I am 40 and have 2 grown sons and my 1st grandchild on the way in may. My hubby and I are both unable to work due to health. Just to touch a few troubles i have dealt with bladder cancer on and off for 14 years , but have benn clear for 4 years so far this time.I have severe fibromyalgia,herniated lower disc,sciatica and several other related troubles.I was finally diagnosed with bi lteral TOS 2 years ago and have been on a surgery wait list ever since. I just got a phone call today telling me my surgery will be on tuesday jan.30th!! I am really scared right now.I had myself ready for the surgery 2 years ago but ive been waiting so long that it was a shock to get this call today. I am having left side rib taken out and muscle bands cut.I am supposed to be having surgery on my left arm for a shortened tendon on feb.9th.So now I dont know what will happen with that surgery.I have beenhardly able to use my arm for many months and am losing muscle mass.I am hoping that the TOS surgery might help my am problem too,but don't know if it will with my tendon shortened.I know alot of you have had surgery, did it help??I don't even have a clue how long I will be laid up recovering .Dr. Bethune in halifax,nova scotia, canada is doing the surgery.Does anyone have any advice for me ? I am scared!! thanks for listening cindy:eek:
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Hi Cindy welcome
I hear your pain and frustration as well as your fear.
I too have had the surgery and am in canada...ontario....so I hope we can help to answer your questions. If you post a thread with your questions you will likely get a better response than just posting here...I will move your post so others will answer and give advice I hope you don't mind me doing this... take care...here always for help just private message or email me with questions or concerns we are a great bunch of people and we all love to share in each others troubles so welcome again and lets see what we can do to help to get rid of your fear!!!! Love and hugs, Victoria....gibbrn |
New name but have been around for a while...
Just thought I would say Hi and re-introduce myself. My name is Shannon and I use to post under the user name Chlobugsmom. I was living in So CA and am now in Boise, ID.
TOS is still raging only difference is that I can't find a doc out here to save my life....Mine is due to many hours of work (hairstylist) with no breaks. I am a surgical canidate but have refused up to this point. I think that's about it. Hope everyone is doing as well as can be expecting. Smiles, Shan~ |
Hello kiddos,
I am a 42 yo TOSer from the Boston area, battling with WC and constant pain. I've just found this place from a link at Braintalk. Happy to find you all again. |
My name is Lisa, I'm 23 and have bilateral tos. I had BL scalenectomy and left side first rib resection a year and half ago, and am going to have my pec minors removed in a couple weeks. I live in PA but have to fly to Denver..maybe i'll get snowed in!!! Looking foward to meeting you all...Take care!
---- "The world need dreamers and the world needs doers. But above all, the world needs dreamers who do." --Sarah Ban Breathnach |
Hi Lisa
Hi Lisa,
Welcome to the forum. I hope that you get the information you need here there are a great bunch of people here and I hope you'll find we are all very friendly..... any info we can give to help you will gladly give it ........any support you need for here for you...... we understand what nobody else truly does in your life!! So Welcome and please feel free to post anywhere and lookup information! Love and hugs, Victoria |
Hey Victoria,
i was born in Ft. St. John, BC, but moved to the states when i was young. Good to know a fellow canuck tho!!! :p Yes, its really nice to meet so many other tosers, its easy to feel like the only weirdo on the planet!!! Seems like an uber-supportive spot. Later gator, Lisa |
I'm not alone
After 7+ years of chronic, often acute and debilitating, pain I was told I had TOS and what it was and I sat down and cried. I was at a hand surgeon because I was supposed to have carpal tunnel surgery after years of wearing braces with no relief. The surgeon told me I didn't need surgery the carpal tunnel wasn't that bad and then he proceeded to move my arms around and check my pulse and stuff and finally I am on the road to being flare free. Until February 2007 I had never heard of TOS and I finally convinced my general practitioner to trust me and refer me to PT and a physiatrist. Now to find out there is an entire community of people who don't think I'm crazy I think I would like to sit down and cry again.
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Hello all. I've been unknowingly suffering TOS symtoms for many years. I've made many attempts with different docs to find out what was causing the pain in my left armpit and down my left arm over the years with frequent fears of heart problems or arterial damage. I had an episode a few days ago that I thought may be a heart attack as my left armpit and arm suddenly became excruciatingly painful. I could feel every beat of my heart throbbing yet I could breathe ok. I've had a lot of pain in my life and this was right up there with a smashed sciatic nerve and shattered disks. A trip to the emergency room followed by a night in the cardiac ward left me with an ecstatic group of doctors (apparently a proven diagnosis of TOS is rare) and a whole new page of worries. I'm glad my wife found this place for me as I've already taken solace in the words of many of you. I'm sure I'll get around to posting my questions soon but if you all don't mind, for now I'll lurk a bit.
Thanks for being here. B |
thoracic outlet syndrome
Hello all, my first day on and just want to say after fighting with doctors and lawyers re TOS or not I finally after 9 years received approval for treatment (after 2 Rotator Cuff Surgeries and entire spine treatments over the years due to a workman's comp. problem) Just want all to know that I was recommended by Kerlan-Jobe Orthopedic Group and Dr. Vernon Williams to be exact to see Dr. Jordan. I was not too anxious for the first treatment for injection in scalene muscles ? After so many years of fighting workman's comp and firing attorneys that would not listen, I WAS amazed how much better I felt. I REALLY did not want to have Botox injections (if so being in So. CA. I would have considered my face if not in soooo much pain) Dr. Williams finally convinced me and after fighting Workman's Comp throught the Courts, I received approval.
I must tell you that Dr. Sheldon Jordan is fantastic and that was "before I checked him out on the internet." I was unable to sleep laying down for many years due to TOS in both sides and left dominant and being left sided. For so many years I HAD to sleep sitting up and still in extreme pain with other body parts and with help of Lioderm patches (thank goodness they are available!!!!) Its been 2 months and of course I still have pain but with activity from a 8-9 its 4-6 and I feel that is fantastic and able to sleep again lying vertical. Any questions please contact me, comfortamI because I am constantly looking for a better way to exist and live and be happy. (Even though I have constant pressure and refussal from Workman's Comp) |
HI
I have what I believe is TOS. I am so glad I found this web site, but scared from all the things I have read. I kinda figured open me up, stich me back together and I am good. It doesn't sound like surgery is the cure all though:confused:
A quick history. I have had a tightness on the left side of my neck for a few years, making it difficult to hold the phone ear/shoulder. Also couldn't crack neck to relieve pressure on the left side. Didn't pay much attention to it, just compensated. At Christmas time, I was putting a heavy tray of lasagna into the oven. When I stood back up and took a step, I got this sharp pain on my right side- sort of in the middle of my body but near the inner rib area. It felt like labor contractions and took my breath away. The pain would make me groan gutteral, like childbirth. Each step I took to get to the couch resulted in this very same pain. Once sitting, it continued with even a minor movement, for maybe about an hour. Then it just stopped. It was gone. Weird, I thought. But over the next couple of days I started to get a pain near what I would have thought was my kidney- lower rib cage right side to the back, brother said- kidney stones, from the moment it happened. Pain seemed to confirm it. After a couple of days, with the pain getting more obvious, I went to the E.R. They did a CT Scan, said no kidney stones, muscle sprain. I didn't buy it, but whatever. Next day, Hospital calls- saw mass on kidney- get to primary dr. -asap. Go to primary dr., sets up mri and blood tests. Then proceeds to go out of country for a month leaving me wondering if I have cancer. Finally get report back, kidney is normal. Does show degenerative bone something.. Dr. says I dont know where to send you. Gives referral to gastro, and urologist. I know neither is what I need. Pain getting increasingly worse. Back pulling and burning when I walk. Goes from shoulder blade to shoulder blade across and down. Have to take constant sit downs to alleviate pain. Can't hold pocketbook or anything else with weight while walking. Can't walk for more than a couple of minutes- Pain goes from zero to 10 quickly. Can't shop for groceries- impossible. Can't stand to do household chores for more than 2-3 minutes. Cooking etc..all next to non existent. Work at desk in office, so I am good for coming in and staying put. I think left shoulder had started to give me pain before the incident- I remember thinking I strained it by trying to open a locked window at the office ( thinking it was unlocked :eek: ) Now, arms go numb when trying to sleep at night, or when holding phone to ear. Left side especially. Can't get a good nights sleep. Teen daughter is assisting in day to day things- sometimes even need help unhooking the bra. I am thinking something snapped that day over the oven, and has gotten progressively more painful. Thoughts anyone? |
just ribbin' ya
Hi, Im new at this. my name is pete. I had rib ressection on right side two weeks ago. Phrenic nerve was [damaged] now i have paralyzed elevated diaphram on right side. Anyone else have similar[complications]?
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I'm Becky...I used to post a long time ago on the BT forum, but hadn't been on here in a while and discovered yesterday that it doesn't exist anymore. Anyways - my story (the short version) is that I got a blood clot in my left shoulder, spent a week in ICU while they broke it up, only to have it re-form within two weeks. Several painful months and several clueless specialists later, I ended up with the wonderful Dr. Julie Freischlag at Johns Hopkins, who officially diagnosed me with TOS (both neurogenic and venous), and did a first rib-resection and scalenectomy. I went through 3 months of rehab following the surgery. I am now 3 years post-op, and have no problems or symptoms to report. I wanted to share my story since I know that most people who have been successfully treated don't end up posting on forums like this. :)
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Finally getting around to introducing myself!
Hi, as many of you know, I am Annie. My long but hopefully successful story is that I was diagnosed with whiplash after two car accidents in 99 and 2000. I had episodic back and neck pain on my upper right side, neck,, shoulder, and ribs, for the next eight years. Usually, the pain was not bad enough to prevent me from working, but it did get very severe at times.
In October 2006, I turned my head to the left quickly when the phone rang in the morning and woke me up, and I felt a sharp pain where my right side of my neck meets my shoulder. Ever since then, I have been debilitated and running from doctor to doctor. Got every test that you could possibly imagine. Finally, in January was diagnosed with TOS. Tried physical therapy, shots, acupuncture, and pretty much everything else you can imagine. Have been unable to work, drive, and was pretty much bed-riddden since December. Finally decided to get surgery with Dr. Sanders in Denver three weeks ago. During surgery, Dr. S. found a 1 cm long extra cervical rib that was pressing against my C7 nerve root in my spine. No doctor had seen this extra rib in any of my tests. However, I did have three abnormal EMGs showing abnormalities in connection with the C7 nerve. Dr. Sanders removed that extra rib and also performed a scalenectomy and a pec minor tetonomy. It was and continues to be a hard recovery but I am doing so much better. I cannot tell you how happy I am. I will continue to post on this site in the hopes that my story will give others hope and also that they can learn things from my case to help their medical case. This site and the wonderful people on it helped me get through the really hard times and gave me some incredibly helpful information. As always, feel free to PM me if you'd like to discuss my case. I hope this information can help others. All my love, Annie:grouphug: |
Trying to make up my mind about having the surgery
Do you think only one year of trying physical therapy is sufficient to demonstrate the need for TOS surgery?
In the summer of 2005 I was rear-ended and sustained a whiplash/hyperextension injury. I just had a lot of neck and shoulder pain for about three months, and then for the next year I had periodic problems with my neck muscles locking up any time I would overextend myself such as with exercise or just trying on too many shirts at a clothing store! I was diagnosed with thoracic outlet syndrome in the spring of 2006 when I suddenly developed what was thought to be wrist tendinitis bilaterally. Treating the wrists alone didn't help, and strengthening my upper body only made my arm and hand pain worse. By resting my now spindly upper body, I have managed to get my hand pain under control, though any time I try to build upper body strength I'm spiraled right back into severe pain. I do see a physical therapist for myofascial release and craniosacral work, which helps somewhat, but doesn't help me strength-wise. I haven't been able to type full force for a year, though I do have to type a bit when my speech recognition software doesn't work properly (I have to Dragon NaturallySpeaking version 8). I can't drive, or grasp for long periods of time. I have finally been able to do the dishes for the last couple months, and I'm just proud of that! My hands hurt every day regardless, and a lot depends on which way my head is pointing or leaning. I went to see a thoracic outlet specialist last week and he diagnosed me with arterial and veinous TOS of my left arm and arterial in the right, both of which meaning that I do have a nerve compression which seems to be my main complaint. He suggested having my first ribs remove as well as a scalene muscle severed on both sides. I'm really afraid of the surgery because of the recovery time, it seems from a lot of people's posts that it takes a LONG time and I have to get back to college. Any advice? I might post my questions elsewhere, just in case this doesn't get read. Thank you! |
Another Update
Hello Everyone,
A little bit of what I've gone through......I noticed numbness in my hands and arms way back in 1999. Me being a construction man (drywall) went to the doctor "Kaiser" they did a EMG and said it was in the good. I went back 6 months later with the same even worse and more often numbness they said the same, you must of fallen asleep on your arm. Ok 2001 my right index finger froze in the bent position, this was caused by Pronator Syndrome ........5-31-2001 that was the last day of work and yes I'm still off. I got the best Attorney in the area Mr. Boxer in Oakland his office the best Workmans comp butt kickers in the area. I had my P. S. operated on and fixed. Then the doctors started to take notice to my numdness mostly from the therapy'st notes. I had both shoulders repaired By Dr. Halbrecht in the city. My arms still going numb.... He sends me to Dr. Avery magic he is a Thoracic Outlet Syndrome Specialist and within a few minutes he said bi-lateral rib reduction and scalene muscle removal....5/2005 left side....5/2006 the right. Dr. Avery did a great job I feel great I'm still working on strength and breathing. Workmans comp has fought me the hole way. It looks like very soon I will be released for work. That was a fast version of the 6 years for me. |
new here
Hello all,
I've recently been diagnosed with TOS (officially) although I've told the docs for 3 years that I have it,LOL. But hey, what do WE know about it????? ALMOST EVERYTHING! ;) I own a horse farm in NJ and live with my husband and 2 grown daughters. My hubby is in the Air Force and flies Kc-10 refueler & both my girls are in college. I work for vascular surgeons besides on our farm. I give lessons and still ride competitively. Fortunately riding doesn't require much hand/arm strength just alot of leg pressure, balance and good posture. So riding is actually therapy for me :) . What is good for my TOS is all the cleaning involved in owning a farm! I was injured in an auto accident 10 years ago and have been getting steadily worse over the years. But what push me over the top was 3 years ago I was bringing my 1000 lb, gangly 18mo draft horse in from a snowstorm and my dog tripped me. Well, when I fell, I knocked skippy's feet out from under him and he pancaked me onto the cement floor. I was lucky he didn't kill me! I walked away with a couple cracked ribs, costochronditis and a major concussion. Only to discover the costochrondritis was masking alot of the TOS symptoms. Once the costochronditis calmed down, the TOS was very apparent. That's what started my long quest to proper diagnosis. I've done chiro, pt, massage, you name it. Meds are what get me thru the day now. ~Now here's a funny twist to the whole thing. My DAD had TOS from an auto accident 30 years ago and had surgery to correct it 28 years ago! same arm, same exact problem! THAT'S how I knew what it was. Personal experience. (Just convincing the docs to listen to me!) My dad had surgery and hasn't had a problem since, so I'm hoping for the same!:) Thanks for "listening" and having a great support forum. Mary Lou |
hello
I have visited this forum several times over the past year or so, but never posted anything. I always found a lot of comfort in knowing that I am not alone!! And that I am not crazy!! I have had TOS for at least six years that I know of, but four years of that was without a proper diagnosis. It is all a big, long story full of doctors that didn't listen - I am sure everyone else has had the same experience - and ended up with one who didn't give up!! I have had brachial plexis surgery on both sides, radial nerve surgery on both forearms, and had 6 denervations in my back. I am done. No more surgery. The pain is still more that I can live with, and the weakness in my arms quite severe. I finally quit my job last February. Since then, I have felt somewhat better, but only because I have pretty much given up everything that I enjoy. I still have a LOT of bad days, but at least now I have SOME good ones. I still get depressed a lot, really wish I could work!! It is a real comfort to know that there are others out there that have the same problems!
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The Grieving Process
Since then, I have felt somewhat better, but only because I have pretty much given up everything that I enjoy. I still have a LOT of bad days, but at least now I have SOME good ones. I still get depressed a lot, really wish I could work!! It is a real comfort to know that there are others out there that have the same problems![/QUOTE]
|Hello Karen it's not uncommon for us to feel this way after an injury. Thought this article might be of interest to you or anyone going through the grieving process. It's important for me to tell you that you are not alone. Take care.:hug: http://www.madd.ca/english/services/after_injury.pdf http://www.wpic.pitt.edu/research/depr/grief.htm http://www.archrespite.org/archfs21.htm |
Hello new friends
Greetings fellow TOSers
Vixen here from Hamilton, Ontario. Finding this forum & such a wonderfully supportive network of people with the same things is nothing short of miraculous for me…..thank you for having me. Have spent quite a few days, literally, scouring through the 39 pages of the forum & my brain feels SO overloaded, yet I’m relieved to find kindred minds, so much education & help as to what I really need to get a grip on living life with TOS. You've given me SUCH and education, my brain hurts right now...LOL Not sure where to start to tell you about me. I’m one of the rarer birds in that I’ve known about & dealt with having Cervical Ribs for 37 years (we discovered them & their probs back when I was only 13 and just becoming a budding teenager). They are bilateral with the left side being larger & more symptomatic. Back in the 80s my symptoms progressed to the point where they did a rib removal in Alberta. For many years I naively thought they’d removed the errant spare rib on the leftside. Only found out last year that it was actually a rib resection of my first rib & not the culprit at all. In January ’03 I was in a rear ender accident & they started treating me for whiplash. Treatment went fairly well with physio/chiro for the near 4 months that the insurance company approved the treatment plans. But since then I’ve fought to try to get the insurance people & the medical field to realize there was more going on here than just that. My family doctor (who I only met when I went to ER after the accident) took me on, as finding a physician in Ontario is no easy feat, sadly. So I was glad to finally have someone regular to tend to my medical needs. At the time, it didn’t occur to me that any of this “rib stuff” would be rearing it’s ugly head again. I also didn’t think to question this new doctor about his doctoring theories. Turns out we didn’t see eye to eye on many things regarding my treatment. …..chiro & pain management being the two major issues why I quit seeing him over a year ago & quit taking the few meds he’d prescribed, as the depression meds just made me emotionless. I truly think this man thought I was just crazy & making so much of all this up, as he didn’t understand it hardly at all, so surely I was some paranoid hypochondriac or something. He hated doing all the insurance/legal paperwork that was becoming evident with the lawsuit & asked me to stop having my lawyer send anything to him. I had before quitting this Dr, gotten him to refer for some neuro tests, which proved I did have something there, which then got me a referral to a vascular surgeon whom I saw last year a couple times. Of course all this guy wants to do is cut, he is a surgeon afterall, and tells me the only future I have is to remove the left cervical rib…I’m not convinced. Now I’ve known the value of treatments like physio/chiro/acupuncture from treatments I’ve had over the years. I knew that my pain management needed to be dealt with, my physical condition could be helped with other methods, even if they were only a bandaid solution (as he called it) ….but I wasn’t ready to agree to surgery quite yet, when there were other avenues. Back 37 years ago, when I was only 13 they wanted to operate & only gave me 50/50 odds of coming out paralyzed to some degree. Now in the new millennium, surgeons have progressed to him giving me odds of like 17% these days. Well, the fact is, I just turned 50 & wasn’t about to willfully succumb to going under the knife while I still enjoy some use of this arm. And I know what things I need to keep in optimum shape to deal with it all. I just can’t get the doctors/lawyers/insurance people to admit that this is all very real & I may just have an idea of what’s going with my body & what it needs. I have lived with it for a lifetime afterall. I just need them to let me get the treatments & have a life, as limited as that may be. Been off the meds for16 months…..have had NO financial support since the end of ’05. I’ve now atrophied/progressed negatively to such a degree with the chronic pain that I’ve become very depressed/near agoraphobic. I’m sure the insurance company thought (probably hoped) I’d just crawl in a corner & die/go away, but now that my savings have been exhausted, my mental state’s deteriorated terribly with this chronic pain & non treatments of any kind, I’m facing losing my business, my loft & everything I have. Social Services isn’t any help as I’ve not been “labeled” as disabled. I physically & mentally can’t take care of myself anymore in this state & yet, thanks to you's, I have found the strength & clarity to grasp my last will to fight all this. I may be in the biggest flare of my life, but I’m still kicking. I have been the victim here in so many ways. My early years in suffering from TOS has kept me very naïve but now as I approach about as low as I ever thought a person could get, I found you angels. <biggest group huggle imaginable> :grouphug: I can’t thank you’s enough. You’ve equipped me with knowledge & the willpower to fight for a better life. I wanted to introduce myself quickly while I still have a net/phone connection. But mostly I wanted to thank you’s for the empowering me with what I need to save myself. I may be offline for a while, but dangit, I’ll be back…..you’ll probably get sick of me. I’d love to hear from a few of the Canadian girls with any advice they may have on how to best crawl out of this hole. I need to know about good therapists, pain doctors/clinics, government programs that surely must be out there for someone such as I suffering with all this....I will now begin to build a strong support team. Please feel free to email me, as no matter where I end up, I’ll be checking my emails from time to time, even from the library if that’s what it takes. Again, my sincerest, most grateful THANKS!!!!!!!!!!! :hug: (and I’ve really rambled on, sorry) Vix (real name’s Becca, but most people do call me Vix in real life.) |
Hi Vix, i was just catching up and saw your post. Say hello on the main forum page as sometimes it is months until I stop in the see what is up on this thread.
Nice to meet you but so sorry that you have this monster to try and lock in the closet. There are several, well, more then three Canadians on here! WElcome, Dianne |
You Are a Bad Advertisement for Clean Living!
wow, vix, you are gorgeous! i am so sorry you are in so much pain. afraid i can relate only too well to your story but am so glad you've found us. and under tort law of course it makes NO difference, the fact that you have congenital C-ribs or a history of TOS insofar as any settlement or adjudication of your case goes re that car accident. so make no mistake about that.
i am sure some of your fellow canucks will be chiming in here soon enough and, hopefully one of them will know a good lawyer to steer you to with a good working knowledge AND a track record of winning TOS cases, becca. it's tough but it can be done. i'm just a stupid american and don't know the laws up there or the social services systems, etc. but gosh you're in a tough spot, it sounds like. so hopefully GIBBRN, JAMY, RACHAEL, MUCKER, HAIRDRESSER, and others will see your post up here on this thread and be able to advise you either on the attorney front or on the insurance or assistance front. at the very least, one of us yanks (not me, i'm a near computer illiterate...:D) can at least copy your wonderful introduction post down to the main part of the forum where more members and lurkers alike will see it, vix. that way we can get you the help you need... and just as key - you have so much to offer here, with the life experience you have with the TOS monster...:eek: would that it were not so!!! but i do have some information for you, which i gleaned off of the sorehand list (http://www.ucsf.edu/sorehand/), comprising responses to a fairly recent post from an ontario librarian suffering from an RSI who was desperately seeking medical tx. a woman named catherine fenech responded (catherine is the founder, apparently, of international RSI awareness day), as did a poster named peter ryley. i believe both of them live in the toronto area. at any rate, dr. heather tick is very highly recommended and apparently patients come from all over canada and even europe seeking tx with her. her website addy is: http://treatpain.ca/rsi_clinic.html and she is the director of the RSI clinic there in toronto. dr. chong was also mentioned, although it is thought that he is starting to restrict his practice almost exclusively to musicians at this time. he does intramuscular stimulation (a form of acupuncture) using lidocaine. dr. tick does it without lidocaine (dry needling) which according to dr. chan gunn is much more effective in getting the trigger points to release. peter came up with dr. gordon ko (http://www.musclepainrelief.ca/html/dr__gordon__ko.html) out of sunneybrook hospital, who also has an office in markham - but just be aware it can take a good 6 months to get an appointment with him. { try this link to get above info - http://www.musclepainrelief.ca/ } if you sign up for the sorehand list (which is free) you will have access to its archives. sharon butler subscribes to that list and you will see her post every now and again; her website i believe is www.selfcare4rsi.com or something to that effect. or just google her name and she should pop up that way or you can use the search function on the TOS forum (upper righthand portion of your screen...). now i do realize that your TOS was not caused by a repetitive strain injury, becca. mine was not, either. but don't let that put you off. the sx and the tx are the same. just as the surgical interventions are the same (but we ain't goin' there yet, right?) and good for you for going easy on the meds, too... but please don't be a hero. i just hate to think of you suffering unnecessarily. really wish you the best with finding a most excellent doc and PT -- STAT!!! i have lived with a raging case of true neurological TOS since just a few years out of high school, which unfortunately was misdiagnosed for many, many years before i finally found competent docs and the right PT's and other types of practioners to start getting real help (i'm a few years older than you now:rolleyes:). so i know what you're talking about with the out of control pain levels, the atrophy and the nerve damage, jax. this takes heart and it takes courage to get through. but the way i look at it, if TOS is progressive, then so are those things, right? they gotta be. i can tell how strong your spirit is. ice (if you can tolerate it) and a sense of humor don't hurt either. if there is any way for you not to lose that internet access right now i think it's going to become extremely important. and i know you have a great deal to offer here too. we need you here. stay close. "a positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort." herm albright (1876 - 1944) :thud: :Good-Luck: :Cowgirl: :welcome_sign: alison "Be Brave" |
dr ko
I was supposed to be referred to him!!!! Just as I was leaving Ontario of course the recommendation came down for me to see him for botox treatment........wow Alison can't believe you have that site...link doesn't work by the way....:rolleyes:
take care love and hugs, Victoria |
I Think I Copied It Wrong...
yeah, victoria - hey if i'm not mistaken that might even have been the one i emailed you about, thinking you might know of some people in ontario that could help the librarian in distress... but the sorehand folks ended up coming through for her in a major way i'd say!!!:)
i think the mistake i made originally in trying to put up dr. ko's link was, it somehow is trying to read the parenthesis at the very end as part of the addy. i didn't realize that at the time though, and knowing it wasn't working, i tried editing it to make the 'underlines' in the addy longer, which also didn't do the trick. now it's too late to edit it. but if you recopy it with just a single underline in both spaces where that appears... being careful not to let it grab that last parenthetical - i think it might work. ain't hindsight grand, victoria? mine is at least 20-20!!!:D but i still think the lady doc got the most votes of confidence and if it were me, i would try her first... in a TOS heartbeat!!! plus which, her clinic looks to be pretty full-service - always a good thang. and no 6-month wait list. what TOS'er can sit around in pain for 6 months... oops i forgot whom i was talking to... sorry about that. the problem with being on a CP'er wait list for a pain clinic like you, unfortunately, are up there in calgary my love, i believe is that we are among the strongest people on earth. we outlive our co-dependents by a longshot, as well as our docs, our PT's, and the rest of the lot of 'em. so ya truly DO have to wait. it's not like CP kills you (just some dayz maybe we wish it would...:(). oh. i did NOT say that! fortunately, no one reads this stuff up here!:D better still, victoria, i've a feeling you know what i meant (and you know me by know. i'm kinda sick that way!:eek:) alison "Be Brave" |
TOS/WC combo mess
Hi All~ I am guessing this is how I enter into the TOS forum?? I have been in pain since 9/2005 and continued working until 5/2006 not knowing what was wrong. 5/2006 went on med LOA and continued seeing docs at Kaiser for headaches, pain in shoulders, arms, elbows, wrist and hands, my ears started ringing and I have had a hearing loss (now 3), I have fullness in my head when I get up from a sitting position and sometimes from just turning my head. Kaiser did MRI's and found I have a bulging disc in C 5-6 some in 3-4, so they concentrated only on my neck gave me a few steroid blocks but ultimately couldn't find anything wrong with me for the symptoms I was posing to them. They all but thought I was nuts and offered all kinds of meds which didn't help. We dumped Kaiser in 12/06 and Jan. 07 went for my first visit to Kerlan-Jobe in L.A after 2 visits it was determined that my neck wasn't the issue and TOS was suspected. I had a Brachial Plex. MRI which confirmed the TOS. PT is too painful for me so I have stopped it. The docs won't give me meds, only sleeping pills as lying down on my sides is painful and both arms go numb and fuzzy... I most recently was referred to Dr. Ahn in L.A, he wants to do the rib resection surgery, I opted for bilateral scalene Botox injections (if I can get some info on them). I am presently getting acupunture and looking for someone that does medical massage. WC is a whole different issue, it was brought to my attention in Jan. of 07 that I should have been on WC since I went on LOA in 5/06, so I filled and boy did that open a can of worms! Of course I was denied and had to hire an attny. I am anticipating a QME in the near future, all the docs picked were orthopedics???? Shouldn't I be going to a Thoracic Specialist? Can I fight the attny on this?
I don't know what to expect anymore, my body is tired and in pain 24/7, I have no meds, not enough info to make a decision, and frustrated with the docs, WC and the attny!!! I can see why people throw in the towel. On a brighter note I love this site and have aquired some great info and only wish I had found it sooner. Any advise or info is greatly appreciated. Sorry I rambled on but nobody gets it except you guys. Thanks! Mimi |
Social Security Disability question-mental exam tomorrow
My attny suggested I apply for SSDI and I did and have been seeing their docs at my caseworkers request. I now it's short notice but tomorrow I have a "mental exam", yes, a mental exam????
Can anyone give me a heads up on that? Thanks. |
Welcome Mimi
Glad you found your way here. As one of the newer ones too who just recently found this great group of people, let me greet you with a welcoming :hug: (carefully given, of course)
Wow, you've been through a lot in a short amount of time in comparison to my own story. And while there's so much that I'm just learning, I can't really offer much advice when it comes to the medical/legal/governmental fields (trust me, I struggle vastly with them all too....think most of us do for longer than anyone should have to). But I will offer one piece of advice that was given to me early on when I first posted to this thread for intro.... Copy/paste your posts over into the regular part of the forum (underneath where the sticky notes & links & this part are) with your own start of a thread....that way more of the great people that wander the TOS halls will have a chance to see it & get to know you & be of such support, it'll blow you away. It sure has me....they are all truly angels & so helpful, sincerely supportive & just better than friends/family because they all understand like no others can. I wish you all the very best & again, welcome, Mimi :welcome_sign: |
New to site. Crazy year! Glad to meet ya
:winky:Hello all! I am so glad I found this site after a year of no one knowing what was wrong with me. Seems like a great community. I know most of you probably have stories like mine :)
I started having symptoms 1 year ago. My chest muscle would spasm. It didn't hurt. Then my arms starting numbing and being in pain. Then my chest hurt and felt like a bone was out of place. Muscles spasming from place to place. I would wake up at night shaking for 10minutes. I assume a nerve was to blame. They thought it might be my heart but it was not. That has passed but I still have terrible pain and numbness from time to time. My muscles going into my neck feel so tight and pop. I hate the numbness too and i think it is responsible for my stomach swelling too. I get dizzy and cold feeling in my head at times and forget trying to install a stinkin light or do anything above my head! My shoulders will kill me. My chest is sore to touch and the nerve on my underarm hurts like heck at times too. PT and chiro finally helped relieve constant pain. The wierd thing is that muscle relaxers and hot baths help the most. Why is this TOS'ers? Ok, thats my problem. Glad to meet you all! |
Hi Thunder
Hi and Welcome!!
We all do have our stories some longer than others.....you are in the right place! Hope we can help....I suggest starting a thread on the main board to introduce yourself and get help if you need it..... I too find a lot of relief from heat and muscle relaxants....hence my thought thtat my tight muscles from an injury I got at work lifting a patient up from a toilet (nurse) and hell from then on. Are you getting the right medical care?? Vascular inquiries to see if it is vascular??? Neurological issues....need neurologist??? Just thoughts...post a thread and we can get on top of some issues glad to have you and welcome to a great community. We are multitalented and have a vast range of knowlage....so post away and feel welcome...oh and no dumb questions!!!!!!! love and hugs, Victoria rn:hug: |
Hi everyone!
I'm new here and pretty new to this whole TOS thing as well. I was diagnosed with venous TOS (effort thrombosis) almost 5 months ago - since then I have been hospitalized, undergone more medical tests, treatments and procedures than I care to even mention and had one rib resection surgery. Funny how life works, one day I feel fine the next I'm laying in ICU. The good news is, I'm fine once again.
Sorry to see so many of you going through this. Although, many of our situations are different, I'm here to offer support and encouragement to anyone who needs it! |
welcome Mtnmom :) glad to have you among us...and hopefully your surgery helped you?
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HI there!
Wow, I am glad to find this site. I have gotton to the point where I really need to talk/hear what other's have to say. I kept thinking that if I joined a chat board, I would end up obsessing or negative, but here I am and I am happy. I am 33yrs old. I have TOS, had rib resection in Apr 06 after 2 mva's, May/Nov 2004. They took the 2 branches of scalenes on left side also. Not much into typing tonight as the whole reason I was searching was b/c I am sore from foldig half a load of laundry and utterly frustrated. I was happy to see that I am not the only one who cannot do so many things. One girl posted she cant shop or do anything with arms, that is me, everything triggers it and I am dealing with people that dont understand it. So, here I am and thank you for a great site, I will definatly pass it on to my clients who suffer pain also as I teach pilates rehab. MAny thanks, Michelle---did I post in the right spot?? LOL, sorry, new at this |
welcome fellow Canuck
Hi Michelle,
Welcome and yes you are in the right spot. When you are able try to post a new thread in the other part of the forum and we can see about docs....therapy and any other issues you have let it out we are here to help and we are here to make sure you DO let it out we are great at listening...we have no choice....we all read but may not post.....some are more functioning than others, but all know the hell of TOS!!! Welcome to our happy family......sorry you are part of it...but we all somehow manage to continue...... love and hugs, Victoria:hug: |
the link to michelle's copy of this on the main TOS forum -
http://neurotalk.psychcentral.com/sh...ad.php?t=31048 |
Hi...I'm new here
Hi. I've been lurking a while and decided to join. My son was diagnosed with venous TOS about a month ago. Since we are close to Hopkins, I talked to Dr. Freischlag's office and they got my son in immediately. He is only 10 and her youngest ever patient. Dr. Freischlag said my son needs surgery. I was just wonderinghow other people made out with first rib resection and/or Dr. Freischlag. It's been comforting to know that we are not alone out here.
Hope to hear from you soon. |
I've heard good things about Dr Julie Freishlag. Good Luck to you and your son! :hug:
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New here - not yet diagnosed
Hello All :)
I am very new here, and to TOS as well. I am not yet diagnosed. I would like to tell my story, because I am scared and feeling very alone right now. IF you'd like to read it, I welcome comments, opinions, suggestions and your experience. Here goes... Years ago I was a high school cheerleader and pom-pom girl...this was 1990 so picture big bangs, frosted lipstick and jelly bracelets. I was performing a routine to the classic tune of "Can't Touch This" by MC Hammer ;) when one of my bitchin' moves knocks my arm out of socket. That is the kind of injury that you can't help from just poppin it right back in. I kept cheering cuz we were winning, I was co-captain after all. Fast forward to the turning of a new millenium. The whole family gets in a 45mph car accident....our Tahoe versus the 1997 Nissan Sentra. I had moderate neck and shoulder pain for 10 days after that. Between 2000 and 2007, I had what I call "episodes" of shoulder and neck pain. Sometimes, I'd sleep wrong and my hand and/or arm would be numb upon waking. These episodes typically lasted a week to ten days, with moderate pain until I went to the Chiropractor. His adjustments helped tons. So much so, that I never went to him for his recommended follow-ups. I only took the time to go to him when the pain got bad. He consistantly suggested that I make weekly (or more) visits to correct the issue with my neck and posture. Now comes the divorce. My husband of 12 years leaves, all kinds of bad things happen to my family; financially, emotionally and otherwise. Before the demise of my marriage I was self-employed, able to contribute to the finances of our upper middle class suburban home in various sales jobs and MLM success. After he left, not only was I depressed, but my three children and I were completely destitute. In a matter of 6 months, we lost the house, the car, and our dignity. After trying car sales and making no money (can anyone say recession?), just over two months ago I took a job as a waitress working third shift (9pm to 7am) at a diner style restaurant called Steak-n-Shake. That's when things went from bad to great to worse. The "great" was that I loved the job. I loved interacting with people, helping them and being a good waitress. I took pride in my work, cleaning and stocking and waiting on people, repetitive motions on that shoulder and neck. I made pretty DAMN good money too. Not rich-type money, but a decent take home to survive. Then the numbness started. The "worse" was that after about a week of serving glass after glass of tea, cokes, coffee, shakes, chili, burgers, etc...I started to frequently awake with the fingers in my left hand tingling painfully and "asleep". I figured I was sleeping on my bad left shoulder and tried to ignore it. Another month into it, I was taking as many hours as I could, working 10 days in a row frequently. The money was needed and earned doing something I loved, but the numbness was creeping up my left arm, and sometimes woke me in the night. Now, for the past five days...I wake up, and my whole left arm is numb, except for the burning pain in my inside forearm. From time to time, the right hand has numb fingers as well, but never as bad as my left. So I Google "numb fingers pain" and wind up on some forum (don't remember which) where a poster suggests TOS to an inquiring mind. I look it up, and read the smptoms, my jaw dropping. The poster was supposedly a doctor at one of those "ask a doctor" sites and he recommends that I list my symptoms to ensure a proper diagnosis. So I have. I've listed them below because I want to know if my symptoms are similar to what you all feel...and how on earth we are supposed to deal with the pain (exercise? I really hate exercising). Again, your comments are welcome.
What I have tried (five days into the extreme pain):
MRI Results:
Thanks for reading. :) Glad to meet all of you, Dena |
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