[16rhonda]

Lt. Sided 14 mos. Postop for Costcotransversectomy, 1st Rib Resection, & Neuroplasty. Dr. Donahue at MGH did my surgery. I agree w/ others here, he is most intelligent, compassionate & understanding Dr. I have ever had. Took 8 yrs. & ELBOW & shoulder & neck surgeries bf I was finally diagnosed w/T.O.S. by Dr. Donahue. Im debating when to have Rt. Side done. Too much PN pain, Bilateral Carpal tunnel, Bilateral Tarsul tunnel & Peroneal nerve compression, which I had surgery for in Dec. W/Cont. Pain & numbness. I was wondering if anyone here has extra cervical ribs?? my Dr. Says its very rare. I also still have chest numbness from surgery, which Dr. Says is very rare, most people its better by 6 mos. Postop. I guess my nerves are very sensitive to pressure.

[parbie]

Originally Posted by 16rhonda

Lt. Sided 14 mos. Postop for Costcotransversectomy, 1st Rib Resection, & Neuroplasty. Dr. Donahue at MGH did my surgery. I agree w/ others here, he is most intelligent, compassionate & understanding Dr. I have ever had. Took 8 yrs. & ELBOW & shoulder & neck surgeries bf I was finally diagnosed w/T.O.S. by Dr. Donahue. Im debating when to have Rt. Side done. Too much PN pain, Bilateral Carpal tunnel, Bilateral Tarsul tunnel & Peroneal nerve compression, which I had surgery for in Dec. W/Cont. Pain & numbness. I was wondering if anyone here has extra cervical ribs?? my Dr. Says its very rare. I also still have chest numbness from surgery, which Dr. Says is very rare, most people its better by 6 mos. Postop. I guess my nerves are very sensitive to pressure.

Hi, I have extra ribs and had surgery on my right side almost 10 months ago. It was unsuccessful. I was wondering, why did Dr. D remove your first rib but not your extra rib? Did he not feel it was causing any compression? Did you have any bands attached to your extra rib? Sorry for all of the questions but I am considering a second surgery and Dr. D is on my list of potential surgeons. Thanks

[marlalemons]

Just wanted to say hello for now. I'm new here. Recovering from first rib resection, post-op 18 days. Dr. Daniel Clair, head of Vascular Surgery, at Cleveland Clinic did my surgery and I am very very pleased. My best piece of advice is to take at least 3 weeks off of work if you have first rib resection surgery. I tried to go back a little short of 2 weeks post-op, but was not a good idea. The longer you can rest and be under very low stress, the better for your recovery. Will write more later when I have time.

[Biologybrain]

Hi y'all! I'm 32 with a host of horrible physical & mental problems that all started with a breast cancer diagnosis at age 28 while 20 weeks pregnant. I did chemo while pregnant, delivered a healthy baby girl. I did more chemo afterwards & got PN from chemo. My brain never covered from the chemo-brain or preggo-brain.

I had a bilateral radical mastectomy with implant/expander reconstruction & began having intense pain/heaviness in my chest and collar bones. I went from dr to dr trying to find someone who'd figure out what was wrong with me. I had 2 more reconstruction surgeries in the hopes of 'curing' the increasing pain to no avail. The last reconstruction used abdominal fat to reconstruct my breasts & left me with a huge sensitive scar 2/3s of the way around my waist.

In between I had both my ovaries & tubes removed (I'm a BRCA1 mutant) & almost bled to death on the table so I had transfusions. After that surgery I had an abscess form on my uterus where the tube was removed & had to have an emergency hysterectomy. Now added to my chemo-brain & mommy-brain I also have menopause-brain.

With menopause I got terrible hot flashes that give rise to panic attacks. I also suffer from anxiety that I'll have another cancer diagnosis or something else wrong with me. I'm 5th generation (that we know of) with breast/ovarian cancer, but only the 2nd to survive. I guess I'm probably depressed too because I used to be an avid horseman, but now I can hardly groom a horse, much less care for one and exercise one. I used to be fairly athletic but also nerdy (I love to read and I love science). Between my inability to physically do things and my brain's lack of clarity, I can't enjoy the things i used to because I simply can't do the things I used to do. I lost my job in January and that was a severe blow to my self-confidence, self-worth, and identity.

It is theorized that during my mastectomy and the placement of my expanders, my brachial plexus was damaged somehow. I went from dr to dr (including a quack pill-pushing pain management dr) trying to alleviate the pain, burning, tingling, numbness, coldness, and loss of control of my left arm. One dr finally ordered vascular studies that showed impairment on both sides, but much worse on the left. An EMG again showed impairment on both sides, but worse on the left. I did PT for over a year. In the middle of PT, since I wasn't improving, I had a first rib resection done. Following more PT, I was basically told I knew all they could teach me, so I no longer went to PT.

In January of 2013, a little less than 4 years after my diagnosis, I was fired from my job with the main complaint being that my attendance was poor. I had FMLA intermittent leave, but my bosses were no longer empathetic. Even after being forced to submit to an exam by their own dr (who agreed with my dr about my condition), they gave me the bum rush out the door on trumped up charges. I didn't fight them any longer bc they were the state police & I was just a civilian laboratory analyst. However, I had completed almost 9 years with only commendations from law enforcement, attorneys, and co-workers. Upon my return to work and intermittent FMLA leave, I became a pariah and even my co-worker friends were harassed for being friendly with me.

My husband has disability due to a chronic low back problem and severe anxiety. We have 2 children (boy/5 & girl/3). With my job loss and his fixed income, we are constantly in the red, so I'm trying to file for disability myself.

My TOS makes driving nearly impossible on bad flare-up days. Sometimes my flare ups make sense (I did something to my arm the day before), but it seems like more often they are random and/or associated with weather patterns. In addition to the 'normal' symptoms with TOS, I get killer migraines. I don't experience vision problems with my migraines, but I do suffer from nausea, vomiting, light sensitivity, stiff neck, eye pain, and sinus pain. Sometimes the pain from the migraines & TOS combined knock me out of the land of the living for several days.

I have an adverse reaction (suicidal/homicidal ideation) to Neurontin & Lyrica. I currently take amitriptyline, hydrocodone, and cyclobenziprine in addition to a daily multivitamin. I also have asthma, so sometimes I use my inhaler (albuterol) & my migraine problems decrease slightly. OTC pain relievers and anti-inflammatories don't touch the pain of my TOS or migraines typically. I also know I'm at minimum heterozygous for a mutation in the MTHFR gene. I've tried a few different b-complex vitamins OTC, but never noticed much difference.

Between having all the above symptoms plus 2 very active & healthy (Thank God) children, I'm constantly exhausted. My chronic insomnia (life-long issue for me) only feeds my exhaustion. I recently filed for SSI disability, & go to their doctor/Chiro for an assessment on Saturday (8/10/13). I also have a forced appointment with a psychiatrist/psychologist later this month to assess my anxiety problems. I tend to put a positive spin on my condition(s) with others (even my husband and mother complain that they don't know what's going on for real with me & how much I'm flaking being ok). I'm terrified that I'll blow the assessments by de-emphasizing my problems with these new doctors.

Sorry this was so long, but as you can see I had a lot to say. I look forward to 'meeting' y'all and hopefully giving support to others as I get support from others too.
Thanks,
Erika

[Cgrieger]

I am 33 years old am married and have two children (5 and 7) and have Been fighting what seems like TOS since July of 2009. I was working 15 hour days at a computer for a solid decade in a completely non ergonomic setup and symptoms progressed to the point where at my worst I could not even brush my own teeth or hair. I went the Workers Comp route and played the Dr shuffle game with a young neurologist mentioning I potentially had TOS and prescribed PT which helped moderately. WC than bounced me around to a local orthopedic hand surgeon, rheumatologist, and physiatrist after kicking me around for about six months with the local physiatrist they sent me to a month long pain rehab center which issued my Maximum Medical Improvement and permanent impairment rating which basically kicked me out of WC disability. I live on Lyrica 150 TID that and exercise make things tolerable at times. I have been back to work since spring of 2011 at a much slower pace than I used to usually 8 hours or less. Starting earlier this year My symptoms began to escalate and it feels like Déjà VU. I seem to be racing towards being unable to perform my job and disability again however with my MMI and PI I am pretty well excluded from WC. Even with the Lyrica at this point I am not able to drive more than short distances and all tasks seem to be difficult. I am looking to find a Dr familiar with TOS and similar conditions to examine me and recommend studies to identify the causation. If I am a candidate for surgery I am ready I have a lot of life ahead of me and 3 people that depend on me and if there is anything that can make this better I am willing to do it.

[shop2apples]

Hello All
I have been DX with bilat TOS for several years now and I 'm finally scheduled to have left rib & scalene resection this month. My surgeon will be Dr Braun in San Diego does anyone have any helpful hints that may give me an idea as to what I might expect post-op short and long term? Any suggestions and experiences would be appreciate. Although my surgery is near I am unsure as to so many things, I've been unsuccessful in communicating with the surgeon so at this point im not even sure where my incision will be, how long before ill be unable to drive and so forth makes planning almost impossible.
I've also noticed that my symptoms have been getting worse. I'm not sure if anyone has had any of these aside from the nagging burning pains, headaches, stiffness, cold extremities, swelling, anxiety etc.
what is starting to concern me is my increasing cardiac palpitations, vertigo and brain fogginess. Sometimes oftentimes I cant think of the correct words and say things backwards. I can describe it as almost what I would imagine a combination of ADD and dyslexia with poor speech and grammar making it difficult to communicate effectively??? I used to think it was the medications making me foggy IE Norco & soma but Ive decreased them both and nothing has changed I've actually gotten considerably worse.
I'm a student and I've been going to school for over 4 years doing well & now neadless to say Its gotten to the point that I'm failing in school due to poor memory, and no attention span. I'm also a Mom so I've always corrected my Kids' speech and being that they are now teenagers they are pretty good at returning the favor and half of the time I don't even catch myself saying things backwords or slurring my words just yesterday I was attempting to explaining arterial blood vs venous to my 13 year old and I said something like there is "air in the oxygen". Stuff I've been able to do for almost 20 years without a problem is now a challenge.
I've been told my bloodflow has been compromised due to decreased venous return and I get the correlation but will this return post-op? and how quickly?
Does anyone have similar experisences?
I expect to have some lifelong physical limitations but I'm really nervous and frustrated about adding stupid to the list.

[Deborah T]

I just want to put in a word of encouragement for any of you in need of the TOS surgery. Please, don't be afraid! Find yourself a competent, caring, and EXPERIENCED doctor.

I was fortunate enough to have found Dr. Avraam Karas in Baltimore, MD. He's done well over 2400 of these surgeries. He said on a scale of 1-10, I was a 15 on both sides. And I'm here to tell you today, 9 days out from my 2nd surgery (one on each side) that I don't think I could have continued to go on if I hadn't found Dr. Karas. He literally gave me back my life! I am 58 yrs old and have suffered for over 20 yrs, and had been misdiagnosed as everything from fibromyalgia, to just generally being a nut seeking attention.

Turns out I had a real, and very painful condition that could be corrected. I am able to fully use and freely move both arms, without even a hint of pain. And I had literally lost my pulse in my right arm. So please, if this is happening to you, get out there, find that special doctor, and if you're in the MD area, look up Dr. Karas before he retires! He's not only a fabulous surgeon, but a warm and compassionate human being! Thanks Dr. Karas! And thank you Dr. Harvey Pats for referring me to him!

[kyoun1e]

45 year old male here with a wife and child. Live south of Boston. I've had two bouts with NTOS, the first about 3 years ago on the right side and currently on the left side.

I've been very active physically for years. Love working out. I'm about 6'2" 190 and consider myself in very good shape for my age. Unfortunately, it seems that this activity has triggered both of my TOS episodes.

My first experience started with what I thought was a simple shoulder injury. MRI was inconclusive and was told to do rotator cuff exercies for 4-6 weeks. The situation failed to improve and worse, my shoulder "impingement" pain turned into more of a burning pain on my scapula. For what seemed like months I kept trying to explain this pain to doctors, physical therapists, etc., but nobody really understood. I battled for months and then just decided to throw in the towel and have shoulder surgery. And then almost immediately after I made the decision, I had excruciating pain at the elbow due to ulnar nerve compression. Surgery cancelled.

This triggered a journey to visit doctors of all kinds...which seems common with us all. Neurologists, Neurosurgeons, more orthopedics, accupunture. Probably visited 15 different doctors. I was just about to basically give up and come to grips with the fact that I'd just be in pain forever when I decided to make one last call to a Dr. Kasparian at Lahey clinic. Almost immediately upon examination, Dr Kasparian indicated that I may have "transient thoracic outlet syndrome." He felt that my TOS was due more to hypertrophy of the scalene muscles because of working out. Many tests followed and an MRA revealed that my subclavian artery, on both sides, was being pinched by the scalenes. In Dr. Kasparian's words, "it was the real deal."

So at least I knew what I was shooting at. It felt great. I was then routed to vascular surgeons at Lahey. They found a "bruit" on my right side and felt that I should have surgery IMMEDIATELY. I was suddenly scared and felt a need to get 2nd and 3rd opinions. I searched high and low, found these message boards among others and somehow was lucky enough to find Dr. Dean Michael Donahue at Mass General. CT Scans were done and it was here that I found out that I was one of the lucky ones with cervical ribs. Dr. Donahue was hesitant to jump to surgery since I had managed the symptoms pretty well so he recommended botox. I received the injection and I haven't had issue on my right side or other since...

...until now.

Per my recent posts, I'm now experiencing symptoms on my left side. A throbbing neck, forearm, and hand pain has been with me since mid December. Most recently, this pain has been replaced with pins and needles. I'm doing a lot of therapy on my own and it seems like symptoms have diminished a little. I visited once again with Dr. Donahue who recommended another botox shot. This was done about a week ago. I'm hoping for the same results, but so far, no real improvement. Crossing fingers.

KY

[QueenChloe]

My symptoms started three years ago when I was 20 years old. I had horrible shoulder pain and instant headaches from pressure on the many knots in my shoulder. When I turn my head I instantly get dizzy and feel like I'm in a daze most of the time. Due to school I had to carry a lot of heavy bags, but it got to the point where after wearing even a very light purse I would get a frantic overly tired feeling in my shoulders and arms and would have to sit down to relax my shoulders. I recently saw my doctor for my shoulder pain and had xrays and venous ultrasound. With my arms at 90+ degrees I had no blood flow to both arms. The believe I am having muscle spasms/knots/tightness in my shoulder from the lack of oxygen to the muscles.

Dr. Lum at John's Hopkins wants to do a rib resection and scalene muscle snip. Currently doing physical therapy to help get rid of the MANY knots in my shoulders to help with that pain which seems to trigger everyday headaches and frequent migraines. Both arms are swollen, left shoulder/arm a lot worse than right. My case is a little more complicated since I have a blood clotting disorder so they are watching me closely. Unable to carry anything on my shoulders, or carry heavy bags in my hands.

[Searching2]

I have no diagnosis because my symptoms are not specifcally pain. The more I use my hands or stand or walk the more my back tightens up.

I have to sleep with my arms bent in front of me or I wake up with tight/torn muscles in my back or glutes.

I tried holding my arm out straight and moving my fingers back and a nerve pulled under my arm, it was then uncomfortable to use the arm for about 2 weeks

I wake up with my ring and little finger numb on either hand

My shoulder blades will spasm or my lats muscle will tighten seemingly depending on the position of my arms.

I am being treated for terrible head forward shoulder forward posture, but no diagnosis.