[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

[shib]

Dental Hygienist many many years!!! loved it to much.
bilateral CT surgeries 83 & 98
MGH for TOS rib resections RT 2000 & left 2001
left Shoulder 2003 and years of PT
lost career and live with recurrent TOS every day!

[Struggling Artist]

I have been 'stalking' this site for almost a year, since November 9, 2012 when my school nurse pulled me out of class and took me to the ER. A few days prior I woke up with my right arm slightly red and it felt like I slept on it. I took it easy for a few days hoping that would solve the problem. Instead, it got worse and the symptoms became more intense. I started to see little bruise areas showing up, my arm became sore to touch or raise up, and it started to swell. By November 9th I showed my coworkers my arm; since they both coached high school sports they had seen a lot of injuries. Both thought it was a torn muscle. I asked for the school nurse to come to my classroom and take a look at my arm. She showed up and immediately requested a substitute teacher for me and drove me up to the ER. They diagnosed me with a blood clot going from my brachial to my subclavian veins and I was admitted to the hospital for 3 days till my INR was correct. I am an athletic 31 year old female. I teach art and enjoy backpacking and gardening. I am a non-smoker, don't take birth control, or fit any other criteria for getting a blood clot so young. I live in a small town and I am learning that many doctors here are unfamiliar with TOS and because of that I was sent home on blood thinners and a check up with my GP. After switching to an internist and receiving 3 more ultrasounds due to ongoing symptoms, I finally received a referral to a vascular surgeon (I don't have any blood disorders that would have caused the clot). He spent some time talking to me and agreed with my research that I had tos. Even though I have always been an active individual, it has only been in the past 3 years I have started using my upper body. I bought a 100 year old house and have been renovating it myself. All the pieces finally fit together. Throw on top of that poor posture and I seem to fit the description of vascular tos to a 'T'. I have seen an orthopedic surgeon, neurologist, countless imaging, and physical therapy including manual manipulation, my surgeon agreed to the surgery. Contrast MRIs showed vein occlusion bilaterally when both arms are raised. The University of Utah will not do a rib resection on my left side until it gets a blood clot as well. I can't imagine living life wondering when the next clot will happen once I am off of Lovenox so I made an appointment in Denver to see Dr. Sanders and his associates. Recovery is harder than I expected it to be. I know most of you can understand how isolated you start to feel going through this. It takes so long to get the diagnoses, I was lucky it only took a year. My mother died of a pulmonary embolism due to a broken ankle, so this adventure has been very anxiety causing. I wake up feeling decent and by the end of the day my arm is throbbing pain radiating from my arm pit and circling around my shoulder from top to bottom and radiating into my elbow, down my forearm and tingles into my pinky. I feel distanced from my friends because I can't do much with them and I don't want interact when I hurt this much. It's no win. I can say that this has caused just as much pain mentally and emotionally as it has physically. To go from a 6 day a week hiking routine to not being allowed to lift more than 2 lbs. is a struggle.

[Jomar]

Originally Posted by Jo*mar

It will help for others that might want to reply if our new members make a thread of their own.
Main TOS page with threads listed -
http://neurotalk.psychcentral.com/forum24.html

Post here if you need help making a new thread.
Our site FAQs with help on basic forum use & posting -
http://neurotalk.psychcentral.com/fa...b3_board_usage

Bumping up for our newest members..

[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.

[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.

[radtech]

From my screen name you can tell that I am an xray tech aka radiologic technologist.

My symptoms from a work related injury have not resolved as they should have with the treatments I have had, so I am being referred to a neurologist for nerve testing. The docs I have seen so far are suspecting brachial plexus involvement.

From what I have been researching about TOS in the past few days, my symptoms are classic and also atypical TOS. My specific work injury and also the specific work tasks/postures/physical exertions in awkward position with mostly overhead work would seem to fit the profile as contributing factors.

It is kind of worrisome to speculate this diagnosis. I hope this is a condition that can be cured with conservative treatments so that I am able to return to my chosen profession. I am to old to retrain for another career.

Are there any other xray techs here who have TOS and have quickly returned to work?

[blue129]

Hello all...

I have an appointment at the end of this week with Dr. Lam at Johns Hopkins for testing and evaluation for bilateral TOS. I have a few complications which will not help, such as Ehlers-Danlos Syndrome and cervical issues. In looking back, I think the symptoms have been around for awhile and I've just been blaming them on my bum neck and they are progressively getting worse. My PT is the one who figured out that TOS might be to blame instead, and my local ortho agrees, so off I go to JH. On my right side, I have a malunion clavicle due to a car accident years ago; on my left, the only thing I can think of is that I took several blows to the brachial plexus back in 2006. At the time, it caused loss of vision fields in my left eye for several days and a headache; after CT scans, etc. were done the final diagnosis was opthamalic migraine and "bruised" carotid. It seemed to resolve, so not sure if that's even the issue or not.

Thanks and I look forward to learning from you all!

[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