Hi, everyone! In the interest of introducing myself, I decided to follow the advice in the "post your history" thread and post my own thread. I'm not sure how in depth the introduction should be, but here goes!

I am a 26 year old female and I have recently been given a diagnosis of n/aTOS in my right arm as the result of a cervical rib. In regards to the neurological component, my ulnar nerve is primarily affected, but the radial and medial nerves are also involved. My symptoms began before I can even remember. I have always had pain at least in my fingers, and as time went on, the pain progressed and worsened as I grew and beyond. When I was about 12 I started to show symptoms of atrophy in my 4th and 5th fingers. I never encountered a doctor who took my symptoms seriously, so no real attempt was ever made to find out what was wrong with me. Over the years pain, numbness, tingling, pins and needles, weakness, atrophy, swelling, twitching and cramping have become everyday symptoms. This has also led me to have a prolonged history with depressive episodes.

Luckily though, my condition is dynamic in that even though the symptoms are always present, they can change in severity over long periods of time. I have had several lengthy periods of total disability, but I have also managed to have a fairly normal life in the better times. I went to college and studied mechanical engineering and I graduated in 2011. I work in the design department of a large manufacturing engineering company. Currently, I am off work again. But it hasn't been all bad, as I have been taken seriously for the first time in my life which has led me finally to a diagnosis. And not just a diagnosis, but now that I have a name for what is wrong with me, I can join communities like this one. I am so excited to have a diagnosis and to finally be able to join a community of people who understand what I'm going through. The thing I am most excited about though, is that I can finally begin treatment. I am currently seeing a physiotherapist, a chiropractor, a neurologist, an acupuncturist, a massage therapist and my family doctor for treatments. I take gabapentin and tylenol 3 for pain, naproxen when the swelling gets bad and zopiclone when I can't sleep. I am currently working on and waiting to see if these treatments will help or if surgery will be required.

Whatever it takes, I am just so ecstatic to finally be able to see what life is like without pain!!! I would imagine most of you have been around for a while and mostly know each other, but please feel free to post here so I can get to know you guys, too!

Just to flesh out more information in case anyone is interested or wants to actually read it all and let me know if they feel my recent diagnosis of TOS is reasonable, I'm posting it now. I probably should have included it in the main post, but I wasn't sure how much detail I should go into for my first post. Here goes:

Age <10
- Hand pain and shoulder hunching begin
- GP visit in Clarenville, NL
- Told not to worry, apply heat, would grow out of it
- Pain continues but is not a detriment

Age 12-13
- Move to St. John’s, NL
- Deformity of pinky finger becomes apparent
- Playing of musical instruments discontinued due to loss of mobility in right pinky finger
- GP visits in St. John’s, NL and continue regularly to age 24
- Sent to pediatric specialist who diagnoses general deformity
- Use of hand splint is recommended to straighten finger
- Is completely ineffective, specialist is inexplicably satisfied with results, treatment is discontinued
- Pain continues but is not a detriment

Age 13-17
- Hand deformity continues to worsen to present, pain increases
- Coldness of hand is noted as often accompanying pain
- Tingling and “hitting funny bone” sensation becomes common and continues to present
- Pain begins to manifest in wrist area
- Severe tension headaches become commonplace and continue to present
- Given anaprox and other anti-inflammatories for pain

Age 18
- While working at Tim Horton’s, pain worsens and becomes debilitating
- Work is discontinued for the next year approximately due to increased amount of pain
- Pain begins to manifest in shoulder and neck area, is first diagnosed as repetitive strain injury
- Physiotherapy is begun as possible treatment and includes acupuncture, exercises, ultrasound and neck traction
- Recommended muscle relaxants to treat pain
- Also prescribed Atasol 30 (30 mg codeine) on and off for pain

Age 19
- Due to internet research, the possibility of ulnar nerve compression is addressed with doctor
- Physiotherapy is continued
- X-rays of neck, upper back and shoulder are ordered
- No abnormal results noted
- Sent to neurologist who does minor physical examination
- MRI is ordered by either GP or neurologist, no further contact with neurologist
- MRI diagnoses missing 1st left rib
- Prescribed 2400mg of ibuprofen per day for pain

Age 20
- Pain becomes manageable, resume work as cashier at grocery store
- Continue physiotherapy
- Begin working as physiotherapy aide
- Continue taking ibuprofen 2400mg daily
- Also prescribed amitriptyline daily for pain management
- Significant loss of mobility becomes apparent in hand

Age 21
- Pain once again becomes debilitating, off work for about another half year
- Eventually get medical clearance to return to school
- Pain becomes somewhat manageable
- Begin massage therapy
- Continue taking ibuprofen
- Hand muscle wasting becomes apparent, as well as loss of grip strength
- Pain in upper back (cervical spine) continues to worsen to present

Age 22-23
- Pain continues at fairly irregular levels of intensity for extended periods
- Sensitivity to prescription NSAIDs becomes apparent (stomach issues, including ulcers)
- Sometimes pain is manageable and only minor discomfort, other times it is completely debilitating for up to weeks at a time
- Prescribed toradol for pain
- Loss of dexterity and hand strength becomes apparent

Age 24-25
- Hand and arm pain continues and worsens
- Upper and lower back pain continue to worsen
- Muscle wasting in elbow becomes apparent
- Dexterity loss becomes significant
- Move to Ontario in order to have access to more qualified specialists
-GP visit in Pickering, ON
- X-rays ordered which diagnose cervical rib on right side, not missing rib on left
- X-rays diagnose spinal disease in upper back (arthritis)
- Ultrasound of elbows normal
- Sent to physiatrist for nerve conduction study which indicated nerve compression at elbow and permanent nerve damage
- Electromyography was also performed that indicated permanent muscle damage
- Physiotherapy and massage therapy no longer recommended due to the unknown nature of injury and in the interest of not worsening condition
- Visit to neurologist begins investigative testing process

At the beginning of May 2012, severe swelling of the right hand and forearm became a problem
- Significant pain and discomfort came with swelling that caused inability to continue at work, was placed on short term disability
- Naproxen 250mg twice daily prescribed primarily to control swelling and is somewhat effective, although not completely
- Tylenol 3 prescribed daily pain relief as needed
- Zopiclone 7.5mg prescribed for sleep disturbances due to pain
- Neurologist prescribed gabapentin (1800mg daily) in an effort to get pain under control, it is not entirely effective
- Hand x-rays ordered in May came back normal
- MRI of neck/upper back did not show point of nerve injury
- MRI of shoulder/brachial plexus did not show point of nerve injury
- Secondary nerve conduction study and electromyography was performed that indicated cubital tunnel syndrome
- MRI of elbow did not show point of nerve injury

Referred to chiro/physio
- Diagnosis of N/A TOS is given (problem at elbow deemed to be simple nerve damage as a result of long term TOS)
- Treatments include massage therapy, chiropractic adjustments of back, neck and cervical rib as well as physiotherapy (TENS, exercises, stretches), treatment of fibrous adhesions in neck and shoulder.
- Attempts have been made with exercises and stretches to restore nerve gliding and allow neck and shoulder muscles to relax and lengthen.
- If treatments are not effective, surgical consultation will be booked.



Here is my list of other neurological symptoms and since I am new to learning about TOS, I am unsure if any or all of them can be attributed to TOS.

- Diagnosis of Bell’s Palsy at age 10 on left side of face. No specialist was consulted or tests ordered. Some mild facial paralysis persists to present, but has become progressively more obvious since approximately age 22.

-Progressing clumsiness and inability to concentrate persists to present, first noticed at approximately age 22. Diagnosis of Adult ADHD was discussed, but symptoms were absolutely not present in childhood.

- Vertigo and tinnitus began at approximately age 13, progressing to present with sometimes long periods between “episodes”, but these periods are becoming shorter and less frequent since age 21. It is worth noting that the vertigo symptom is not situational in that it is not related to any type of movement, but seems to be a spontaneous symptom. For example, rollercoasters are not an issue at all and do not cause dizziness. Was diagnosed initially as Labyrinthitis, after it persisted, Meniere’s Disease was suspected but never investigated.

- Mild conductive hearing loss for low frequencies noted in left ear as well as evidence of middle ear pathology bilaterally. First noted as per test results dated 11/12/00.

- Severe muscle stiffness in upper back and neck resulting in shoulder hunching has progressed since becoming noticeable at approximately age 10. Muscle spasms and cramps became frequent around this time and persist to present intermittently. A clavicle strap was ordered at age 20 in an attempt to correct posture. X-rays have shown disc space narrowing in the upper back (2011). MRI has shown DDD, disc space narrowing, stenosis and 4 herniated discs (2012).

- Overactive dilator muscle or pinched optical nerve was noted by an optometrist as possible cause of excessive pupil dilation in eyes at all times, as well as mostly sluggish or sometimes non-existent reaction to light shone directly into eyes. Ex: Pupil dilation at all times is sufficient to cause red eye effect in real life, as well as in photographs.

- Lower back pain became bothersome at approximately age 21, with episodes of extreme pain resulting in almost completely restricted mobility for always less than a week. However, lower back pain, to a mild extent is almost always present, especially in the morning. X-rays have shown degenerative disc disease and disc space narrowing in the lower back (2012). This pain radiates down the right leg to mid-thigh and causes muscle trembling and weakness in the affected leg. Localized numbness has been noted in toes of the the right foot intermittently since approximately age 21.

- Night sweats became a troublesome issue at about the same time as swelling in the right hand. Episodes were excessive with enough sweat to drench bed clothes but without the feeling of being overheated whatsoever.

- Iron Deficiency Anemia was diagnosed at age 16, and iron levels have been consistently low despite daily iron supplements. Anisocytosis was first noted in 2008.

Sorry this is so long and kudos if you got through it. I really appreciate it!!!!

Welcome! Congratulations on your recent diagnosis. The worst is not knowing...and waiting. Now you can start your journey to heal. I also had ANTOS as well as VTOS. Hopefully "had" anyway. I'm 3 weeks post op now :-)

I'd be tempted to get that cervie rib out by a specialist , of course. Then see what improves and what might need more treatment.

Did they say if the c rib was large, medium , small, full or partial?
But it does sound like it could be a big cause of much of the pain.

Just to verify from that other post, the 1st rib is there and the report was incorrect??


Your elbow pain and other misc symptoms could be related to the c rib or not. Lots of nerve/muscles/blood flow go thru the area and since it has been affecting you all these years there could be adhesion, scarring and extra tissue complicating things.

Seek out the best highly skilled surgeon that you can when you are ready to do surgery.

For years I had been told I was missing a first left rib. This was due to an x-ray and an MRI both read by the same radiologist a few years apart. After later testing and other radiology reports, it turns out it was indeed an extra right rib. I find it hard not to be angry at that first radiologist since if she had read the images properly in the first (or second) place, things could have been addressed as early as 8 years ago. I have copies of all of my older reports, but not the newer ones so I'm not sure what classification the cervical rib was given. I do know that it is big enough to be felt by hand near my collarbone and is being adjusted by a chiropractor. I didn't realize these types of classifications existed, so I will make it a point to find out the next time I see my doctor.

Since I am in Canada, I can't really just find a surgeon on my own and go for surgery. I have to follow the guidelines of a doctor (and I finally have one that takes me seriously and listens) and get a referral in order to see a specialist or surgeon. That said, when the time comes, I do have a choice of who I see, so I will definitely be researching to find the best one in my area. But until my doctor is convinced that I need surgery, I won't be able to get the referral.

I am running up against a lot of uncertainty and hesitation due to the length of time this has been going on. Since it's been 20 years or more and almost all of my growing was done since compression started, no one is really sure what the extent or severity of the effects are or will be. It will definitely be interesting to see!

LiveLoveandTrust, thank you! I really do feel much better since finding out what's going on. I had no idea how good it would feel to finally know. And congratulations on your surgery, I hope everything heals perfectly! I know your surgery was only 3 weeks ago, so it may be too soon to tell, but is it something you would recommend for other A/NTOS sufferers? You must be so excited to have that behind you!

[QUOTE=tangerine;950048
LiveLoveandTrust, thank you! I really do feel much better since finding out what's going on. I had no idea how good it would feel to finally know. And congratulations on your surgery, I hope everything heals perfectly! I know your surgery was only 3 weeks ago, so it may be too soon to tell, but is it something you would recommend for other A/NTOS sufferers? You must be so excited to have that behind you![/QUOTE]

Thank you for your kind words
If the pain is affecting your quality of life, you know in your heart that this is the correct diagnosis, and especially is you have A or V TOS I would recommend the surgery. Some things feel better now, others worse. I would say that a lot if not most of my TOS pain has been alleviated and now I'm trying to figure out what post-op pain is permanent vs. what is just healing pain. It takes about a year to fully sort that out.
Overall though, if you ask me if I'd do it again, yes, I would get the surgery again because at the very least, trying to make it better is very worth it.

I think I have heard that people with an extra cervical rib tend to have consistantly better outcomes with surgery. Make sure to get surgery with an expert (if that's what you want to do).