[danikai09]

Hello there!

First, I am so glad to find these forums! I have been pouring over posts for three days before I finally signed up. It's such a relief to see that I'm not alone and that there are people who will understand what's going on with me.

So, here's a "reader's digest" of my symptoms (with inserted sugeries).



2005:
Vision loss - went from 20/20 to needing glasses almost overnight
Difficulty focusing eyes from one object to the next
Developed floaters in both eyes
"Raynaud's Syndrome"
"Seeing Stars" when on inverted roller coasters (something I did frequently with no issues for years)
-tired hands
-pain in wrists
-difficulty doing hair/lifting arms
-fingers cramping

2006:
EMG positive for "Carpal Tunnel" on L and R wrists
Carpal Tunnel Surgery on both arms - UNSUCCESSFUL - pain returned within 4 months
Loss of mobility in R wrist do to Carpal Tunnel surgery (won't bend backwards)
Began experiencing
-vertigo
-sinus pain
-ear ringing (R ear)
-loss/dampening of hearing

2007-2009:
Lived in stupid young adult denial. I was able to function so "who cares?" was my attitude.

2009:
EMG on R arm was negative for Carpal or Cubital Tunnel - Didn't pursue situation

2009-2012:
Resumed idiotic denial. This was true DENIAL. I began hurting almost every day, but ignored it. "This is my life, I'm just going to accept it" was my attitude.

2011-2012:
Began experiencing:
Hand
-tingling
-burning
-numb
-cold (to the point of hypothermia/frost bite pain)
-discoloration (blue or red and splotchy)
-loss of use in 4th & 5th digits on R hand
-no grip
-dropping objects daily
-inability to play piano or perform other "dexterous" funtions
-throbbing in flesh below thumb
-wasting in pinkies
-tender wrists
-no sensitivity to pain in 4th & 5th digits on R hand
-tolerance to boiling water (hands are so cold that hot water doesn't "feel hot")

Forearm
-burning/pulling
-numbness
-easily fatigued

Upper Arm
-burning
-shooting pains
-unable to hold arms above head / perform normal activities (blow dry hair, put on make up, etc)

Shoulder
-stiff
-chronic popping in R shoulder, multiple times in one rotation
-pain of varying locations and degrees

Neck
-stiff
-loss of mobility
-constant desire to crack neck, stretch backwards, "shake it out"
-pain of varying locations and degrees

Face/Head
-facial numbness on R side
-watery eyes
-blurred vision (comes and goes)
-migraines in lower back of head
-TMJ on R side

Other
-popping in R hip with every step
-asthmatic symptoms (but not asthma)
-"acid reflux" that does not respond to Prilosec treatments
-tightness in sternum/chest area
-vocal problems (I am a singer, unable to breathe in diaphragm normally, chronic scratchy throat, pain when inhaling)
-decrease in basal body temperature (went from average 98.5 to 97.6*F)
-inverted rollercoaster led to 100% black out (really freaky)

2013:
Hand
-periods of total paralysis of 4th and 5th digits on R hand
-loss of use of 4th & 5th digits on L hand

Shoulder
-Winged Scapula on L shoulder
-Debilitating pain on shoulder around Winged Scapula
-Drooped shoulder on R side (significantly lower)
-Radiating shoulder pain on both sides
-Pain radiating into arm pits and around "sideboob" (haha) areas

Other
-Cold/chills in my whole body, radiates from sternum down my arms and my lower limbs are cold as well. This happens constantly and it doesn't matter if I'm in a 79* room or not. My hands are ice and the rest of me is "chilled".



In the last YEAR the following tests have been done and come up normal:
Hearing Test (100% L, 90% R)
Larynscopy (sp?)
EMG/NCV R & L arms
Cervical Spine MRI
Brain MRI
Myelogram (requiring blood patch - sigh)
Back X-Ray


Diagnosis that have been wrong:
Bronchitis
Vocal Abuse
Residual Carpal Tunnel
Cubital Tunnel
Ulnary Neuropathy
Nerve Pinch in Spine
Brain Tumors
Insanity (okay, a doctor didn't diagnose that.. I think my mother did, though)


Doctors that have been useless:

NE Orthapedics, Gadsden AL
Baltimore Hand Specialists, Baltimore MD
Ruiz Neurosurgery, Gadsden AL
Caldwell ENT, Gadsden AL


Current medical treatment:

Seeing a local nuerologist that feels I have TOS (he said this after only TEN MINUTES of reviewing my situation/films). He has ordered neck X-Rays and I return to him in 1 1/2 weeks.

-------------------------------------------------

So! To sum it up.. I am in chronic pain. I would call it a level 7-8 out of 10 (to put it in perspective, I thought a root canal was a 2 and delivering my daughter was a 5.. the spinal migraine after the myelogram was around a 6!)

I can no longer do any of these without severe pain:
Drive (anywhere, distance is irrelevant)
Wash Hair / Dry Hair / all that good above my head stuff
Carry my daughter
Load/Unload dishwasher
Write with a pen/pencil
Shop for Clothing (if I have to hold the clothes while shopping)
Open a plastic gallon of milk
Open anything harder than a plastic gallon of milk!
Carry a purse in any capacity (shoulder or in hands)
Sit
Stand
Lie Down
Sleep

I am hitting a point that I can no longer function.

More than that, though, I am just really concerned about what I've done to myself - on a permanent level.

7 1/2+ years of this and I never knew that my shoulders were the problem - I babied my hands and wrists, sometimes my elbows.. for fear of Carpal/Cubital.. always lifting at the shoulder to compensate. Never leaning on my elbow, always lying my arm flat and leaning forward at my shoulders to see the computer or study, etc.

Heck.. just THREE WEEKS AGO I moved out my house entirely by myself. Packed and moved tubs/boxes for two weeks straight. Lots of heavy lifting and I thought "it won't hurt my hands that much to just do this".. when it was KILLING my shoulders (this may be what triggered the overnight appearance of Winged Scapula).

Biggest warning signs I'm worried about right now:
Winged Scapula accompanied by debilitating pain in entire area
Paralysis in R hand 4th & 5th (~80% of the time)
Ischemia of R hand (no circulation = strong discoloration, more frequent "cold spells" and loss of mobility)
Facial Numbness/Poor Response on R side (smile is uneven, etc)
The "cold spells" being all over (legs, feet, both arms, radiating from sternum/chest)

I just wish I had realized sooner.. gone to someone sooner.. tried something sooner..

It's good to see others with my same problems, though on varying levels.

Has anyone else gone this long without even knowing what was wrong with you..? And pushed yourself this hard?

At what point do you stop forcing yourself to "function"? I am a single parent with a 3 year old. My parents are both disabled/have medical issues. When do I just tell myself "stop it and lie down, you are DISABLED" versus sucking it up so that I can get my kid to school or take out the trash...? Normal things that normal parents/people do!

[note that every symptom listed above from 2005-present is still present, most are just "chronic" or "severe" now, compared to at onset]

[mspennyloafer]

i am a little overwhelmed by your list of sx!!!

yes, i am going out on a limb here but i would say you def have tos.

have you had any vascular tests done? are you on thyroid meds for low bbt?

scap winging is common with tos. and if one of your shoulders droops, there's actually a syndrome correlated with tos called "droopy shoulder syndrome". i went thru the same thing, i thought there was something majorly wrong with my arms and i would dump them and my hands in ice every night. by the time i figured it out all of this damage had been done and my neck became majorly involved

i am working now part time but i really shouldnt be. my hands are soooooooooooooooooooooooooooooooooooo tired

also weird to me that you tested positive for carpal tunnel then negative, makes me wanna get retested. my hands are numb but i was negative.

[danikai09]

I tested postive for Carpal Tunnel in 2005, then had Carpal Tunnel surgery in 2006. Symptoms returned less than four months later. I assumed my CT surgery was "unsuccessful", but the more I've been reading about the "double crunch" the more I'm thinking I did have CT, I just had a much larger problem of TOS and they didn't catch it.

My EMG in 2009 and again in 2012 came up negative for CT, presumably because the surgery alleviated CT and now all of my issues are TOS related!

I'm a little overwhelmed by my list of sx, too. This past week was the first time I put EVERYTHING together. At the time, I didn't connect sinus problems or needing glasses overnight with my arm pain. I didn't think the ringing in my ears was related. As I really took the time last weekend to sit and write down everything that I think is "abnormal" about me, 90% of it could be tied back to TOS.

The only things I'm not sure on are my legs being cold, blueness in feet - same symptoms I have in my hands, but in my feet. My nose and ears are also easily "frozen" in cool temperatures. I get debilitating ear aches in 68* breezes that other people only get when it's -14*!

I know TOS doesn't really affect your lower appendages. This concerns me a little. There might be another issue going on or it might be possible that I have such a problem with the circulation that it's affecting more of my body overall. Time will tell!

I haven't had any vascular or thyroid testing/treatment done. I've only just gotten a chest X-ray and I'm waiting to go back to my neurologist on that. I am planning to have him refer me to a TOS specialist. It seems too complicated/serious to mess around with the small town local physicians where I live (boondocks Alabama).

My hands are numb. I can't feel my fingertips. The only real sensation in my fingertips I have is my pointer finger in both hands. The pinky and ring fingers do whatever they want, they stick out, lock up, shake, flip open etc.. at a whim. My middle finger seems to do what I want it to, but I have to assume sometimes since I can't feel with it..

Sometimes when I'm washing my hair, I can only feel my scalp with my pointer fingers and I have to use my scalp's sensation to know if all my fingers are touching my head or not.. usually they aren't! LOL!

[mspennyloafer]

you might google raynauds phenomenon

it actually isnt that serious but it will make your hands and feet change colors

[danikai09]

I was diagnosed with Raynauds in 2006! It is just a subsidary of the TOS, though, as I'm going paralyzed in my hands and Raynauds doesn't do that.

[Jomar]

I may have missed it, Have you had any kinds of therapy? like postural, trigger point, manual massage,body work, anything?
Any expert chiropractic?

Previous whiplash or accidents that could have caused misalignment's?

Some of your sx do sound like they could be trigger point related.
http://neurotalk.psychcentral.com/thread125577.html

And some might be RSD & TOS? or some combination of another condition.

What conditions/disabilities do your parents have- anything similar?

TOS can have something called double & triple crush - makes for sx at carpal or ulnar but the true cause is up the chain in the BP/neck areas.
sorry the carpal surgeries were not helpful...but that shows cause is up higher..

[danikai09]

Jo*mar,

I have not had any therapy/treatments yet. I am only six months into seriously looking at my medical condition and only a couple of weeks into serious diagnosis/possibly figuring things out.

I don't have a history of accidents or whiplash - actually, I'm pretty healthy in terms of my medical history outside of the above mentioned symptoms - never broken a bone or been in an accident, etc.

My parents have no similiar conditions, but their own problems. My mother has back issues with herniated / bulging discs and my father has a history of knee issues and now some shoulder problems with a torn rotary cuff. They both were exceptionally healthy until they each reached a certain age/point in their lives and now my father is disabled and my mother would be if she admitted it..lol.

The cause is definitely higher up! Somewhere in my shoulder area. If it's not TOS, it is something else in that area involving the nerves. It may not be a cervical rib or scalene muscles at the Thoracic Inlet, but it could be in similiar areas... at the moment, though, I'm strongly believing it's TOS. I get my X-Ray back on wednesday to see if it's a cervical rib and will go from there.

[mspennyloafer]

Originally Posted by danikai09

I was diagnosed with Raynauds in 2006! It is just a subsidary of the TOS, though, as I'm going paralyzed in my hands and Raynauds doesn't do that.

youre right about that!!

id get like a GOOD pt who does manual therapy to give you a going over, and pay attn to EVERYTHING they say. then you can take this knowledge and use it every day. if they say your shoulders are downwardly rotated that is a huge deal and will give you tos. the shoulder girdle is very important.

like i know from research online where my pec minor is and it is freakin grid locked. i am working on it every day and i do feel better. pec minor stretches dont really help, i have to get my hands in tehre and work on it constantly. i can tell when my ribs elevate and my pt pretty much confirms it.

if your hands and feet are acting up, then it could be system like thyroid or magnesium deficiency, diabetes, etc.

i think my tmj (and pec minor) are giving me tos more than the other way around, which is a bit odd but my tmj is awful awful