do any of you actually had or have cts? NOT neck disc issues but in your wrist or up your arm (if that's even possible)

i went to the neuro AGAIN and he said he thinks i have cts based on the needle pricks he did on my hand and the phalens test

what i do not understand is,

first of all the phalens test didnt hurt so wouldnt that rule out cts? my hands did tingle during it mildly but i have synovial fluid in my wrists (i had a cyst drained on the top part of my wrist but it came back) and i know that fluid has made my fingers tingle very mildly if i used my hands too much

i had a cortisone injection in my ct and it didnt do anything zero change in symptoms.

he said i need another emg ncv and refused to give me an mri of my arm.

any comments/experiences appreciated, thanks.

Hi Ms. Penny,

It is possible to have both TOS and CTS at the same time; however, CTS is also a peripheral nerve entrapment syndrome that mimics some of the symptoms of TOS.

An MRI, or additional EMG/NCT is unlikely to clear up the matter. Have you asked your guy if he would be willing to do (or refer you for) a scalene block? If the test is positive (i.e., your pain or other symptoms get better for a day or so), then TOS is the likely culprit.

An MRI of your arm would not be helpful, in my opinion.

Hang in there; some of us took years to diagnose because of other pain syndromes which share symptoms with TOS, like cervical syndrome, CTS, etc.

Is your guy a neurologist or a vascular surgeon? The latter can sometimes dx you on the spot, by manipulating your hands and arms into certain positions to see where there is weakness, numbing and tingling or pain.

Finally, try googling a thread on testing in this forum - there used to be a great one by Tam.

Alison

yup ive seen a vasc. surgeon (this was a neuro)

i did give myself a whiplash injury which is common with hypermobility...but my mri of my neck is normal and my vascular testing was normal. i could ask for like an upright mri or maybe testing for small fiber neuropathy (really worried i ahve this)

it really irritates me tho that doctors just dont give a crap about my wrist. i have tendon problems in both arms and i know part of the reason i havent been able to double click on a mouse is because ihave fluid in the top part of my wrist..if i have fluid there seems like id have it in other places!!

im not your typical tos patient, not even sure i have tos. definitely not scalene tos. i had/have pec minor syndrome but its intermittent unless i somehow injured my bp there and this caused 24/7 numbness.

While EMG/NCV is not an accurate test for TOS it is accurate for Carpal and Cubital Tunnel disorders.

Im going to look up all the median entrapment sites before i go

I know pronator teres is one

(Most people with tos complain about ulnar ive noticed)

To me, it sounds like you need to see a hand specialist. I have 3 torn ligaments in my wrist, tendonitis (due to unstable wrist) and bony abnormalities. Your description of the fluid on top of the wrist sounds familiar to me. Only the hand specialist can properly diagnose your situation. Hopefully, he/she will listen and do a full evaluation of the hand and wrist. Some stuff may be attributable to TOS and some may be specific to the wrist/hand. I'm glad that my doctor listened to me, did a full evaluation and didn't just attribute the ulnar sided wrist pain to a return of TOS.

The hand specialist should refer you for hand therapy . It sounds like you need some hand specific therapy from a certified hand therapist. My doctors practice has 4 to 5 hand therapists on site.

Personally, I'd research local hand specialists and try to find the best one you can. I stumbled on mine (referral from my PCP) but he has a very good reputation from other doctors and physical therapists.

thanks, i went to one out of network hand specialist in january but the emphasis was on the numbness (i barely remember discussing tendon problems for some reason.....)

i dont know i just really wasnt impressed. he did a cortisone injection into my ct and i didnt feel anything, no pain no benefit NOTHING and i just never went back. he was out of network too and i was nervous he'd rec the carpal tunnel surgery.

my wrists are also freakishly small (ive been told this by several people) and probably unstable, theyre hypermobile. so i think i do need a good hand specialist to take my issues more seriously, the sports doctor i went to to have the dorsal cyst drained seemed to be used to dealing with sports/men blah blah opposite of me.

i will try to find a hand specialist, hopefully in network. at the very least to advise on the top part of my right wrist. id be open to getting the cyst cut out but i need opinions if it would just come right back, probably!

Hi there
I have bilateral cts 6 mos postop tos surgery & bi tarsal tunnel 1yr. Peroneal n. Comp. 4 yrs. I just had a skin biopsy & sm. Fiber blood test (very exp.) & emg /ncs again. All normal! And 2 diebetes test - normal. I read when u have nerve comp. Above (neck) its common too have nerve comp. in arm /hand. Cts is common. Don't worry ur self sick.
Take it one day at a time.
I was very surprised to find out I have tos due to extra c-ribs, after 8 yrs of sx &pain. Think with all the xrays & mris I had of neck & chest someone would of saw these ribs.
A Dr told me they just weren't. looking, tos is not common & having extra ribs is very rare.
Lucky me! I had neck cushion bf tos surgery, neurosurgeon said All my sx were coming from my cspine. I had my doubts, but he said surgery was absolutely nescessary, as I could become paralysed. Nerves are complicated!!

Oh forgot
U might want to see a Rhuematologist /Physiatrist who does musculskeletal ultrasound and or a Ortho. Hand Dr. Or all 3 if ur ins. allows.