Copies of discussion from 'hoggle'

jeremydpbland
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Please excuse my "typing" I have hypermobile Ehlers Danlos syndrome I have had 24/7 numb hands since 2010. I hate pressing buttons, can't click a mouse, pinching motions etc. Wearing a blood pressure cuff causes my hand to claw up. I hold a marker in my hand to type which acts as my "finger" 3 different emg/ncvs between 2012 and 2014 were normal. Conducted at mayo clinic and Emory Neck MRI in 2011ish was normal I went to pt for roughly a year where they looked at neck/shoulders Brachial plexus MRI in 2015 was normal In 2020 I noticed my wrists were burning again using my cell phone, not just numb, but I didn't have health insurance. In Jan 2022 had EMG/ncv which showed median nerve damage including apb wasting. See below https://ibb.co/qd1cQpGhttps://ibb.co/6N1Sr7D ^ if for some reason those links don't work please let me know! Had ctr on 1/31 in right hand then left hand in April In April I had neck MRI/CT scan and brain MRI all normal If my problem was actually carpal tunnel syndrome, a year later will my emg/ncv be better? At the very least it should not be worse? ANY advice of where to go from here is appreciated. I was tested for autoimmune disease in 2017. Also small fiber neuropathy. I'm running out of ideas. Is it possible the median nerve can be permanently trapped in elbow? Am I being too impatient with ctr? Could this be ntos? THANK YOU.

I would be surprised if there was really APB wasting with those NCS results. The distal motor latencies to APB are only marginally prolonged and wasting is unusual without marked delay in motor conduction if the cause is CTS. The sensory results are odd - if the latencies are from measurements at 14 cm then the conduction velocities would be 35/37 m/sec but the sensory conduction velocity is given in the last column as 62 - which would be normal and again inconsistent with the motor studies. The EMG sampling suggests denervation in APB but this can also result from thoracic outlet syndrome, radiculopathy and other causes so overall I'm not sure what to make of those results. If they do represent CTS then it is fairly mild and should recover promptly (ie pretty much overnight) with surgery and the NCS results should be improved by this point. Have the symptoms actually changed at all with surgery? JB

 

Thank you for taking out the time to reply! I didn't think a CFS leak would show up but I was not sure.

2022 study was not Emory/mayo

Emory study 2011... dont have actual numbers just says normal to everything

Mayo clinic emg/ncv 2014
https://ibb.co/bBKscJg

Emory study 2015
https://ibb.co/VBv4tsY

My hands are just as numb as they were before surgery. My index finger is by far the most numb, it gets numb the further out to the tip, so like the fingernail is the most numb. And that has not changed with surgery.

I have been able to use my cell phone a lot up until recently. But I'm not sure if that's just because I avoided using it for a while? Basically it starts out with a burning sensation deep in my wrist. Here's a picture, I drew a line along where I massage it too much. https://ibb.co/mhLHbLg
I am avoiding typing at a computer. 

On my left hand I can a tiny bit but with my right hand I hold a sharpie marker which acts as my finger to peck at keys. This was not always the case, this has definitely gotten worse over the last several years.

And then if it gets bad enough my wrist upwards feels extremely pinched. I'm barely at a computer and I recently had a horrible flare which I think is from being on my cell phone too much.

I've had my neck looked at a billion times, including physical therapy and I do not think it's that. 

My brachial plexus however I stretched several times in 2010 and 2011 but nothing showed up in any test, including a brachial plexus MRI. 

Is it possible to permanently damage your median nerve from stretching your brachial plexus and *not* have it show up on nerve studies but have it cause APB wasting.....years later? It doesn't make sense to me

Because I have a connective tissue disorder I thought the burning sensation might be a tendon issue. But I do not think that would cause this pinched feeling?

There's a doctor who knows a lot about connective tissue disorders and talks about median nerve surgery at elbow for heds but he doesn't accept my insurance and im skeptical to see him  http://wbericson.org/index.htm

Do you know if there are any tests that would show thoracic outlet syndrome? It's definitely not vascular. 

Would a wrist MRI be pointless? 

What other tests would you recommend?

I'm not sure what I should do next... I guess another nerve study with a completely different doctor. I'm in the United States. And based on what you're telling me, I should get a second opinion but I'm not sure how I'm going to trust the second opinion!

Thanks again

The 2014 and 2015 NCS results are clearly normal. It's just the recent set that seem odd and rather internally inconsistent. None of them have looked specifically for neurogenic thoracic outlet syndrome. Brachial plexus MRI is difficult and whether you are likely to pick things up on that depends on the quality of the scanner, the scanning protocols used and very much the person doing the interpretation so it's impossible to comment on whether that would have picked anything up. The detailed description of the symptoms doesn't ring any obvious diagnostic bells with me I'm afraid but rather than spending money on tests I would be inclined to try and find a good neurologist to begin with. JB

 

latest ultrasound with completely different doctor said this

"ndication: R Wrist/hand pain Right Wrist/Hand MSK Ultrasound-Volar -Emory Sports Medicine-Good image quality The patient was seated with hands resting on a table the palms were supinated and the wrists placed in mildly dorsiflexed. Both ulnar and radial deviations were performed to delineate all the necessary anatomy. Axial and longitudinal images were obtained from the volar wrist increase to the thenar muscles. The transducer was angulated to compensate for the normal contour of the wrist. The flexor retinaculum, the flexor digitorum profundus and superficialis tendons, and the adjacent flexor pollicis longus tendon were identified within the carpal tunnel. Dynamic imaging with flexion and extension of the fingers was done to demonstrate the motion of these tendons. The median nerve was identified superficial to these tendons and deep to the flexor retinaculum, and traced to its distal divisions. The palmaris longus tendon was identified superficial to the retinaculum. On the radial side of the wrist, the flexor carpi radialis and the radial artery were identified and the radiocarpal joint capsule was evaluated for an occult ganglion cysts. On the ulnar side, branches of the ulnar nerve and artery lie within Guyon’s canal. The flexor carpi ulnaris tendon was also identified on the ulnar border of Guyon’s canal. All the tendons can be followed to their sites of insertion if clinically indicated. 

The following pathology was identified. The images have been stored on an external memory stick. CSA of median nerve proximal to inlet is 6mm2 Ulnar nerve appears normal in size with obvious compression. There does appear to be an accessory ADM muscle that overlies Guyon's canal. This is present on both sides and is somewhat close to area of patients pain complaints. Rest of muscles/ tendons in the area look normal."
Why does it say with obvious compression? Is that a typo?

Vs this report from the other ultrasound
"Limited Ultrasound:

Limited Ultrasound of bilateral wrist were performed using Clarius linear array transducer. Fluid was noted in the tendon sheath of flexor carpi radialis in the region of tenderness. Tendon has no evidence of tendinosis or partial tearing"

Getting emg/ncv next Wednesday. I don't trust ultrasounds anymore and want an MRI although I don't think they'll give me one 

I don't understand how one doctor could report fluid in my sheaths and the other not even mention t

The 'obvious compression' coment is odd. GIven that it appears in a section headed "The following pathology was identified" I think they might be suggesting that the accessory ADM muscle might be compressing the ulnar nerve. Your'e unlikely to get better information from MRI which has lower resolution, cannot examine the dynamic movement of wrist structures, and is frequently reported by radiologists who know little about nerve pathology. The fluid in sheath variation might either be because of differences of opinion between the ultrasonographers or it may genuinely have changed, fluid can accumulate and clear again quite quickly. JB

 

hoggle
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Thanks so much for keeping this thread. I bookmarked it and I was worried it was accidentally deleted because there's no way I could type all of that up again.

I just had my follow-up nerve study and I will report the results as soon as they get in. But I wanted to share my experiences before I forget.

Over the last couple of weeks the burning on my ulnar side 2ish inches beneath wrist has gotten worse escalated into my ring finger becoming intermittently numb. It definitely happens when I type (which i still avoid) and possibly when I grip things (???). It's like a deep ache in the lower part of my arm that comes and goes and nothing is ever tingling. Entire hand is still slightly gloved with hard index finger like before surgery, that hasn't changed.

I went to two chts and they were a waste of money. The first one barely touched me and said I should be careful about letting my elbows rest on things. The second told me I should sit at a table typing with a ring splint on my index and thumb and see if my ulnar nerve still becomes numb. I tried this for literally a minute later they became numbish. Also I posted the ring splints she gave me on a heds forum and apparently they don't even fit correctly so I'm not going back

At my nerve study today just some notes:

- it was at the end of the day and I don't like that, it did feel a tiny bit rushed at the end

- initially the technician/Dr idk said ulnar nerve was a little slow

-then we switched to my left side and it was getting worse so I asked about my body temperature.

-at this point another woman came into the room and they had me hold my hands in warm water. Then they retested and it was normalish. But they had to be quick. I had a little temperature sticker on and apparently my hands get cold quickly

-then a doctor (??) or someone else came in to do the emg for my APB. My right side was normal and my left side is a little slow.

-i had my right apb tested lying down and my left APB sitting up. If it's ntos... does that make a difference????? (I had my entire emg in Jan lying down so for my right side thats still an improvement in apb)

-i had surgery on my right hand in Jan. Left in April, then I was attacked by a dog in left hand. They assumed my right hand had healed from surgery and my left hand is still healing (??) I also used my left hand way too much after surgery instead of letting it heal

I told myself before that if I had ntos it would be on my left side. My left shoulder essentially holds up my right shoulder but I have no idea if this is just a coincidence.

I will post the actual numbers soon

My strategy next is to go to pt (NOT a cht). I have to for cervicogenic headaches (from heds) and while I'm there try to get him to look at ulnar nerve.

Initially I thought my ENTIRE emg/ncv from January should be thrown out but then with the left apb being sluggish im confused. Also they said body temp doesn't affect emg results just ncv but online it says it does (?????). My 2015ish nerve studies at Emory and Mayo both have temps, Jan 2022 does not

https://pubmed.ncbi.nlm.nih.gov/32193087/
Is interesting

hoggle
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Also thanks I won't ask for a MRI

I'm pretty sure around the time I had my first US I was squeezing garden hose too much. I replaced this with a lever hose by the next US so that makes sense actually.

hoggle
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Also I noticed "obvious compression" too...I almost feel like it was a typo. I will ask

Sorry rambling very tired from testing

hoggle
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https://ibb.co/tKc8wZk
https://ibb.co/tQnpth9
https://ibb.co/f1TK5MP
https://ibb.co/s9KTSq2

see above for my nerve study
it really really bothers me they didn't mention my temperature ANYWHERE (unless it's in the image which didn't load but i doubt it) nor did they say what it was during the exam (????) even though they clearly were very worried about it. my ulnar was basically tested 2+ times.

the temperature thing has made me a bit neurotic. is it possible to overwarm my hands to put whatever was wrong with my ulnar nerve into an acceptable range? or is that impossible with my ranges?

also apb doesn't make sense to me. i said this above but they tested that sitting up not laying down, i think everyone at that point just wanted to go home.

thanks in advance dr bland.

oh here's the order, i feel like that's important
they tested my right arm first. my median was never abnormal. but i believe my right ulnar was a little slow. then tested left median nerves which were normal. then ulnar was slow on left. THEN they warmed up my hands like 2 separate times for my ulnar nerve bc my hand started getting cold again. then they ran the emg.

(i can't type in my right hand like litearllly at this very moment. maybe it IS tenosynovitis. there's no tinglign it just feels swollen and heavy. left seems okay but i'm right handed. ulnar nerve is also an issue on a daily basis. but the pain i'm experiencing at this moment is very concentrated at my wrist. i pressed along my ulnar nerve and it's okay right now..when it's irritated it burns like a hot ember.)

jeremydpbland
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That is an interesting paper which I hadn't seen. It wouldn't however change my approach to temperature for testing. In many cases adjusting temperature or correcting for it won't make any difference to whether a test is considered normal or not because you can't make a normal result 'more normal' by warming, nor a very abnormal result 'normal' so as long as the hand temperature is reasonable - ie about 30-34C - then most results are interpretable. I warm hands when they are cold and the results are borderline. The tempeature should be documented though. I don't think temperature makes enough difference to EMG for carpal tunnel testing for it to be worth bothering about but then I very rarely do EMG for CTS. There are some disorders for which temperature does make a difference to EMG though, perhaps explaining the conflicting stories. In terms of positions for testing, whatever keeps the patient and the operator most comfortable will yield the most reliable results. JB

jeremydpbland
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Remind me of which hand the ulnar side symptoms are predominantly in? It's a bit odd that they didn't do the left ulnar sensory study. Once again the NCS have concentrated on looking for CTS or ulnar neuropathy at wrist or elbow and they have relied on EMG to exclude more proximal problems. Still no-one seems to have thought of checking the medial cutaneous nerve of the forearm or the f-waves for evidence of lower brachial plexus lesions, though the normal EMG findings do make that somewhat less likely. Don't get obsessed by the temperature, order or position - none of that matters very much

hoggle
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There are some embedded images which I can't even see. I wonder if they'd give more data like f-waves???? Im going to request them.

https://ibb.co/s9KTSq2
Has sensory ulnar unless you mean they should've tested more fingers. I'm not sure how that works!
EDIT: nm the left is missing. That's where they had temperature issues but see below
https://ibb.co/VBv4tsY
Is from 2015 at Emory and yeah the f-wave is sitting right there. https://ibb.co/6N1Sr7D is from Jan 2022 (not at Emory) but just says normal f-waves

I'll stop obsessing over temps then and trust the results more. My mayo clinic study says my temp was 35 but I still think those results were normalish. I doubt anyone would test me at like 40.

I did not realize or maybe I forgot you rarely do EMG tests for CTS. I will trust my APB results from January and now if they aren't really affected by temps.

I reeeeaaaaaaally want my left APB to at some point go back to normal like my right. I hope that window hasn't closed.

I actually hate sitting bc of neck pain orthostatic issues but that's not going to change the emg. I use my left thumb much more strenuously (in a hyperextended position) than my right. It's my "massage" thumb so I need to lay off that and let the post surgery/dog bite heal more.

I obviously don't *regret* getting ctr but I've noticed as soon as Drs hear I had surgery it creates a huge confirmation bias and they aren't curious to investigate much beyond that. I bring up ntos and I have a Mac nerve study/ntos printout I've shown doctors but nobody takes it seriously. given that my right apb appears to be normal now it'll be even harder. I think it's because I have a long skinny hypermobile neck and they're imagining someone who can barely move their head bc their muscles are so tight.

Re:ulnar--
A week or so ago I think my ulnar was slightly worse on my right but since around time of study it's the left. BUT both ring fingers become equally numb when I type. That's when it's the most obvious. Like I just typed and they're both numb but my left arm might ache a little more. And my ring fingers did not become numb until only a few weeks ago.

(The pain directly in my wrist is different. When I was typing my last message to you, that pain might be fluid, something entirely different and it's dormant atm.)

I'll report back after I get an actual printout of my report. If it has any information. And to talk about pt. If it helps or not. Im not used to ulnar nerve problems. I've only researched median

hoggle
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Do you think my Jan 2022 f-wave study is trustworthy? (if I can't get any data from my most recent study). But my ring finger was definitely not going numb during that period so idk

If my ring fingers are still numb six months from now I can always request a new nerve study. But I need to find a new neuro unless I can somehow demand a better nerve study

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