Bilateral CTS, Carpel Tunnel, Cluster Headaches, now neuropathy in the feet...related?

Amandastrange
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Greetings from the US!
I am a 27 year-old with bilateral carpel tunnel and CTS. I had the ulnar nerve release and transposition on my right (dominant) arm six months ago, and I'm experiencing what seems to be a relapse. I was also misdiagnosed with migraines at 18, but have since been correctly diagnosed with atypical cluster headaches (mine last all day with fluctuations in pain instead of being short-lived). I always thought of them as separate issues, but yesterday, I woke up with a headache I won't soon forget.

This headache woke me up before my alarm went off at a 5 on a pain scale of 1-10, and my usual combination of OTC pain relievers, CBD from a vaporizer, and a scalding hot shower didn't touch it. I had to go to work anyway, so off I went. I noticed that my right arm was worse than it had been for the last few weeks, and a new symptom- the outsides of both ankles and feet started tingling and going numb. Overall, the headache lasted for 10 hours before it finally subsided, and the other symptoms stopped, as well.

Could this be some systematic issue? My mother has Hashimoto's disease, so an autoimmune disease isn't out of the question.

Thanks in Advance!

jeremydpbland
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That's a slightly confusing story. First of all there are two different nerve entrapments being referred to there:

1) Carpal tunnel syndrome is a problem with the median nerve at the wrist

2) The ulnar nerve problem at the elbow is sometimes known as cubital tunnel syndrome - they are different conditions (and in fact ulnar neuropathy at the elbow is more complex than just a single entrapment but lets keep this simple for now)

Neither of them have a known association with headache of any form but people with generalised nerve diseases, for example diabetic neuropathy or the genetic disorder hereditary neuropathy with pressure palsies, are more likely to get both carpal tunnel syndrome and ulnar nerve problems at the elbow.

In the first instance we need to be clear whether we are talking about carpal tunnel syndrome (CTS), ulnar neuropathy at the elbow (UNE) or both?  You are quite young for nerve entrapments so a full story of the original symptoms and whatever backup lab evidence is available would be useful too. JB

Amandastrange
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Sorry for the confusion. I have both carpal and cubital tunnel bilaterally. About a year ago, I saw my primary care physician for numbness and pain in my right arm. Because I work 50-60 hours per week doing a lot of repetitive motion, he thought it might be tendinitis, but the sensations returned after a few days of steroids. He sent me to a neurologist for a nerve conductivity test. She found that I had severe cubital tunnel and mild carpal tunnel. She said that it was most likely bilateral but only presenting as one-sided because I am so dependent on my right. She also said it was odd that my case was as severe as it was at my age. In June, I had the ulnar band release and transposition done. In the last month or so, I've started having symptoms of cubital tunnel again.

The cluster headaches have been an issue for me since I was 18, so I never thought they could be related until my symptoms worsened during an attack yesterday. The outsides of my feet also went numb for the first time during the attack yesterday. When the headache stopped, so did the tingling in my hand and feet.

jeremydpbland
Online

So the NCS were said to show abnormalities at both elbows and both wrists? but symptoms are only on the right side? and there is no family history of nerve problems? Do we have the nerve conduction results? Finally - what exactly are the current 'symptoms of cubital tunnel syndrome'? JB

Amandastrange
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NCS was only done on my right side because initially, that was the only side with symptoms- first, waking up with numbness and difficulty moving the arm from the elbow down which progressed within a few months to sharp, shooting pain waking me up throughout the night. Then, I was constantly dropping things, losing my grip strength, and experiencing a nagging, shooting pain when I was at work. When my doctor explained that overuse and repetitive motion were only going to make matters worse, I tried to force myself to use my left. That's when symptoms presented on the left side. I also struggled recovering from the surgery when using my left was my only option. I told my doctor, but refused a 2nd NCS for the left side. I can't handle another one. So, they told me it was bilateral, but the left doesn't bother me often, so It's not treated. I do have a copy of the results of the NCS, if you'd like to have a look. The only family history of any nerve problems is my mother, who has carpal tunnel in her right wrist from a career in hairdressing. My mother also has Hashimoto's disease, but it hasn't really affected her nerves. Currently, what I experience is right-sided numbness and tingling from the elbow to the 4th and 5th fingers, numbness and tingling in the thumb and index finger, and waking throughout the night with shooting pain on the ulnar side.

jeremydpbland
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it would be useful to see the NCS - you can email them to me if you wish (details in the contacts page). NCS should not be too traumatic - what did they do? I would be inclined to test your feet looking for evidence of a more generalised neuropathy. JB

Amandastrange
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She did a test first without needles, just electrode pads and what looked similar to an ultrasound wand. It was uncomfortable but fairly easy. After seeing deficit from that, she did the test with the needles. Even after being a phlebotomist for four years, I have a crippling fear of needles. Needless to say, the combination of being repeatedly "stuck" and shocked was a thing of my nightmares. I will send you the results of my test.

jeremydpbland
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This is America isn't it! In the rest of the world it is pretty uncommon to do the needle part of the examination for CTS as the majority of us feel that it does not usually add anything useful. There are some situations in which it is indicated but usually when you think the diagnosis may be something other than CTS. JB

Amandastrange
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You guessed it. Lol. It is beyond ridiculous how many unnecessary procedures and diagnoses our medical system gives for the sake of capitalism. They are also more concerned with treating symptoms than they are with finding out underlying causes. Anyway, that's why I'm here. I just thought since all of these things have a common denominator, that they may all be connected by more than tissue.

jeremydpbland
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Well there certainly might be a link between multiple nerve entrapments but I can't quite see how to tie in the headache at present. I'll look out for the NCS. JB

Amandastrange
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It is showing as sent on my end. Let me know if I need to send it again.

jeremydpbland
Online

Nothing received at Jeremy [dot] Bland [at] nhs [dot] net - which is the address I usually use for this. JB

jeremydpbland
Online

Ok I've got the NCS results now - thanks. I didn't do those tests of course and the person who did them can see the waveforms and is in a better position to draw conclusions, as well as being able to examine you and take the history directly so my thoughts on the reported values should not be taken as definitive - I am just looking at the reported numbers.

As you reported, only the right arm was tested so all bets are off for the left side. The right side results seem to me to show little or no evidence of CTS if I am reading the tables correctly. The median sensory conduction velocity was 47 m/sec compared to the ulnar at 53 and the radial at 50 - these are not significantly different results. The short segment palm to wrist conduction velocity seems to have been 70 m/sec for the median nerve and 78 for the ulnar, again not significantly different. The median distal motor latency was, by my standards, normal (just) at 4.5 msec. The report does not give that lab's normal ranges so it's hard to be sure on what basis they describe it as 'mild to moderate' CTS. 

Now for the ulnar nerve at the elbow. The forearm motor conduction velocity was 64 m/sec and the velocity in a segment around the elbow was 45 m/sec In the USA the round elbow segment is usually 10cm long and a value <50 m/sec is considered abnormal, so that qualifies as an ulnar lesion at the elbow by local standards. The ulnar sensory potential at the wrist was not impaired. The report states that there is 'moderate/severe conduction block' at the elbow. This term means that the size of the motor response recorded from the hand is smaller on stimulation above the elbow than below the elbow. These values can be seen in the table of results - 6.4 mV below the elbow and 7.3 mV above the elbow. The response from stimulation above the elbow was therefore larger and you did not have conduction block at the elbow on those measurements I'm afraid. All you had was mild slowing of motor conduction in the elbow segment. Again I am not sure exactly what justifies the description in the conclusion as 'moderate-severe'. The doctor thought that the needle examination indicated damage to the nerve supply of the ulnar nerve innervated muscles but that could have resulted from problems in the neck as well - both of the muscles which were reported to be abnormal are connected to the C8 root via the ulnar nerve so a C8 problem is also a plausible explanation for this.

I think this does illustrate that plain language terms indicating severity in nerve conduction reports are almost meaningless - one lab's 'very mild' is quite likely to be the next lab's 'severe' and there is no agreement about what these things mean. We do our surgical colleagues no favours by writing these things in reports without qualification. I can't say I am too surprised that ulnar nerve surgery has not had a great impact on this, though it is of course easy to say that in retrospect.

It's hard to know what to suggest next. I would not really be convinced that the problem has clearly been shown to be a peripheral nerve entrapment so far, at least on the information I have available - so perhaps a second opinion from a fresh perspective might be useful. JB

Amandastrange
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Thank you SO much for taking the time to explain all of that! No one really explained anything more than the anatomy of the nerve complex, so I had no idea what those results meant. It makes me feel better to essentially hear that I'm not crazy and that there could be more to the story than just a wonky elbow.

jeremydpbland
Online

I hope that puts the NCS results into a perspective a little at any rate. Please let me know the eventual outcome - as you can see we have many 'difficult' cases in the forum and I learn as much from patients as you learn from me, but I get more out of it when I hear what happens in the long run. JB

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