Need advice on whether to get surgery with my unusual circumstances...

That's quite a challenging one. 5 sets of normal NCS over a long period is very unusual if this really is CTS and the lack of response to injection if that is what you are really describing, is worrying. I think one would want to know a little more:

a) Does 'did not help' in respect cortisone injection mean that they had no influence at all o the symptoms, even temporarily? What dose and steroid was used?

b) Who did the EMGs, what testing protocol/machine did they use and was the same person able to look at the entire sequence of results or were they done by different people. Not all EMGs are done to the same standard I'm afraid

c) What exactly do the ultrasound images show - there certainly are cases of EMG negative, ultrasound positive CTS but expertise with ultrasound imaging of CTS is also thin on the gorund and some other things can be mistaken for it. JB

Jeremy,

Thank you for your response. So much gratitude to you! Yes, very complicated and I think the fact I wear the splints, take neurtontin & sleep meds, exercise and eat well is almost a mixed blessing as it might be masking what is really lying underneath. I feel like I'm on the cusp of something and your answers/questions are exactly some of the ones swirling in my head.

I did read the study, "Sleep-related disorders in carpal tunnel syndrome" where there were positive results for individuals receiving the surgery "significantly reduced the amount of nocturnal movements" but my situation seems a little unique in that my day-pain is minimal, only brought on by heavy typing / phone and sleeping.

http://www.ncbi.nlm.nih.gov/pubmed/8800348

Here are the answers to your questions:

a) In saying, 'Did not help', I mean the perceived weakness of the hands did not go away, the sleep didn't improve any further and the burning that occurs when I'm typing or on the phone for more than 5 minutes still continued. (Shaking hands will usually make numbness/burning subside). Measuring improvement is one of the areas that has been difficult without having pain in the day. Part of me wants to go without the night splints for a week to trigger the heavy pain response and than try the cortisone but the thought of 1 week without sleep is terrifying.

I have record of one of the injection from 2009. This was performed by a hand surgeon at the Mayo Clinic:

"A 25-gauge needle with 1 cc of 10-kenalog mixed with 4 cc of 1% lidocaine were injected into the carpal tunnel."

One of the big questions swimming around my head are whether the injections are really just effective for eliminating that heavy day-pain that I read about or does it also help in night symptoms?

b) The EMG/NCVs. It was mentioned to me this year that they are heavily operated dependent so I believe I've been lucky to have top neurologist performing these. It's tough for me to tell the method protocol on the sheets I have. Is there something I should look at on the sheets? The machine is not listed. I'm awaiting the sheet on the last negative result from 1 month ago but these last 3 were done by Neurologists at Northwestern University Hospital in Chicago. (all different individuals). The neurosurgeon had all the results but whether he compared them, I'm not entirly sure. I posted the result of the second to last one at the end of this post. (w/o numbers).

c) The ultrasound images were done using a high frequency linear array tranducer utilizing our standard median and ulnar nerve ultrasound protocol. Grey-scale and color flow Dopper techniques were employed. Provocative dyanmic maneuvers were also performed.

The results:
Left Side: Subtle median nerve flattening that can be seen in Carpal Tunnel Syndrome. No space Occupying Lesions
Right Side: Subtle median nerve flattening that can be seen in Carpal Tunnel Syndrome and intraneural increased vasculaity. No space Occupying Lesions

Any further insights would be greatly appreciated. The idea of performing surgery as a "stab in the dark," is a little frightening to me.

All the best!

--------------Nerve Conduction Study-----------
1. Normal bilateral median distal motor latencies, CMAP amplittudes and right motor conduction velocities

2. Normal bilateral ulnar distal motor latencies, CMAP amplittudes and right motor conduction velociies.

3. Normal bilateral median antidromic and mixed palmar orthrodmic distal sensory latencies with normal SNAP amplitudes, as significant transpamar and/or D-4 medium: ulnar latency differences were not noted.

4. Normal and symmetrical bilateral ulnar antiromic and mixed palmar ortodomic distal sensory latnecis with normal SNAP amplitutes

5. Normal and summetrical bilateral superficial radial anitdromic distal latencies with norma SNAP amplitudes.

--------Needle Electrode Examination--------
1. No increased musce membrane iritability within sampled right upper extremity muscles

2. Unrevealing motor unit potential analysis within sampled right upper extremity muscles

Like quite a few Americans you have access to an impressive amount of your records.

Firstly the injection - that one was a pretty small dose of steroid (10mg of triamcinolone) so there is a possibility that it was simply not enough. Steroid injection in CTS usually promptly alleviates both day and night time symptoms and a complete failure to respond is worrying - if an adequate dose is used. Most of the decent studies which have demonstrated the high response rates have used about 40mg.

Secondly the NCS - it looks as though those have been done well - in the USA the qualification to check for is board certification in electrodiagnostic medicine - specialists from a variety of disciplines including neurology and physiatry may be qualified to do these.

Thirdly the ultrasound - if all they saw was 'subtle median nerve flattening' then that is not really very convincing evidence of CTS on imaging. By far the commonest finding on imaging is enlargement of the nerve just proximal to the carpal tunnel, The doppler blood flow studies I would view as a bit experimental at present as different authors seem to get very different results with these.

Overall I would view surgery for CTS in your case as having a rather uncertain outcome at this point I am afraid. If done by a good surgeon then the risk of making you worse is probably fairly small but I would not be confident of cure. In our local patients here in my bit of the UK, patients in your situation who have surgery have about a 60% success rate - where success means complete cure or substantial improvement in symptoms. JB

JB-

Again, thank you! Your insights, and this site, have been invaluable and have led me to ask the right questions of my physicians. I'll keep you updated on this string and fill out all my outcomes within the system to help in your research. I will definitely be paying the CTS world forward.

I do have an accomplished surgeon. He not a fan of cortisone shots so doesn't do them. I'm thinking that if the OT doesn't provide sufficient relief I might go ahead and seek out the a cortisone shot at the more ideal dosage.

Do you believe it makes a difference whether a hand surgeon performs the shots over a pain doctor?

My 2 concerns:

a) I read during the first few hours, whether the lidocaine relieves the pain symptoms, is also critical in helping to predict surgical success. If that's true, that seems a bit odd to me since I thought the purpose of the local anesthetic is to numb everything out. If this is true, it provides quite a challenge as my symptoms appear at night.

b) According to the study shown below, with each injection, the chance of surgical success decreases. This would be my 3rd set of shots, although, the previous ones were in 2009 and 2007.

http://www.ncbi.nlm.nih.gov/pubmed/24286569

Heading into the home stretch of decisions.

Many thanks! All the best!

The response to lidocaine has never been shown to correlate with subsequent surgical success. Vahi et al is a very poor quality paper indeed - based on patients recall of what happened some years previously and completely uncontrolled for other variables. We have just looked at the same topic more systermatically and patients who have been injected before surgery do just as well as those who go straight for surgery - some of them better if you consider never needing surgery to be a better outcome. Your injections seem to have been with pretty low doses anyway so I'm not sure they count. JB

Hi JB-

I hope all is well with you! I told you that I would provide an update so wanted to give you the latest and get your thoughts:

I had the injection per your recommendation and my physiatrist uses the same doses that you also recommend. She does it under guided ultra sound and noted that "the right median nerve was observed to be bifid with enlargement and swollen fascicle appearance." Overall, the shots on both wrists have provided some relief throughout the day, basically taking the edge off while I type, but I still can't go w/o wrist splints at night.

I got a 2nd opinion from an orthopedic hand surgeon (I am currently seeing a neurosurgeon who specializes in peripheral nerve issues). He said you can't really trick the nerves at night if you are bending your wrists for multiple hours. That makes sense to me. He also said, the fact my hands burn after holding the phone, driving and sleeping could mean some issues with the cubitial tunnel. I've tried night splits on my elbows and those do offer additional relief. His suggestion was to do a simple decompression of the elbow & CTS release. I've never had a 2nd opinion that added more to the mix :).

So, overall, when I put all the evidence together, it seems that at night I curl my wrists and bend my elbows which cuts off the flow. I'm not sure it could be characterized as official CTS or CuTS, but seems like I just have less tolerance at night-time with the prolonged bending. Does this seem like a feasible assessment? I'm trying to make up my mind on surgery and the ultra-sound does indicate also that on both right & left ulnar nerve, " it is mildly perched on the medial epicondyle with elbow flexision." There is also a "small accessory anconeus epitrochlearis that causes mild mass effect on ulnar nerve on just the right side."

I am pretty set on doing the CTS release as it's fairly minor as surgeries go but feel compelled to add the simple decompression, in light of the additional evidence.

All the best!

It seems to me that a lot of the 'abnormalities' found in your results are pretty marginal ones. It's curious that the right median nerve was decribed as bifid on this study but this apparently wasn't seen on the earlier one. The elbow u/s result is also not a very major abnormality. When we are investigating patients with a long history of troublesome symptoms and mostly normal results there is a great deal of pressure to 'find something' so I think relatively minor imaging changes have to be taken with a small pinch of salt unless the symptoms really do fit in with their being the source of the problem. Overall then I would still view surgical intervention here as having somewhat uncertain outcome - both at wrist and elbow - but as long as you appreciate that in advance and your surgeon is confident that he has a fair chance of improving matters it is probably not an unreasonable course of action. Personally I might be more inclined to operate on only one site at once as it makes it more difficult to analyse the subsequent change in symptoms, if any, if you are dealing with two simultaneous interventions. Whatever you decide I would be delighted to hear how it turns out. JB

Thanks again JB for for your continue wisdom. It is extremely helpful in my decision making process. I'm am definitely going in with an appreciation of an uncertain outcome and most definitely will share the results.

I checked my previous US, and yes, the right median nerve is noted as bifid and mildly hyperemic. Those were the only other noted pieces that I did not include from above. My apologies. I have read studies that indicate those tend to appear more often then not in more 'solid' CTS cases, although are also prevalent in the general population. That seems to be a theme for me. The surgeon wants to start on right side as all the slight abnormalities exist there.

I am nervous about doing both elbow and wrist together. The wrists I'm committed too, it's the elbows that make me nervous because of the recovery. My job here in the States involves data and testing so the appreciation for having that singular variable to understand the impact is something I appreciate. I think it comes down to what can I do to ensure the maximum impact.

My worry is if I don’t do both elbow & wrist, I might not realize if success happened since there seems to be several shared symptoms in both CuTS & CTS. Do you think this is a valid concern?

I did increased my Neurontin this week, by mistake, (1800mg->2100mg), one night, which has led to even more relief during the nighttime and daytime. I guess that is further evidence of an agitated nerve somewhere in the system, which makes that idea of a surgeon seeing both elbow & wrist from the inside seem also like a good idea.

Once again, my sincerest gratitude,

I'm not convinced that bifid median nerves are a risk factor for CTS. Good luck with surgery. JB