Charcot-Marie-Tooth Disease & Technical Diving

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djcheburashka

Contributor
Messages
571
Reaction score
68
Location
San Francisco, CA
# of dives
200 - 499
Hi.

During my technical training, it took me a long time to develop control over my fins, particularly on the back kick, for reasons no instructor was ever able to explain.

Last week my Dr. noticed that the bottom half of my calves are pretty skinny, and then found that my ankles are (apparently) unusually weak.

Tomorrow I'm being tested for Charcot-Marie-Tooth.

Has anyone had luck with treatments or physical therapy modalities to get and maintain the ankles strong enough for tech diving?
 
Hi dj,

As you may know, Charcot-Marie-Tooth (CMT), of which there are a large number of types, is an inherited/genetic peripheral nerve disorder. Onset usually is in the first 2 decades of life. In some cases it causes demylenization of nerve fibers, while in others the actual nerve fiber/axon is eroded. Either way, the end result is that nerves that stimulate movement, among others, are adversely affected. Typically, the nerves in the legs are affected first and most severely. CMT is almost always progressive, although it usually advances quite slowly. Following the initial weakness, numbness and pain may develop over a long period.

The existence of CMT certainly could explain a history of difficulty in developing fin control, as well as wasting of the calf muscles and weak ankles, although these alone do not provide for a definitive diagnosis.

PT/OT for CMT usually involves muscle strength building, stretching of the muscles and ligaments, and endurance training (e.g., moderate low-impact aerobic exercise), the earlier the better. These will need to be tailored to the affected individual's particular strengths and deficits. The research suggests that such a regimen is moderately beneficial.

Please let the board know how your medical work up comes out.

BTW, I believe that a number of diving medicine experts would dissuade an individual with the signs you have described from continuing with technical diving, but that of course is a decision to be made between yourself and your physician(s).

Best of luck.

DocVikingo

This is educational only and does not constitute or imply a doctor-patient relationship. It is not medical advice to you or any other individual and should not be construed as such.
 
Hi dj,
The question about muscle strengthening exercises in Charcot-Marie-Tooth is probably best answered by a neurologist and/or a physical therapist. Sometimes with demyelinating diseases like CMT it can be detrimental to overheat/overuse a muscle group. It's probably best to wait for a definitive diagnosis and then work with your PT, your neurologist and a board-certified diving physician to determine what type of diving you can safely do. Feel free to check back in once you hear more, I think it would be interesting and beneficial to discuss it here if you're comfortable with it.
Best regards,
DDM
 
Hi dj,

BTW, I believe that a number of diving medicine experts would dissuade an individual with the signs you have described from continuing with technical diving, . . .

Good luck prying my c-cards from my cold, dead hands.

Duke Dive Medicine:
It's probably best to wait for a definitive diagnosis and then work with your PT, your neurologist and a board-certified diving physician to determine what type of diving you can safely do. Feel free to check back in once you hear more, I think it would be interesting and beneficial to discuss it here if you're comfortable with it.

Yeah, I'm comfortable. As of yesterday they think its either CMT or CIDP. Quite mild so far in either case. We're running blood tests and scheduling a spinal tap. Let me know if you need more detailed data.

Do you know of any neurologists (preferably in New York) with a strong understanding of dive physiology?
 
Good luck with your tests.I'm praying for you that it's a misdiagnosis. This disease runs in my family and I've seen the course it takes.
 
Do you know of any neurologists (preferably in New York) with a strong understanding of dive physiology?

Often local hyperbaric facilities have a good knowledge of specialists in the field.

Here are 3 in the NYC area that have good reputations:

Hyperbaric and Undersea Medicine
Jacobi Medical Center
1400 Pelham Pkwy
South Bronx, NY 10461
(718) 918-7520

Brookdale University Hospital
1 Brookdale Plaza
Brooklyn, NY 11234
(718) 240-6381

The New York Presbyterian Hospital
Wound & Hyperbaric Oxygen Ctr
525 East 68th Street
New York, NY 10021
(212) 746-4426

Best of luck.

DocVikingo
 
My brother and I both are physicians and BOTH of us have CMT. You would never be able to tell I have it by examining me, but he got the crippling form. It is usually genetically determined, usually X-linked and usually passed via a mother to any male children unlucky enough to get that X chromosome from her. The good news is it is of such variable penetrance that one can have it (like me) and never know it exists. Per my brother, who researches and studies N/M diseases, there really is nothing currently to stop the progression of the disease. He is 58 and has walked with posterior calf splints (like small braces) for > 25 years. He was a concert clarinetist, but has had to end that. I am the lucky one. I only know about it as a result of an EMG to work-up an ulnar neuropathy I got when studying for boards and resting my head on my palm while putting my elbow on a tabletop for hours. Depending upon how affected you are and your age, you probably will be able to continue diving for a long time, just maybe not in a rescue diver or diving professional. Trust your neurologist.

If you want more information, you might contact my brother, who is now retired. PM me if you would like his email address.
 
I have just had the provisional diagnosis of CMT. I have been diving for 58 years, scuba 46. I have until recently been active in underwater hockey and spearfishing. I had ankle and feet problems diagnosed as mild polio at the age of 15 but still played active rugby. 17 years later, after a bad fall, I was supposed to have both achilles' tendons lengthened as my calf muscles proved to powerful for physio. I opted out after the right extension caused major instability of my knee. 12 years later after chronic back pain, I was recommended a spinal cage by an orthpod, facet joint ablation by a neurosurgeon. I was virtually thrown out for saying I thought it was stupid and compared it to severing the oil pressure light cable. 2 years later, 2 diving radiologist (a MRI and an Ultrasound) from the next city, press ganged me into a MRI and a neurosurgeon consult. He promptly threw his toys out of the cot as he could not believed my stenosis of the total spine was missed. A neurologist consult showed marked nerve conduction deminishment. A blood test showed marked immature rb cell even though I had a Hb arround 14.5. Thalassemia was ruled out. I was a regular blood donor and the hematologist was monitoring me as I always had a low ferretin level. My raised Hb was put down to the ammount of breath hold diving done. The neurosurgeon said we had to await the stage when the symptoms outweighed the cure. 12 years later I had a bad bout of chronic spinal pain. My GP referred me to a new Neurosurgeon, who told me he he had only seen this in achondroplastic dwarfism, being 1,8m, I definitely was not. He recommended laminectomy of the total spine in 3 stages. I opted out of the 3rd (cervical). Unfortuntely I still have sacral symptoms. Due age progression, my breath hold diving ceased, I had to retire from blood donating, a my proprioception and gate deteriorated. I am unable to stand in more than ankle deep water without falling. If I can't see my feet, I am unsteady and prone to falling. Once I am swimming, I can fin with the rest of the group. 9 months ago, I was running late for a dive at a sub tropical site, so I donned my suit in the car park and walked over the dune to the launch spot. The dive was delayed for 90 minutes, it was a hassle to remove the suit, so I lay in the 1m deep lagoon. (Consulting my computer much later told me it was 34C) I had travelled 2 days by car, not drinking much as I do not like non sugar drinks.
About 15 minutes into the dive, I felt wobbly so aborted. I spent the next 3 days totally exhausted, alternating freezing and sweating. Typical heat exhaustion and dehydration - (no urination for a day). I stopped diving and saw a physican 6 months later. Just have a sugar intolerance not pre diabetes, cardiac seems normal. Was sent to a neurologist, who after mostly seeing stroke victims seemed genuinely excited to see me. Due to very low blood Vit B12, champagne glass torso. hammer toes and high arches, thinks I could have CMT. She took plenty of photos to send to her professor. Also wants genetic and MRI tests. I did a dive 4 weeks ago with a observer without problems. Only a couple of hours afterwards, I felt excessively tired similar to if I push myself too hard with exercise. So now awaiting my fate.
 
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