Saturday, August 19, 2006

MELAS (Mitochondrial myopathy) an unusual condition and diving

My husband has been diagnosed with mitochondrial myopathy, namely MELAS. He so wants to dive again but I don't think it is safe. Is there any information for this disease subset and diving?

So sorry to hear of your husband's diagnosis. The disease consists of mitochondrial myopathy, encephalopathy, lactacidosis, stroke (MELAS) and is a progressive neurodegenerative disorder.

The typical presentation of patients with MELAS syndrome includes features that comprise the name of the disorder such as mitochondrial encephalomyopathy, lactic acidosis, and strokelike episodes. Other features, such as diabetes mellitus and hearing loss, clearly are part of the disorder.

Organ systems included in the multisystemic involvement are the central nervous system, skeletal muscle, eye, cardiac muscle, and more rarely the gastrointestinal system.

First, there is nothing in the diving medical literature about the effects of pressure/depth on the condition; and second, there is nothing in the literature about the risks involved with this particular disease entity - in other words, his fitness to dive. The disease encompasses a broad range of organ systems and stages of incapacitation - thereby making it almost impossible to determine his fitness to dive from afar. We do not know the stage of the disease in your husband.

However, here are some factors that would increase his diving risks:
--Multiple strokes occur and are associated with seizures, adverse to diving. Residual neurologicals from the strokes would make it difficult to manage the physical requirements of diving.
--Myopathy would make it difficult to manage the gear and perform self and buddy rescue.
--Eye problems might make it difficult to gear up and read the gauges.
--Diving can effect hearing. Hearing loss should be quantified before diving.
--Cardiac myopathy might make diving quite risk, as there are changes in the central circulation that can put a borderline heart problem into heart failure.

It's doubtful that diving would make your husbands condition worse or speed up the changes that are bound to occur. If he's early into his condition and can handle his gear, entry and exits without difficulty, then he might dive in shallow, warm water without current or surge. He must be aware of the increased risks involved with the possibility of stroke and cardiac effects and inform all divers, divemasters and instructors of his condition. Shallow diving is a must because of the difficulty in differentiating his neurological illness from the effects of decompression illness.

My husband's illness is at a point of "TIA" symptoms frequently, heart disease, gait difficulties, orthostatic hypotension and muscle atrophy. He had a heart attack in 1996 and bypass in 1997. He has diabetes but has always been controlled with oral meds. After 2 years, he received 3 stents for restenosis. He passed a stress test and was allowed to dive to 45 feet only by his cardiologist. The last time we dove was 3 1/2 yrs ago in Cozumel. He did fairly well but I did notice he tired easy. So since that time his neurological symptoms starting showing up and over the course of the 3 years, he has had 7 more stents, an MI in April and a positive muscle biopsy for mitochondrial disease. CT scans and a PET scan do not show strokes but he has had to do PT for 9 months for residual stroke like symptoms. Speech therapy to work on cognitive memory issues. But looking at the prognosis for the disease and his complicated medical history....of course he wants to dive again. He is also on parkinson drugs and neurontin for peripheral neuropathy.The neurologist told him no way so he is having a hard time accepting that loss to. Thanks again for your information. He is only 51 so it is very hard to deal with. I guess since he has seen people with MS dive he was holding out hope! Sorry if I wasted your time. It's very hard for men to loose independence!! thanks

My answer:
You did not waste my time! This is a very interesting case and I really would like for him to be able to participate in some water activity - but on the surface! I invariably suggest that people try snorkeling over shallow reefs. This usually turns out to be a good second choice to diving and the dive shops on your trips always know of good places to enjoy the reef fish.
He really does not need to be underwater with his situation.