Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

November 23, 2016

Body Builder Regains Energy After Surgery for Myasthenia Gravis

By SharingMayoClinic

Robert Clark with his busy family. Six years ago, Robert Clark thought he was having a stroke. His left eye drooped shut, and he began to have difficulty swallowing. A competitive body builder used to working out six times a week, Robert rarely got sick. So when a local physician dismissed his symptoms, he sought out a friend who worked at Mayo Clinic.

His friend recommended he see Paul Brazis, M.D., a physician who specializes in neuro-ophthalmology. After examining Robert, Dr. Brazis suspected myasthenia gravis, a rare autoimmune disorder characterized by weakness and fatigue of the skeletal muscles as a result of an enlarged thymus. The thymus, an H-shaped gland situated in the upper chest that produces T-cells to fight disease, is supposed to shrink after birth, when bone marrow takes over this function.

Following a series of tests, the diagnosis of myasthenia gravis was confirmed. Robert then faced difficult decisions about managing his disease while living life as he wanted.  

Weighing the options and risks

Robert learned that one way to treat myasthenia gravis is to remove the thymus gland. The surgery had risksy — it would involve splitting Robert’s sternum — and the recovery would be lengthy.

A father of five, Robert opted to postpone surgery as long as possible. Instead, he began taking prednisone to help manage his symptoms. But the medication had side effects.

“My second youngest daughter was born when I was diagnosed, and I couldn’t see her,” Robert says. “Everything was blurry.”

Over time, as Robert’s symptoms increased, doctors increased his medication dosage. After four years, the medication's side effects were interfering with his quality of life, as were the double vision and headaches he experienced due to myasthenia gravis.

“It was horrible. There were times when I was on a high dose of prednisone, and it felt like someone was sitting on my chest,” Robert says. “You don’t feel normal. You feel like you’re fighting yourself everyday. It was hard to do simple things like holding one of my kids.”

A unique surgical approach

In March 2013, Robert met Mathew Thomas, M.D., in Thoracic Surgery at Mayo Clinic’s Florida campus. Dr. Thomas thought Robert might be a candidate for robotic thymectomy, a minimally invasive procedure where the thymus gland is removed through three small incisions on the side of the body.

“Patients go home the day after surgery, rather than spending three to five days in the hospital,” Dr. Thomas says. “Mayo Clinic is a high-volume center for thymectomies. With our expertise, I felt confident that Robert’s recovery would be much faster with a robotic thymectomy, and we could help him get his life back.”

On Sept. 30, 2013, Robert underwent the surgery with a multidisciplinary team of ophthalmologists, neurologists, radiologists and surgeons.


“I can’t thank Mayo enough, because they gave me my life back.” — Robert Clark


He noticed the difference immediately.

“Before surgery my muscles would lock up. It was hard to talk and hard to swallow,” Robert says. “But when I woke up in recovery, it was different. I told Dr. Thomas, ‘It’s gone. I don’t have any pressure on my left eye. I can move my eye. I can see and don’t have double vision.’”

“I feel so alive”

Since his surgery, Robert has remained symptom-free.

“I feel so alive,” he says. “My kids are able to enjoy me and not see me tired all the time.”

Dr. Thomas recently ran into Robert at a basketball game and was pleased to see the difference in his once extremely fatigued patient.

“It was priceless to see him healthy and able to fully engage with his kids,” Dr. Thomas says. “It’s rewarding to know that he is able to move on with his life and do other things rather than focus on myasthenia gravis.”

For his part, Robert couldn’t be happier.

“I feel like I’ve been given a second chance,” he says. “I can’t thank Mayo enough, because they gave me my life back.”


HELPFUL LINKS

 

Tags: Dr. Matthew Thomas, Dr. Paul Brazis, Florida Campus, minimally invasive surgery, myasthenia gravis, Robotic Thymectomy, Uncategorized

I am the wife and best friend of a 72 year old man with a diagnosis of MG about 4 years ago. His antibody blood count was extreemly high once tested. He has had low tyroid for many years and we thought his muscle fatugue was due to throid issues. Given his age no surgery is offered. I understand the anger of many of these posts if only for their own suffering. I guess I enjoy the discussion and know each MG patient is different… some say like snow flakes are all different. I learn from this sharing and want to offer up a few questions… 1) do any or all MG patents have Low Thriod? 2) were any MG patents exposed to chemicals like Agent Orange… defoliants? others? 3) Have any if you that had the Tynecomy (sp) found that the so called normal size/no lumps thymous was far different once removed? I wonder if we all shared more if some new information might lead to a better understanding and/or less suffering.

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I was diagnosed with Ocular Myasthenia Gravis 2 1/2 years ago—–had some problems with drooping eyelids, but was only on 4 mg. of Prednisone, and was doing well.
However, 2 years later, I had a bad fall at home, and broke my femur bone. I was hospitalized for 2 1/2 weeks, but the anesthesia triggered a "bulbar crisis" with my MG.
Therefore i had to go to the ER twice, in April and May, because of breathing and swallowing problems i.e. I felt like I was going to choke to death.

each ER visit for this led to a 10 day stay in the hospital–partly in the ICU and also to to get PLASMA PHERESUS treatments, ( to take out certain substances in the blood).
This helped, and I have had no recurrences since May 11. However, now I have to take even more medication—at one point I was up to 60 mg of Prednisone ( now 20-30), plus Mestinon, and Azathioprine–all of which are causing me to have terrible side effects, at the age of 89 ( extreme fatigue, weakness throughout the body, insomnia, and pain) etc..
Since MG is a fairly rare disease, there are few specialists in NYC who have extensive experience with MG patients. I would prefer a COMPREHENSIVE MYASTHENIA GRAVIS CENTER, in a major hospital , like the Mayo Clinic , or the George Washington Univ. Medical School in D.C, using a Team Approach—but so far have not found anything like this in New York City.

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Thank you for your comment. While we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website, you are welcome to seek help from Mayo Clinic. Please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments.

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.

COMMENT

After reading several different comments, I find that folks are not taking into account that everyone body is different and their MG symptoms are also different. In fact their case of MG may also differ. For example I have a (thymoma) enlarged thymus with a small tumor growing on my thymus which triggered my MG while others have MG without a thymoma. It’s people who have MG without the antibodies that attack the nerve-muscle communication. So you cannot say it’s impossible to go into full remission after a thymectomy when you don’t fully understand that specific persons body type, MG type and symptoms. Yes it’s people who go into 30+ years of remission after a thymectomy while others don’t. It’s call the snowflake disease because it’s different from person to person. Age also play a role in your symptoms and recovery. My MG is actually a secondary condition caused my enlarged thymus gland with tumor growth just as the guy in the article. My doctors told me that because of my age and catching my condition early I have a high success rate of total remission just like the gut in the article because my MG is brought on by the tumor. My body immune system is over firing to combat the tumor. Once the tumor is gone my body will reset itself. In fact itself already going through the set process before I have my thymectomy because of taking LDN ( low dose naltrexone) which is a good drug for autoimmune diseases. I’m having a thymectomy RAT in a few weeks. That’s a surgery that’s happening within a few months of being diagnosed. The sooner you diagnosed with the aggressive treatment, the sooner you get better long term. Obviously people are not fully educating themselves on their conditions and trying to create a one size fits all type of scenario when this disease is very complex and distinctive/distinguished from person to person. CBD/THC helps me while it exacerbate others. Sunlight gives me energy while it weakens others. Vitamin D gives me energy more than my Mestinon. Benadryl affects others but doesn’t bother me. My symptoms are mainly arm muscle weakness and droopy eyelids with double vision but after Rituximab I don’t get double vision anymore. The Rituximab alone has helped my symptoms by 25%. I only need PLEX plasmapheresis every few months while others need it weekly. I believe with the faith in God that I will go into full remission immediately after my thymectomy because I’m a unique MG patient with a unique outcome. I people are not fully aware of this disease and it’s difference in behavior depending upon the person. That’s why it’s no cure because it’s hard to find why it happens to people to even find a cure. In some cases the thymectomy is the cure depending on your reason for getting MG in the first place. MG without a thymoma would probably see no benefits vs a MG patient with a thymoma because the thymoma is the cause of the MG. Get rid of the cause and the secondary symptoms and causes go away. This is exactly why the guy in the article is cured.

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