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November 23rd, 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.

An 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.”


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

Comment


surhae
@surhae

Posts: 1
Joined: Dec 26, 2016
Posted by @surhae, Dec 25, 2016

your story is interesting and inspiring. My husbands Dr gave him prednisone too but then tirated him on to masinon (sp) then Celcept. Dr said that there was no growth on his Thymus so surgery was not an option. I wish this story had more information so I could compair this case with my husbands case and treatment.


brandle95
@brandle95

Posts: 1
Joined: Jan 02, 2017
Posted by @brandle95, Mon, Jan 2 8:20am

My 20 year old daughter, Abbie May Randle, has recently been diagnosed with Myasthenia Gravis. We were seen by a wonderful neurologist at Mayo in Rochester, MN. She has just started medication. Can her records be looked at by the team that did Mr. Clark’s surgery & PLEASE be considered for this same surgery?


allentacey
@allentacey

Posts: 5
Joined: Jan 02, 2017
Posted by @allentacey, Mon, Jan 2 5:08pm

brandle95 a full sternal thymectomy is recommended because robotic surgery is not as effective. Every Thymectomy Trial for this reason has to be done by full sternal removal. The Dr who “invented” Robotic Thymectomy Surgery found over two year studies that it is up to 15% less effective.


mom24kids
@mom24kids

Posts: 2
Joined: Jan 02, 2017
Posted by @mom24kids, Mon, Jan 2 2:30pm

This is a very dangerous and misleading story. It leads people to believe the surgery is a miracle cure. It is not. Many people have the surgery(myself included) and show no improvement at all.

It is scary to me to think that such a large medical institution as Mayo would publish such a dangerous article.


allentacey
@allentacey

Posts: 5
Joined: Jan 02, 2017
Posted by @allentacey, Mon, Jan 2 9:18pm

You say “no improvement at all? How do you know Myasthenia Gravis wouldn’t affect you worse?


mom24kids
@mom24kids

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Joined: Jan 02, 2017
Posted by @mom24kids, Wed, Jan 4 12:59pm

Ok let me rephrase. The five years I was diagnosed before the surgery my only symptom was double vision and I maintained on mestinon only.

Since full sternal thymectomy almost 12 years ago my MG has progressed to affecting my speech, swallowing, arms and breathing. I have been on IVIG and prednisone and I am now looking at cellcept.


mary1181
@mary1181

Posts: 2
Joined: Jan 02, 2017
Posted by @mary1181, Mon, Jan 2 4:04pm

Mayo clinic won’t even see me. They’ve reviewed my medical file from my nurologist but refuse to try and help me. I’ve gone through ALL the treatment including a tymectomy. Unlike this man who could have the robotic removal I had to have the invasive sternum cut. I went through the risk hoping for improvement of any kind. Here I am 6.5 years after my tymectomy, not able to take prednisone, mestinon, cellcept, imuran, plasma pheresis, but I can have IVIG for help when I’m not battling insurance for approval. Don’t believe everything you read. If this man had woken up from his surgery and was miraculously better that’s amazing. It is truly a miracle, not Mayo for finding a supposed “cure”. Myasthenia Gravis does NOT have a cure. Do your research. There is only remission IF you are lucky. And, in the past 9.5 years since my diagnosis I’ve met 1 of 200+ that has gone through remission. AND that remission only lasted a couple years. I’ve watched too many die from complications of MG. Don’t release an article like this without all the information included. Honestly, it’s disgusting that Mayo wrote this and credited doctor’s for “curing” this man. There is NO KNOW CURE! Remission is possible so there is always hope. But, don’t be a disgrace to the medical community and those of us suffering from this disease everyday. It’s unethical.


allentacey
@allentacey

Posts: 5
Joined: Jan 02, 2017
Posted by @allentacey, Mon, Jan 2 9:16pm

If you “know so many who have died from MG” they must not have the disease. About 4% are very brittle Mtasthenics. I met online a young lady from Indiana who went into immediate remission from a full thymectomy, not cervical, and it influenced me. I offer help since 1998 and met quite a few who have acheived remission. All of those had a full sternal crack. If any thymic material is left you are left with Myasthenia Gravis.


mary1181
@mary1181

Posts: 2
Joined: Jan 02, 2017
Posted by @mary1181, Mon, Jan 2 9:50pm

You need to reread what I said. I said they died from complications from MG. I can direct you to many families who have lost their loved ones from those complications. Don’t you dare tell me they didn’t have Myasthenia Gravis. I’ve had multiple scans and I do not have any thymic material left and I did not have this miraculous remission. When i woke from my surgery I went into crisis actually. So go back and re-educate yourself before you try and correct me or anyone else that has posted here concerned about this article. I’d like to see you stand up and explain to me and anyone else with MG AND their family that we are wrong. State all the facts, not just the sugar coated parts that you feel you need to share.


pbollini
@pbollini

Posts: 1
Joined: Jan 02, 2017
Posted by @pbollini, Mon, Jan 2 4:37pm

I agree with @mom24kids. This is very dangerous and I cant believe that the doctors authorize one publication like this. I have MG and the surgery is not a miracle for the most part of the patients.


allentacey
@allentacey

Posts: 5
Joined: Jan 02, 2017
Posted by @allentacey, Mon, Jan 2 5:14pm

85% of MGers helped by a thymectomy isn’t to be credited to robotic surgery but “most part” is not credible by proof of the facts as most of us are satisfied.


allentacey
@allentacey

Posts: 5
Joined: Jan 02, 2017
Posted by @allentacey, Mon, Jan 2 5:01pm

I am very educated in Myasthenia Gravis, its affects, its treatments. I was first “taught” MG by Dr David Kaufman a Neuro-Obpthalmologist who instructs Neuologists Myasthenia Gravis. He started me on a high dose of Prednisone and two weeks later my symptoms changed the MG ones more pronounced. At my scheduled second week at a 20mg lower dose of Prednisone, 40mgs, then he started me on Mestinon one tablet every four hours. I was briefly hospitalized to stabilize Myasthenia Gravis by reducing the high dose of prednisone and increasing the Mestinon which “cured” my extreme double vision on the first tablet! That hospital is where I found Dr Raina Ernstoff which I didn’t know was the Chair of the MSAB/MGFA ( the year was1997). Dr Ernstoff positively diagnosed my Myasthenia Gravis and scheduled a Full Sternal Thymectomy which involved getting all thymic material. Three days after the thymectomy I was sent home, (standard practice) in MI where before I rested I walked a 1/4 mile! I gradually reduced Mestinon and Prednisone as the brand name Imuran 50mg taken 3 times a day with all three meals took effect. December 17, 2001 I was taken off all MG Medication when a gall stone tried its best to kill me. Fifteen years later I am in drug induced remission needing a half tablet of Mestinon only because I have been on a therapeutic dose of Bactrim Ds 800-160mgs since January 20, 2012. The doctor who “invented” VAS Robotic Thymectomy Surgery kept meticulous records reports robotic surgery is up to 15% less effective with regular reports for 2 years. All of the Thymectomy Trials require a Full Sternal Thymectomy, including the most “recently” completed sucessful Study. My question is why do you support the least effective surgery? I have been through over 20 surgeries and felt a Thymectomy hurts a lot less than my knee surgery? I hope this helps!!


Joyitl
@joyitl

Posts: 1
Joined: Oct 23, 2012
Posted by @joyitl, Wed, Jan 4 12:34pm

I’ve been in remission (?) from MG for about 6 years. I have been treated with ivIG from the beginning, receiving it now every 8 weeks; I added Mestinon 6 months after diagnosis. I am positive for the antibodies and had general weakness as well as difficulty swallowing. My doctor didn’t suggest the surgery because of my age at diagnosis (49) and no tumor. I agree that it is irresponsible of MAYO Clinic to write this as if it’s a remedy for anyone with MG. Every patient with a neuromuscular disease is slightly different and responds differently to treatments. Which is exactly why insurance companies need to realize this and cover patients who respond well to ivIG. Mayo does a disservice to the MG community who already fights the daily battle of misinformed and poorly educated physicians on this disease.

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