Thymus removal is not a guaranteed cure. I just had mine out in June and had a crisis following surgery, so I am have moderate to severe symptoms (getting much better with weekly IVIG.)

My surgeon explained that most females in my age group do not obtain remission with thymus removal, but usually in my age group and moderate bulbar symptoms, I could hope for a reduction of symptoms.

From all of the studies I've read, the younger, female, with moderate or severe involvement without thymomas faired the best with improvement after the procedure and improvements were usually noticed in the first two years following procedure.

I'm not sure about the rates of remission or improvement, but I am now looking into having the surgery.

What type of surgical approach did you have and what was the recovery time like??

Joe

I was in the hospital for 5 days. I had trouble swallowing and eat for a while. The nurses had to crush my meds in jello so I could get it down. My chest was sore for a while but went caming 3 weeks later but was still weak. I don't have to much problems with my speech or swallowing but have weakness in my arms and legs and when I try to do something I start breathing heavy. I am on 20 mg of prednisone and 100 mg of Imuran and 120mg of Meston and I am tired all the time.

What surgical approach did they use? Did they go through the neck, center of chest or through a rib?

Joe

They went through the Chest

Thanks Cassy, I'm on the 100mg or Imuran with allopurinol to make it stronger, 160mg of Mestinon each day, I was on prednisone last summer but ended up with bad osteoporosis.

Like you I tire very easily and I did respond well to IVIG. I'm being sent to a MG clinic in Boston to look into a thymectomy.

Joe

I had my surgery at Brigham and women's Hospital in Boston. My Doctor is Thoracic surgeon Michael Jaklitsch. He is a very good Doctor.

Thanks, my neurologist in Manchester NH was talking either Brigham & Woman's or Mass General. For whatever reason the referral was sent to MGH, I'm still working on getting an appt setup.

The surgery sounds awful though....

I had thymoma tumor removed in '94. At the time I had no MG symptoms. It came back in "99 and had it removed again. Still no noticeable MG symptoms. It was not until '09 when I had double vision for a while and then the droopy eyelid. Was diagnosed with general MG in '10. So this only suggests that MG is different in all of us and comes and goes when it wants. I know for me my symptoms get worse without warning and then wane but always come back. Just waiting for the day when it decides to leave for good. Sure we all wish for that.
Al

I had my thymus removed due to thymoma in Dec. 11 & was diagnosed with MG in January 12. Somewhat of a medical blunder but that's another story.
I responded very well to treatment at diagnosis but that in no way has knocked MG out of my system. Almost two years in and I have been on a slow and rather steady decline.

I wish I could tell you differently but that has been my experience to date.

wishing you well.
larissa

I had the thymectomy in June transsternal so straight throughout the center of the chest. I was in the ICU for three days and was then moved to the neurology floor for four more days before getting discharged. I had an ng tube so I didn't have to swallow any pills my first four days post op but I didn't have any problems eating or swallowing so I had my fair share of Popsicles. I was actually supposed to have my procedure done by doctor jakisch but he was out of the country so I had mine done by the chief of surgery doc. Shamberger at children's hospital.
Joe, the surgery is different for everyone but I am a supporter of the surgery because my recovery was smooth sailing. I woke up from the surgery smiling (a thing I hadn't been capable of doing in months) and during my time in the hospital they kept me comfortable and out of pain. I was terrified of getting the surgery because they are literally cracking open your chest but bow that it's behind me I can say that I am so glad I did it. Also, if you have the procedure done through the sternum, rather than robotically you ensure that the entire thymus gland has been removed. If even the smallest piece of thymus is left the effectiveness of the surgery can be compromised. At home my limbs were definitely weaker and I had to take a nap everyday for about the first month post op. I went home on Tylenol and ibuprofen because my pain was so minimal! I would recommend the surgery.
Good luck joe!
-annie

Thanks Annie, certainly this is one to consider carefully but from all indications it's the right way to go.

Actually I just got off the phone with Mass General and I have an appt with Dr Amanda Guidon on the 26th of September to go over the possibility of a thymectomy. I was referred to her by my local neurologist. She is not a surgeon but is in the neurology group there at MGH and is one of ten MG specialist. So that's the next step looking at a thymectomy.

Thanks for your inputs, it's good to know something so scary can turn out well. Overall I'm a real wimp when it comes to surgery....scares the heck out of me LOL

Thanks again

Joe

I was basically 38 when MG hit me hard and based on my research and condition of thymus (perfectly normal), the choice was easy for me to say "no".

My Neuro didn't recommend it either, but would support my decision either way. Results simply are not good for men in general.

In my opinion, only younger women and people (under 50) with clear enlargement of thymus and/or thymoma should be getting this procedure done in an attempt to get relief from MG symptoms.

It seems no matter what course we take for treatment, overall we get a 30 percent chance of remission without meds. The main thing is to get treatment though.

Thymectomy will help eliminate any doubt one might have about trying to do everything they possibly can to get rid of MG, but the pros and cons must be weighed.

For some reason, people feel like taking a thymus out of our bodies is no big deal. We only have one...it has a purpose and IS active all of our lives for cell regulation. Without a thymus, one would get sick easier and be exposed to viruses, including cancer and much moreso than others...no doubt about it!

"Cellular immunity protects the body by:

activating antigen-specific cytotoxic T-lymphocytes that are able to induce apoptosis in body cells displaying epitopes of foreign antigen on their surface, such as virus-infected cells, cells with intracellular bacteria, and cancer cells displaying tumor antigens;
activating macrophages and natural killer cells, enabling them to destroy pathogens; and
stimulating cells to secrete a variety of cytokines that influence the function of other cells involved in adaptive immune responses and innate immune responses.

Cell-mediated immunity is directed primarily at microbes that survive in phagocytes and microbes that infect non-phagocytic cells. It is most effective in removing virus-infected cells, but also participates in defending against fungi, protozoans, cancers, and intracellular bacteria. It also plays a major role in transplant rejection."

TJ

TJ that is great information that I was not aware of. I had read that under 50 that males tended to have more benefit than females, they responded better either at a younger age or after 55.

What I read suggested that by the age of 25 the thymus was essentially done its job and more or less in 'retirement' this is noted as it transforms from a well defined gland up near the neck to a poorly defined fatty tissue that has moved into the upper chest cavity.

I'm glad you mentioned this as some of the literature and research states that 30% have a higher probability of remission and 70% experience significant improvements within 3 or 4 years.

TJ can you point me to some articles that cover what you found out. This is important information as I work on making this decision, I would hate to make a mistake at this juncture.

Thanks for chiming in, that's great info to have

Joe

Hi Joe,

I had a thymectomy 4 years ago at MGH (Mass Gen.) There was no choice, as I had a thymoma. If you do decide to go forward, you should feel very confident with the care there. They are wonderful. My surgeon was Dr. Matheson. Recovery was easier than I had anticipated. It's a very personal decision for everyone. I did get several different opinions , did my homework, and was a peace when my surgery date rolled around.
Good luck