My father had the thymectomy, and it didnt help him. He didnt go into remission, he still takes his medication.

I had a thymectomy on 2/21/07. Immediately after surgery my symptoms flared up. I also realized that the hospital was not administering my MG medications properly and not giving me the full dose, which didn't help. I would recommend going over that with your doctor prior to surgery. After about a month my symptoms slowly disppeared. I was doing very well until July 30th. I had to have gallbladder surgery and the anesthia caused me to relapse. I am not choking on liquids or having difficulty breathing like I did prior, but the weakness in my arm and legs are back, exhaustion, right eye drooping, & arthritis are now back. I am back on my meds. and am having a really hard time adjusting to the symptoms again. My neurologist told me that he is hopeful that I will go back into remission. I feel that it is a chance at a new life without symptoms and nothing else gives us that option so it's worth a try. If you have any other questions about the surgery please feel free to ask. Just be prepared for a long recovery and make sure you have a loved one around to care for you! You are in my prayers.

Thymectomy has worked wonders for me, as soon as I had the surgery I began to see immediate results, however it took about a year for me the reach the maximum benefits from it. I believe that if you are young and a women and caught it early in your disease your chances for success are much higher. I have a big scar the I proudly wear on my chest from it. I still take daily doses of prednisone and on good days I have great strength and energy, however its not absolutely perfect but I am about 85% better than I was prior having it, on a good day.

I loved this book! It helped me understand alot!

I developed MG in late 1981 & was diagnosed in Mar '82. Getting MG saved my life. CAT scan Jun '82 showed thymus to be hyperplastic (enlarged). But when surgery was done in Sep '82, malignant thymoma was found. Had spread through upper chest & attached to nerves, blood vessels & aorta. Had entered the pleural sac of left lung. Surgical team cut & scraped off what they could & I then had 3 months of radiation. No problems re. thymus or tissues since. Have mostly been in remission ever since, first using prednisone & then prednisone & imuran last six years. Malignant thymomas are often deadly because symptoms usually don't occur until it's too late to do anything for the patient.

The only thing the Thymectomy did for me was get rid of a large tumor. I had my surgery almost 1 1/2 years ago and I still have alot of pain (they did a sub-mammary incision). My OB-GYN told me I probably won't get any better than I am right now (it hurts to wear a bra). I have resorted to loose bra tops.

Hi,

I was diagnosed in '93. Had my thymectomy then as well. I have not gone into remission but have soooo many less sympoms. I started feeling better almost immediatly after surgery. I opted for thoracic surgery so that they got all of it out. It was painful but I've also had a c-section since and it hurt too. To me it was comparable pain. Since my surgery,14 years ago this month, I have only had to take Mestinon to control the symptoms. NO MORE PREDNISONE!!!! I could barely walk into the hospital and I could run out of it, 4 days later. I feel that this surgery did help me and am now very glad I decided to do it.

I had my Thymectomy in June 2007, I have noticed no improvement or lessening of my symptoms.
It nearly cost me my life! Due to the high doses of Prednisone, my body stopped producing it's own and was unable to handle the trauma of surgery. Everything started to shut down, it was a very close call.
I would not say that my case was normal, I do have other problems, but it might be something to discuss before surgery.

I had a thymectomy within 4 months of dx, back in 1988. I went to Duke Univ. for the surgery. I opted for the bra-line cut..under the breasts, straight across, sturnum cracked open and removal that way. I was told at that time, if they didn't get the whole gland it could grow back, I wasn't having that! You can barley see the scar, except in the center...but the Drs. did a great job. I also had draining tubes, however I didn't get off the breathing tube first time around. But, it has been almost exactly 20 yrs ago. For the most part, actually while I was on SS Disability, I was able to learn to live with the limitations.
A few years ago SSD decided I wasn't sick anymore and disenrolled me from disability. They just don't get it. Over the past 3-4- yrs I have had 6or 7 jobs. I would last for about 6months and in1 day not be able to go one more day. This last job was a record..6 weeks and it was a sitting job. I guess my arms,head,neck,eyes didn't like that. That was 5 weeks ago and I'm still a "ragdoll'. I ended up in the hospital after 2 weeks of being trapped in bed. Not sure what is going on. I do have an appt at Mayo clinic, july 28. So another job down, I'm running out of opportunities. Ihave re-applied for disability and fight with vengance to get it back. Make sure you have your doctors written back up and any research yu can find so"the paowers at be" can have a little knowledge of what we are Trying to deal with. Also, here is a tip...THERE ARE NO GOOD DAYS WITH MG. If you say well I went to the beach yesterday...they will say..if you can go to the beach you can perform job duties of some sort. Sure I can wake up one day ready for the world and in 10min be back in bed, just from thinking about it! The mind wants to...but the body says NO!
I do not take any meds. I'll know more after the Mayo visit. We think I may have fibermyalgia now..we'll see.
Thanks for letting me vent. After 20yrs with MG, Ive been dealing on my own...it's nice to be able to share with others who really do "get-it". Thank you, Robin

Just want people to know that there are options to avoid the chest incision. When we arranged to have our 14 yr old daughter's thymus gland removed in April, 08, we searched and found Dr. Diana Farmer at UCSF. She has done this surgery about 15 times using scopes through the side of the chest (and never had to "convert" to open chest). My daughter recovered quickly and has had some improvement since surgery (but was very weak and fatigued prior). Dr. Farmer is the chief pediatric surgeon, but should be able to advise adults also. My daughter's scarring is virtually unnoticeable.

I had a tyhymectomy 20 years ago in my early 20's. I went into remission immediately, i'm 46 yrs old now and i'm still in remission. I haven't had to take any drugs since. I used to take predisone. I feel it helped me alot. I was very pleased with my surgery.

I had my thymectomy in May'85. It has not worked. I had a bra-line incision which has not been a problem. I was intubated for less than 24 hours and it was quite uncomfortable for me because I have a strong gag reflex. Other people I've spoken to did not have this problem. I have had NO problems because of the surgery.

Patients do, do better after the surgery. You go in with a positive attitude and I am sure you will do well.

You have to go in with a positive attitude. You also need someone like a surrogate, or defender, to stand up for you, while you are hospitalized to make sure your needs are met.

I was hospitalized for 10 days, but I know people who were hospitalized longer. Alot of that may depends on your condition at the time of the surgery.

Speak to your doctor and surgeon on what to expect. I think I was in the operating room for about 3 hours, but my thymus was quite large. Your stay in the ICU maybe dependent on how long it takes to get the breathing tube out. If you require more pain medication, don't hesitate to ask. You won't become addicted. I had real severe back pain from the tubes they put in my chest to remove fluids and reinflate my lungs, again in my case. I found that heating pads, a back rub(by my husband)combined with the pain meds helped.

Once I got home I found that I still required narcotics , but that passed. I needed much rest to feel better. Hey. you have MG!

The only problem I've had with the surgery is sometimes when I'm short of breath or the weather gets damp, my sternum hurts. Simple aleve takes that away. It may not happen to someone else because I have a problem that is similar to lupus.

I hope I have helped people out and remember try your best to have a good attitude and I realize that sometimes that's very hard, but try.

My Thymectomy has just been scheduled for next Thursday, Oct 2nd, and I have to say I'm a little freaked out about it. Anyone have any words of wisdom or advice for me??

I had a surgery to remove half thyroid and entire thymus two years ago. Can't say it was the most pleasant experience as I was in ICU for three days and a total of five days in hospital. The worst bit for me was not being able to sleep (I'm a very light sleeper), the coughing to clear your lungs (yuck!) and a sore shoulder due to temporary nerve damage. I found the shoulder pain to be excessive and the chest pain I hardly noticed.

My advice is to get someone to slap/rub your back, where your lungs are, this helps to clear your lungs of congestion. Also, if you need pain medication after hospital, then you take it!

Overall, it was not a hideous experience - if it means that I feel better afterwards - then bring it on. You will be fine - sore and very weak (you'll have to have someone to care for you after hospital) but it will improve. Don't be too freaked out - how can it be a terrible experience for you when everyone at DS is thinking and praying for you. Best wishes to you.