• dave-haw

    Member
    March 29, 2023 at 3:15 pm

    I had a VATS Thymectomy on 12/2019 at age 66. It was a laproscopic style surgery with a shorter recovery time than the chest opening variety. The biggest issues were my Soliris infusions and major concerns about my recovery after anesthesia. I was hospitalized for 3 days and home recovery for 2 months. No thymomas? we’re found and my surgeon said my thymus was very small. I didn’t have the foresight to ask what that could mean. I don’t think it was a total success since I still have symptoms and vision issues. My MG has not progressed and that’s a positive. My motivation was I felt it better to have immediate surgery while I felt well than to wait until my condition worsened.

    My surgery and recovery was uneventful gladly. I have two small scars. I’m glad I had it done to have tried to improve my condition. I’ve heard it can take up to 5 years for improvement so I have a little time to see if I get remission.

    I did luckily get my surgery just before covid19 reared it’s ugly head.

    I had a surgeon who was experienced in minimally Invasive Thymectomies. And who understood the challenges we face. My neurologist did research on surgeons, she spoke to the surgeon before recommending him to me.

    Hope this helps in your choice…

  • carol-mitchell

    Member
    March 29, 2023 at 5:49 pm

    I turned 50 years old 2 days after my thymectomy, and that was in 1989.  At that time, the doctors in Austin would not perform the surgery. I went to Houston to have the tymectomy, and the doctors there performed the open chest surgery.  I was in the hospital for 10 days, and when returning home, I went on IVIG for several years.  I am happy to say that most of the symptoms are gone. I have learned to manage the ones that have not gone away.  I am really glad I had the surgery, and I believe that is why I am good today.  I still have fatigue if I do too much or am under a lot of stress.  My biggest problem is traveling.  I get extremely fatigued, and it takes several days to a week to recuperate. Does anyone have the same problem when traveling?

  • barry-c

    Member
    March 29, 2023 at 6:04 pm

    I’m 53 yo male, will be having surgery this spring.  Scan showed nothing “abnormal” with thymus but neurologist feels strongly that removal at my age should be standard, regardless if “normal”; she said “you have something there and we’re getting it out!”.   18-20 months since first symptoms (immediately after Covid vaccine).  My symptoms are voice and swallowing, much better but still noticeable on standard meds and IVIG.  Occasional, and significant breathing issues.  Double vision went away on meds and hasn’t returned.

    I can share my experience as it happens if anyone interested.

  • barbara-a

    Member
    March 30, 2023 at 8:02 am

    A mediastinal mass was detected at age 65. I had no symptoms from it other than arrhythmias that came and went. I had a robotic thymectomy three years ago followed by radiation since it was invasive. I thought I was out of the woods  since I had no symptoms of MG. Five months after surgery I began experiencing double vision and ptosis, saw a neurologist who found I was ACR positive and it was downhill from there. I have full blown gMG and have been fighting it since then. Steroids, Mestinon, Imuran, IVIg, then Vyvgart and Rituxan. The proximal muscle atrophy is severe and the diplopia is constant. But I still live independently and push myself to stay active and involved.

  • scott-white

    Member
    March 30, 2023 at 10:22 am

    Current Age 57, Male – had Thymectomy at 53 May 2019, type of surgery VATS (Davinci robotic assisted) treatments before surgery was (Mestinon/Prednisone/IVIG) symptoms were weak extremities, difficulty chewing/swallowing/speaking and eyes – had surgery in the early evening, kept overnight for observation, left the following day with increased strength in limbs, speech, chewing etc.. continued IVIG treatments along with the usual meds, first week of my IVIG treatment, the pharmacy switched my IVIG to Panzyga from GammaGard, I was getting my IVIGs at home, within one-two days after treatment, I went into crisis, went into the ER and was admitted to ICU, I couldn’t speak or chew or swallow at that point and was having issues with breathing, was put on high dose steroids, via IV, within a day of that my condition worsened, my neuro order the floor doctor to stop, my doctor had ordered PLEX and not high dose steroids, but the floor doctor thought they knew better and almost killed me, for the next 10 days I did PLEX (Plasmapheresis) one treatment other other day for a total of 5, I was in the hospital for about 3 weeks, after the final PLEX treatment, I was released the following day as I had improved dramatically, I went on Cellcept August 2019 and for the next year  and 3 months I worked to getting off Prednisone, buy Jan 2021 I was in remission and the next 3 months got off Cellcept, and to this day I am in remission and I am extremely thankful, I believe the key was the thymectomy and PLEX.

  • douglas-manning

    Member
    March 31, 2023 at 1:33 pm

    I was 58 when diagnosed with Achr+ MG. I began with double and blurred vision, difficulty speaking for more than a few moments at a time, chewing fatigue, swallowing issues, that progressed to sided weakness, and fatigue. It progressed quite quickly from first symptoms to my first “crash” about 6 weeks later. I do not believe anyone (except the Opthalmology Resident – yep, that’s right) took the initial diagnosis too seriously and believed we had time to react. After the first crash, I was placed on high dose steroids, twice weekly PLEX, felt better and started on Cellcept. I crashed a second time 6 months later. During the second admission (and second round of being placed on vent), a CT scan indicated that I had an enlarged thymus gland. After discharge, an MRI with contrast indicated an enlarged thymus gland. It took a few more months of back and forth and ongoing gMG symptoms, but a laparoscopic thymectomy was planned. I find no fault with my surgeon in whom I had great trust, but the thymectomy was awful. My lung was nicked and ended up collapsing, and the thymus gland was huge and the procedure turned into an open chest procedure and although found not to have a thymoma, it had began to spread out and attach to lymph glands in my left armpit and parathyroid glands. In short, a long extensive surgery. I had to recover from the surgery and collapsed lung. I also went through a year of AFib before it finally went away.
    If it all sounds awful, it was! The good news we were able to begin tapering down on steroids, and PLEX treatments slowly went from twice weekly to once per week. We continued through trialing every ‘tool in the box’ with the most ironic moment being a paradoxical response to retuximab when I had two crashes.
    So, although it sounds like I might think otherwise, I would definitely recommend a thymectomy after age 50 if your case progresses to unstable gMG. For me just to be able to reduce the steroids was a win.
    The good news is Soliris came on the market and now I am stable with biweekly PLEX and Soliris infusion treatments, 12mg Prednisolone daily, and a mix of long acting and standard Mestinon to address basic symptoms.

  • douglas-f-young

    Member
    March 31, 2023 at 2:40 pm

    I’m not convinced that thymectomy should be quite such an automatic response to the onset of MG. This article emphasizes the safety of the procedure, but an important question is whether it is justified for the individual. I was diagnosed at 67 (10 years ago) and once of the first responses to the diagnosis was a scan of my thymus gland. My doctors said that because of my age my thymus was very atrophied, not likely to be tumorous given its size, and almost certainly no longer active. I’ve been on prednisone (now down to  5mg) mestinon, cellcept and IVIG/Soliris since my diagnosis, and I have almost no symptoms. Thymectomy is not such a minor surgery, and the risks and inconvenience should be carefully balanced against the likelihood of real benefit for each individual. It seems plausible that patients over 50 may be less benefitted by the surgery, safe or not.

  • gaylee-lacorte

    Member
    March 31, 2023 at 3:03 pm

    I had my thymona removed due to cancerous  in 2008 I only had the antibodies  never had any symptoms  but then in 2022 I slipped out of bed. And couldn’t yell for help . I didn’t understand wat was going on ended in hosp  had a mg crisis. Had 10 treatments of plasma aphersis  was good for 1 yr!  Had another plasma aphersis didn’t help now I’m having IVIG  feel somewhat better at least now I can dress myself -talk eat  now . But still have problems with voice I slur my words on and off

  • natalie-rudolph

    Member
    March 31, 2023 at 8:37 pm

    I was diagnosed with MG 5-8-18 and found out I had thymoma, had Vats procedure to remove it on 5-18-18, I was 57 years old. It was stage 1 AB , encapsulated tumor. I have yearly scans to make sure it hasn’t reoccurred. Thank goodness it hasn’t. My symptoms got worse after my surgery, although I recovered quickly (2 Days) after my surgery I was home.I’ve been on multiple treatments over the years. Started with oral meds, prednisone. Imuran, Cellcept, mestinon of course, IVIG, Solaris, Vyvgart and recently Ultomiris. My eyes have always been drooping, along with muscle weakness, shortness of breath, fatigue etc. they are all better and I did have an eyelid lift which made a huge difference. I still work as a nurse and do my best to keep going. Keep the faith everyone!

  • thomas-lee-clark

    Member
    April 1, 2023 at 9:57 am

    I am now 77 almost 78 and had my thymo operation years back, I struggle to remember age! However, I had a wonderful Neuro and she was insistent on only one surgeon to do it. He used the long hand method and went after every speck of the thymus, when I awoke, I was healed. Sight was good and my extreme weaknesses except for the surgery, which was open chest, (can still feel the wires in by breastbone) The guy was great and the prognosis was sometimes. I had gone gMG and the drugs I was taking were not effective. I worked and traveled for the job drove many miles using one eye and often choking. I owe my recovery to normalcy to good doctors and strong faith. After my first retirement I drove trucks for 3 years, was able to pass physicals for the CDL, corrected vision and a great life since the thymo. I now see a red light as red and not orange with right eye, so I wore a patch. Now I am going thru cataracts and retina problems in right eye but I am prepared.

    This is a great Forum.

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