Myasthenia Gravis News Forums Forums Healthcare and Treatments Thymectomy With or Without Thymoma

  • Thymectomy With or Without Thymoma

    Posted by Jodi Enders on February 24, 2022 at 5:02 pm

    I will keep their identity anonymous, but we had an excellent question brought up by a wonderful community member. I am curious to know everyone’s personal experience with thymectomy.

    They asked: “I’m wondering what percentage of people have the thymectomy with or without thymoma. And how do you feel after a week of recovery and how much do you worry about being immune suppressed?”

    Did you receive a thymectomy? Did you have a thymoma present or residual matter?

    Renna replied 9 months, 1 week ago 15 Members · 19 Replies
  • 19 Replies
  • Thomas Lee Clark

    Member
    February 26, 2022 at 1:48 am

    I had a completely healthy Thymus before and after thymectomy. Lab tested. From the operation I have had no symptoms. After covid (no Vax) I had recently about 10 minutes of diplopia went back to bed woke up vision OK. Doctor was neither surprised nor alarmed. I was both when it happened and pleased when it cleared. The only symptom after my operation. I did receive IV of antibodies after positive test and before double vison episode.

  • R. Wilson

    Member
    March 10, 2022 at 8:37 pm

    I was diagnosed with MG about 4 years ago, with my main symptoms being swallowing and speech difficulties, and double vision. After about a year, my neurologist recommended that I have a thymectomy. It turns out my thymus was cancerous, so I’m glad I had the operation. After a few months, my double vision went away completely. Still have the swallowing problem, plus fatigue, but the thymectomy was a good decision. I’m a 66-year-old male, and am still able to function more or less normally (with the help of Mestinon), and work a 40-hour week.

    • paul spychalski

      Member
      June 23, 2023 at 7:13 pm

      Thanks for that info. Hope you stay well. Was your MG in the earily stage??

  • FrancisW

    Member
    March 12, 2022 at 12:53 am

    I was diagnosed with MG about 9 months ago.  Have late on-set non-thymomatous MG.  Age 62.  Male.  Initial recommendation was get evaluated for surgery.  My thymus showed no signs of cancer.  But I qualified as good candidate for surgery which was recommended.

    Read an research article in Orphanet Journal of Rare Diseases.  Research study published in early 2021 on Effects of thymectomy on late-onset non-thymomatus MG.  You should read the study.  Yale Hospital Drs. were not aware of study.  But conclusion “Thymectomy in late-onset NTMG also yielded no benefit to CSR or PR compared with conservative treatments”

    I didn’t have the surgery.

    Before treatment I could not hold my head up at times,  my right eye half shut,  speech and eating was a real  problem.

    Now, I take Imuran, Mestinon, Ginger Root, Vitamin D, and Curcumin now.  I live a very normal day.

     

  • RINA NEL

    Member
    March 12, 2022 at 7:11 am

    It took a year before my Neuroligist did a catscan of my chest area. Within an hour I was booked into the Heart Hospital and Thymus removed the next morning. Thymus wasn’t cacerous but had formed a huge growth which reached my heartsack. Lost a fair piece of sack in the prosess but within a month my eyesight were normal.
    It took six years for double vision and fatique to return and only because I was given the wrong medication,oxibuton, and now only take Mestinon and Azanum. Eyesight and fatique better now. I live an easier life now. When I am tired I rest for a while and I negate the heat with the swimmingpool.

  • Lori-June Howard

    Member
    March 13, 2022 at 7:50 pm

    I had a thymectomy with thymoma in November 2019. Recovered from surgery fine had radiation, but unfortunately no relief for mg symptoms.

  • RINA NEL

    Member
    March 14, 2022 at 7:16 am

    I am so sorry to hear that your symptoms stayed. I really had such relief after my Thymectomi. It was good to have 6 years remission after all that. For me it was worthwhile.
    Even though MGO is back and with it fatique and stress,the Mestinon and Azanum keep me relatively symptom free.

  • Michele Saulnier

    Member
    March 16, 2022 at 9:56 pm

    I was diagnosed with MG 22 years ago and had a thymectomy right away. I did not have a Thymoma. My main symptoms were upper body and facial weakness and trouble swallowing and speaking. I’d say it took over a year to see an improvement after the thymectomy. However, I was able to go off all medication and was in remission for nearly 20 years. Unfortunately my MG came back in 2019 with nearly all new symptoms (double vision, fatigue, neck weakness and trouble swallowing).  I am grateful that I was symptom-free for so long!

  • Renna

    Member
    July 29, 2023 at 11:17 pm

    Has anyone who tried Vyvgart and had a normal thymus gland had a surgery to remove it?  If so, did it help? Also, what was the approximate age group and gender and how far along was your MG when you had a thymectomy to remove the normal thymus gland.

    Trying to determine if I should remove my normal thymus gland so I can get relief of gMG.  I’m on Vyvgart now.  Already did 3 cycles and the timing between each cycle seems to be getting less and less for relief of symptoms.  Having major issues with muscle weakness and difficulty with walking, swallowing and breathing.

    • Michelle

      Member
      August 4, 2023 at 3:38 pm

      You do know that CT scans do not always see it? I am 58 now and was 55 when this started, and just now getting diagnosed, but am definitely getting my thymus removed if I am offered the opportunity. I ideally want remission with or without medication, I cannot sit around like this the rest of my life.

      • Renna

        Member
        August 5, 2023 at 10:26 pm

        That’s my concern about the thymectomy. It is not an easy surgery and not for certain that the MG symptoms will go away. I have had 2 CTs done in the past year and told I still have the thymus gland so it will take a very skilled cardio thoracic surgeon to remove it and all the tissue around it (close to heart and lungs) to try and get remission from MG. I also don’t want to be like this for the rest of my life having to take many meds and infusions every month. Debilitating fatigue and lack of mobility are not a good quality of life. Praying for full recovery and staying optimistic.

  • Lori-June Howard

    Member
    August 4, 2023 at 4:02 pm

    I was dx’d with mg in May 2019 and I was 50 years old. In August I had a CT scan of chest and it was determined I had a thymoma stage 2. I had the thymectomy in Nov 2019. Because my thymoma was soo enlarged it was a rough surgery and recovery including radiation. It had absolutely NO positive impact on my mg. I take mestinon, prednisone, vyvgart and rituxan. My mg journey has been rough. I hope yours is better!!

  • Anne Aloi

    Member
    August 9, 2023 at 4:08 pm

    Diagnosed ~ 4 years ago, ptosis, dv, and trouble Swallowing. Plus strange intermittent weakness/fatigue. My neuro thought thymectomy was “radical”. Prescribed Mestinon and when it didn’t work, “take more”. When I said I wanted to treat the dz , not just manage the symptoms, I started Imuran. I seemed to be getting worse by the week, waking up w DV that lasted for two days. Changed Drs, had a VATS thymectomy(thanks DaVinci) my symptoms started to fade after about 6 months. I’m now living a pretty close to nl life on Imuran. I believe the thymectomy changed the trajectory of my disease, I’m 64 and have no regrets. I was hospitalized for less than 48 hrs.

    • paul spychalski

      Member
      August 11, 2023 at 10:43 am

      Thanks for your input!

  • Mary Zapata

    Member
    August 11, 2023 at 10:18 am

    I was diagnosed with MG in 2001, from a positive tensinon feom droopy eyelids & double vision in both eyes, exhausted all the time and swallowing issues. Started mestinon & prednisone and got it under control. Once controled went years with only mild symptoms and taking mestinon as needed. In 2012 swallowing issues became worse which prompted a thymectomy. I did have did have a Thymoma but non-cancerous.

    Now take mestinon as needed.

     

     

  • LIZ

    Member
    August 11, 2023 at 2:56 pm

    I am 47 y/o female. I was diagnosed with MG last year following discovery of thymoma. Now that I understand disease I can say that I was symptomatic for close to 10yrs prior to diagnosis…double vision, challenge holding up head, weak muscles, exhaustion, swallowing/choking issues. I had no idea, I thought it was what it felt like to be a working mom. I was put on mestonin 3 weeks prior to surgery. I had 2 IVig treatments just prior to surgery. I required sternotomy to remove thymus and thymoma. Recovery was tough for first 3 months. Now, 9 months later, I feel like I was given a second chance at life. Still on mestonin and still have to rest if I over do it in a day but I am so much improved that my own kids don’t recognize me. No choking or falling asleep at the wheel. I was able to hold up my own head when getting it washed at salon. I can keep up with a full day of activities. I have been less likely to get sick since surgery. I used to catch everything, haven’t had a cold in 11 months. In short, I would do the surgery again in a heartbeat. Symptoms may return one day but for now I’m so thankful to all those who dedicate themselves to advancing treatments for this condition that unites us. Best wishes for your lifelong well-being.

  • Bernard

    Member
    August 11, 2023 at 4:08 pm

    Today my wife is 75 years young. She has had myasthenia since Nov.11, 1972 immediately upon giving birth to our first child. She could not hold the baby and could hardly breathe. Two days later a wonderful neurologist diagnosed the myasthenia. Two years of difficult living, she had a thymectomy. No tumor. She had been on Mestonin. Today her myasthenia still bothers her. Weak muscles mostly. My wife has battled with lots of illness not relating to the myasthenia. She is ok.

  • James Starkey

    Member
    August 11, 2023 at 5:14 pm

    The efficacy of a thymectomy seems to vary by age of disease onset. Early-onset MG occurs before age 50, late-onset after 50. Here’s the most recent study I’ve seen on this issue. It appears that the procedure is not as reliably effective for late-onset folks:

    https://www.researchgate.net/publication/351757556_Effects_of_thymectomy_on_late-onset_non-thymomatous_myasthenia_gravis_systematic_review_and_meta-analysis

    • Renna

      Member
      September 6, 2023 at 9:05 pm

      Thank you James for the link to the study. This is interesting and I was diagnosed 3 years ago at 47 and I will be 50 this year, so I feel like I am racing against time!

Log in to reply.