Myasthenia Gravis News Forums Forums Healthcare and Treatments Seronegative & Thymectomy

  • Seronegative & Thymectomy

    Posted by Leigh on May 31, 2024 at 7:51 pm

    Has anyone had a thymectomy that is seronegative?

    What was your outcome?

    I was diagnosed about 9 1/2 yrs ago. Just now having a thymectomy but no thymoma.

    Leigh replied 1 week, 6 days ago 7 Members · 13 Replies
  • 13 Replies
  • Trish

    Member
    June 4, 2024 at 3:19 pm

    Hi Leigh: I am new to this website. I had a thymectomy in 2019 just after I was diagnosed. I am seronegative, and had all the tests again twice since my neurologist said that some people that are seronegative will test positive after 2-3 years. I am still testing seronegative. The thymectomy results confirmed thymus hyperplasia but no cancer. I got about a 2 year remission afterwards and felt so much better. That has slowly changed over the last three years – each year progressing more. Neurologist believes that the thymectomy did slow the progression over time as I am still pretty good in winter, and have what they consider moderate generalized symptoms then, except for my eyes. They are worried about my vision which is now really affected.

    • Ari Maayan

      Member
      June 5, 2024 at 5:53 pm

      I was diagnosed with MG about 8 years ago. My first indication was every indication that we who have this illness could possibly have……and I mean everything. I was taken to the VA hospital in Las Vegas where the medical staff stood around and did nothing but scratch their heads for 3 days. I’m serious. They did nothing. So I transferred myself to a civilian hospital. There at least they ran a panel of extensive diagnostics. They also ended up scratching their heads. Does this tell you something about the state of the art at that time in even diagnosing MG. Fast forward to 4 years ago when I had open heart surgery for valve replacement. The surgeon had done his homework and decided that since he was in the neighborhood, he would do a thymectomy. No thymoma and no other markers are anything else. But at least I got some new information. Still strong seropositive MG. But I’m still breathing.

    • Leigh

      Member
      June 20, 2024 at 11:50 am

      Thank you Trish. That is helpful information. I have had the thymectomy which was large. Waiting on pathology. From what I have read from actual patients it looks like remission time is between 2-5yrs but was so curious about what that looked like for seronegative. Thank you so much! Good luck to you!

  • glen

    Member
    June 5, 2024 at 10:32 am

    I think I am seronegative. The neurologist said I didn’t test positive for any of the antibodies they look for. Being seronegative, what made you and your doctor decide that the thymectomy was the next step? I am just curious as I consider what my next steps may be. This is all fairly new to me as I was only just diagnosed last November.

    • Trish

      Member
      June 5, 2024 at 10:46 am

      My neurologist said that it was more effective the sooner you had it, and the research I did supported that. Also the MRI showed my thymus was enlarged, supporting the diagnosis. They did a robotic surgical procedure so recovery time was quicker than the open chest type.

      • Trish

        Member
        June 5, 2024 at 12:12 pm

        I should mention one other thing – although I have been diagnosed with generalized myasthenia, my worst symptoms are what they call “bulbar”, meaning when things get bad for me, it is my eyes, swallowing, chewing, all facial muscles, plus chest that are most affected. My legs and arms are only mildly affected. My symptoms were bad before the surgery so from a timing perspective my neurologist thought I would get more immediate relief from surgery rather than the months it takes for the medicines to build up sufficiently.

    • Leigh

      Member
      June 20, 2024 at 11:56 am

      Hello Glen, I am not really sure why my neurologist decided now was the time. I have not been well controlled for several years and am on the last oral treatment available right now. My doctor is very conservative on treatment so I also think that’s why it has taken so long to do it. Hoping one day these new MG meds that are looking so promising will be approved for seronegative or at least approved by insurance for off label.

      My surgeon said that women tend to have a better or quicker response from thymectomy as well as if you were diagnosed at a younger age. I was diagnosed at age 33 and thymectomy at 43. I am very hopeful to get even a couple years of normalcy as I have had to give up my career and my life has been turned upside down as everyone else with this diagnosis.

  • Anne Aloi

    Member
    June 21, 2024 at 5:19 pm

    I’m sero neg diagnosed by sfemg. I had a thymectomy 2 months after I was diagnosed and it helped tremendously. Three years later I am on imuran and doing ok. My symptoms are mainly bulbar and I go between not swallowing well and not talking well. I was having symptoms for about 6 months before I was diagnosed as they were intermittent. They were getting worse by the day at the time I went in for the emg. I did not have a thymoma but my thymus weighed twice as much as it shld have. I was 61 when I had the surgery. I can get overall weakness and fatigue but mainly it’s dv, swallowing and speech that are affected. I refused hi dose steroids as I’m an athlete and have osteopenia. The thymectomy surgery went well for me and I really believed it slowed the progression

  • Leigh

    Member
    June 21, 2024 at 8:30 pm

    Hello Anne,

    Thank you so much for taking the time to reply. I am more generalized with arms & legs affected more than swallow. I am also on Imuran. Your story is helpful & hopeful. I don’t know the weight but mine but it was larger. I was curious if those that were seronegative had as good as a response. It looks to be so, so maybe they will continue to find new antibodies because there are obviously more. Thank you for sharing your experience.

  • Thomas

    Member
    June 26, 2024 at 7:12 pm

    I had mine out 6 years ago and do not really think it made much of a difference. I still have generalized MG. My thymus was taken out with laparoscopy. The neurologist wanted my chest cracked open and taken out that way as he thought it was easier to get it ALL out. I live next to a doctor who did not like the idea. He put me in touch with another doctor that is part of the local heart transplant team. It was removed with the robots ( 3 small holes) and I was home in 3 days. Not much pain after the hospital stay but suspect the the other method might be a different story.

    • Leigh

      Member
      June 30, 2024 at 1:24 pm

      Hello Thomas,

      Thank you for your reply. So glad you were able to find a competent surgeon. I also used a cardio thoracic surgeon. It seems that although you didn’t get the outcome you would have liked, that the procedure overall was a positive one. Glad you had minimal pain and recovery. I am a month out and still feel very fragile with pain. I am typically a “slow healer” so I am trying to be patient! Good luck in your journey!

  • Amy Cessina

    Member
    June 30, 2024 at 12:50 pm

    I had an appointment for surgery and bailed on it the day before and couldn’t be happier I did. I do not think the research supports the removal but only lets you take less medicine. It’s a personal choice but I chose not to.

    • Leigh

      Member
      June 30, 2024 at 1:20 pm

      Hello Amy,

      Thank you for your reply. I completely respect your decision. I also don’t believe it is necessary for everyone and should not be an automatic part of treatment. My thought process was I am only 43yrs old and have been at this for almost 10yrs with little relief. I was willing to take a risk. I was confident in a well skilled surgeon in a large medical center, however I was not prepared for the recovery. I had a flare/mild crisis in the hospital which I knew was a possibility. I am a month out and still have not bounced back. I know time will heal all but I have had a lot of pain/nerve pain that I was not expecting, that others hadn’t seemed to have. Each person knows what’s right for their body. Thank you for your input. I hope you continue to do well.

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