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  • Posted by Tracy O’Connor-McGraw on August 19, 2022 at 11:05 am

    After many IVIG infusions , mestinon , high dose of Predisone , Vyvgart infusions , and other meds ,we are now going to try the Ultromiris infusion which requires the meningococcal vaccine . Then once hopefully he’s in good shape , pulled out of the low he is in , we are contemplating a thymectomy . Who has had this and what were the results ? Thanks .

    Renna replied 8 months, 1 week ago 19 Members · 25 Replies
  • 25 Replies
  • Renna

    Member
    December 29, 2022 at 2:03 am

    Hi Tracy,

    Did you ever get any comments back to this question? Doesn’t look like anyone answered.  I’m curious as well since the neurologist recommended I get a thymectomy.  My CT scan came back normal, but I was told it could help achieve MG remission or even cure it (33% chance).  I was only diagnosed a year ago so I want to get the facts and stats before doing anything surgical.  Hope to hear more about this!

    • Angel

      Member
      September 5, 2023 at 1:38 pm

      Hello Renna… how are you? Just wondering.. did you ever have a thymectomy? I had my a couple weeks ago and I have a good expectation… I would like to share experiences with anyone out there… thanks so much! Angel

  • Tina

    Member
    January 2, 2023 at 3:33 pm

    I was diagnosed at 15 and had thymectomy due to extremely large thymus  I had many post op complications Dr resorted to prostigmin every 3 hours and 100 mg of prednisone a day the prognosis was grim but I amazed them all by 21 I was a respiratory therapist I am 62 and only take 5 mg a prednisone a day. I was diagnosed in 1976 options were few if you would like to talk further please feel free to message me personally

  • Joe

    Member
    August 11, 2023 at 11:31 am

    Hi Tracy, going for CT on the 15th this month.dont know what to expect.dr is still trying different meds but none working yet.did you have problems after the removal of the thymus gland?

  • Karen Lynagh

    Member
    August 11, 2023 at 2:23 pm

    I speak for my husband. He presented with vision issues as his onset at age 64. Being under VA benefits, it took some months to get proper diagnosis and begin treatment. After his CT scan, it was found that he had a tumor on his thymus. At the time of the surgery eight days later, the tumor was not ‘on’ his thymus, it had encapsulated it and grown ‘tentacles’ that had reached his pericardium, begun to wrap around his left phrenic nerve, and spread throughout his upper chest cavity. A surgery that was to take about 2 hrs took nearly 5 1/2, so I knew something was very wrong. The tumor was benign, though aggressive. He did much better initially after the surgery. He is NOT typical mg. Unfortunately, even though his thymus was removed, his body seemed to be able to produce the troublesome antibodies from somewhere else in his body. As I said, NOT typical. Thus, it may help, but I don’t know the long-term effectiveness of the surgery? In any case, the surgery prolonged my husband’s life, and for him, it was truly life-saving. I don’t know if this helps, but you may want to see if you can find a study that discusses the long-term solution as opposed to possible short-term?

  • Joe

    Member
    August 11, 2023 at 2:49 pm

    Thank you so much.it helps a lot.

  • Jane DeLisle

    Member
    August 11, 2023 at 2:58 pm

    My daughter had a thymectomy in 2019 at 21. She suffered with undiagnosed autoimmune symptoms for 5 years prior. At that time, she wasn’t even able to get a prednisone prescription because she couldn’t get any kind of diagnosis. Then when she managed to get a short course of prednisone and many of her symptoms eased, she was able to find a rheumatologist who, still unable to diagnose her, was willing to acknowledge some sort of autoimmune disease and was willing to put her onto a DMARD immunosuppressant called Methotrexate (one that has been around a long time), and her symptoms continued to ease and she was able to lower her prednisone dosage. Then at one rheumy visit, she complained her face felt numb and the doctor ran an MG antibody screen which came out positive. 2 months after her first appointment with the neuro, she had a thymectomy. I was suffering whiplash, after going 5 years trying to get help with her, they went straight from diagnosis to thymectomy, not even trying IVIg or biologics. CT imaging was normal but the surgeon said it was very abnormal but was hiding from the CT.

    For several months, about at the end of each month, she notices a significant improvement in symptoms, particularly the non-MG symptoms. Her food sensitivities went away. Her joint pain went away. 2 years later her neuro said she was stronger than she ever observed in those 2 years. She still needs to take mestinon, needs a bipap, was able to get completely off prednisone, and while she’s off all immunosuppressants, I feel she needs to get back on something because her immune system is still not completely calmed down.

    Being her Momma Bear mom and patient advocate, I dived into researching the thymus gland. It isn’t just there to cause MG, it is the master programmer of the adaptive immune system and I feel it plays a far greater role in autoimmune diseases, not just MG, than scientists currently understand. It is part of the lymphatic system which includes other immune organs such as the spleen, tonsils, lymph nodes and lymph glands. It’s job is to program the immune cells that then go onto creating antibodies, and I believe this programming gets messed up and the immune cells then start to target the body’s own cells. In theory, at puberty the thymus gland is supposed to go “off-line” and the adaptive immune system takes over and the programming of these immune cells start getting done elsewhere (I don’t know where, maybe the spleen). Programmed B cells live about 3 months then age out, antibodies exist for 6 weeks, so if this programming can get interrupted (like with a DMARD), there will be fewer cells to continue to make the auto-antibodies and cause symptoms. But the immune system has a memory, specifically memory B cells which can remember their programming for upward of 10 years, which can throw a wrench in the works. This is why MG treatment is so variable between patients. Her surgeon, however, emphasized how important it is for a surgeon to make sure they get every speck of thymus out, even the atrophied fatty parts. I personally believe as long as there are symptoms, it’s important to take at least a DMARD to suppress the immune system and the production of those auto-antibodies. Mestinon is not an immunosuppressant, it’s just a band-aid to boost communication between the nerve and muscle and it doesn’t do anything to combat the auto-antibodies that attack the NMJ’s or the immune cells that produce them. I swear fighting MG is tactical warfare.

  • Vincent O'Rourke

    Member
    August 11, 2023 at 2:59 pm

    I was diagnosed in JAN 2019 and had a Thymectomy by April of that year. In 2017 NIH completed a study on efficacy of Thymectomy for patients without tumors, which my neuro thankfully read. I had an unusually short onset to thymectomy time (6mo). I achieved remission (with some lingering nuisance level intermittent symptoms) by JAN 22. A follow on NIH study indicated that early diagnosis and treatment with a thymectomy was a key indicator of a positive outcome. I am off mestinon and prednisone since NOV21 and still on declining levels on cellcept. There is a risk of an MG crisis which I suffered 6 weeks after the surgery, but have been in a constant state of improvement since then after receiving Plasma pheresis as a rescue intervention.

  • Anne Aloi

    Member
    August 11, 2023 at 4:11 pm

    I had a VATS thymectomy 6 months after diagnosis. I had ptosis, dv, trouble swallowing and weakness. I was getting worse by the week. I’m 64, I was hospitalized for less than 48 hours. I believe it changed the trajectory of my disease. I currently live a fairly nl life on Imuran. I was afraid of the surgery but would do it again in a heartbeat! Good luck!

  • Joe

    Member
    August 11, 2023 at 5:03 pm

    Thank you,I feel a little better about it now.🤞

  • James Guthrie

    Member
    August 11, 2023 at 5:05 pm

    I had a Thymectomy in October of 2022. Went on a Friday morning had the surgery, had to stay over night and I was back home by 4:30 Saturday. I live in Louisiana and had other surgery in Katy TX. I wish I had done sooner.

    • Joe

      Member
      August 11, 2023 at 5:18 pm

      Thank you James,I’m not looking forward to surgery.but if it gives me some relief I’ll get it.right now I have ocular mg.driving me crazy but I know there’s people out there that have it worse than me.so I shouldn’t complain.

  • Robert Perrou

    Member
    August 11, 2023 at 9:04 pm

    I cannot say that the thymectomy helped me. After 2 weeks in the hospital, my then neurologist had assured me that my remaining symptoms (an inability to chew or swallow solids or liquids) would go away after the surgery. Within a week of the surgery, I still could not chew or swallow, all my other symptoms came back. A new neurologist gave me another course of IVIG. increased my dosage of prednisone and added imuran. My symptoms are under control now. I hope you have better luck than I did,

  • Leora Diana

    Member
    August 12, 2023 at 9:45 pm

    Hello. I was diagnosed with Ocular MG the summer of 2010. I had the Drooping Eye Lid with Double Vision. My ophthalmologist immediately sent me to a neurologist who after testing discovered a tumor on my thymus. It was recommended that I have it removed soon due to my age of 55. I believe I was told that the surgery wouldn’t be offered if I waited too long. I woke up from surgery and immediately felt better. No vision problems and the tumor was benign. I had a great recovery and no symptoms until 2018. I was hit hard with slurred speech, swallowing problems, paralyzed tongue and lost 28 pounds in 1 month. Received IVIG infusions for several months and was on prednisone for about 6 months. Now, due to fatigue and overall muscle weakness, I take a low dose of Mestinon once a day along with Cellcept morning and night. I am grateful that I had a tumor since it forced the decision to have the surgery. I don’t know if I’d of had it done otherwise. Overall it was a good decision.

  • Susagoode

    Member
    August 14, 2023 at 2:43 pm

    Hello,

    I am speaking to my 35 year old daughters experience. She was diagnosed immediately when symptoms started by her family doctor. Symptoms started with slight vision changes and in her smile. She was in mid first year of law school. I’ll try not to give too much information here and stay to your thymectomy question. My daughter was unable to take any of the medication offered for MG and had to do monthly infusions to keep under control. Diagnosed end of 2016 and had a robotic thymectomy, Dec 2017. The first robotic thymectomy in Idaho. Her symptoms continued until early 2022 and since then she has been in remission. It’s amazing. We had really given up hope but were told it could take 5 years to have results. And 5 it took.

    Good luck to you.

    • Joe

      Member
      August 14, 2023 at 5:12 pm

      Thank you so much for your response.i will find out tomorrow how the CT turns out.i just hope what ever happens they can get it under control.seems to get worse every week.

  • suzanne-x

    Member
    August 20, 2023 at 3:44 pm

    I was diagnosed with MG at age 23 (drooping eye lids, blurred vision, weakness in hands & arms but advancing quickly) in 2010. I used Mestinon and tried Prednisone, the latter only aggravated symptoms and caused significant weight gain which made life with weakness even more difficult. I had my thymectomy (no thymoma) in early 2012 and wish I’d done it sooner. It helped with the more significant symptoms and I believe completely altered the trajectory of MG for me. While scientists are now understanding that the thymus does play a significant role in the immune system past adolescence (originally thought to just be adipose tissue), I would still undergo a thymectomy as it’s saved me from difficulty chewing, swallowing, and breathing / MG crisis.

    https://news.harvard.edu/gazette/story/2023/08/turns-out-lowly-thymus-may-be-saving-your-life/

     

    Good luck!

  • Keith Wilson

    Member
    August 23, 2023 at 2:44 pm

    Life changing procedure. Double vision resolved upon waking up from the operation.

    Reduction in Pyridostigmine and weaning off of steroids. I did receive a series of 4 Vyvgart infusions and wow!

    I can do things that I haven’t done in 2 years!!

    Hope this helps and good luck

  • Jim

    Member
    September 6, 2023 at 3:31 pm

    I was in my late 60’s and had thymus removed via video assisted at Mayo in Rochester. There was chyle leak (small nick) that was cured via 24 hours of no food. Other than that I did not have any issues with recovery. Very sooth and darn near pain free, just a few small holes in the chest. As for MG it was the best thing I could done. Released then over night in the motel then we started for home in central Texas. Riding home was no problem for me. I can highly recommend removal.

  • Scott White

    Member
    September 6, 2023 at 5:52 pm

    I was diagnosed in Sept 2016 @ 50yrs old, my MG then was only OMG (Ocular Myasthenia Gravis) My Neuro Opthamologist was who diagnosed me, and also told me that MG typical generalizes in 2yrs or less, was on Mestinon & Prednisone and once a month IVIG treatments, he was right @ about 1yr and 6 months it generalized, continued the treatments, but they were already starting to not provide any relief after it generalized, Prednisone was increased as was my mestinon, but IVIG dose stayed the same and it was starting to no longer work for me, Jan 2019 I asked my Neuro if I can get the thymectomy done, did the CT in March nothing showed on the CT scan, got scheduled for the VATS thymectomy with the Davinci Robot (May 2019) only a overnight stay, my thymus had grown up into my neck and started to grow around my heart – I was out the next day, doc already had me setup for a 2000mg Cellcept script to start on and still wanted me to continue the IVIG every month which I did, after the surgery I saw an immediate strength increase in my arms/legs and overall stamina, was still on Prednisone @ 60mg a day and 320mg a day on Mestinon and now on Cellcept @ 2000mg a day, he wanted to get me off the Prednisone. while I was still doing the IVIG as well, I was doing this at home now, long story short they changed my IVIG from Gammagard to Panzyga for my 1st week July treatment, that was the beginning of hell, spine was being torn out by the predator, the pain was on a whole next level, that night my wife had to take me to the ER, as I lost the ability to speak, I got admitted and ended up in ICU for about a week, then they transferred me to the neurology floor where they started giving me high dose steroids via IV where I wasn’t getting any better, by the 2nd day there I went into paralysis and stopped breathing, but before that could happen, my mother was visiting me and before I could no longer speak I asked her to put me into an upright position, which then allowed me to breathe again and then she rung the nurse, after that moment I called my neuro and told him what was going on and he told me they were not supposed to give me high dose steroids, but were supposed to start me on PLEX (Plasmapheresis) he came to the hospital and chewed out that floor neurologist, they took me off the steroids and put this IV in my left neck artery for the PLEX and for the next 10 days I had a treatment every other day, by the time I left the hospital, I was about 85% better – I had already started working on getting off prednisone, this took about a year, by Dec 2020 I was off all meds and no IVIGs since the incident, Jan 2021 I was in complete medical remission. If I was to do it again, I would get the thymectomy 1st and then follow up with the 5 treatments over 10 days right after, I really believe it was the combination of both that helped me be where I am today, not to mention the 50+ pounds I lost once I was off prednisone. 😁 🙏 ❤

    • Renna

      Member
      September 6, 2023 at 9:14 pm

      Wow Scott, you have been through a tough journey with MG. It is good to hear you are better now and the thymectomy helped you recover from bothersome MG despite all the post op troubles at the hospital. Also good to know you were about 53 when you got the thymectomy and even then, the surgery was a success. Good luck to you!

      • Scott White

        Member
        September 9, 2023 at 8:56 am

        Thank you, Renna – I do know the sooner you get it done the better the outcome, I didn’t know that when I was diagnosed though, I didn’t find out till later when I started doing research into MG – There is research out there now that even if you are older 60+ etc, you still could benefit from a thymectomy, but of course as with anything, there is a small chance it could actually make your MG worse, I decided to way what was better, quantity VS quality for my life and my wife and I discussed it at length and decided it was worth doing it 🙏❤ I do suggest you do your own research as well, but as you are newly diagnosed, I would consider the thymectomy sooner rather than later, I hope you also find remission 🙏 On a side note, I am more then will to share data I have collected on thymectomies ❤

      • Renna

        Member
        September 10, 2023 at 10:31 pm

        Hi Scott, thank you for sharing. I hope to get more details on doing a thymectomy and also would like to asses the risk of removing it in terms of long term immunity as T-cells also help the immune system. Please do share the research on thymectomies that you mentioned. I would like to learn more and weigh all my options either way!

  • June Robertson

    Member
    September 7, 2023 at 12:39 am

    I was diagnosed in 1962 at 17 years of age, was very ill, taking 20+ 60 mg Mestinon tablets a day, plus other tablets called Mytelase(don’t think they are about any more) and Probanthine for the inevitable pain from overdose. I had a thymectomy(no tumour) at 20 years and gradually improved over about four years. Later I trained in naturopathy and herbal medicine and also became a massage therapist. In also used homoeopathy and natural remedies and I never took cortisone. I am now 79 years and only use 20-40mgs of Mestinon daily. I watch my diet carefully and find I worsen with wheat. Never ever take any drinks with quinine as the eyelids become half mast in 20 minutes. Covid was a bit problematic. I avoid any garden chemicals or insecticides which are neurotoxic. Don’t despair. It is a frustrating condition and your friends won’t necessarily understand.All the best!

  • Sally W Hardter

    Member
    September 9, 2023 at 7:13 pm

    Hi Tracy: Good luck with your decision but most literature on MG encourages the thymectomy regardless of thymoma or no thymoma. I was diagnosed at 59, (nearly 69 now) however I feel that I had symptoms of MG well before diagnosis (double vision, ptosis, chewing problems, talking problems and fatigue, tripping and stability issues) and fortunately my savvy Opthlamologist assessed my double vision ordered proper labs revealing positive ACR antibodies. I also had a head CT . I then had a neuro consult next and placed on high dose prednisone and mestinon. A CT of chest revealed a walnut sized thymoma so thymectomy was done via traditional open chest method as they felt the tumor may be attached to my pericardium so surgeon wanted to full access instead of doing VATS. I was essentially symptom free after surgery and was tapered off prednisone. A viral illness about a year after surgery prompted double vision and ptosis so I have been on Cellcept and mestinon ever since. The thymoma could have become malignant and even if your thymus is healthy now, it could develop a tumor later.

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