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    • #17084
      Michelle Gonzaba
      Participant

      I was incredibly scared of getting a thymectomy. I had already been in and out of the hospital and was frightened that something would go wrong during surgery. I had a panic attack and my blood pressure spiked so much that they almost postponed the whole thing.

      Now that I’m on the other side of it, I realize that it was routine surgery and I should have mentally prepared myself for it better.

      Have you experienced fear before surgery or other treatments for MG? How did you deal with it? What advice would you give to those who are scared of upcoming treatments/surgery?

    • #17085
      Ari Maayan
      Participant

      Several years ago I had 17 1/2 hour surgery for metastatic cancer of the esophagus. Before I went in for the surgery the surgeon told me that the surgery was as bad as it could possibly be and that I had a 25% chance of going from the OR straight into a refrigerator. That was on a Friday and my emergency surgery was scheduled for 6:00 am the following Tuesday. First I freaked. And then I called a friend of mine who is a clinical psychologist with training from the Institute of Noetic Sciences. She worked with me for hours over the next 3 days in helping me with designing a set of guided imagery meditations. They were basically built around my imaging myself at a point beyond my surgery and complete recovery from cancer. I saw myself at my next birthday party and my children’s next birthday party and saw myself a picture of health and completely enjoying myself with no physical infirmities. Then I pictured myself and my wife taking a vacation on a beautiful beach and noticing myself in my swim suit being quite a bit heavier than I was at the time of the surgery   Obviously I was not going to die because I had all of these things that I had to live out in my future. Needless to say I made it thorough the surgery and subsequent treatments. The morning of my surgery I was relaxed enough to have my entire OR team laughing at my repertoire of risqué jokes while I was being prepped for the surgery. Obviously I made because my ghost can’t operate my cell phone.
      Then in 2018 I had open heart surgery to replace my mitral valve, a MAZE procedure for atrial fibrillation and a thymectomy. I used the same technology for that surgery as I had used for the cancer surgery. And here I am at age 78 trucking along in my daily struggle with MG. And I still meditate on a daily basis and at least one of my meditations is a guided imagery in which I am a little old man…..which I am not now by any means!!!!

    • #17090
      ChrisM
      Participant

      I don’t intend to “preach”.  For me, my Christian faith gave me immense comfort before surgery and in treatments thereafter.  Listening to songs on my custom made playlist filled my head and heart with immense calm and peace.

      • #17098
        Gina
        Participant

        17 hr surgery, wow, you had great surgeons.  My brother passed at 41 years from esophagus cancer 6 months after dx.
        I had my thymectomy when I was 22 years old. I am now 71 and having surgery to remove a mass from my throat.
        I am happy everything worked out for you.

      • #17107
        Jacqueline Marquiz
        Participant

        I love everything about your post. You don’t need to preach when people see you, they’ll see Him.. I’m happy to have my faith and future in His hands 😉

    • #17105
      Amy Cessina
      Participant

      I am very scared of procedures. So far nothing bad has happened but it’s influenced my decisions. I bailed out on a thymectomy a day or two before surgery. It was because they wanted to do it outpatient (no overnight stay) and I wasn’t comfortable with that. That was at U Penn. I then went for a consult at NY Presbyterian and they said I didn’t need one. But you have to have things done over the years like colonoscopy, vaccinations, polyps removed, oral surgery, antibiotics  etc and each time I’m scared. I don’t handle it well sad to say. But maybe everyone here can understand the dread of MG symptoms and how it messes with your head.

    • #17111
      Ari Maayan
      Participant

      I am a scientist who has been deeply involved in biomedical research for 48 years. My PhD is from the Faculty of Medicine at Hebrew University of Jerusalem. When I get a personal issue that I need to deal with I make a concerted effort to dig deeply into the medical literature which is what I have done regarding my MG. I have found nothing that supports any curative benefits to a thymectomy. If the thymectomy is for a thymoma, I have read that there is a small chance that the removal of the thymoma MAY be curative for MG. But don’t take my word for it. Do your own research before deciding.

    • #17164
      Amy Cessina
      Participant

      Thymoma is a type of tumor so it is likely people would choose removal whether it helps their MG or not. It’s a personal decision in other instances. For me personally the thoracic surgeon told me my thymus was shrunken up because of my age so it didn’t seem worth it.

    • #17165
      Ari Maayan
      Participant

      Amy you are correct. A thymoma is a tumor of the thymus. They are known to be low risk for metastasis. Therefore the issue of whether or not to have a thymectomy is a case by case call to be made between the patient and the physician. It’s better if the physician helping with the decision is not a surgeon. Surgeons love to cut. If all you have is a hammer, all the world looks like a nail. We are all born with a thymus and in most cases the non-functioning gland atrophies by adulthood. In my case I had a fully developed thymus still at the age of 75, but no thymoma. But since the surgeon was already in there anyway, he took out the thymus. No benefit to my MG, but why the heck. He also did a MAZE procedure to down regulate the electro transmitters in the atrium of my heart. This turned out to be curative for my AFIB. Well, 2 out of 3 ain’t bad.

    • #17169
      Amy Cessina
      Participant

      I tend to agree about surgeons. The first one I went to I felt  I wasn’t going to leave without a surgery date. I was uncomfortable so I bailed two days before the surgery and my neurologist supported the decision. The second surgeon was at the same place as my neurologist and she said she completely trusted him. He is a world leading expert in lung transplant surgery so he’s not looking for the “business” you might say.  He said I didn’t need it out and I trusted that decision.
      If people wonder if I was doctor shopping for the answer I wanted there is a backstory. The original surgeon told me I had a teratoma on my thymus which is another type of tumor. I was a bit suspicious of this diagnosis and I found out later that besides thymoma , a teratoma is recommended for removal with MG. Since thymoma is very distinct he couldn’t say it was that. The second surgeon said absolutely no teratoma and it was an unethical diagnosis. So getting a second opinion did save me from getting unnecessary surgery( in my case) . Removal is a personal decision so everyone has to do right by their own circumstances. There is likely a subset  of patients it does help but they aren’t entirely sure who exactly yet, so they tell everyone about it . MG is likely a lot more complicated than having the bad antibodies. Hopefully some day they can figure out why thymectomy helps some but not others.

    • #17170
      Ari Maayan
      Participant

      Amy,

      It sounds like you have through the ringer with surgeons. I have studied the literature on the link between MG and the thymus and thymoma. I have 48 years as a researcher and professor in biomedical sciences. I simply can’t find anything that would have convinced me to have a thymectomy if I didn’t already need for the cardiothoracic surgeon to have been in there rooting around in the 1st place. There’s a tiny amount of data in the literature that vaguely hints that MAYBE there might be some curative value to have a thymectomy. But, if anyone is considering it do your own research. A thymoma is not an aggressive tumor with a very lazy way of going about metastasis. But talk it over with an oncologist and do your own research. Then decide.

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