• w-courtland-robinson

    Member
    December 6, 2023 at 4:50 pm

    I had a successful thymectomy in 2014 only a few months after my diagnosis. It went very well, no complications, and no new growths since. I cannot say what the progression of my MG would have been without the surgery, but I feel the surgery was both necessary and successful and I have been managing for nearly 10 years with mild/moderate symptoms.

    • paul-spychalski

      Member
      January 3, 2024 at 11:39 am

      Were there spots on your Thymus? They took a MRI of my Thymus ( VA ) and said the small spots on my thymus were not enough for me to have MG. ??????? Do you have spots on your Thymus? Are they large or small? What other condition were they in? Vietnam ’67….

  • Debbie sandwra

    Member
    December 6, 2023 at 6:08 pm

    I had a different experience. I used a top surgeon and he paralyzed half my diaphragm. Fortunately I’m ok with just half working. It also did nothing to help me. Im 4 years in and this year was the worst of my life. 3 hospital stays. So the surgery doesnt work for everyone. I dont want anyone getting hopes up that this is a cure.

  • leora-diana

    Member
    December 6, 2023 at 7:30 pm

    I was diagnosed in the summer of 2010 with drooping eyelid, fatigue and double vision. A tumor was found on my Thymus, so making the decision to have the surgery was relatively easy. I had my Thymectomy 2 months later. My tumor was benign and I had no symptoms again until 2018 with trouble swallowing, double vision and muscle weakness. I lost 28 pounds in 1 month. After 3 IVIG and Prednisone for a few months I was put on CellCept and Mestinon which I continue to take. My symptoms are manageable and I do not regret my surgery. Recovery for me was stressful for the first couple weeks but I recovered within 6 weeks and was back at work. Good luck.

  • agasimpson

    Member
    December 7, 2023 at 1:51 pm

    My son was only 13 when he was diagnosed with MG. His thymus looked fine. The doctors at Stanford Children’s Health did not push for the surgery. They told me that it would be plan B, and they want first to see how he reacts to prednisone and mestinon treatment. My son went into remission after about a year. Three years later, he manages with occasional mestinon every few days if he is very active. We never did the surgery.

    It looks like the decision about the surgery depends on the individual situation.

  • sally-w-hardter

    Member
    December 8, 2023 at 7:06 am

    I was diagnosed with MG by my opthalmologist in 2011 with severe ptosis and double vision though in retrospect I had symptoms for a few years prior to final diagnosis including balance issues. After my diagnosis, I was started on prednisone and mestinon and sent to a neurologist. He ordered a CT of my chest and I was found to have a thymoma so getting thymectomy was necessary. I had the option of robotic surgery however I chose full sternal excision feeling this would ensure full excision. I had thymectomy in 2013 and was in a remission with no medications for almost a year however a lingering cold virus caused my eye symptoms to return and I was placed on Cellcept and continued Mestinon. We all hope that full and lasting remission is in the cards but often it is not but I do feel my symptoms were less severe since the surgery. Good luck with your decision!

  • Andy Seles

    Member
    December 8, 2023 at 4:37 pm

    Well, assuming you know the difference between Thymoma surgery and a thymectomy, I had the latter a couple of years ago with Dr. Louie, a top U.S. surgeon, in Seattle, WA. Dr. Louie maintains that the best and latest robotic technique is to go in on the LEFT SIDE, collapsing the left lung and proceeding under the heart to remove the thymus. Even though this sounded daunting, I had it done. I’m now 76 years old and still on my infusions and mestinon with no perceivable changes from the surgery (which I’m told can take up to ten years…or never). Was it worth it? In my opinion, it was because I’m someone who would always be wondering “what if?” Anyone considering a thymectomy: if you can have the surgery done WITHOUT a catheter, I would recommend that. I opted for a catheter and had complications that extended the surgery time.

  • shelby-mowrey

    Member
    December 8, 2023 at 4:45 pm

    I had my thymus out, they didn’t think I had a thymoma, but I did. It was malignant and invading my heart sac. I had nine weeks of radiation and I’ve been cancer free from that type of cancer for 25+ years. As far as the surgery goes, I was back at work in two weeks with my heart pillow. They wanted me to wait 6 weeks but I couldn’t due to my job. I suggest you do wait, if you can. I truly had no issues. I did not have robotic surgery. They split my chest in half. It did not help my MG but it did find the cancer! So I still think it was a win.

  • keith-wilson

    Member
    December 8, 2023 at 6:11 pm

    I had a thymectomy done just over a year ago. Life changer. Don’t get me wrong, I’m still on meds but not near as much and I function much better.

  • Indar

    Member
    December 9, 2023 at 1:22 am

    I had a thymectomy in 1959 at the age of 16. Shortly after the surgery I experienced a myasthenic crisis, had to be resuscitated and was put on a ventilator. My symptoms gradually decreased over a period of years–the last to go was double vision. Perhaps around the age of 50 I dared to get off mestinon with no problems. I am now 81 years old and rock out in Zumba classes–symptom free for years.

  • gina

    Member
    December 9, 2023 at 7:52 pm

    I had my thymectomy after 5 years of severe symptoms… I was 22 yrs and had it done thru my neck back in 1972. The surgery was about two hours and I was home within 5 days; continued on low dose pred along with mestinon.. the surgery definitely helped and I have been stable .. no fluctuations or problems.. never been hospitalized since and have not taken any meds in decades. Still have some lingering issues but very grateful…. I’m 73 .

  • amy-cessina

    Member
    January 3, 2024 at 6:09 pm

    After I was diagnosed they scanned my thymus and said they saw “something” . Went to three different surgeons and they all said something different. The last surgeon was pushy and I left with a surgery appointment because of the pressure. The day before surgery I bailed out. I’ve had repeated scans without any real diagnosis or change in my thymus. In fact my thymus is shrinking . I have a mild case and my neurologist agrees with my decision to not go through with the surgery. Sometimes surgeons just want the business. I have late onset . But I will check occasionally by scanning. It’s been 6 years since this happened. Sometimes I feel thymus removal is junk science and sometimes I think it’s not. Because it working seems so random. Seems like a personal decision. Despite thymus removal being routine it’s not a trivial surgery.

  • James McCay

    Member
    January 15, 2024 at 5:51 pm

    SORRY FOR ALL CAPS, BROKEN KB.

    SEEMS LIKE A WIDE VARIETY OF PROS/CONS. I WAS A 16-YR MEDICAL PROFESSIONAL WITH WIDESPREAD KNOWLEDGE BEFORE I GOT TOO SICK TO KEEP WORKING IN 2001. RN’S SAY “GO TO TEN DOCTORS AND GET 10 DIFFERENT DIAGNOSES.”. THAT COULDN’T BE MORE ACCURATE!

    I HAVE AN XL HYPERACTIVE THYMUS GLAND FOUND AT AGE 39. I HAD MILD/MODERATE MG SYMPTOMS RANDOMLY MY WHOLE LIFE, NEVER DIAGNOSED UNTIL 2006??? A THYROID CT SCAN CAUGHT MY XL THYMUS BY ACCIDENT (WRONGLY CALLED A THYMOMA FOR 5-YRS). EVERY NEUROLOGIST REFUSED TO DO A THYMECTOMY FROM 2006-2012. THEY SAID MY BAD DEGENERATIVE DISC DISEASE AND FIBROMYALGIA WITH MG WOULD CAUSE ANY GENERAL ANESTHESIA TO STOP MY BREATHING. THEY ALL SAID I’D NEED A RADICAL THYMECTOMY (SAW THROUGH RIB CAGE). GLAD I DIDN’T GET IT.

    HOWEVER THIS XL HYPERACTIVE THYMUS BLOCKS ALL NEW MEDS FROM WORKING SINCE 2009 (EVEN ALL MG MEDS), OR CAUSES MG EXACERBATION (THAT ONLY ONE NEUROLOGIST UNDERSTOOD OUT OF DOZENS!). I ALSO HAVEN’T HAD A COLD/FLU AT ALL SINCE 2008 AND NEVER GOT COVID (HIGHLY EXPOSED IN 2020)- OBVIOUSLY FROM THE XL THYMUS GLAND.

    YOU’RE THE BEST AT KNOWING TO FOLLOW YOUR INSTINCTS. STUDY AS MUCH AS YOU CAN ONLINE FROM REPUTABLE SOURCES. MANY DOCS DO SURGERY JUST FOR THE MONEY;ESPCIALLY SINCE DRASTIC MEDICARE/MEDICAID CUTS SINCE 2010 IN NYC, CA, IL & OTHERS.

  • tmq

    Member
    January 17, 2024 at 9:42 am

    thymectomy in 2001, no relapse since.

  • gina

    Member
    January 17, 2024 at 5:14 pm

    My thymus surgery was quite easy.. had it done trans cervical way back in the 70’s.. took less than two hours and I was home in several days.. Thymectomy did improve my MG and I have been stable for the last 50 years.. still have symptoms the worst being difficult swallowing-

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