Treatment and Symptoms Pre-Thymectomy and Surgery Results

[Thomas Lee Clark]

1. Pre. Weakness swallowing, chewing, terrible double vision and walking. I had clotting at the same time which may not be related to MG. I had to hold my head up with my thumb.
2 13 Pheresis treatments, none of which made a difference. The Nurses remarked how some were almost immediately renewed. That never happened for me. Mestinon was a bust, prednisone 70mg every other day worked so I could go back to work and a cancer drug prescribed by the neuro.
3 Surgeon did open sternum type. still can feel the wire. Thymus was normal but I awakened from surgery healed, like the Pheresis nurses talked about.
4. around 2 years. and now over 20 years no same symptoms. When I get weak it does frighten me and my last pair of glasses which were made wrong gave me double vision. The culprit eye was on the opposite side even as I turned the glasses upside down. It was my right eye over which I wore the disk. Really scared me.

[Jodi Enders]

That sounds like quite the progress, Thomas! Are you currently on any maintenance treatment?

[Thomas Lee Clark]

I am NOT on any maintenance treatment or MG meds. I am always asked by the primary doc and nephrologist regarding MG symptoms. The primary has had other MG patients and he remarked where one had the thymo surgery without the recovery I had.
My recovery is remarkable. From the onset of diplopia and over a three year period it was a physical roller coaster. I still worked in my engineering position but chose to retire and went into dark times. I was still active as a minister through the entire illness. After the surgery I had several life changes which included driving 18 wheelers coast to coast for two years and came back to ministry full time and quit driving. I still maintain my Commercial Driving License and have done pinch hit for companies who need a driver. I can and have passed physicals to drive school bus. I have not taken a flight physical, I was a pilot prior to but that physical is very stringent so I did not try. Life goes on and I feel very blessed. I have extreme difficulty walking or standing and while some may be age related I must be careful falling which started during my MG years. After the thymo I had an embolism and had a Greenfield filter installed in my vena cava to catch clots from DVTs. My increased interest is because of covid and the vaccines and the fear of compromise. I traveled to India to work in and orphanage and could not take the malaria meds. My primary doc jealously guards what I do, especially flu shots and now the covid stuff especially the clotting which has occurred. What a ride! Sorry I rambled.

[FrancisW]

Thomas I am reviewing the research on Thymectomy for my own situation.  It sounds like your symptoms were pretty severe !   Do you know what was your MG classification e.g.  I, IIA, IIB etc. ?   Will you tell me your age when you had the onset of MG and your age when you had the Thymectomy?   Thank you,  John

[Thomas Lee Clark]

Sorry, I did not have a classification of which I am aware. I am now 76 years old feel really good. I was 57 when I had the surgery. For ME it was a miracle. My GP, who is on top of this and knowledgeable has kept me under close care. Francis, you have everything to gain by the surgery. All I can admonish is be certain the knife person gets every minute speck, nothing left of the gland. Not my words but the neuro doc was adamant about this aspect. My quality of life postop is something I can hope for all MG sufferers. Adding you to my prayer list, and your docs. I do have the stories don’t I?

[Peter Livingston]

• <span data-preserver-spaces=”true”>What were your prominent symptoms before surgery?
  Severe Ptosis left eye.
  Severe upper body weakness   Breathing difficulty especially when lying down. Some swallowing difficulty.  Extreme fatigue aggravated by heat</span>
• <span data-preserver-spaces=”true”>What treatment were you receiving right up until surgery?  Mestinon 60mg TID </span>
• <span data-preserver-spaces=”true”>What type of thymectomy did you receive? Open.  My thymus was quite large and much too large for endoscopic attempt</span>
• <span data-preserver-spaces=”true”>How long after your MG symptoms begin did you have surgery? 5 months</span>

Now, 6 years post op, I had become symptom free even in heat and I had dropped Mestinon.  Then I got Covid vaccine which start an immune response and my MG symptoms returned in full.  Back to Mestinon which brought marginal improvement.  Then IVIG and by day 2 of loading dose brought dramatic improvement. Now having IVIG  monthly for 6 months prescribed – 2 months in and I am virtually symptom free again but my neuro has me on Mestinon 60mg in the morning and 30mg two times during the day.

[Dave Haw]

I was diagnosed in 2013 with Occular Myasthenia Gravis. My 1st neuro wasn’t very informed about MG. I was on pyridostigmine 60mgx4 daily and prednisone 40mg high dosages. I changed doctors and my current angel neurologist is very proactive in caring for me. I had the vat version (minimally invasive) thymectomy in 12/19. At that time i was on IVIg, and fairly controlled. I to date haven’t felt a major change in symptoms unfortunately. I am on pyridostigmine 180mg er, Mycophenolate 1,000mg x2 and with adequate sleep my vision is relatively normal. We stopped Soliris since my neuro didn’t want me going to an infusion center during the pandemic. I M authorized to restart it but at $80k per dose I’m going to wait.
That’s my experience. I’m glad i did the surgery at age 65. I didn’t want to wait until it wouldn’t be an option. The greatest concern being the anesthesia.

[Hilda Edwards]

That’s interesting Dave. Did you have the thymectomy surgery and did it solve the problem. I thought if you had the surgery it completely cured the ocular problem. I don’t have a problem swallowing and I can see quite good but I get fuzziness and twitching around the perimeter of my vision. The Mestinon and prednisone cause other nasty side effects.

[Dave Haw]

I had the minimally invasive procedure, but it can take up to 5 years to take effect. Currently my symptoms are generally more annoying than life threatening. I would of course prefer to be in full remission.

[ChrisM]

Speech difficulty and swallowing issues.
I wasn’t on any medication prior to surgery as symptoms were manageable.

I had a full sternum break surgery about 6 months after symptoms and a month after final diagnosis.

the thymomic sac was cancerous and I had 5 weeks of radiotherapy and a month after that a full blown myasthenic crisis with nearly a month in hospital.

[Thomas Lee Clark]

Hilda Edwards. I had an on open chest thymo extraction. When I came out of the anesthesia I was what I considered HEALED. Another patient at my doc was not as blessed, it did not work for them. My thymus was not sick enlarged or anything except my neuro doc pressed by my wife scheduled it. Hilda, keep the faith and press on. With new drugs on the horizon there may be something that works for you. What ails me now may not be related to MG. There may be some residual effect of nerve damage and weakness but I can see 20/20 corrected and both eyes see the same color. Don’t stop and don’t give in to despair. My vision got so bad I could not stand light when this first came on. The ophthalmologists did not diagnose and sent me to a neuro who done the brain tumor thing and other searches I do not remember but she quickly turned to the MG and kept her focus there. I am thankful for her and for this site to learn more from others that I never knew.