UPDATE: Thymectomy surgery
I had my thymectomy surgery Dec 3rd and was released from the hospital the next day. It was a success. Oddly enough I am a lot more mobile than I thought I would be. I still have to force myself to sit down and rest because I'm not someone that likes to stay still. I have yet to take the bandages off and see the stitches. I think I have 4 incisions. My throat hurts from the oxygen tube and my chest hurts when I breathe, cough and sneeze. I've been coughing up a lot of phlegm which I thought was odd since I wasnt sick prior to my surgery. I wonder if that has anything to do with them deflating one of my lungs. The doctor did say I have a chance of catching pneumonia after the surgery so they had me on antibiotics and they were checking my temp every hr.
I honestly cant feel any pain from the incisions. I don't need any major pain killers. Tylenol has been doing wonders for me.
My doctor said next week he'll start reducing some of my meds to see how my body reacts. I'm nervous but excited because this is what I wanted. I wanted to gain control over my life again without the use of oral medication.
Thank you everyone for the support and advice.
- Jazmin (team member)
Jazmin: Thank you for your reply. Did you need someone to be with you at home to help? I dont have anyone that will be able to. That is one concern. Secondly, I dont know if you work but if you do, how long before you could go back to work? Did you have to sleep sitting up due to the incisions? I am assuming you had robotic surgery perform that? Did they have to intubate you for that surgery? Sounds like they did. Ive had that done when I was in MG crisis and that is what I am most scared about. That was devastating to me. Im still trying to get my voice back after 3 months being out of the hospital. Thank you so very much for this reply. It has answered my questions for sure. Now I know what to expect. THANKS! you're welcome. How has things for you so far at work?
- Jazmin (team member)
Hello
Glad your surgery went well
Did you have Robotic surgery ?
That's strange. Maybe that one doctor doesnt think your thymus gland is the root to your MG. Do you have plans on getting a thymectomy? - Jazmin (team member)
And sorry for the late response. I've been really sick lately.Thank you
Thank you very much. Oh man, the old fashion way sounds rough. How long did it take you to fully recover? I never had a plasma exchange before. I still get IVIG's and trust me I'm not in any rush to get off my meds. I don't want my body to relapse. I've been on reduced meds for a week now. My neurologist said after a month he wants to reduce them again. Thanks again for the support. - Jazmin (team member)
, On December 6th the date this was posted I was having surgery for a hernia. I also have 4 incisions. My throat did not hurt at all. I am sorry that yours did, I know that can be irritating on top of surgery. My anesthesiologist went to great lengths to make sure that did not happen. I was released the same day as surgery. He called me at home the next day to check on me. I/we (my Dr.s'😉 had a hard time of finding anyone willing to do surgery, because of all the possible complications because of all the medical issues I have not just MG. I also had extra phlegm for a few days. In my opinion, that can be just normal from the breathing tube with the oxygen going directly into the lungs. This was my 4th surgery and I have had extra phlegm every time. Also, the chance of getting pneumonia after any surgery is normal. Usually because of laying down flat and not keeping head elevated. So not getting that phlegm out. That is what I was told after my first surgery before I was released to go home. Glad you are doing well!! Hoping that you can get off and stay off of medications!! Sally (team member). , I am sorry you had a long surgery and a hard time waking up!! My surgery and recovery were a total of 2 hours. It was about the 10 mins for recovery. My anesthesiologist took extra care. Not only because of MG but also the Chiari malformation & spinal stenosis, sleep apnea, type 2 diabetic and other stuff that can have poor outcomes with surgery. He the (anesthesiologist) gave me a breathing treatment of albuterol and something else (do not remember what). I found out by accident that albuterol helps my MG just like mestinon but faster. So, he gave me that to keep me stable during surgery without needing mestinon. Now through my own research I have found that albuterol is a treatment for some forms of congenital and for some people that are Musk positive (autoimmune). And my anesthesiologist was familiar with working with all forms of MG. And had done that breathing treatment to others that responded to albuterol. Sally (team member) Sally, did you have Chiari? My daughter had that surgery. Just curious since you mentioned it above.
