I was scanning my email box and weeding out the spam ... I do that a few times a day. I almost deleted the email without reading it.
I didn't recognise the return address.
The subject line didn't catch my attention.
I just about hit the delete ..but something made me decide to look at it.
A stranger. No one in particular. Approaching me, because they'd been given my email address, but they didn't say who gave it to them. They wanted my opinion, advice even ... and I'm sitting here wondering what to tell them.
A few years ago ...I was rather firm on my response.
They were diagnosed with Myasthenia Gravis .... and they want to know if they should have a thymectomy.
What bothers me ...is they didn't say in their email if their doctor's are recommending it. They haven't said if the CT scan or MRI has said it's enlarged or if there is a thymoma (if thymoma is there, the it is a given, get the sucker out).
The enlargement may not even be obvious until it's out ...and even if it is enlarged, does that really *MEAN* anything?
They didn't say if they found me through the blog ...through the MG foundation ...our local MG chapter, my doctor (who has my permission to refer patients who are worried)
They just want to know ... I have Myasthenia Gravis and should I have my thymus gland removed ...and what technique should I 'insist' the doctor's use?
Well, first, it sounds to me like they've already decided to have it, they just don't know if they want transternal (the method I had) or cervical.
I've also read of a new method, that I wouldn't dare blog about because I only read about it once ... something about going in the side of the ribs. It sounded like a dream to me. Oh if only that had been an option for me 16 years ago!
WOW!! I just realized, June 2 will be 16 years since my Thymectomy. Medical science has changed dramatically since then. I went into the hospital with them telling me I had a 60% chance of remission ... by the time I came out of the hospital 10 days later, the study that was expected was released ... 60% was still on the page ... 60% of patients who have a thymectomy with in the first year of onset in the disease can expect to see 'some improvement in symptoms' ... a far cry from 60% chance of remission.
Those who'd been sick for over 2 years at the time of diagnosis (like me) really didn't have much expectation for help. In other words, had the study been released just 3 weeks earlier ... the surgery would not have been recommended for me.
My thymus was enlarged ... significantly so. What that meant for me, I never have learned. I figured, it was just as well that I got it out anyway.
I then, spent the next 10 to 13 years saying that I would do WHATEVER it took to put me into remission ... EVEN IF IT FAILED.
I would recommend the thymectomy ...and DID to many who asked my opinion when their doctor's flat out insisted and they were terrified.
I would tell them that all I could think about was the 'what if it was the one thing I could have done, and didn't do .... it was worth it'
But now ... 16 years later ... research isn't holding fast the recommendation. There really needs to be hard fast proof for a call for that thymectomy. That "what if I'm the small % that gets lucky" isn't quite enough for such a drastic surgery (especially a transternal surgery! They cut your chest wide open for crying out loud!!)
Am I just getting older and understanding risks more?
Am I just getting more pain and because of the surgery ... I've got a significant case of chostochondritis ... where the wires are, and the scar tissue ... it HURTS when the rain comes. When the lupus flares ... the chest wall is a significant sourse of pain for me. Breathing often causes pain when breathing should come as natural as ...well ... breathing!
Is my questioning the 'go for it just in case!' ability to fight this monster (MG) because I've realized that the thymus gland isn't part of the MG monster ... or is it that the risk comes with a monster of it's own down the road?
What do I tell this person who wants my opinion with not enough info for me to form an opinion!
If it were me ...today ... and I didn't know what I know now ..what would I do (assuming I still had my thymus and they wanted to take it)
I also ... was told, and I have *NO IDEA IF IT IS TRUE* that those with no thymus ..cannot have bone marrow transplants ... yet ...in recent months and years ... you read the national research ...bone marrow transplants for autoimmune diseases for lupus and myasthenia gravis .... will I be excluded because I had a treatment that didn't work.
If, that is true ..the patient has no enlarged thymus, and no thymoma ... I'm afraid my answer would be a resounding no. If bone marrow transplants are ever in our futre, do not ruin your choices for future treatments that may act as a cure or life saving tactic.
I guess, I should go do some research to back up my contemplation. After my son graduates.
Between now and then ...this is purely from memory and off the top of my head!!!