Wow, I'm sorry I didn't come back to this thread until now, but I only go on-line at night. Quite honestly, I was too tired. You can see I was already too tired posting my original post, which was duplicated and poorly edited.
Thanks for all of your posts despite the challenges in reading it.
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I too had a growth on my thymus (estimated at 4cm). There was no question with my doctor that it had to be removed. Turned out mine was a Stage IIa and I had to have 25 radiation treatments. No one was excpecting this, least of all me.
Your enlarged thymus with "remnant" may possibly be contributing to your breathing problems.
You need to find a neurologist who is more familiar with MG. Do you have a MDA clinic in your city/area? If so, they could make a recommendation.
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Gee, your growth was only 4cm and was removed. My growth, at last count, was 5.7cm.
I do not know what MDA means (Muscular Dystrophy???). I have Kaiser, so I will have to see what is my next move to get them to move or if they even have to move.
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What I don't understand is that if your thymus is that huge, why they are waiting to take it out? It sounds like something impt is wrong and how can they tell it's benign w/o a biopsy? My MRI/CT shows a mass and they said they don't know if it is enlargement or tumor and they are doing surgery and they also said the finding is a definitive diagnosis for MG.
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The funny thing is that the doctor was all gung-ho about a thymectomy, but after the latest round of MRIs, he said it was not necessary at this time. I, too, wondered about how he could tell whether or not the tissue was benign or malignant, but a friend of mine informed me of someone she knew who had an MRI with contrast.
The contrast helps them determine whether or not the tissue is benign or malignant. (I did check this out and it's true. Still, I don't like the idea of some growth in my body.)
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Are you at a specialty center that sees MG on a regular basis? Just because you are seeing a neuro muscular expert does not mean that he/she has enough experience with MG. . .that is what happened to me at the beginning. . .
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That's true, but I have Kaiser (HMO). The previous neurologist, who referred me to the neuro-muscular specialist had a lot of MG patients, he thought MG, but he wanted to give a trial run of Mestinone. I could not take 90mg/3 times a day, and so he had concerns and sent me to the neuro-muscular specialist for a definitive answer.
The neuro-muscular specialist looks too young to have any experience under his belt. I mean he looks my age 40 or younger, so I do not know how many years of practice does he have, considering he has a specialty in medicine.
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There is no way that the Doctors can say for certain that the growth is "benign" without removing it for full biopsy. Also, your thymus and growth may actually be much larger than what the MRI and CT scans are showing. Even though most thymomas are "benign" as in not a true carcinoma, it is a aggressive albeit slow growing tumor that can invade lung space, invade pleural space and wrap around the great vessel of the heart. This does not necessarily show up on scans. This could be causing some of your breathing symptoms.
I would urge you to go to a clinic that had surgeons that have experience with thymectomy and thymoma and have your thymus removed.
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See, I asked my doctor can he just removed the darn thing. If it is harmless no harm no fowl, just an ugly scar. I guess I was feeling relieved that I can now breathe with the lower dosage of Mestinone. Plus, I knew I had this for well over a decade, and I'm still alive and I had the MRI with contrast to prove it.
Now, I'm thinking it's just a band-aide for what could possible visit me.
I'm not so comfortable sitting on that thought.
Does anyone know what to do if you have an HMO? Do you have to come out of your pocket and pay an outside facility for the best medical advice?