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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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12-03-2007, 07:36 AM | #1 | ||
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Junior Member
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Hello, I,m 36 and had my Thymus Gland fully removed in 1999.The procedure was through the Breast Bone.....Non Cancer..And not M.G. .This spring I started having the same chest pain and lumpish feeling back in my throat again...I requested a Cat Scan and the results are showing a shadow...My surgeon,another Dr. and 3 techs are not sure if they are seeing another tumor or scar tissue....I had another Cat Scan 3wks ago and still waiting to get the resylts...I want to prepare myself with questions when I go in to see my Dr. Here is my Question...Has anyone ever heard of a NON Cancer Thymus Gland removed able to grow back?...OR ....Has anyone on this forum ever have it removed and have scar tissue to grow and cause the same symptoms..Any help or places for to read would be GREATLY Appriected!..Karen.
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12-04-2007, 05:57 PM | #2 | |||
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Hi,If my memory serves me correct, i think it can, if all the thymus fibers weren't removed.
What you can do is look up Thymus through google or any search engine, and see if they have something frequently asked questions or something like that. I wish I could remember for certain. But it seems to me that remember someone saying it could. I do remember reading that the thymus gland was very difficult to remove, because of how it's attached, and the fibers being so small. I'm sorry, wish I could help more. best wishes Love Lizzie |
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12-04-2007, 07:38 PM | #3 | ||
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Hi Lizzie..Thanks for the note...I did google it ..But the only thing I seem to get is patients who have had removed and it being cancer...then there is a certain percentage of it coming back...But in my case...Mine was benign...Thank my Lord for that...I called my surgen yesterday the receptionist tells me that my second Cat Scan report said Patient has shadow and should follow up with further Cat Scans,...And that is all they tell me...I think i,m about ready to take a plane and go get a second opinion in Toronto....Frustrated...Karen
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12-05-2007, 06:25 PM | #4 | |||
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I wish I could remember where I read that, or heard of it. But I thought that if they don't get all the fibers, that from those fibers, it can grown again. I believe the thymus is normally really tiny, and spread out in such a way that it's a difficult thing to get.
How much longer do you have to wait before you find out. I absolutely can't stand waiting. I'm kind of in that right now, with a lung issue I'm having. I have another two weeks, before I see a specialist, and then probably a few more waiting for results and such. My nerves are a bit frazzled. Let us know wen you find out. love Lizzie |
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12-05-2007, 08:35 PM | #5 | ||
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Junior Member
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Hi Lizzie...Thanks for looking....Well, I broke down and called the Dr.2 days ago figuring 3 wks was long enogh to get my results back in his office..Receptionist informs me. Yes, the results are back...ANNNND I ask!....She reads me the report..Patient stills has mass and should follow up with future Cat Scans...So, I kindly asked her to ask the Dr. to call me or set up an appointment...I would like to know if it there is any change in the shadow...Is it darker looking, is it bigger, is it smaller?.Do I have to wait for another 6 months for a 3rd Cat Scan?...Then I will have to make a decision whether to leave the province and go for a second opinion...
What kind of problems are you having? My best friend has had a constant cough for 1 year now and they see spots but have know idea what they are...She can't laugh without coughing up flem... Good luck with seeing your specialist and Thanks Again for trying to help me....Karen |
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12-06-2007, 03:11 AM | #6 | ||
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Junior Member
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I,m trying to find articles for you also. I think there is something about residual thymus. If I find I will write back.
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12-06-2007, 03:29 AM | #7 | ||
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Junior Member
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Try this thymoma.de/starthere.htm
Even though it is about cancer, that is all I could find. It does though have patient stories and maybe you can get some answers there. Looking around there is a doctor there listed who is expert. Maybe you could e-mail him for advise. I will keep poking around too. Good luck. |
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12-11-2007, 04:41 PM | #8 | ||
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Junior Member
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I also had a Thymoma removed in 2001, upon diagnosis of MG. I went to UCLA and saw Dr. Robert Mulder. I believe that he is the best. I know that it takes years to see the results of your Thymectomy. If removed properly it should not grow back. As you know though, MG is sooo very different for every individual. I do know that anxciety is a huge factor when dealing with this and mind over matter will make a humungous difference in your recovery. So, Think possitive and follow up with a doctor that you trust>>
Good Luck, Vicky |
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01-06-2008, 08:43 PM | #9 | ||
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Junior Member
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Quote:
Are You still looking for answers to your Thymus question? I originally had mine removed when I was 16 by a very renowned surgeon at Mt.Sinaii in NYC.When I was 32 CT scans revealed that it had grown back---or"rejuvenated"was the term the Drs used the. At neither time did I have a Thymoma. Curiously,I have since had problems with my thyroid glands---hyper/hypo and now I have a growth about the size of small plum called a cold nodule on my thyroid.Thank goodness its benign. So even tho the regrowth is rare its not unheard of. Hope I helped,somewhat. |
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01-06-2016, 10:24 PM | #10 | ||
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Newly Joined
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I got on this site because I had the same question. I have M.G. and my speech had gotten so thick I couldn't talk and eating and swallowing were hard. I had my thymus gland removed in April 2008 and now I am having the same problems that I had before the surgery. I must take a drink of something after every bite because it only goes down so far when I swallow...liquid, especially carbonated, wants to go up my nose. I cannot control my tongue as well. It has become such a chore to eat that even if I'm hungry, I dread it and as soon as I get the least bit satisfied, I stop. The only good outcome of this is I'm losing weight..down to 192. I have a new neurologist I'm seeing in Febuary and I will ask him. I'm taking care of my mother who has ALZ and it's increasingly frustrating. She is hard of hearing and for her to understand me I must raise my voice a little...this is very tiring plus sometimes she perceives it as me being angry with her and I have to explain it. I am getting so tired. I'm glad I found this place where I can come and talk to those who share my frustrations. I also have eye droop, double vision and get out of breath easily. Thanks for reading this. I'm good at writing novels. LOL
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"Thanks for this!" says: | Lily7 (01-07-2016), pingpongman (01-06-2016) |
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