Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 08-10-2009, 10:52 AM #1
prokopia prokopia is offline
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Default new member -sharing positive thymectomy experience & having questions for next steps

Originally Posted by prokopia
hello to you all!!

i was diagnosed with myasthenia on April 09, since i am reading your letters and that was very helpfull to me.
i am a female 39 years old /mother of two young children).
i had a thymectomy before 4 weeks and i am really getting better everyday....
i want to share with all of you, especially with women, my choice of having a cosmetic procedure done : a "submammary incision with skin flaps" (a scar hidden under my breasts)...it was really a great choice as it preserves the upper chest skin free of scars ....and it doesn't show at all!!! i believe that this helps to forget....as you don't see it everytime you are facing a mirror.

i took out an enlarged thymus and now my neuro suggested me to add to my mestinon treatment a antidepressant drug (Zoloft / sentraline hydrochloride), in order to help myself getting stronger! he claimed.... has anybody had a similar recommendation?

nice meeting you
P.S Sorry for any :mistakes in my english.. i know it is not always perfect..
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Old 08-10-2009, 12:32 PM #2
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Thumbs Up Hi there!

Hello and WELCOME! You are going to LOVE this site!

4 weeks and you are already feeling better? What wonderful news! Sounds like you are on the road to remission! What a blessing!

Just remember to rest when you are tired - I was up and cooking 9 days after mine and I truly believe that's why I am having kind of a hard time now......Granted, it's probably just me, but I just wanted to make sure you take care of YOU for the time being!

I think it is grea that you that surgery! I had the regular one - with scars on my chest, but I consider them my "brands of honor" when people mention having them removed - after all, how many people have scars from a thymectomy? Not that many!

How are YOU today? Are you feeling better?

THanks for the positive words?

Erin







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Originally Posted by prokopia View Post
Originally Posted by prokopia
hello to you all!!

i was diagnosed with myasthenia on April 09, since i am reading your letters and that was very helpfull to me.
i am a female 39 years old /mother of two young children).
i had a thymectomy before 4 weeks and i am really getting better everyday....
i want to share with all of you, especially with women, my choice of having a cosmetic procedure done : a "submammary incision with skin flaps" (a scar hidden under my breasts)...it was really a great choice as it preserves the upper chest skin free of scars ....and it doesn't show at all!!! i believe that this helps to forget....as you don't see it everytime you are facing a mirror.

i took out an enlarged thymus and now my neuro suggested me to add to my mestinon treatment a antidepressant drug (Zoloft / sentraline hydrochloride), in order to help myself getting stronger! he claimed.... has anybody had a similar recommendation?

nice meeting you
P.S Sorry for any :mistakes in my english.. i know it is not always perfect..
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Old 08-10-2009, 01:16 PM #3
Joanmarie63 Joanmarie63 is offline
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Welcome to our "family" {by the way, your english is just fine} interesting surgery you had, when I had mine {18 years ago} there was no other option then across the neck and down the chest, but heck I don't even notice my scars anymore and when people do notice they just think I had heart surgery, sometimes I just agree so I don't have to explain My surgery put me into remission for 17 years and I hope yours does as well. As for the zoloft, I don't know about that but you should check and make sure it is not on our list of drugs not to take, I myself take Xanax as needed.
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Old 08-10-2009, 01:49 PM #4
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Welcome to our group Prokopia!
I am so happy for you, feeling something good out of your thymectomy already ! What an awsome cosmetic idea, I wish I had had that done, as I am low in the boob area, & my scare goes all the way to my lower neck line, it's the pits!
Glad to meet you!
Mary
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Old 08-10-2009, 03:11 PM #5
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Talking positive positive thymectomy experience but worse MG symptoms

Thank you for your messages...but unfortunately by writing that i am already feeling better i ment i am feeling better regarding the surgery; that my chest pain is going away, that i am able to better hold with my hands, and able to sleep at last in a better way.

Unfortunately my MG symptoms are worse!!! all of them, and i even had one MG crisis 3 days after surgery (they had to give me oxygen and drugs / i was at the hospital at that time that was the good thing about it) and two minnor incedents during the weeks after surgery, but my neuro told me that this is something normal not to worry about!!

the problem is that sometimes i worry a lot...a stresfull feeling that is difficult to control (these 5 months /from the day i was diagnosed till the surgery +++/ were a real nightmare for me, maybe that is the reason why my doctor wants me to take also antidepressant drugs apart from mestinon....it may help on my positive thinking!!


think positive!
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Old 08-10-2009, 03:21 PM #6
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Hi Prokopia,

Welcome to the group! So glad to hear you are feeling so good already. Your thymectomy sounded very interesting. Not having the chest scar is great. I haven't been prescribed an anti depressant, but maybe someone else here can help you with that question. Take care.

Hugs,
Pat
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Old 08-10-2009, 04:21 PM #7
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Having MG is stressful not to mention you have young children. When I was DXed my son was 6 weeks old, so I understand your stress. As I said before, my thymectomy put me in remission but mind you it doesn't happen overnight. I am glad your pain is less and I believe it is normal for the MG to be worse {you did just have surgery} but it should get better, and remember to remind your Dr to check your medication levels often, to much meds can cause a crisis as well. Take deep breaths and try to relax {I know it is hard, but you can do it}
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Old 08-10-2009, 05:48 PM #8
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Prokopia,
Hope some symptoms get better as well for you, when I had my thymectomy, the first thing I noticed was my breathing got better at the 3 to 4 week marker after surgery.
Take care!
Mary
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Old 08-10-2009, 11:33 PM #9
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Default Hi there!

Hey Prokopia,

So glad to hear that you're feeling better from the surgical point-of-view...I also had a thymectomy about 3.5 weeks ago...There was a thymoma in mine and mine was also enlarged...My doctor suggested that I go with your type of incision (cut under the breasts)...He told me that the only downside is that the healing time is more painful....I opted for the sternotomy instead (I'm a pain-baby....lol)...Don't worry too much about the worsening of the MG after the surgery...I had a very similar experience about a week after I got out of the hospital...My speech, swallowing and face became very weak...I'm now taking prednisone (which is a pretty strong medication, I know), and am feeling a lot better...I haven't noticed any of the bad side-effects yet (my face is a bit swollen and I'm a bit more nervous than usual (btw, I share your anxiety, though))...My meds have changed from mestinon 60 mgs 3-times a day, to that plus 180 mgs in the AM and 60 mgs of prednisone...I also had 5-treatments of plasma exchange while in the hospital...Overall, My speech is very good now, and am looking forward to feeling much better once the prednisone really kicks in....

About your feelings of anxiety...I share those...My neuro. said that I have to get that under control otherwise my MG will be much worse...Sometimes it's hard to tell whether it's the poor health causing the depression/anxiety or vice versa...I'm planning on exercising more to relieve some of my tension...I think it might help a lot...Anyway, know that I empathise with you!


I hope you get to feeling better very soon!

Nicky
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Old 08-10-2009, 11:46 PM #10
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I also have a big 7 in. scar down my chest. I wore a swim suit last week for the first time post surgery.
No antidepressants for me. I don't have anxiety or depression problems. I was real week for a few months, couldn't even drain the mac and cheese. I started lifting 5 lb. hand weights to get strength back.
My symptoms went away for about 3 months after surgery, but have been back ever since then.
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