Hey Nicky!!! Welcome homeEE! Am so glad to hear from you honey!

Lol. Am so excited for you. Do hope you'll start feeling improvements everywhere soon! Continue to recover quickly, and come let us know when you're up to it.

You've been missed Nicky!!!!

So glad that everthing went well for you. I slept upright in bed, with pillows all around me. 4 pillows behind my back and 2 on each side, just like I was sitting in an armchair but I was in bed. That is the only way that I could sleep for weeks. The only problem I had was that once I got all propped up in bed that I usually had to get up to use the bathroom. I also kept my pillow handy at all times (for sneezing & overactive kiddies). Take care ~ Melanie

I echo what many others are saying about sleeping positions. I laid propped up on MANY pillows. AFter about a week I tried sleeping on my side. I put a big fluffy pillow under my top arm and hugged it. I used 2 pillows under my head for about a month.

Interesting, lots of different spots for heparin. I got mine in my hips.

Hey Rach,

I'm so sorry for the pain you went through during your surgery! I can totally relate to the laughing thing....My mom was doing this funny spin, imitating one of the contestants on 'so you think you can dance,' and I thought I'd have to go back to the hospital I was laughing so much and the pain was so bad! lol...Now, I can laugh, but still sorta get the feeling that my lungs wont expand again when I want to inhale...I'm sure it'll pass, though.. Right now, my surgeon is on vacation until AUgust the 10th and my neuro. is on vacation until AUgust the 1st...I'm hoping I can get the results of what the tumor is whenever it's ready...It's funny, I'm taking morphine (in pill form now), and I don't notice much of a difference...I find that advil helps a lot, though..I'm glad I wasn't aware of the side-effects of possible hallucinations while on morphine...I'm one of those really impressionable people who probably would have hallucinated just at the notion of it being possible! lol...

Hey Brennan,

Thanks for the encouragement re. the scars...I'm feeling pretty hopeful that my scar will be slight, for the chest tubes too...They're healing pretty well,,,

Man, I wish I had a wedge! I'm using lots of pillows and cushions right now...It's funny, I've been staying at my aunt's, sleeping on my cousin's bed...His is very close to the ground and I find this very helpful for some odd reason...I still sleep on my side (even though it hurts a bit)...Is it dangerous to sleep on your side after a thymectomy, I wonder? I hope not, otherwise I'll be a sleepless lunatic! lol

Thanks for the well-wishes!

Hey Pat,

It's so nice that you guys were concerned about me! I really appreciate it! I agree that I need to take it a bit more easy...Sometimes, I do things out of habit...Like I almost attempted to pick up a small tv to bring to my room...Duh! Thank God I didn't even try it, seriously....can you say emergency? lol...i'm seeing my neuro around the 1st and my surgeon around the 10th...Thanks for the well-wishes! The pillows are definately a life-saver!

Hey Erin,

I can definately relate to the need for control! I really hate taking these pain-killers! At one point during the hospital stay, they had my on percocet...That was really bad for me....I felt high and kept almost blacking out! They switched me to morphine tablets...Oddly, they helped a bit with the pain but didn't give me that zoned out, high feeling, thank God!

Yeah, the heparin's bad....I wanted to ask them to stop giving it to me just 'cause I figured that I'll be laying around at home and probably not getting a blood clot, so why worry about it here...I guess they have to be careful...I suspected they would insist on giving it to me...

I'm getting quite a bit of help, thank God...My mom was pulling through, and my aunt is being really helpful!

I really wish I could sleep straight up that way, but it seems impossible! When I was in the ICU, I wanted so badly to turn to my side, but to no avail...I kept waking up every 20 mins., it seemed, because of the sitting up...I think that I will give it a shot again, though...I think that the sleeping on my side might be hampering with my healing...

Thanks for the well-wishes, girl!

Hey Annie,

The docs. didn't mention carcinoma (as far as I know)....For some reason, I just blurted out the question of whether the tumor was one...I just had/have this gut feeling that my tumor is bad, just because of how sick/weak (not in the MG way) I've been feeling.....When i asked if it was a carcinoma, the doc. was like, "well, there were nodules." So, that put a dark cloud over me...I really hope it's not one...I want this evil tumor business behind me...

Woah, thanks for the advice re. the sleeping position! I'd never heard of that before (circadian rhythm), but it makes a lot of sense! You are seriously a genius when it comes to health matters! I've read many of your posts, and you know what's up! I do use my feet a lot! I've been using them to pick up whatever I can with them....It's a lot of monkey business, but it works! I use my arms a bit more than I should...Even one of the surgeons told me to stop doing that...I was on my hospital bed, sat up, then used my arms to lift up my upper body closer to the edge of the bed...It's a bad habit that I must stop....I was wondering about the morphine and MG combo...Maybe that's why I'm having a bad flare again...I'll check with my neuro...Thanks, Annie

Hey Mary,

I'm definately hoping that my MG will fade away...I wish my immune system would make peace with my acetylcholine receptors! lol After I had my last plasma exchange (which was fairly recently, like 3-weeks ago), I was feeling really great...Didnt' even feel like I had MG anymore, then boom! Last Sunday, I started to feel that old familiar heavyness in my tongue...I'm hoping that after my next exchange, or at least in time, things will be balanced again...Thanks, Mary!

Hey Xmas,

I have recently started hugging a pillow, and it's helped a lot! Thanks

Hi Connie,

Thanks so much, homestar (lol)! I've missed you too! I'm hoping the improvements are on their way, and I think they might be...just a matter of time!

Hey Rezmommy,

I had the same experience with the preparing the bed perfectly (the pillows all in the right spots, extra blankets for cushioning, extra cushions for the under the head and arms) and then old mother nature called...argh! lol

Luckilly, there are cushions everywhere, it seems, ready for me to grab when needed!

Hey Tbarney,

It's funny...You were the first person I talked to about the thymoma on this site and to give me an in-depth account of how the surgery went and after...Whenever I'd envision what my ordeal would be like after the surgery, I'd remember that I have to have pillows ready as per Tbarney! hehe...Thanks for all of your advice and help! I really appreciate it!

Hey Nick,

New member here. I'm glad your surgery is behind you and hopefully the pain is less and less each day.

I've read your surgery experience several times now. I was diagnosed with MG two weeks ago and just heard from my neuro's office that my CT scan results showed a 4cm growth on thymus, or maybe the thymus is 4cm. All I remember hearing is 4cm! Have to go back to the neuro on August 19 to talk next steps. Last week he put me on Pred and Mestinon and I've been on those for a week now which has really helped with the double vision and droopy eyelid -- my only symptoms. I was so hoping that the CT scan would show nothing.

I read your profile and you are so young. I feel like an old-timer -- almost 57 year old female.

I'm sending good thoughts your way.

Kathy

The improvements are definitely on their wayyy! Cos you're Nicky! =D

Hey Kathy,

I am sorry to hear about your CT results. Don't you just love how they give you the results and then you have to anxiously wait 3 weeks to discuss them with the Dr. I too am 57 and had my thymectomy in 02 when I was 50. My MG started with just ocular, but within a year I had general as well...all before I was diagnosed. Try not to get too stressed out...easier said then done. It will make your MG symptoms worse. Just hang in there and know we are all pulling for you and are here for you. Take care.

Hugs,
Pat

Hey Kathy,

I wouldn't worry too much, like what Pat said...The smaller, the better....Even though 4cm seems pretty big, there are some thymomas that are 15cm! Mine was 5cm x 5.5cm x 7cm I read some study that said that when the tumor is smaller than 5cm it's less threatening just because it's more likely to be encapsulated, and therefore hasn't spread beyond the thymus--which usually means it's benign! Don't worry too much, girl! You'll get through it!

I know what you mean about the age thing...That's one thing I keep tossing around in my mind...It says that the most common age to get a thymoma is between the ages of 40-60...So does this mean that my body has prematurely aged to that of at least a 40-year old, or maybe I'm genetically pre-disposed to get a tumor there more easilly than others? I do have other autoimmune problems, so I'm guessing I might have that gene that makes the immune system frail and bedazzled...It's sucky! But I'm planning on making my lifestyle as healthy as it can be when my body recovers...I've been smoking since I was 13, and although this isn't a risk factor for getting a tumor in the thymus, I'm sure it helps to get the ball rolling in the cancer depot...

I'm looking into other avenues as well...I read a study that said that there are thymomas with estrogen receptors (those ones actually have a better prognosis), which might make a case for a hormonal cancer, much like breast, prostate, reproductive...I'm planning on steering clear of xenoestrogens as much as possible from now on...I'm also prone to fibroadenomas (one of which the docs thought might have been cancer as well, but it was biopseed and found to be okay...it's been a rough year Eek!)...i know that breast lumps are exascerbated by caffeine and other xenoestrogen-containing agents...so bring on the decaf and phytonutrients!

Anyway, things will be okay...We have eachother to turn to for advice, relating and comfort! Let us know how things are going each step of the way and please take care!

Thanks, Connie! You will also do well because you are Connie!

Hi Kathy, like what Nicky and Pat have said, please do take it easy and stay positive!! Am sure you'll be just fine!! Feel free to come here and ask anything, or just to simply talk it out. This site is a great source of support! Update us about what your neuro says, will be praying for you!

Nicky, I know what you mean by being trapped in a body thats much older. I feel this way too. Lol. Like I always say, I'm 26 trapped in a body thats 80 yrs old. Haha... But cheers to your wanting a healthy lifestyle!! Would say my lifestyle now is probably lots healthier that what it was. Your body will love you for it!