Thanks for all of the great advice. I don't know what just happened to the post I just typed up, but let me try again. I have never heard of a heart pillow, but I already have a BedLounger pillow with arms, so I'll be able to sleep sitting up with it. How long does it usually take before you can drive a car again? I have a 4 year old daughter, 6 month old daughter, and my wife of 17 years. I usually take my kids to and from daycare, so I've been concerned when I'll be able to lift the baby again. Here is my story...I've been in the Marine Corps for 21.5 years and first developed MG in 2000. I'd always been given prednisone, and I would gain 20 pounds from it, then spend the rest of the year trying to get my weight back to Marine Corps standards. I'm 6'2" and 235lbs. I last took prednisone in July and in late August, early September, my symptoms came back worse than ever. Usually I would only have two mild bouts of MG per year, but its is more frequent now. This time I'm having severe muscle weakness and constant double vision. I can barely work, walk, do housework, lift the baby, play with kids, everything is rough. I'm taking 60mg mestinon, 2-3 at a time every 2 to 4 hours. Its like taking baby tylenol for me--not doing a darn thing. I have a new neuro now and he recommends the partial sternotomy versus going in through the neck. My wife is really concerned about my recovery and the scarring.

Yout doc will know about the heart pillow. Trust us, you'll want it. Without it coughing is just too painful!

I do know exactly what you are going through. For a while there, a gallon of milk was too heavy for me. It was awful!!!!

I think my doc told me I had to wait 6 weeks before drving again. You never know how quickly YOU'LL recover - it may only be a couple of weeks
before you are able to drive!

Don't try and lift the baby. You may drop her. I'm not trying to be a downer, but you have to rest as much as possible until your meds are worked out and you have your thymectomy.I learned that the hard way.

I know other people HATE steroids, but I love them! Granted, I am a lot heavier than I was, but I can do things now, so for me, they are great!

I am taking 20 mgs a day + 3-5 60 mg mestinon + the "big boy" 180 at night. Today I've only needed 2 thus far and feel like climbing a mountain!

The double vision is awful I know, but hopefully you'll be out and about like you were before MG.

My scar is almost gone! I'd take a pic, but I don' think anyone wants to see it (it is on my breastbone). In fact, one of my docs thought that I had it for a while, but I had surgery in April.

Why aren't you on steroids all the time? I don't get that! Granted they will make you gain weight, but they do make all of the difference in the world...... Have you had IV IG yet? Plasmaphoresis? I've had them both, and much perfer the IV IG! Granted, I am truly afraid of needles and the thought of one in my jugular was just too much for me to handle, but I did it anyway b/c my neuro told me I needed to.

My neuro called to check up on me today and was so wonderful! I am so blessed to have such a wonderful caring dr. He told me "baby, this is as good as it gets" and I should relax and enjoy my trip to Jamaica this weekend. I told him I'd been @ work decorating my home for the holidays and he just laughed and laughed! Usually he tells me to take it easy, but he knows how great I feel after my last round of IV IG and told me to enjoy it!!!

IV IG doesn't always agree with everyone, so you may want to ask your doc about it. For me, it has been GREAT (minus the PICC lines), but others haven;t been quite so lucky! Most of us feel AMAZING after it for months! It is definitely worth looking in to.

Gotta finish up my home! Happy Holidays! I look forward to hearing again from you!

Hang in there!
Erin

Well my 2 cents on this one....

I had just turned 30 when I had the FULL sternotomy. I would definitely and highly recommend it, and this is why. Turned out that I had a Stage 4 malignant Thymoma. It had invaded a very large area in my chest. They had to remove my entire heart sac. They cut a large part of my lung out and also had to take my diaphram out and poke around to get the rest of the tumor bits. If they had gone in any other way, they may not have discovered the extent of the tumor growth.

I went through Chemo that year....and again 6 years later. And no - still not out of the woods. These thymoma's are stubborn things (Would figure since I'm so damn stubborn it would be too).

Do NOT worry about the scar and please don't let your wife either! It really is a small price to pay for health. Now remember that at the time I was a 30 year old female and had a healthy set of cleavage as well, so it was hard at first to have the scar, but now I sure wear it proudly and call it my badge of honor.

I too was also told to take 6 weeks before driving or lifting anything that weighed more than 10 pounds (but since our sizes are different - the doctor may let you get away with more weight). But really, you need to let it HEAL. If you do too much too soon - you may risk the stitches slipping and can develop a 'click' when you walk because they don't line up. At which point you either live with it, or have more surgery (so just take it easy and alleviate that point all together).

Great idea for the chair - sleeping was a bugger for the first while. I ended up getting one of those slanted triangle pillows that seniors use (don't know the name of it), but it kept my head and shoulders slightly elevated during the night.

Remember - don't be a martyr - TAKE THE PAINKILLERS!!!



Lydia

The heart pillow is much smaller (mine is about 18" square) but you'll like the bedlounger for sleeping sitting up while recovering.

I was not allowed to drive for 6 weeks because the car door is more than the allowed weight you can move. There is also the concern of an air bag going off and hitting you in the chest while the bone is still knitting. I was told to keep the heart pillow clutched whenever in the car for the full 6 weeks of recovery.

Recovery for me was quite tough on my 10 year old daughter. Fortunately, she was old enough to understand what was going on. A lot of our habits had to change quite quickly. I used to carry her from my and my wife's bed into hers at night, this had to change to waking her up and walking her to her own bed. It will be tough on very little ones I expect.

I've read stories of people who opted for the less invasive thymectomy - with the cuts at the base of the neck or between the ribs - it seems to have a high rate of recurrence. They have to go back in for the procedure again to get missed thymus material. I don't have any idea what the stats are on this but it may be what is concerning your neuro. Or there may be something else going on with your thymus (thymoma, enlarged, etc)... I'd probably ask him why he is recommending the more invasive procedure and discuss with both your neuro and the surgeon will be performing it.

Oh yeah! I just remembered another piece of advice for the surgery - make sure that the anesthesiologist knows you have MG. I went in for a procedure before I was properly diagnosed and the experience going under was most unpleasant. There is a timing issue with when they put the muscle relaxants into you compared to when they knock you out, you want to be out before the muscle relaxants kick in or it feels like you are drowning. When I went in for my sternotomy we knew and made the anesthesiologist aware, everything was cool that time going under.

The scarring from the sternotomy is nothing to be concerned about. It is just a straight line down the middle of your chest and possibly two small pocks where they'll have chest tubes in. Mine has faded to light pink already (had mine in May) and is starting to turn white at the edges.

Good luck!

Brian.

I also had the thymectomy. I had it last year and have not yet began to reep its benefits. After my first IVIG treatment at the Durham VA medical center, my MG went into remission and stayed that way until 2009. This is my first attempt at reaching out to other with my illness for treatment advice. I just want to live a somewhat normal life. Before I read a lot of the post, i thought I was the only one in the world with this illness. I was once active and now everyday i try to muster enough strength to go to work. If anyone has any advice, please share. Thanks. Forever Blessed.

Just wanted to welcome you to the forum - there are so many awesome people here! You are going to love it!

I was scared until I found this site and all of the wonderful people on it - trust me - if you decide to join you will have one HECK of a support system!

IT WILL GET BETTER!

Erin

Been away from this site for a spell, like those have said many times this disease is a roller coaster ride so I have enjoyed the good days and rode out the bad ones!
My Neuro has suggested 3 or 4 times to consider a thymectomy - I have no tumor nor enlargement - but his view is many have amazing results. I am 55 and still working, have been able to get by on 3x60 mestinons a day - but of late I have had more trouble than I would like.
So, I see several reply's to the OP but most that have had it done have not really shared the results?
So, how about hearing some comments to help make a decision? From what I can tell its just a roll of the dice?
Great site and nice to have "friends" that can relate!
Randy

I had great results, but I had a thymoma that needed to be removed too. As I understand the roll of the dice is all down to whether or not the thymus is hyperplastic (supposedly this can be determined by an MRI.)

Much appreciated Brennan,
I found a website called CTSNET - the results were pretty promising and it really detailed the surgery...
I have bad discs in my low and middle back and base of neck that give me fits - my theory is the muscle weakness from MG is making the discs even worse by allowing my frame to put more pressure on them. So, I have to decide do I risk surgery for say my neck which is worst or go for the thymectomy and hope the muscle strength improves a lot and I may not need that surgery as well!
Unfortunately pinched nerves from herniated discs can also cause muscle weakness or impairment that may mimic some of the MG symptoms. Kinda the chicken or the egg delima!