Thymectomy at Walter Reed...advise???
 

I am scheduled for a Thymectomy on the 5th of December at Walter Reed Army Hospital. Does anyone have any advise??? Or things I should before and after the procedure. Background: I first diagnosed with generalized MG in 2000 and was able to control it with meds and when into remission for several years. Over the past three years my out breaks increased in frequency. Well after returning home from my last deployment my MG became uncontrollable with medication and finally I decided on the thymectomy.

Do you know how your surgeon plans to perform the thymectomy? There're 4 general approaches that I'm aware of ( http://www.umm.edu/mg/surgery.htm ) and any advice provided would be different depending on how they perform the procedure...

Hello!
 

Hello and welcome! You will love this site! Everyone here has been so amazing and supportive!:D

I am 34 yrs old and had my thymectomy done 1 month after I was diagnosed. It was a transsternal thymectomy b/c there were hundreds of "spots" on my lungs and they needed a biopsy to rule out cancer, etc.

I won't lie to you. It really hurt. Really, really hurt. My thymus was not abnormal @ all - if anything, it was really small - no thymoma @ all, but I was told by all of my docs that this was the last best chance @ regaining my formal life, so I did it!:D

A girl in my support group here in SA had hers done and has been in remission ever since - 11 years and counting! I have not been quite so lucky, but am still glad I did everything humanly possible to help myself.........

I still take meds every day (20+ pills) and need IV IG every 3-4 months, but the QUALITY of my life has gone through the roof! :D

I am now able to work most days and have been decorating my home for the holidays.

I don't know if this helped @ all, but am wishing you all the best and would love to hear from you when you have some time!!!

Erin

Thymectomy at Walter Reed...
 

Sorry forgot to mention the approach. Partial Sternotomy and Full if he sees or suspected thymoma.

Sorry about all of the type O's. I have my eye-patch on now. LOL. :) Thanks all.

When you have some time..........
 

Hello again!

When you have some time and the inclination, I'd love to hear your story.

As you know, we all have different symptoms, problems, etc. and I would love to hear what's been going on with you!!!!

Hang in there and take care!!!

Have a wonderful Thanksgiving!

Erin

Best advice I can give you is:

Get any heavy lifting you need to do for the next few months done now.

I had full sternotomy (I had a 9cm/3.5" thymoma) in May. I was not allowed to lift/pull/push anything greater than 5lbs for 6 weeks and then was allowed to gradually increase weight. A car door is too heavy, you'll need someone to open the door for you (I cheated after the first week and just used my feet/legs for moving the door). Mall doors are too heavy, you'll need to use the auto-open or have someone open the door for you. Partial sternotomy may have less stringent rules with respect to weight limits etc.

They will probably provide you with a heart pillow (open heart surgery is done through full sternotomy too) - always keep that within easy reach. You will cough. If you don't have the pillow to hug and stabilize your sternum it will hurt.

Did you have any specific questions?

Cheers,

Brian

Amen to that!
 

Brian is right on! You will not be able to lift anything for a good long while!

THe pain is awful, but it does go away in time.......right after my surgery, I was going through 6-7 pain pills a DAY - a DAY - for a few weeks and even asked to have another x ray to make sure I was OK. My surgeon was great, but he did set my chest a little "off" so it does hurt a little sometimes.

You will really need that pillow! I slept in an upright position for 3 months after my surgery and still do from time to time. Hold that little pillow to your chest all the time and you will feel better very soon............:D

You will really need to rest and the hospital will want you to cough to make sure you are able to get any phlegm up (to avoid pneumonia) and they will amke you do breathing exercises 4-5 times a day, plus you will get shots in your tummy to insure you don;t get any blood clots. Any shortness of breath needs to be reported immediately!!!!!!

The chest tubes do "sting" a bit when they are removed and you may be intubated just to make sure you can breathe and you may have IV IG b/4 your surgery - kind of a make ready.................

Hang in there! People have gone into remission after they have their thymuses removed. I pray you are one of them!

Erin

Take care!
Erin

Hi and welcome,

yep I also agree with what Brian said. I think the only thing I can add is keep up the pain killers. My nurses told me to keep up paracetamol for a couple of weeks, which I did, I tried to stop it after a couple of days, but the pain started again. They certainly helped keep the pain at bay, not stop it completely tho. Hope this helps a little, and if you think of any specific questions I'm sure one of us can help
take care
redtail

Thanks for all of the good information. I didn't know about the heart pillow. I already have a BedLounger pillow with arms so I'll be able to sleep sitting up. Here is my story....I've been in the Marine Corps for 21.5 years, and I first developed MG back in 2000. Previously, each time I would have a bout with it, I've been given prednisone, gain 20 pounds, then spend the rest of the year trying to get back to the Marine Corps weight standards for my height. The last time I've been on prednisone was this summer, and I stopped taking it in July. In late August, early September, I began having symptoms again, this time worse than ever, with really bad muscle weakness and double vision constantly. I got a new neuro and I've been given mestinon. I'm having to take anywhere between 2-4 60mg pills every 2 to 3 hours. I'm 6'2" and 235lbs. The mestinon is having the results of baby tylenol for me--its not doing a darn thing. And I have a 4 year old daughter and 6 month old daughter, plus my wife of 17 years. I am worried about how I'll be able to take care of my daughters after the surgery, especially the baby, because I usually take her to and from daycare each day. How long do you guys think it will be before I can drive a car again? My wife is concerned about my healing from the sternotomy, she has been reading about the approach through the neck, but my neuro does not want to do it that way.

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.

Hello again!
 

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.:D

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......:D 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!
:hug:Erin:hug:

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!!!

:wink:

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.

My Myasthenia Gravis
 

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.

HI Armyboy!
 

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!:hug:

IT WILL GET BETTER!

Erin:hug:

Results?
 

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! :rolleyes: