[Wynternight]

Hello all, new poster/reader here. My fiancee has MG (she was diagnosed about three years ago); in the three months we've really been together I've seen her go into two excacberations (second one is going on now) and have been doing a lot of research on MG and treatment options. I'm very interested in the Transcervical Thymectomy and was wondering if anyone here has had it and can offer some firsthand accounts. I'm trying to get her to look into it but she has no interest in another scar on her boday (she has scars from feeding tubes from her worst MG crisis), other medical and non-medical scars. The info I've read says the surgery averages about 104 minutes with a post-op stay of a little over one day. Is this accurate? How is the pain/recovery period, the scar (her worry) and most importantly, the symptom relief (better Osserman scores) and/or remission?

Thank you all for any info you can provide.

ps. She's 40, 41 in a week.

[suev]

Welcome!

Sorry to hear about what your fiancee and you are going through.

There are many folks in the forum that have had the procedure - and I am sure over the course of the next few days they will share their experiences.

[tysondouglass]

Hello Wynternight-
104 minutes with a post-op stay of a little over one day. Is this accurate? How is the pain/recovery period, the scar (her worry) and most importantly, the symptom relief (better Osserman scores) and/or remission?

I have had the scar ridden thymectomy As have many people on this forum, im bored today and have not much to do as Im receiving IVIG so ill be happy to share what I can.

When I went in for my surgery it took about 2-3 hours, some are shorter, some are longer depending on the ability to get in, get out, stich up, etc. Something CAN go wrong, its a major surgery so make sure you relay that...but it is much safer these days- you can also do the robotic surgery.

My post op was a little longer than a day I was in the ICU for 2 days, then in step down ICU for 1 week because my right lung collapsed, for no apparent reason. Though many people these days with no complications are getting out of the hospital within 3 days (I think)

The pain- is nothing she/you need to worry about- they take care of you in that aspect, very well. They give you adequete medication for you to be comfortable. A morphine pump will be provided the day of/after surgery and until they think you dont need it, or you say your done. You cant go home with the morphine so they will give you Hydro/oxy-codone. This stuff works pretty well, too. She should have no problem with pain.

I had strained muscles in my shoulder from having my ribs pulled back a little too far and that hurt more than the actual sternam part.


The scar- eh, its a scar- its a battle wound. I know its probably different for girls who have the scar, but you should be proud of it, if you have it just because it shows yours ability to fight!

On the topic of remission...hm. After surgery, my MG got much worse, and I was hospitalized, yet hopefully your fiance (having already gone through these exacterbations and such) will not experience this. As with most things, you get worse before better. I have not been hospitalized in 6 months, and am on 50mg of prednisone and 250mg of Imuran, and monthly IVIG infusions.


I hope this helps, and feel free to ask any questions you may still have.

-Tyson

[Marin826]

Hello and welcome!
If Drs who treat you fiancee,suspect that she has thymoma (thymus tumor with 5% chance of malignancy),then,in my opinion,you can consider transcervical.If not ( CT scan is the test which can show that),then, again ,in my opinion,you can choose ,I think it's VAT ( video assisted surgery),which is less invasive and better in terms of scars and post-op recovery (I do have firsthand experience with my 24 yo daughter,who did have transcervical..).
Some people outhere chose not to have their thymus removed ( and they have their own reason).What her Drs recommend?
Best of luck to you both.
M.

[brandonc]

I just had the VAT surgery on the 4th of Feb and im just about done with the pain and everything. I go back to the hospital tomorrow to get the stitches out of where the lung tubes were. All of the other cuts, which are quite small, were actually filled by medical glue instead of stitches. I obviously cant tell you anything about remission but Im still feeling awesome from the IVIG they gave me the week before my surgery, which is pretty common practice from what I understand. I spent 4 days total in the hospital. They gave me an epidural, a delauded pump (morphine doesnt help me) and im just about through with the Norco prescriptions (pumped up vicoden)...the pain part isnt a humongous deal while youre in the hospital because they take care of that really well while ur in the bed...the norco while youre out is another story, but that really depends on your doctor, with mine its like pulling teeth to get him to write a prescription, like im some kinda drug dealer standing on the corner selling vicoden 16 days after surgery. As for the time on the operating table....mine was 7 hours and change, but that is very rare for this kind of thing, my thymus was in there in an awkward position from what i heard from the doctors. you said her biggest problem was the scar....the VAT surgery has less noticeable scars but there are 6 of them, 3 of which are so small that im pretty sure once they heal, they wont be scars. so the cut from where the scope goes in and the two cuts where the lung tubes come out (mine where in for 2 days). If you have any other questions plz let me know I am way more than happy to give someone information that might help.

[pjlla]

I did the transcervical thymectomy about 9 years ago at Mass General. I don;t know how long the operation lasted, 2 hours sounds about right. I spend one night at the hospital and was sent home. I was walking the same night. Overall the pain was bearable. As a similar poster said, their were no stitches they used superglue or something like that and bandages that were hard at first then after a week they softened and I peeled them off. They did give me a prescription for some kind of pain medicine, but I did OK without any pain medicine when I got home, but did use some tylenol. My neck hurt a bit and the ride home hitting the Potholes in Boston area did hurt, but overall pain was fine. I do have about a 3 to 4 inch scar, but it's so low on my neck that it really isn't that noticable and as time has passed the scar is less noticable. Overall I am much improved from before I had the surgery. I do still have ocular MG and I still take cellcept and occasionally take IVIG. Good luck for your fiancee.

[Marin826]

I wanted to edit my post next day,but it won't let me.
I meant ,with thymoma- sternotomy is recommended ( not transcervical,which is " via your neck",when it's only gyperplasia ot just normal size thymus present). Sternotomy, most hard one- that what my daughter had.....Turned out ,it was gyperplasia...More tests,more opinions, more research- that could help you to decide which way to go.

[Wynternight]

Hello all and thank you for the responses.

Scarring and post-op recovery are definitely the big factors for her; if they tell her they can only go through the sternum then there's no way she'll do it. Transcervical is the only possible way I can even think she'll consider and that's a big if.