Hi Kimber,

I could be wrong but I think they still use chest tubes for drainage. Just visited a friend in the hospital after his quadruple bypass 3 weeks ago, he had chest tubes for drainage. I also had a chest tube after my thymectomy 11 months ago. I had mine done by Da Vince Robot through the ribs. EASY recovery!!! The chest tube was a nuisance for about 24 hours, not that big of a deal!!

There is another thread started recently that sero-negative vs. sero-positive was discussed and I thought many thought thymectomy was not as effective for people who are sero-negative??? I am NOT an expert, but read as much as possible and ask lots of questions. I am sero-positive and have no regrets! It has definitely helped!

Robin

Kimber,
I am seronegative and had a partial sternotomy thymectomy when I was 45 years old, a year and a half ago. I had two chest tubes and the recovery was pretty long. My job involves being able to lift and I was restricted to lifting 5lbs for three months. It took about 6 weeks to start feeling more like myself again, a month before I stopped taking pain meds around the clock. My surgeon was most comfortable with the open procedure. There are several on this forum who have had the robotic procedure and are very happy with it. It's definitely worth looking into.
I still have symptoms and started cellcept almost 6 months ago since my symptoms continue to progress. I don't regret the thymectomy because I knew I had to do whatever I could to try to get better. If I hadn't had the thymectomy I would be second guessing myself every day.
As far as thymectomy not helping seronegative MG, we know there are antibodies that just haven't been identified. They are being produced either by the thymus or the bone marrow. So, just like seropositive MG, seronegative MG is caused by antibodies and there is a chance the thymus is the culprit.
Cathi

Hi Kimber, I had the partial sternotomy thymectomy done a year ago at 37. I had 2 chest tubes for drainage and recovery was long, I happened to get a blood clot, etc. but in general you aren't able to lift anything 'heavier than a milk carton' for 6-8 weeks. You're also not supposed to use/put pressure on your arms (can't lift yourself out of bed or a chair using your arms becuase you need the chest wall to heal properly). I had a large thymoma (8 cm) so I didn't have a choice to go with the Robot method.

As for sero-negative v sero-positive, In my situation, my thymoma was found during a routine xray for a non-related medical procedure. I was tested for myasthenia and was told I didn't have it (I had no symptoms so I thought that was that). Almost a year to the day of my thymectomy, I started having double vision. I had blood tests done again and they showed i was positive for the antibodies.

So, in my case, my thymectomy (when I guess I was seronegative) didn't put me in remission - I actually had my first symptoms after it....however, my neurologist seems to think that because I had my thymectomy, my chances for remission will be greater.

Anyway, the sternotomy thymectomy isn't easy, but if I (who can barely get blood drawn!) got through it - you will too. If I hadn't had the thymoma and just needed to remove the thymus, I might have given greater consideration to the robotic approach. the scar is smaller and recovery seems much quicker....but your doctor is obviously recommending the sternotomy approach for a reason.

Good luck,
Michelle

There is nothing that I have seen that concludes a thymectomy would be beneficial for seronegative.

Kimber,

In addition, and in my opinion:

Honestly, I am actually surprised your neuro is recommending this, and I would approach this with great caution. In fact, since you are scared, why put yourself through this? Aren't there other treatment options available for you? Choices given? Obviously I am no neurologist, but it is your body. I can also provide links as to why ANYONE may not want to get a thymectomy(aside from thymoma, which is a must), let alone seronegatives. It may be possible to create other problems later down the road, and it is also known the body can create antibodies from other parts of the immune system etc. In other words, it is controversial to say the very least.

Best wishes for peace,

TJ

I had a thymectomy done by da Vinci Robot (like katiekat) on 11/11/11. I also had only one 24 hour chest tube that was pretty small. My surgeon, Dr. Miquel Gomez in Houston, Texas, has done over 100 thymectomies and told me he uses the "small chest tube" whatever that is. It was not the funnest part of the procedure, but once it was out it left a very small scar. I would refer anyone to him... he is WONDERFUL!
I am also seronegative. I hope to have great remission stories to tell in the future... still waiting though. What they believed to be a "moderately enlarged thymus" turned out to be a very rare type of thymoma.
What does your CT show about your thymus?

Kimber -

The only reason docs recommend trans-sternal thymectomy is they don't believe the DaVinci is capable of removing all thymus tissue. If you went to a different neuro, you might get a different answer. THERE IS NO OTHER REASON for this recommendation. Keep this point squarely in mind while you investigate the DaVinci method and before you decide which - if any - route to take. Don't forget, your insurance company might pay for a second opinion to a neuro who likes the robot!

Good points from Becca also in that of a hyperplasia, and what Cathi said about removing any doubt. What does your CT scan show?

CT scan what appears to be an enlarged thymus. No evidence of thymoma.
And he did say he doesn't believe laparoscopic gets all of the thymus.

I appreciate all of the input. He wants me to get stronger so we at least have a few months before this decision pops up again.
Kimber

Hi Kimber

I am also seronegative and struggling with the same questions with neuro recommending thymectomy when I have no evidence of thymus. I am strongly considering because even though tissue can't be seen on CT - there are still remnants of thymus and I am hoping some of that tissue is abnormal. While it is a big procedure - to be the potential benefits outweigh the risks because this is the only potential way for a true cure and to get off all of this crappy medicine! I am young and otherwise healthy and might as well go for it. (seems from the literature that younger people have the greatest chance of having a thymectomy work..) I also have been advised to get stronger first.

As for which way to do the procedure - I will probably choose a sternotomy procedure. The thymus is surrounded by a capsule and unfortunately the capsule is made of very fatty material that is amorphous and not easily removed. In the oncology world (which is not what you and I are dealing with) we recommend sternotomy because it is very difficult to take out this capsule otherwise. So for my patients I recommend open procedure. In the case of MG - there is likely little benefit gained from the sternotomy procedure. Lots of if's right? If there is tissue causing the problem...and if there is tissue left behind by the type of surgery done. So - the davinci is probably more than sufficient. You just have to decide which procedure will you mentally be comfortable with. For me - it seems mentally I will be better off knowing I went for the whole thing! I think it is a personal choice because there is probably little difference.

Clear as mud right!

I can understand wanting a remission...Who doesn't? momsoftired suggests "the potential benefits outweigh the risks because this is the only potential way for a true cure and to get off all of this crappy medicine!" A true cure? Who says that? Where did that come from? There is no cure for MG...(thymectomy "might" help us get a remission, and remission might come with or without a thymectomy-sorry) Even if antibody positive we know there can be other antibodies created by the system for MG problems after thymus removal. People with the stories about not all the thymus out and some cells remain and such and etc etc. Not to mention some other potential problems removal of a thymus could cause down the road even IF it were to help MG....

This is a very controversial subject and certainly not a guarantee of anything.

Being seronegative especially and having a doctor stating a thymectomy should bring a higher chance of remission is not right in my opinion, I don't know where this stuff comes from. I would like to see it so I know and can forget about it. What is reported as it relates to sero negatives for positive results via thymectomy is scarce me thinks. Of course with a thymoma one would have to and guaranteed Hyperplasia might want to be considered. I have heard the horror stories about them being much bigger than initially thought also. If you have one, make sure whatever you do, to get all of it and the tissue I guess. Hey, it "might" help us....negative, positive....crazy like me? lol

Sorry to be such a bugaboo, but this is how I see it. Especially if one is negative in blood testing, We all have tough decisions, and I respect peoples decisions and I will support peoples decisions here. I just don't have to believe that the decisions people make are always the right ones. Having said all that, we are all different, and believe different. The logic and results of proof must exist for me to believe most things...

Many people live by the motto, "if you hear it enough, it must be true"

Not me.

Believe only half of what you see and nothing that you hear.
Edgar Allan Poe

PEACE

TJ

I've been diggin around. Maybe here is something to support thymectomy for seronegative?

"The response to thymectomy was similar between the two groups. It has been suggested that seronegative patients have a better prognosis, but our results show no differences."

3 out of 14 went into remission after three years time:

http://onlinelibrary.wiley.com/doi/10.1034/j.1600-0404.2003.00209.x/abstract

Thanks T.J.
3 out of 14? YEAH! With the odds I've been beating lately I am VERY excited! ;) LOL

Kimber,
My oncologist gave me a "99 percent chance they got it all" (With the robotic method) and a "Next to 0 percent chance it will come back". I would like to believe what he says on this. He took my case before the board of surgeons in Utah and they all agreed and suggested another CT 6 months following the surgery (which will be in May) and then yearly after that ... just to be sure. I would think that if the robotic method was not efficient in removing all of the thymus a bunch of surgeons would have jumped at the opportunity to work with my case. (My surgeon is not on this board)

Only 4 percent of thymomas present the way mine did, so I am not saying get ALL "enlarged" ones out... but it is another consideration.

Remission is the goal... but not having my thymoma come back will be priceless.

Found an interesting article regarding thymectomies.

Eur J Cardiothorac Surg. 2010 May;37(5):1137-43. Epub 2010 Feb 8.

Comparison of complete remission rates after 5 year follow-up of three different techniques of thymectomy for myasthenia gravis.
Zielinski M, Hauer L, Hauer J, Pankowski J, Nabialek T, Szlubowski A.
SourceDepartment of Thoracic Surgery, Pulmonary Hospital, Ul. Gadkie 1, 34 500, Zakopane, Poland. marcinz@mp.pl

Abstract
OBJECTIVE: This study aims to analyse the effectiveness of treatment of myasthenia gravis with three different techniques of thymectomy.

METHODS: Results of complete remission rates after 5-year follow-up of 60 patients who underwent basic transsternal thymectomies (group A) from 1 January 1996 to 31 December 1997, 75 patients who underwent extended transsternal thymectomies (group B) from 1 January 1998 to 30 June 2000 and 291 patients who underwent transcervical-subxiphoid-videothoracoscopic 'maximal' thymectomy (group C) from 1 September 2000 to 31 January 2009 were compared.

RESULTS: There were no differences between groups according to patient's characteristics and postoperative complications' rate. Ectopic foci of the thymic tissue were discovered in the fat of the neck and the mediastinum in 53.9% of patients from the group B and in 65.9% patients from the group C. After 1, 2, 3, 4 and 5 years of follow-up, complete remission rates were 8.3%, 11.7%, 15.0%, 16.7% and 20.0%, respectively, in group A; 26.7%, 38.7%, 42.7%, 46.7% and 50.7%, respectively, in group B; and 31.5%, 39%, 45.8%, 46.3% and 53.1%, respectively, in group C. The differences between group A and the groups B and C after 1, 2, 3, 4 and 5 years were statistically significant. There were no significant differences between groups B and C.

CONCLUSIONS: (1) The results of complete remission rates after 5-year follow-up were statistically better in patients with myasthenia gravis (MG), who were operated on with extended transsternal thymectomy and transcervical-subxiphoid-videothoracoscopic 'maximal' thymectomy than the patients who underwent basic transsternal thymectomy. (2) The difference can be explained by the removal of ectopic foci of the thymic tissue from the neck and the mediastinum in these patients.

Thymic hyperplasia stands a chance of eventually turning into thymoma and CT scans don't always pick up a thymoma or the full size of the thymus. If you kept your thymus, you would need to continue having scans to make sure a thymoma has not formed (even years and years down the road). This may be the reason your neuro is recommending the thymectomy and suggests a sternotomy.
I had a thymoma and had a partial sternotomy. Honestly had I known what I know now about thymoma, I would have insisted on a full sternotomy.
A thoracic surgeon will be performing your surgery and will discuss what kind of surgery would be best for you. Anyone having a thymectomy needs to make sure their surgeon has much experience with this type of surgery.
There is research out their showing thymectomy can be helpful with seronegative MG.
Good luck with whatever you decide. Glad you have some time to make the best decision for you.
hugs,
sherry