Woah...I just re-read your earlier post and realized that you've had MG for 10-years but weren't diagnosed until a couple of months ago...That's crazy! What were your symptoms during that time?

I've had hand, chest and arm weakness for a number of years before getting my diagnosis too...It wasn't until my speech went down the drain that it could be identified.

With my CT scan, the tumour was identified right away. It was about 5X5X7 cm, and my thymus was hyperplastic as well. The differential was either lymphoma or some other type of tumour, but they were pretty certain it was a thymoma because of the MG.

My tumour was an AB, stage 1. Pretty lucky since I've read that majority of thymomas that start to present with MG tend to be in the second stage by the time the MG shows up, and then require adjuvant radiation. So yeah, there was no question that there was a tumour after my scan.

I have a number of autoantibodies to AchR (for the MG), dsDNA (lupus), thyroid, and prolly other things too (because of the tumour- often, there are antibodies to other parts of the NMJ when there's a tumour). Sorta off-topic, but wanted to include it in case you could use the info.. Are you positive with the blood tests for MG?

The eyebrow thing- I can relate in terms of your description of it seeming like you've had a botox injection. I also haven't had botox, but when I've been extremely weak in the past, it has felt as if my face was paralyzed.

I also wanted to mention that usually I'll have issues with poor eye closure, lip closure. I also couldn't role my lower lip down for the longest time, couldn't fill my cheeks with air, without it all escaping immediately- almost complete facial paralysis-grimacing when actually laughing.

There's a picture I took with a friend just before my surgery, and it looks like I just had plastic surgery. I was so weak that day, I don't even know why I went out. We went to a pow-wow (sp.?), and I got a banick with moose meat- Lord have mercy, it took me an eternity to eat it! lol Note: Don't order game meat when you're having facial paralysis- baaaad idea! lol

Anyway, sorry to have gotten a bit off-topic. I'm not sure what you mean in the last part of your post. Are you referring to the robotic surgery not being covered by NHS?

Ttys!
Nicky

Take what I'm about to say with a grain of salt. I'm no expert, just another MG patient. But I've read a ton on MG and have talked to a lot of others with it.

In my experience, the people with pure bulbar MG, or who have very prominent, mostly bulbar symptoms, who aren't MuSK positive and aren't elderly, have had thymomas. I'm pretty sure that it's because another antibody is at work, one that also tends to be present in elderly folks who develop MG (but don't have a thymoma), but not younger folks who also don't have a thymoma (sorry, kinda confusing).

If you do have a thymoma, I know it seems frightening, but it doesn't have to be as frightening as it seems. Things can fluctuate after the surgery, but not so far from where you are right now, especially since you're already on immunosuppresants. The thymomas are almost always benign.

Based on what I've read about surgery, if you have a thymoma, or it's suspected, I'd just opt for the sternotomy. You want to make sure that it's all out, as they tend to come back if there's any tissue lingering (like any type of cancer).

Rest assured that of all the cancers you can get, as per what my surgeon said, this is the one you'd want if you had a choice. The only trouble the thymoma people with MG have is the MG itself. It's a rough road, but your symptoms are already well-controlled so things should only get better from here, especially after the surgery. In fact, you could get completely better. I have read that that happens.

Ttys!
Nicky

Have you asked to get a copy of the CT scan & MRI reports so that you can read them for yourself. Here in the States we are entitled to get copies of all reports, not sure about UK. Just a thought.

Hi Newmg, If your Dr is willing - I would just want the thymus removed anyway. You never know what may happen later. You may get worse and then find the surgery is harder for you. It may be a hidden cancer as the others have said.

I am reading this thread and am stunned. I HAVE the enlarged thymus but so far it has been IGNORED by 3 DIFFERENT Neuros. I simply do not get it. I have only had the one CT Scan and the GP ordered that one. The Neuros won't even order a repeat scan - perhaps because I do not have severe ocular symptoms and bulbar and respiratory are 'invisible'.

Your Dr sounds good. I would be guided by his ideas.

Hi Xanadu,

Not to confuse matters more, but I got a bit curious when I read in another thread that you also have Addison's disease and I think hypothyroidism?

I googled addison's disease + hyperplastic thymus, and I found some info. saying that anyone who has an adrenalectomy and many with addison's develop a hyperlastic thymus for some reason. Also, people with Grave's disease (which I know is the opposite of hypothyroidism, but still kinda interesting) also often develop a hyperplastic thymus.

I came across this article re. Graves and the thymus. It's by an MG expert here in Ontario (one that I was raving to you about in another thread).

http://cjns.metapress.com/app/home/c...lts,1:300307,1

Anyway, sometimes, at least with the Grave's, symptoms of it can be almost identical to MG. In the above case, when the patient was treated properly for Grave's, the MG-like symptoms disappeared.

It's all so confusing, though. I wonder why the thymus becomes hyperplastic in these conditions without actually causing MG? It's kinda weird...But maybe that's why your hyperplastic thymus isn't being looked at more closely? Has the doctor ever mentioned that it could be enlarged in Addison's? It still seems like you have MG, though, from everything you describe, and it isn't uncommon to have both- in fact, they seem to be connected.

Hi Nicky, That is what I found when I googled too. No one has actually sat down with me and explained all of this but over time ( and googling ) I have started to work out why there may be a delay for me being dx with MG. I do actually have the Graves antibodies as well as the Hashimotos antibodies ( low and high thyroid) but that can happen with 'simple' Hashimotos as well. And they are not terribly high... And my Addisons appears to be more Pituitary than autoimmune... no AD antibodies ever been found - but that is not conclusive either - as they are fairly transient. I seem to be caught in some type of twilight zone !

My mom have cancer (Thymic Carcinoma).diagnosis on 6/15/2011
the Size of tumor:7.2x 5.5cm.

She is 54 years old.Symptoms Findings on 12/2010.continous cough for one and half years.Doctor say this situation cannot take out by surgical.he predict the chemotherapy and radiation treatment will not be good result,So She don't want to cure by chemotherapy and radiation.

I would appreciate on other treatments and experience with this type of cancer naturally. I understand this is a rare type of cancer,
but hopefully can help us become more informed.

Thank very much!
Brian

CT report:

Findings:
Bulky lobulated soft tissue mass over upper mediastinum,showing mild homogeneous enhancement
It measure 7.2 x 5.5cm on largest transaxial plane, and about 6.5cm in height. It lies above
the level of aortic arch immediately posterior to manubrium, which shows some erosion of the
posterior cortex,suggestive of local infiltration.

This upper mediastinal mass encases the brachiocephalic vessels.Bilateral brachiocephalic arteries
remain patent,while bilateral brachiocephalic veins and superior vena cava are occluded.There are
enhanced collateral veins over chest wall and dilated azygous venous system.

There is mass effect with mild compression of the cervical part of trachea.Thyroid gland is unremarkable.

There are multiple enlarged lymph nodes in bilateral supraclavicular fossae,around carina and adjacent to
aortic arch.No enlarged hilar lymph node.Major airways are patent.There is no gross pulmonary mass in both lungs.
No pleural effusion.

Transient arterial triangular enhancement in left lobe of liver,which becomes homogeneous with rest of liver in
portovenous phase,suggestive of shunting.Adrenal glands are not enlarged.

Imprssion:
Bulky upper mediastinal mass obstructing bilateral brachiocephalic veins and SVC,Features are suggestive of lymphoma.
Biopsy helpful to confirm diagnosis.Other differential diagnoses such as thymoma is less likely.

Brian,
Would love to know if you can see the mass on your mother from the outside?

Hi, newmg,
As with our experience with my daughter's MG,seems like there is no certain way to differ Hyperplasia from Thymoma,based on CT results,or....even right away after surgery: the surgeon and chief oncologist were sure (or that's what they said...),my daughter had thymoma, and insisted on the surgery (transternal),she did not have signs of MG at that time,except of constant cough for 2 months,which Drs dismissed as MG simptoms.
I don't want to go to all details,she did start having MG simptoms,she did have surgery,complications, it was long way to recovery ( from surgery), but when, after surgery,I asked the surgeon,during his round visit,what was it in " Pathology report" ,he asked his assistant ,and the assistant read : thymic hyperplasia. I saw him to be REALLY confused,he said : Could not be! I am sure I was removing Thymoma!
....Well,then came another report: thymoma of rare kind,no comparison possible....I do not believe in that ,I do not believe them.
We still don't know,what was it...I just know, IMO,if its possible,go with less invasive
procedure,to avoid complications,as MG is hard thing to deal with anyway.
Best of luck.
Marina.

Hello!! I am new 2 this site and was hoping 2 get any info. on a sternotomy. I am really scared and nervous. I would appreciate any info. on ur experience with this surgery. Hope 2 hear from some one soon!!!


Thank-you!!