APS, Thymoma and MG-posted in Intro to

[carriestreet]

Reposted, thought it was more relevant here:)
Hello, I am Carrie and I was just recently diagnosed with MG. Prior to my diagnosis I have suffered with APS (antiphospholipid Antibody Syndrome). In the past year I have suffered 4 TIA's, a blood clot in my ARM, Jugular Vein and in my Kidneys all from the APS. I thought that was the root to all of my weakness and and other symptoms. In August I landed in the hospital with chest pain, shortness of breath and extreme hoarseness in my voice. It was then that they told me that I had a Thymoma and might have APS. It took 8 weeks of not having a voice and extreme weakness to get a diagnosis and to be placed on Mestinon. I was told on Tuesday that I was probably in a Myasthenic Crisis. My Myasthenia is effecting my legs, arms, eyes, and my larynx.
My question is, does any body else have a complication with MG such as APS or an other blood clotting disorder? I was told that I will need to have Trans-sternal surgery to remove my thymoma but because of my blood clots I am at a more the 50% chance of having a life-threatening heart-attack or stroke from the surgery. I was going to U of M Hospital and then was refered to Mayo Clinic because of how complicated I am, insurance doesn't cover it all so I went to another hospital who then refered me to Mayo again. I told them my insurance didn't cover me there so they are sending me back to U of M Hospital. I feel like a ping pong ball. Nobody wants to treat me.
Oh, by the way, I am the ripe age of 29 and have two children 2.5 year old girl and a 5 year old boy.

[rumpled]

Sorry to hear of your issues... can you please explain what is APS?
While I have been through wringer... it was for another disease and now I am doing it again to see if I have a neuro disease so agree, it is not fun. I have some sort of platelelet disorder that does not have a name and only happens when it wants to.
I have had many surgeries and when they know you are at risk, they do try to do everything to help you but yes, try not to have you at their hospital (numbers game more). Be sure to meet with anesthesia before the day of the surgery as well as the hematologiest and find out what they want to do to control you so you are assured. As well, watch your diet before you surgery as some foods are natural blood thinners - even things like garlic.

[carriestreet]

Thank you for the reply. I read your thread and you weren't kidding about the ringer. APS is an auto-immune disease where I make antibodies that attack the membranes of my healthy red blood cells causing them to stick together and clot, basically. It also causes vertigo, migraines, heart attack, stroke, blindness, Pulmonary Embolism, DVT, gange green, limb loss, and organ failure.
My risk isn't from bleeding during the surgery, it is because they have to take me off of my twice daily injections of Lovenox (blood thinner shots) and aspirin and they are affraid with the open chest surgery and with me being off of them for a couple of days that I will have a major event. In July I landed in the hospital with a blood clot in my Jugular vein even when I was already giving myself shots. I was transfered to a large hospital and they told my husband if the blood clot dislodged I would die instantly. I was asymptomatic from my APS, except for my miscarriages--3 of them, until a year ago. I have now had 16 different procedures in my life that required me to be put under. But none since I got really sick. They also found that I have an AVM in my lung which should be repaired but they don't want to do surgery for that either. An AVM is somewhere in my lung I have an artery and a vein that connect directly instead of through capillaries. This is very dangerous for me because my clots that I get in my viens have a direct path to my arteries and cause me to get TIAs and eventually a full stroke. Normally you only get strokes from clots in the arteries in your neck, where I can have a stroke from any clot that I get.
I have a whole board of specialist that are currently working on my case. Two thoracic surgereons, anesthesiologist, hemetologist, caridiologist, oncologist, radiologist, neurologist, and a pulmonologist. I think that is everybody in the meeting. Anyway, it was deemed I need to be seen by a larger hospital that specialized in both MG and APS.
Sorry about being so wordy, I talk a lot:-)

[GUMBY]

Hi,
I am sorry, you have been through a lot. I just wanted to wish you the best. We did have someone hear before with APS. Ro, I hope you read this. I think Sheila had this also. I just wanted to say sometimes, when a case cannot be handled by certain centers, it can be appealed by your doctors, to have your care rendered by certain centers. Don't quote me but I think that can be done. It sounds like you need top notch doctors who are experts in their fields. It may be a bit of a battle but if the docs at U of M are saying they can't handle you, well that is what they are saying. They then should be helping you out to get top notch care. I would not want to be in a situation where you cannot be handled. Myasthenia can be hard enough to handle, you need the best. Also Dr. Drachman at Johns Hopkins is one of the top notch in M.G. Another possibility maybe. I am sure others will join in here to help you out. I can only imagine you have a lot to think about and a young family. I wish you the best. Keep us posted. Just make sure you are in the best hands and seek opinions on your options.

[carriestreet]

Thanks Gumby, I do hope that I meet others with the same complications. Perhaps I can see if Dr Grachman at John Hopkins takes my insurance. Thank you.

[Ro from Vermont]

Sheila was member of an old board and thru the joys of the internet; now a very dear friend.

She was diagnosed with the APS while going thru testing for lupus, I think.
She gets IVIG for her MG, but because she uses Luvenox (sp?); Sheila goes thru this whole anticoag protocol before she can have her infusion every 6 weeks.

I know she has a message board for DVT through MSN. I'll post the link, but if it violates terms of service and disappears, then just PM me.


http://groups.msn.com/BloodClotSurvivorsDVTPE/_whatsnew.msnw

[carriestreet]

Thank you so much. I also take Lovenox injections twice daily.

[rumpled]

Ah... I actually know another person who had that or something like it as well (another cushie) so I get it now...
I would get your doc to say that they only want to do the surgery at Mayo or Johns Hopkins so your insurance has to cover you there. An appeal process like Gumby said.
It is ok to talk a lot. I have only had 12 operations... cake compared to you. :)

[GUMBY]

Thanks Ro for helping out...Hope your doing the best you can. Wave hello to Sheila. Carrie all the best. Keep us posted.

[Ro from Vermont]

If you schedule your appointment on an MDA clinic day, you may have little or no charge, as that office is an MDA clinic office.

I know back in 2001, when I went the initial office visit was $500. I have Medicare and Medicaid (which will not work outside of Vermont).
Before I went to my appointment, I called my local MDA to find out if I could get some help on the 20% Medicare would not cover.

Long story short, my $500 appointment, along with Medicare and MDA only cost me $45 out of pocket (not including travel expenses).

I also suggest calling your insurance company seeing how this would be "out of network". You have 2 very rare medical conditions.
With some paperwork put in to the insurance company prior to the Johns Hopkins visit by your local neuro, you may get "prior auth" and your visit may be covered.

Start making some phone calls, It never hurts. Frustrates, yes. Hurts, no. :D

[carriestreet]

Thanks so much,
Rumpled, 12 is still more then anybody should ever have to go through.
I did call my insurance company today about the 20% and they said that since my hospital does treat the conditions that they won't grant an exception. I will talk more to my Dr's about this. Perhaps if I did get a letter with supporting documentation they will reconsider. Plus if it is coming from my DR, it puts a little more weight on it.
Even if I don't get it covered, I will still probably go. My moms friend worked for a hospital in the accounting department and she said that as long as you consistantly pay $5 a month they can't take you to court for payment. I might just have to do that. I don't feel comfortable have major surgery at a hospital that just told me I was too complicated of a case and tried to refer me elsewhere. It is my life we are playing with here.
Thank you so much for all of your input. I truly appreciate it!

[rumpled]

I HATE insurance companies... they are like little oh I cannot say it or I will get banned... but for sure they do not have our best interests in mind. I traveled far and wide for my surgeries and paid dearly for it. Now I am not working so my options are more limited but I used to save up - others went on real vacations but us, yes, it was the old medical vacation... what surgery this year? Brain? adrenal? ahhhh.... nice.... my poor husband. I send them factual but barely nice letters to get my claims paid - but it takes a year.

I would contact the hospital in advance and see if they can give you documents in advance that you can send into the insurance co - plus if the docs themselves keep refering you to other hospitals - what can you do? They don't want to do it so get a letter so you can bolster your case for elsewhere. I cannot blame you for not feeling comfortable! Then go to a supervisor and an appeals board - the people at the 800 number cannot answer questions - even the insurance broker at work can go to bat for you. I have done that in the past. Keep copies of everything - names and get fax numbers.

[GUMBY]

Let all your doctors do the appeals for you. If they cannot handle your case then they must write letters, etc. etc. The doctors know what they have to do, to get you into the proper hands.

My sister who sadly just lost her husband to Cancer, had two doctors who would not operate on her husband. Well, there was a brillant surgeon that was willing to do the surgery but he was not on her plan. Guess what? Letters were written, my sister fought like h--l with the nitwits who know nothing, sitting behind a desk, that must sit there rejecting claims all day. I don't know how they can sleep at night.A doctor reviewed it and denied the care. She never gave up and this wonderful man had some tricks of his own to help them. My B-I-L had the surgery and it gave him almost two years of that he would of never had and they were grateful for that. This surgeon was a wonderful man. PS, he was also paid by this piece of you know what insurance company. My sis would not give up, she wanted the best for him and she got it. I can't say what I really think of these nitwits or I will be banned also. So there is hope and you get your docs to help you out and get the care you deserve. I wish you well, stay strong.

[carriestreet]

Thank you for your encouragement. Have you ever watched the move "Rain Maker" with Matt Dameon? (sp?) that movie just about sums it up. I did talk to my insurance company again yesterday and they said that my Docs can appeal. But that is up to the Dr to do all of that, I can't.

Thanks

[redtail]

Hey Carrie

just wanted you to know that Im thinking of you, I know thats not much, but as I live in Australia, I cant give you any advice, sorry.

On a recent trip to hospital for IVIG infusions for a day, I met a lady with a 20year old son with severe physical and mental handicaps with lots of other problems, we talked alot, and I said to her, Ive decided that any there should be a new rule in life, that each person can only have 2 health problems in their lifetime, and only one can be complicated!!!!(the other can be the flu or a broken arm or leg) I know so many people with so many awful problems it just aint fair:(

I hope you find some nice people to help you out in your insurance/medical problems, there are some out there, they are just very hard to find.
take care
redtail

[rumpled]

Time to give the doc's office chocolates and make friends with the office manager... oh man... I have written the letters and given it to them to make their lives easier! If they just have to put it on their letterhead and sign it, they tend to do it faster... Cajole, look sick, (hah - like that is hard!) but the hard part sometimes is the office staff... some are nice, some are um, not.

[carriestreet]

I got my DR notes from the other day and it says that I can't be treated there. So that is a step in the right direction.

[lminick]

just getting on this forum for the first time, but had to write to offer my support. I was lucky enough to be diagnosed by a local neurologist who recommended that I see Dr. Drachman at Johns Hopkins. I have been treated by Dr. Drachman since being diagnosed with MG with thymoma in Nov 05.

I too have young kids so understand your concerns, needs etc. I was operated on in March 06. Since I was having sleep apnea at that point (along with major weakness, speech problems, everything else), Dr. Drachman made sure I was in the ICU right after the operation. The ICU nurses at Hopkins are fantastic. I know I'm one of the lucky ones but am now basically symptom free post thymectomy and and beginning to reduce my Mestinon and Cellcept.


Dr. Drachman is great and very caring - and careful. He is definitely the best person to take care of you especially with all your other problems, and is the "father" of myasthenia research. It's a priviledge to be treated by him, and Hopkins itself is at the forefront of this and other research. You didn't mention where you live, and I know costs are a consideration. Dr. visits are high - especially for an initial consult - but insurance may cover you (I hope), and I think it would be worthwhile. Call 410-955-5406 and ask to set up an appt with Dr. Drachman (Mondays only).

Best of luck,
Lisa

[carriestreet]

Well a lot has happened since I posted. U of M is going to be doing the surgery on Dec 6th. I am starting Plasmapheresis this week.

Has anybody else had the transsternal Thymectomy??

[Ro from Vermont]

Transsternal's the big split right?? Then that would be moi...
Had mine in 1981 at age 14.