Lord be with me! Devastating news!

[BOK2Bjan]

I have to go to church soon so only have a minute, but wanted to tell you all this.  I could use support, prayers, and any other help possible.  It wasn't easy to get the MRIs due to Missouri Medicaid being broke - and had to have them a week apart but that's another "vent" story.  I was expecting to find out I had new lesions in my brain due to having symptoms of either that or lesions in my spinal cord.  I did have a lot of deterioration and strange things happening in my spine, but the big news was my brain.  I've been havine right sided muscle loss and weakness and pain, and more concerning - aphasia.  I was getting so bad that on the phone I'd have to apologize - also just talking to friends.  Word finding and fluidity were going.  The MRI shows left hemisphere atrophy with the only dx probable (with clinical corroboration - definite) of Rasmussen's Encephalitis/chronic focal encephalitis / or even Rasmussen's Syndrome.  It was once thought only to occur in children, but occurs in young and older adults as well.  It is rare in any age (of course).  The hemisphere that is effected (mine is the left) starts with destruction  in one area and then marches on until the entire hemisphere is involved.  It has 3 stages, taking 8 - 12 months and although different immunological treatments have been tried, as well as resection of the initially effected area - nothing works other than hemispherectomy..  There have been studies showing that older people may have some delay in progression with human IVIG, and I've been getting IVIG while this has been happening, but since my last MRIs were a at least a year an a half ago - don't know for sure when this started.  I do know the aphasia - first sign for left sided people has been obviously progressing for some time.  Then there are increases in seizures, which can be things like I've had - myoclonal jerks, and total aphasia attacks to full tonic-clonic seizures.  I have to see my neurologist who has never helped me and go from there.  But they say the sooner the brain surgery takes place the better.  In my age group - language isn't regained, and hemiparesis is pretty diffuse.  Also progressive dysphasia is common and I don't need more of that.  I'm a full - left AND right sided person.  BUT my greatest loves and gifts are writing, art, and the expressive arts.  I hated losing physical wellness and hate living in pain, but facing the removal of half my brain - a surgery I probably stand a low change of surviving - that's a tough one.  

I have a lot to get in order quickly and haven't been very successful thus far getting help with any of it.  Phone keeps ringing and gotta go.

Blessings, Jan

[supermum_ms]

OMG!!!! What you must be going through is heart renching, unimaginable.......

Please please please seek a second opinion, or a third before following through with the removal of half your brain! Such drastic surgery with all your issues on top of, would have to be rarer than rare, maybe 1 in a billion plus range, there is no way to really know if YOU could recover!!

I have so many questions and but what's, you must have at least a trillion going through your weary head (hugs) please make sure you at least get the answers to these 2.

1) How many times have you performed this surgery and what was the out come for those  prior patients?

2) What are the expected disabilities and what does that really mean for me and my other conditions?

You are in my thoughts and prayers

HUGS..............JJ

[implodingspace]

sweetheart, and sister I am holding you close in prayer <3

[crwriter]

Bump and Here is hoping any surgery keeps you in our Lord's hands in terms of success.

[sllowe]

Jan - This has shaken me too.

I feel speechless and just want you to know that if I could, I'd wrap a warm embrace around you and tell you how very proud I am of you for getting through what you do each and every day. And, thank you for allowing us to be apart of your life.

Your faith shines through your words and I know that will provide you comfort you while you face what's next. Please consider a 2nd opinion too like Supermum so desperately urges.

Know I'm thinking of you and praying.
-Shell

[msgrigioilcavallo]

Jan, I pray that God's grace will be sufficient for you as you battle this disease.  I'll be praying for you.

[addicted2harleys]

Jan-

I can't even begin to imagine what you must be going through.  I am speechless, as well.  I, too, urge you to get a second opinion and to ask these very important questions that others have posted.  

I have never heard of anyone going through this surgery.  I wouldn't think it was even possible.  Then to add on all of your other dx's.  Man oh man, do you need family and friend support especially now and most definitely after the surgery, if you opt to have it done.  

I will be praying for you with all the others.  Please share with us when you can.  

Hugs,
Addi