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

[JemmAus]

Umm, I found this, which is an entire foundation dedicated to hemispherectomy:

http://hemifoundation.intuitwebsites.com/facts.html

These are questions they recommend asking the surgeons:

Questions to ask neurologists / neurosurgeons.

    * What happens if the EMU EEG shows that my child is having seizure activity in the Good Hemisphere?  Does that disqualify my child from surgery?

    * What if the seizure activity is beginning in the bad side, but quickly moves to the other side?  Would that disqualify my child from surgery?

    * What are the qualifications for surgery?   Paresis?  Failed Medications?

    * How long can we wait for surgery?   What is the hospital schedule and how long will it take until surgery?

    * Surgeon: How many Hemispherectomies have you done?  Neurologist: How many Hemispherectomies have you been involved in?

    * How many Hemispherectomies has this hospital done?

    * What special training/experience do you have with Hemispherectomy surgery?

    * May I have a tour of the PICU and In-Patient Rehab Facility?

    * Will my child be able to speak after surgery?  If left-side, should you do a WADA test to ensure that her language center has moved to the right hemisphere?  Is my child to young for a WADA Test?  If it hasn’t moved yet, can we wait a few months on surgery in hopes more language will transfer?  Would it do any good to wait?

    * What type of Hemispherectomy approach do you propose?   Hemisphereotomy? Anatomic, Functional, or somewhere in between?  What are the pros and cons of each?  Returning Seizures?  Hydrocephelus?  Shunt?

    * Explain Hemianopsia to me?  Will my child have that after surgery?  What does that mean to her vision?

    * In PICU, Do you ensure that the head is hemispherectomy-side up until enough time has passed that the cavity has filled with cerebrospinal fluid?  Only then moving the head to midline. (face up)  Is it important?

    * Can you tell me the difference in how you would approach a hemispherectomy for a child with this disease versus a child with Hemimegalencephaly (HME), Sturge-Weber Syndrome, Rasmussen’s Syndrome, Stroke, Other?  If any.

    * There are no guarantees, but how long would you guess that my child would stay in PICU if all goes well?  Regular Room?  In-patient Rehab?

    * Will my child be dazed, non-emotional the first several days after surgery?  How long can this last?

    * Memory Loss?  Cognitive Loss?  Personality Loss?

    * Explain Hemiplegia?   Will my child be hemiplegic right after surgery?  Will those muscles wake up, but be permanently weak?  Does that include torso muscles, swallowing muscles, lips, tongue, etc?

    * Explain Hemiparesis?  Is this permanent?

    * What are other possible complications of surgery?


From what I can tell, it's best done on children under 14.

I obviously don't know how you feel (bar shocked and devastated), but do you WANT to live like this? You have your faith, which must bring you comfort. I just find that so often in dire siutations everyone rushes to find a solution, when sometimes there just isn't one and the end of life looms.

Good luck in your decisions.

[addicted2harleys]

Fairy dust???

[Karen99]

I am very sad and concerned to hear this bad news.  Know that I am praying for you and for those who are caring for you.  You have all of our love and support here.

I would like to know who the "they" are that has given the diagnosis and suggestion for this surgery. Please, please get a second opinion.  Your neurologist who has suggested fairy dust for you in the past may not be the best option even for a referral.  She should have referred you out a long time ago.  Do you have any other options to go to a facility/neurosurgeon who is on top of their game?  If not, we'll have to find you one.  

Your newest MRI needs to be looked at and looked at again by top-notch neurosurgeons.  Your case could be intriguing to one of the neurological guru's and catch their interest.  Your history and newest finding is SCREAMING for a fresh look.  Having Medicaid puts you at a disadvantage but doesn't eliminate it all together.  

I'll help.  Please PM me if you will allow me to do some calls and homework on your behalf.  
    

[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

[msgrigioilcavallo]

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

[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