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

[Sparkysarah]

Hi Jan

I found it difficult to take on board all that you shared in your post as it felt such devastating news that I cannot begin to think how you must be feeling or dealing with this.

The brain surgery sounds exceptionally scary and I think you need time to digest all that you
have found out, for the clinical evidence to be confirmed and the opportunity to talk with your family and professionals about the way forward before you reach any decisions.

You have my support and prayers and I am so sorry that you are having to deal with this very frightening news.

With love and hug

Sarah

PS I hpe you don't mind me suggesting....but in future posts many people on the forum would find it easier to read what you have written if you break your post up into short paragraphs.

[Lulu54]

Hi Jan,

When you get a minute, would you back up and tell us how this fits into your other diagnosis.  I'm remembering you have some very serious illnesses already in your differntial.  

I'm sorry I am not remembering the details right now.

This newest dx sounds beyond awful.  We'll stay posted to hear more and what the doctors propose for treatment.

hugs, L

[Wobbly]

Sorry to hear the news you received, my prayers will be with you and let us know how things go.

take care
wobbly

[HVAC]

I am terribly sorry.

Alex

[BOK2Bjan]

Thank you for your kind thoughts.  I am sorry to have run out of time this am - suddenly the phone was interrupting me about getting my car window fixed and I had little time anyway.  Hence a hurried explanation.  Sarah - I know it is the proper way to write posts, but I'd appreciate some grace given the circumstances.

I have posted my dx on my profile, but if you're like me, you get behind in keeping up with those.  I do have more than my share of troubles.  Systemic Sclerosis has all but made my esophagus and the rest of my GI system totally dysfunctional.  I aspirate GI contents when sleeping when GP slows digestion to the point of leaving rotten food in my stomach.  It also has caused Left Ventricular Diastolic Dysfunction, Lung damage galore, so am on O2, have PH and some fibrosis, and bilateral atelectasis due to alveolar plugging. Severe Arthralgia with swelling - especially in my hands and fingers

MS has caused foot drop, parasthesias everywhere (at different times) and cognitive problems.  I'm using a 4-wheel walker now which helps.

Diabetes - parts of type 1 and 2;  Atherosclerosis - severe;  Hypothyroid;  Interstitial Cystitis;  Osteoporosis;  Complex "cyst they hope" in spleen;  Nodules in Lungs;  Enlarged Pancreas with mass at head; dilated common bile duct, bile duct, pancreatic duct and intrahepatic duct;  Enlarged Liver;  Enlarged Heart:  Enlarged flaccid Esophagus Barrett's Esophagus; Mixed Connective Tissue Disease and still may have Rheumatoid Arthritis; DDD with cysts and other serious changes on last MRIs

I really can't remember everything right now.  This new thing is also an autoimmune disease related to inflammatory changes.  I truly didn't think I could get any worse - doctors didn't think it was possible either - until death that is.  But this - I am afraid I won't  be able to keep anyone up to date soon, or after surgery, because if I live, I won't be able to speak or communicate.  Few, including only 2 in my family know the news it is so new and I don't know how to tell them.  I'm already isolated due to them not wanting to watch me deteriorate and not knowing what to say.

While I can, I certainly plan to stay on the site and keep you informed and take part.  But we all need grace - especially when skills we take for granted begin to erode.  Even tho I wish people could understand what a day is like for me - I wouldn't want anyone to face that, so I trust in God and know that Jesus experienced rejection, sadness, and pain beyond our imagination.  He is my companion and Shepherd.

My doctor will no longer be able to write my pain scripts after June 1 - something that is also quite a bit of bad news.  So I face tough times, and less cognitive ability and less concentration each day.  But I know this is the best it will be.  That has shaken me - I do admit

Blessings to you all, Jan

[rendean]

Dear Jan,

I am so terribly sorry to hear this devastating news!!! What an awful lot of information for one to grasp and understand in such a short time.

You need to have the full support of your family, no matter how hard it is for them to take...it's even harder for you to undergo. Your family and friends here on the forum will be thinking of you and sending good thoughts your way !

Remembering you in thoughts and prayers,
Ren

[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

[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]

Fairy dust???

[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.

[JemmAus]

PLease note, the site above is dedicated to children who ahve this proceedure, hence all the references in the questions relating to kids....

[BOK2Bjan]

Thank you.  I have one extensive research and am in the process of locating a neurosurgeon who will accept Meicaid.  The surgery is not rushed into, although it must be done fairly quickly, as complications of the process can cause death from respiratory emergencies and other failures.  I am amazed that it has been so hard for me to get doctors to read my MRIs and do so little.  I went back years and saw a lot of information that should have alerted them to so many problems, yet no further tests were done.  It was because of my own vigilance that I have even gotten the answers I have.

I read one of the only encouraging cases a few minutes ago about a 47 year old man who didn't have this disease, but had to have a left hemispherectomy and was left dominant - meaning he was right handed and his speech was greatly effected.  He actually regained the ability to speak some and recognize some of what was said to him - follow commands etc.  He was also able to name objects put in his left hand - but not his right.  Since I'm an artist and planned to paint and write to earn some much needed money (plus I enjoy it) - hard to take.

If I am told yes - no question - I agree with dx, and you must have this surgery - you can bet your bippy, I'll ask more questions than anyone has ever thought of.  I hope Medicaid will not completely fail me, but if they do - I have taught my kids well, and am thankful for the influence I've been able to have.  I know I'll get to see the Lord and have a disease free life.  My sorrow is for those I will leave behind.

Yes, I have fear and sorrow for myself as well - I once again mourn the loss of abilities I have cherished and been thankful for.  I also feel bad I haven't used them to produce the volume of work I would like to leave behind.  

I am splitting time between seeking God and seeking medical courses of action.  My mother is dependent on me and that is hitting me hard - as is my son.  I haven't told anyone else in the family - including my daughter.  I picked up the phone about an hour ago - cried - and hung up.  I can't decide if she should be told right before finals and on the phone at that.  I need a bit of time to pray, process, and prepare.

I feel a desperate urge to get out my pencils and paints and do what I can while I can too.

Thank you for being there for me as I go through so much.  It means more than you know.  I have learned that serotonin, insulin resistance, and other conditions I have can influence brain deterioration.  A lot of research the medical world has yet to do.

Blessings, Jan

[implodingspace]

Honestly sweet mama, re: telling your daughter before finals, it might be easier for her to get through holding off on telling her. I know a mother's judgment is the best, so this is just my first thought as someone doing 2 of my three finals this week. I'm having a hard enough time separating my minor troubles.

Maybe giving some more time will also leave more time for you to press deeper into God and affording you more of his peace to fill you. I am already amazed at your faith...I know too well the way our spirit and mind knowledge of the TRUTH tend to have to pull along on a string out emotions, but keep pulling them , they will catch up to the rest of you and step in sync with your spirit. I am still praying and holding you close, and regardless of when that day is for either of us. I really do look forward to dancing and holding you some sweet day, both of us only knowing pure holy happiness and JOY! PEACE!

there is a keith green song, I can't wait to get to heaven...and it is just beautiful

[cainer]

hi!!  i posted yesterday -it didnt save it, prob. me hit wrong key, well  im here for you if you need to talk, you do lose some things in this-my cousins daughter- had this- but she is ok- she walks talks- ,she is forgetful- and things like that, she got married had a child- her mom helps with the baby, but just wanted to reassure you,  you should be -ok-  hang in there , and well i dont think this is fair at all to you- its not,  but expect to see you on here- let us know how you are!!   big hugs   tick

[Ufrustrated2]

so sorry to hear of your new hurdles...thoughts & prayers for you and your family

[michelleric]

So sorry to hear this awfully scary news.  My thoughts and prayers are with you as you are going through this now.  Sending big warm hugs to you,
Michelle

[rendean]

Hi Jan,
I was reading over your list of conditions and symptoms. You must be miserable. I do have a question, if you don't mind, how can you have atelectasis with aveloli plugging? And whay can't they "unplug" the aveoli to relieve your breathing distress.

According to info I found you can't have atelectalsi if you have alveoli plugging:

"What is atelectasis?
Alveoli devoid of air with loss of lung volume.
If alveoli are filled with material (inflammatory fluid, blood etc) displacing air, it is not considered atelectasis."

www.mddean.luc.edu/lumen/MedEd/curriculum/Medicine/Atelectsis.htm

Thanks for the explanation if you have the time. Wishing you well.
Ren

[BOK2Bjan]

Hi Ren, Yes, it is confusing, but  believe me - both are compatible.  The cause of atelectasis is some blockage of the ability of the lung to exchange gases, and therefore part of the lung can collapse and it depends on where and how much of the lung is involved, how the clinical picture looks.  

The alveoli are the sacs where the gases exchange.  True, the pleural space, and bronchi can also cause atelectasis, but mine is in both lung bases bilaterally and is caused by aspiration pneumonitis.  The GI contents and inflammatory bi-products clog the alveolar sacs and they aren't able to expand.  With me - I was blessed with a large lung volume, and although I do have a lot of problems with exercise or after aspiration (high fevers etc.), because I still have significant lung volume - they haven't decided to do any "washing" or other intervention.

It has caused chronic diaphram elevation and the subsequent shallow breathing isn't good either.  I've heard wonderful things about the use of hydrogen peroxide - IV or other method.  It clears out the blockage, but pharmaceutical companies are certainly not going to promote, test, or encourage knowledge of something they can't "own".  It can be frustrating.

I'm in the hospital as of yesterday.  I got a call saying my hemoglobin was 7.4 and couldn't get into outpatient transfusion site, and also I could see a neuro and GI guy. I had a sonogram  and blood transfusion last night and am having an EEG and endoscopy this morning.  I was awakened at 4am this morning cause they wanted me awake at least 4 hrs before the EEG!

Ugh!

[HVAC]

Sounds terrible. Hang in there.

Alex