Cleveland Clinic visit

9/3/13 

Email to family and friends regarding Cleveland Clinic visit

Well, I'm not sure where to start so I will just jump right in.  I do need to share this little part about the wheelchair service guy at the airport.  While talking to him, we found out he was originally from Cleveland!  Had lived there for 36 years before moving to Alabama.  What are the chances of that??  He was so nice, and he all but promised that we would be taken care of at Cleveland Clinic.  He really was the little angel we needed before departing on this adventure.  

Anyway, back to today's visit.  First, the doctor feels like she has Spinal Myoclonus.  This is basically jerking caused by nerve damage in the spine and he thinks this is a result of the staph infection she had five years ago.  Apparently, there was damage there we didn't know about, and it sort of triggered other nerve damage ultimately presenting itself in various ways until it settled into full blown shoulder jerking and involuntary arm and trunk movements.  That the doctor thinks it's spinal myoclonus is in itself very ironic because this is exactly what I came up with back when she was hospitalized in May.  I thought it might have had something to do with the staph infection she had 5 years ago so I had been googling myoclonus (a type of jerking) together with the infection from 5 years ago and came up with spinal myoclonus.  I had even written it down on a piece of paper for dad to show it to the doctors if I wasn't there when they came around.  We couldn't get anyone to listen to us when we mentioned it.  Anyway, the dr. here significantly increased a medication she's taken for many, many years and he added another drug that treats muscle spasms due to spinal cord damage.  He also ordered an EMG test.  It's a comprehensive nerve conduction test.  This basically delivers an electrical stimulation through a needle that is inserted in various places on her body.  

Second, the doctor wants to rule out Wilson's Disease.  It's a condition where the body does not properly rid itself of copper.  She does have a some of the symptoms of this, but there's many symptoms she doesn't have.  Blood work and a 24 hour urine collection is needed.  We did the blood work and the EMG today in the main hospital.  Lots of fun shuttling around this huge campus--172 acres per the shuttle driver.  But at least it is a very nice hospital with lots of nice and helpful people!  

Third, the doctor recommended she see a rehabilitative doctor and start some form of rehabilitation.  We are looking for one.  

Fourth, while looking at a MRI scan of her neck, he found a questionable area of concern on her spine.  It looks like it could be compressed and could be causing some of the symptoms.  We will talk to her Tusc neurology group to see what they think.  

Unfortunately, there is no cure for spinal myoclonus.  It's something she will always have, but hopefully, it will be manageable.  It's treated with medication and rehab.  After a while the medications lose their effectiveness and her meds will have to be changed.  

As you know, not having a cure or a fix isn't exactly what we wanted to hear, but we trust that we came to the right place and that she was seen by a competent doctor.  The neurology department here was ranked #5 in the nation last year.  

So what's next?  We start collecting urine for 24 hours tomorrow morning.  Sounds glamorous, huh?  We will return the urine specimen to the lab Thursday morning.  Our flight home is at 1:00 Thursday.  Under the direction of this doctor, mom will be managed by her Tuscaloosa neurologist.  

It's already been a life-altering experience for mom and dad, and for us, too.  She has a long road ahead of her.  I keep praying she continues to be the fighter she's always been.  

I'm sorry this is such a long email, but her condition is very involved and there's no short answers as to how the visit went today.  

Thanks for keeping her in your prayers.

I love you all,

Kim