June 26, 2012

The Day Has Finally Arrived

It is so hard to believe it was 3 months ago when I started to make plans to go to Mayo Clinic in Rochester, MN.  That day has finally arrived.

Tomorrow we are leaving at about 10am and hope to arrive at our hotel about 5pm. 

My first appt. is scheduled for Thursday at 7:30am.  I have no clue what they will be doing or how this all will play out.  We are all praying to get answers to my Medical Mystery as well as hopefully addressing my new neck problems. 

I will up date as soon as I can.  Deb.

June 08, 2012

So Much Going On

I have shared many times about my Cervical Fusion and all the hardware in there - recently someone questioned me saying that is impossible to have that all done so I thought I'd share with you what I look like from the inside. It is not gross just a lot of titanium.

If you enlarge your screen the picture gets bigger and you can see it better. The back screws and rods were the C3-T1 fusion - the front plate and screws were from the discectomy on my C5-C6 and C6-C7 with cadaver bones.  Did I mention I am held together by rods, plates and screws?

MAYO CLINIC INFO - My date is scheduled for Thursday, June 28th - length of stay anywhere between 4 to 7 days not including weekends or holidays. With the possibility of being admitted. That would be okay for me it would save me on food cost, room costs etc....

I called the transportation to set this up they said no problem.

I booked a discounted room at the Inn for 10 days to be on the safe side.

Then my friend who does my local rides for me informed me that her and her husband will be driving me up there leaving me then come back and get me. No problem I told her I would pay for their 1 night stay so they could go back the next day right? Wrong. She had plans of her own. 

Marilyn called me to informed me she is paying for her and Tom's stay for 2 nights and I owe nothing for them.  She is calling it her vacation.   Since she is my emergency contact person and she goes to all my medical appts. she will also stay with me the first day to see if we learn nothing new.

Once she has info as to what they will be doing with me then she and Tom will go home and come back to get me. I was shocked she would do that - I didn't even ask her - she said she just couldn't see me go by myself and wanted to be there for me. Now that is a true friend.

The ride alone is about 5 hrs one way.  I am awed by her generosity and friendship.

PASSING OUT SPELLS AGAIN - It had been months since I had one, now I am getting them once a month.  Well the one I had in April prompt my PCP to do a 48 hr heart monitor.  Of course you get it, have them put it on and wear it for 48 hrs and nothing happened.  Isn't that how it goes.

Well the report came in with some strange readings of very slow beats at 50 to the highest of 159.   No big deal.  But the heart Doctor wanted me to come in anyway.

My heart Dr.  spent an hour with us going over everything. He said that I do not have CHF just that the doctors didn't know what to blame my fluid retention on, so they said CHF.

My kidneys and bladder are okay as long as I regularly take my water pills. My lungs are weakened by a NeuroMuscular problem.  My entire Central Nervous System is shutting down including my esophagus, small intestines and/or all the involuntary muscles.

He suggested I go to Mayo Clinic to put all the pieces together.  He believes that all I have is getting worse due to the Autonomic Dysfunction for which we do not have a name.  I told him I had an appt. and said to keep it.

ON TO MY NECK PROBLEMS - On top of all that the injection I had for my neck pain did not work, so my Dr ordered a new MRI - and it showed 2 new bulging discs just below the surgery at T5 and T6. My Dr who gave me the injection said at this point there is nothing more they can do it is a result of my spondylitis. I will have to wait until I return from Mayo.

Mayo is looking more promising as the days go by. I can not wait for the 27th to come so I can finally get this Mystery put behind me.