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.

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.

Some REALLY GREAT News

I just received the confirmation I was looking for about Mayo Clinic in MN. My transportation company who drives me around when my friend can not said that they have a contract with WI and neighboring states that if we do not have a ride to Medical Appts. they have to take us. I do not need a prior authorization or anything just a date and I call them up 3 days before and I am guaranteed a ride. I am so excited.

If that wasn't enough good news - I found out both my insurances are excepted - and since I do not have extra money or should I say with my financial situation I qualify to live near by at no cost to me. I also qualify for food vouchers. God is good All the Time. Oh and I do not need a referral I just make the appt. and away I go.

I have requested the Appts., forwarded the pertinent info to them via the Internet now I have to wait 2 business days for the review, then they call me go over some more medical stuff and then I get the Appt. dates.

I my PCP approved this, well she personally called me yesterday and was doing the happy dance on the phone I could almost see it. She said she will do ALL the gathering of all the necessary documents and test results we need and make an Appt. to see me and hand deliver them to me.

Dr K. is the best Dr. I have ever had and goes the second mile to help her patients when she knows she can't. She can't wait for the process to go forward. Truthfully I think she was more ecstatic then I was.         

Thanks again I will keep you posted as I know more. Deb.

Thanks for your Reply!

Three Different Appointment Results

Hello and welcome to my Mystery Medical Story.

It has been a battle for a long time and right now I am not any closer to getting answers than I was in 2007 when this all began.

The first appt. was on April 12th with the Pulmonary Doctor who specializes in PH. He took a look at me, my test results, my blood pressure and said "well I see your blood pressure is starting to climb but it is not bad."

His visit was somewhat frustrating because he has no clue what to do with me and said so, he told me to just go home and live with what I have and not get frustrated because that will not help. I am to keep taking my water pills because at least that is working and keeping me from more serious problems. I said that is fine but what is it I have that I need to just live with?

He begins to name them one after another and then said I would benefit from seeing another doctor who and what kind shocked me and my friend. He looked at my fingers and nails and wanted to know if I noticed a difference in them, which I replied yes. He wants me to go see a dermatologist for "clubbed fingers and nails". The thing is, clubbed fingers are most likely caused by a heart problem, a lung problem and or low oxygen in the blood. All of which I have. And the Pulmonary Doctor who deals with the lungs wants me to see a Dermatologist. Now isn't that a good one.

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The Endo appt. on the 16th went horribly wrong. This Dr believing he knows it all, cursed me out and told me when, where and how to take my Thyroid medicine. I have been taking thyroid meds since I was 15 yrs old. I do not believe they changed the way one is to take them. Since I refused and told him why, I couldn't take the thyroid medicine his way, he told me in a rage he has been treating people for 25 yrs and he knows better than the pharmacy and my PCP. And that I do not need to be tested again for a year. Which no one is agreeing too because I do not have a thyroid it flip flops from hyper to hypo on a regular basis, that is why I was sent to see this yahoo in the first place. I will not be going back to him in the near future or ever.

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I saw my foot doctor today for my edema and Tenosynovitis of flexor hallucis longus. His recommendation is to rest and ice my ankle and stay off it while I am on Prednisone for a week. He does not want me to even go to the Pulm. Rehab as exercise can cause more damage. He thinks that is what is still causing the Tendon flare ups in my knees "the exercise". The Ortho Dr never told me to rest and ice and certainly never said to stop exercising.

I will go back to the foot doctor on the 30th if I am not better or the pain has not gone away I will need to be put in a air boot again for 6 weeks. He thinks the flare ups are due to an arch problem in that foot because of the Tarsal Tunnel Surgeries in 1993. My foot is not stable. He wants to talk about getting arch supports but my insurance doesn't cover it and I can not afford it. I am not worried about this for I know the Lord will provide as He Has always done before.