Mayo's Findings

Here is somewhat of Mayo's Findings according to the Internal Medicine Dr. who was my go to Dr.  to get everything done.

The clinics I went to were: Neurology, Cardiology, Cough clinic, Vascular, Autonomic, Blood clinic, Urology, I had Xrays, Ct scan, blood work on 4 different days and a host of different tests.  Because I was on blood thinners no procedures were done there that required my being off them.  If I needed a particular procedure it would be scheduled when I got home with my Hematologist directing things.

I will start with my head my work my way down.

• MRI and EEG shows excessive fast activity in the posterior aspect of right globuss pallidus.  (Needs following with Neurologist).
• Xrays of the spine: facet disease at the C2-C3 area as well T2,3,4,5.  Bulging disks and DDD at the T4, T5 area of the thoracic.  T2 prominent spinous process is eroding needs intervention. Loosening and/or protruding hardware found throughout the fusion. Cervical Spondylois. (Surgery is indicated at this time, see Neurosurgeon at earliest appt.). 
• Chest Xrays:  Mildly tortuous aorta.  Thoracolumbar curve.  Colon or small intestines are interposition between the right hemidiaphragm and liver.  
• Lung Xray and Ct Scan:  Scattered linear opacities in both lung bases with architectural distortion and bronchiectasis related to pulmonary fibrosis.  Also found to have bronchial wall thickening. EMG confirms Neuromuscular weakness.  Bilateral timy calcified granulomas.  2 - 2mm nodules seen in left lower lobe definitely not calcified. (to be watched.)  (Further tests need to be done, can be made with specialist who works with Pulmonary Fibrosis). 
•  Cough Clinic:  Findings:  Chronic cough due to idiopathic fluid retention, Bronchiectasis, Pulmonary Fibrosis and idiopathic Neuromuscular weakness, (follow - up with Pulmonary Dr in 6 weeks, can be done at home or here).
•  Hematologist: Findings:  Von Willebrand disease, iron deficiency anemia, Protein S, Protein C deficiencies.  (Follow-up with Hematologist at home).(Further recommendations is to have an EMG and Colonoscopy to find the source of bleed - iron defienct anemia has been present since 2007, can be done here or at home).
• Vascular: Findings:  Bilateral lower extremity swelling.  More notable on the right than left.  RSDS on the right foot.  Has clubbing of fingers and toes.  Lower extremities cool to the touch.  Has some venulectatic and telangietatic varicosities in both calves.  Ultrasound confirms 3 bilateral small saphenous vein insufficiency.  Also confirmed including RSD, autonomic dysfunction and  lymphatic dysfunction caused by knee operations.  (She is to see her Vascular Surgeon at home to have what I would recommend a procedure of small saphenous vein laser ablation). 
• Neurology: Findings: Autonomic dysfunction of intestines, bladder and right leg.  Periodic Limb Movement Disorder, Urological issues. (Continue treatments with home Neurologist).                         

 I will re-read the notes from the Dr to make sure nothing is missing.  Next blog in a couple of days will be what I have been doing since Mayo.

Mayo's Appointments

I realize it has been over a month since I have been back but I have had  appointments left and right since I have been back.  

I ended up being at Mayo for 2 1/2 weeks even had time to go to their emergency dept.  

For the first week I had 7 to 8 appts. a day.   One after another totally exhausting.   They sent me to clinics I never heard of and do tests that I thought I'd never get through.  They had me going from one dept. to another giving me a total work-up from head to toe leaving no stone unturned. 

The second week was more appts.  I only 4 and 5 a day, not as exhausting.  Weather was hot and humid, there wasn't a day that the heat index wasn't below 100 degrees.  Was suppose to rain like 4 times but never did.  I stayed at a hotel 3 blocks away but to get home I had to walk via the subway to avoid the heat what took 6 mins in the morning took at least 1/2 hr back.  It was like a maze getting home.  

Anyway I got there via my friend Marilyn and her husband Tom, due to my crazy appt. schedule they left on Friday, we arrived on Wednesday, June 27 they planned to come get me when I was done.   

The last Wednesday I was there I think it was the 11th of July Marilyn planned on coming up on Sat. the 14th to avoid the traffic to get me.   But on Thursday while I was at the Mayo ER her son phoned me to tell me Marilyn was at the ER at home.  Something with her heart and that she couldn't come get me.  

My ER was minor - swollen, red, itchy lips and surrounding area.  Turns out I am allergic to beeswax.  I didn't know that until I switched chap sticks.  Marilyn was admitted and they did a heart carth.  but didn't find anything wrong so they gave her a 30 day heart monitor and sent her on her way Friday evening.  I did get home Friday night as well via another transportation company.

I hope to never go to Mayo again that was extremely taxing on my body. 

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.