Mayo Clinic opens at 6:30 AM - and is open until 5:30 - 6:00, depending on the department! Isn't that crazy? Our first appointment again today was at 7:00 am (thankful it wasn't at 6:30 :) )! We were delayed for almost 2 hours dealing with insurance issues and the business office before they could do the 2 MRI's that were ordered. Our insurance takes up to 2 days to approve MRI's so, they were going to have us make an $8000.00 deposit, just in case it wasn't covered! Fortunately (and a prayer later), the business office manager came out and said that because we have Military insurance, we would not have to make the deposit, and they would go ahead with the test if we would like. It is a necessary tool to affirm the diagnosis, so we went ahead with the test. We are just praying that it will be covered!
From that appointment we went to the Urology consult, to an information lecture on using a machine to measure the oxygen content of the blood while you sleep, and then on for the Lumbar Puncture. Fortunately today we were finished by 4:30. We grabbed a quick dinner, went by the grocery store to pick up a few snack items and sandwich "fixings", so we won't have to eat out each meal. We start tomorrow at 7:00 again, so early to bed tonight!
Today we saw people in wheelchairs, small children with no hair due to chemo, patients that had to carry with them the very oxygen necessary for life. I heard a man that was setting behind me call his wife and tell her that he had cancer. ........ I counted my blessings.
Linda
Thursday, April 7, 2011
Mayo, Day #2
Day 2 began with a visit with another neurologist, this one specializing in MS. Dr. P was from Hungary, and had a delightful accent! I could almost just copy my first posting! He spent so much time with us, asking and answering questions. We were with him almost 1 1/2 hrs. He was very personable and easy to communicate with. We have been so impressed with everyone that has helped us this week! Everyone we have had contact with from the receptionists to the Dr's have been incredible.
Dr. P focused on the symptoms that could be related to MS at this appointment, and discussed tests that could be accomplished to affirm the MS diagnosis. Dr. P concurred with Dr. K (from yesterday) in his opinion that the original diagnosis from last fall of frontal lobe dementia was incorrect. He reviewed the MRI from last September with us again, and gave us additional info - based on his review. Again, these findings pointed to MS. He feels that Mike has secondary progressive MS. That type occurs in approximately 50% of people that have had the original diagnosis of MS and have been in remission. We will be meeting with Dr. P again, after all of the tests that he has ordered have been accomplished for further information on treatments available. Dr. P has ordered consults with a neurologist that specializes in cognitive changes in MS patients, a neuropthamologist to evaluate his sight changes, a urologist that specializes in changes that may occur due to a neurological condition, and many, many tests.
Our day ended with dinner at Red Lobster - and then back to our room by 7:30! We were both wiped out from such a busy day....and so much walking!
I realized that the previous posting showed that it was posted by Mike! It actually was me, so I guess we all will need to sign each posting so we'll know whose talking!!!
Linda
Dr. P focused on the symptoms that could be related to MS at this appointment, and discussed tests that could be accomplished to affirm the MS diagnosis. Dr. P concurred with Dr. K (from yesterday) in his opinion that the original diagnosis from last fall of frontal lobe dementia was incorrect. He reviewed the MRI from last September with us again, and gave us additional info - based on his review. Again, these findings pointed to MS. He feels that Mike has secondary progressive MS. That type occurs in approximately 50% of people that have had the original diagnosis of MS and have been in remission. We will be meeting with Dr. P again, after all of the tests that he has ordered have been accomplished for further information on treatments available. Dr. P has ordered consults with a neurologist that specializes in cognitive changes in MS patients, a neuropthamologist to evaluate his sight changes, a urologist that specializes in changes that may occur due to a neurological condition, and many, many tests.
Our day ended with dinner at Red Lobster - and then back to our room by 7:30! We were both wiped out from such a busy day....and so much walking!
I realized that the previous posting showed that it was posted by Mike! It actually was me, so I guess we all will need to sign each posting so we'll know whose talking!!!
Linda
Tuesday, April 5, 2011
Mayo, Day #1
Thanks to my lovely youngest daughter, my writing skills will be known by all who read this blog! (Or perhaps I should say lack-of!) All of my daughters have the gift of writing! Although I may not have that talent, and may not be able to entertain as they do, I can INFORM!
Our trip was preceded by a magnificent display of power in the form of hail the size of golf balls! It left broken windows, torn screens, loose gutters and a pelted new truck that belongs to my brother!
We faced a very strong headwind all the way from home to Rochester! It was actually so strong that it literally blew a piece of trim off of my car window! We did arrive safely and drove right to the hotel without any wrong turns....good start, right?
Our first day began with an appointment at 7:00 am to meet with the neurologist, Dr. K, in the Gonda Building at the Mayo Clinic. Dr. K specializes in brain function...and disfunction. The facility is amazing...much larger than I had anticipated. The Gonda Building has 18 floors, all with different specialties. Our Journey begins at the 8 West desk. I tend to be very critical of medical facilities and the smoothness of the operation....just because of the lack of customer service that frequently plagues medical practices. Certainly not the case here! They have it together! When we left Dr. K's consultation we had papers in hand with a plan! Everyone was helpful and each part of our day fit together like a puzzle, with all of the pieces present!
Dr. K was very kind, interested and thorough! He spent over an hour with us, just going over health history, asking questions that would further explain the information he had already received from our family Dr., the neurologist in KC, and the Dr. that performed the psych. evaluation that ultimately resulted in the diagnosis of frontal lobe dementia. We went through each of Mike's symptoms in detail, elaborating as needed. I was quite impressed that he asked so many questions about even simple things, so that he had a complete picture of the last several months. He also showed us the MRI that was done in KC back in October of 2010. He explained what he saw...which was very evident, even to the layperson! The MRI displayed many small spots of white areas, that are not normal. He said there was "white matter hyper intensity". However, he did not see "shrinkage", which is the hallmark of a degenerative disease! That was great news! He said his initial impression was that the Dr. that performed the psych evaluation was a little "generous" with his diagnosis. Dr. K said he does believe that something out of the ordinary is going on...however he would not have diagnosed the problem as dementia based on the information that was revealed by the testing. He asked about Mike's blood pressure - asked if he had any vascular problems, and went on to say that the spots appear as though they could be related to a small blood vessel disease. He asked if he had ever had a stroke. Of course, Mike's blood pressure is very low.....and always has been, so that wasn't a probable cause. Dr. K said if he just saw the scan...with no health info, that would have been his guess! However, as I said before, there are no markers in Mike's health history to support that diagnosis, so.....tests have been ordered! Dr. K suggested a PET scan - but only if our ins. would cover. His words were "If your ins. does not cover - I do not think the information would be so valuable to pay the $5000.00 fee for the test". So, the jury is still out on that one....if it will be approved or not. He also ordered a lumbar puncture for Thursday @ 2:15. He may also order another CT brain scan, he was not definate about that. We also have an appointment tomorrow @ 12:45 with an MS specialist to further evaluate the MS diagnosis and symptoms.
We were up at 5:00 this am, and after the drive yesterday, we are both exhausted. We went out and ate tonight, then came back to the hotel to drop the car off, and went for a walk. Downtown Rochester IS the Mayo Clinic! There are lots of little shops and a couple of shopping areas with groupings of stores. It is very clean and safe...especially for a downtown area. But, as I said, everything is built around the Clinic area, and the Methodist Hospital, which is also a part of the Mayo campus. There are subways and walk-ways that connect them all! Our hotel is about 2 1/2 blocks from the clinic. We were able to take the underground tunnel - which was great since we went over there so early! I would estimate there is about a 6 block area with underground walkways, or overhead walkways that connect them all. I will post pictures when I get home....and Elizabeth shows me how!
My fear has been that the original diagnosis was correct, my prayer has been that the original diagnosis was incorrect! I feel encouraged after today. Our God is Mighty, Holy, Perfect and Just. I choose to trust Him, and know He will pave the path that leads to our future. I know I can trust Him to walk beside us the entire way, and carry us if the journey should become too tiresome.
Psalm 138:3 "On the day I called, You answered me; You made me bold with strength in my soul" (New American Standard version)
Our trip was preceded by a magnificent display of power in the form of hail the size of golf balls! It left broken windows, torn screens, loose gutters and a pelted new truck that belongs to my brother!
We faced a very strong headwind all the way from home to Rochester! It was actually so strong that it literally blew a piece of trim off of my car window! We did arrive safely and drove right to the hotel without any wrong turns....good start, right?
Our first day began with an appointment at 7:00 am to meet with the neurologist, Dr. K, in the Gonda Building at the Mayo Clinic. Dr. K specializes in brain function...and disfunction. The facility is amazing...much larger than I had anticipated. The Gonda Building has 18 floors, all with different specialties. Our Journey begins at the 8 West desk. I tend to be very critical of medical facilities and the smoothness of the operation....just because of the lack of customer service that frequently plagues medical practices. Certainly not the case here! They have it together! When we left Dr. K's consultation we had papers in hand with a plan! Everyone was helpful and each part of our day fit together like a puzzle, with all of the pieces present!
Dr. K was very kind, interested and thorough! He spent over an hour with us, just going over health history, asking questions that would further explain the information he had already received from our family Dr., the neurologist in KC, and the Dr. that performed the psych. evaluation that ultimately resulted in the diagnosis of frontal lobe dementia. We went through each of Mike's symptoms in detail, elaborating as needed. I was quite impressed that he asked so many questions about even simple things, so that he had a complete picture of the last several months. He also showed us the MRI that was done in KC back in October of 2010. He explained what he saw...which was very evident, even to the layperson! The MRI displayed many small spots of white areas, that are not normal. He said there was "white matter hyper intensity". However, he did not see "shrinkage", which is the hallmark of a degenerative disease! That was great news! He said his initial impression was that the Dr. that performed the psych evaluation was a little "generous" with his diagnosis. Dr. K said he does believe that something out of the ordinary is going on...however he would not have diagnosed the problem as dementia based on the information that was revealed by the testing. He asked about Mike's blood pressure - asked if he had any vascular problems, and went on to say that the spots appear as though they could be related to a small blood vessel disease. He asked if he had ever had a stroke. Of course, Mike's blood pressure is very low.....and always has been, so that wasn't a probable cause. Dr. K said if he just saw the scan...with no health info, that would have been his guess! However, as I said before, there are no markers in Mike's health history to support that diagnosis, so.....tests have been ordered! Dr. K suggested a PET scan - but only if our ins. would cover. His words were "If your ins. does not cover - I do not think the information would be so valuable to pay the $5000.00 fee for the test". So, the jury is still out on that one....if it will be approved or not. He also ordered a lumbar puncture for Thursday @ 2:15. He may also order another CT brain scan, he was not definate about that. We also have an appointment tomorrow @ 12:45 with an MS specialist to further evaluate the MS diagnosis and symptoms.
We were up at 5:00 this am, and after the drive yesterday, we are both exhausted. We went out and ate tonight, then came back to the hotel to drop the car off, and went for a walk. Downtown Rochester IS the Mayo Clinic! There are lots of little shops and a couple of shopping areas with groupings of stores. It is very clean and safe...especially for a downtown area. But, as I said, everything is built around the Clinic area, and the Methodist Hospital, which is also a part of the Mayo campus. There are subways and walk-ways that connect them all! Our hotel is about 2 1/2 blocks from the clinic. We were able to take the underground tunnel - which was great since we went over there so early! I would estimate there is about a 6 block area with underground walkways, or overhead walkways that connect them all. I will post pictures when I get home....and Elizabeth shows me how!
My fear has been that the original diagnosis was correct, my prayer has been that the original diagnosis was incorrect! I feel encouraged after today. Our God is Mighty, Holy, Perfect and Just. I choose to trust Him, and know He will pave the path that leads to our future. I know I can trust Him to walk beside us the entire way, and carry us if the journey should become too tiresome.
Psalm 138:3 "On the day I called, You answered me; You made me bold with strength in my soul" (New American Standard version)
New beginnings
So this is the beginning of I hope to be many posts, not from me, but from my dad and mom and sisters. My dad is retired from the USAF, and now spends a few days a week helping people at Home Depot complete their home plumbing projects. Have you ever met a person that just makes the world a better place by just being alive? That's my dad. He is a wonderful father, friend and papa, and I am so proud to have him as my dad. When he was diagnosed with dementia last fall, I questions why God would allow this to happen to one of his faithful servants... why my dad? While I still don't fully understand this, I do know there have been blessings that have come from this, like time spent together, and others that I will go into more at a later time. This week my dad is at the Mayo clinic having many tests run to ensure that his diagnosis is correct, and that we are not missing something. Unfortunately frontal temporal dementia is untreatable, but if the symptoms he is experiencing happen to be the MS, this is treatable. Due to my own life challenges that lead me to surgery last week (you can read of these at my family blog), I was disappointingly unable to go. So my mom and dad left yesterday and the tests began today. I am hoping this blog can keep family and friends informed of where we are in the journey God has chosen for our family.
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