Mayo journey ends

I'm sorry I didn't get this posted last night; I tried but my technology failed me as I was writing the last sentence!  So, here I go again.  We left the ranch on Tuesday morning  April 12, drove to Souix Falls where we spent a fabulous evening and part of Wednesday with our friends Dick and Lois.  We got to Rochester a little later than we had planned but the weather was good and the drive uneventful.  I did relieve Skip for about an hour on our way to Souix Falls ~ felt so good to be driving! 

I had three appointments on Thursday, April 14.  I had some tone and pressure testing done in the Dizziness and Balance clinic and then on to see the ENT.  He ruled out about five different things that it "could" have been, which would have involved another surgery, but he couldn't tell me why I have the tone sensitivity in my left ear, the pain, the vibration sensation I get from my own voice, nor the feeling of pressure in my right ear.  He thinks since I have made such great progress in the past six weeks that he is hoping that my body will "desensitize" itself to the tone sensitivity and the pain will resolve over time.  Did he find anything?  No, but he did find things that it was not and for that I am relieved.  My case is unusual and beyond what they have the ability to test for.  God knows and I praise Him for answers we did get.

I also saw the neurologist in charge of my case.  He was very pleased with my progress; he thinks there is no reason I shouldn't have a "full" recovery over time.  I will always have the problem with quick turns of the head, especially to the left but I will learn to adjust to that also.  He reviewed all the charts, scans, notes and information but again, no definitive answer to the problems.  There are just some things that they don't have the capability to test for and the problems I'm having fall into that category.  I am pleased and thankful for the diagnosis I did get which has been the reason I am where I am today on the road to recovery, the problem with the clotting disoder that was discovered and the things that we know that are not.  Did I get all the answers I wanted?  No.  Do I feel this was worthwhile?  Absolutely.  I believe God led us here but this is the end of the Mayo Journey. 

I was reading Ps. 31: 7-8 Wednesday evening, the words just spoke to me but I couldn't quite understand why.  Now that I've had my appointments and realize what God was saying to me now. 
Ps. 31: 7-8 " I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul.  You have not handed me over to the enemy but have set my feet in a spacious place."  God knew what I was feeling, the "enemy" (all the problems) have not defeated me and the "spacious place", I realize is the future.  I can look back and see where I have been but now I look to the future and what God has planned for me.

 At the beginning of the blog in September 2010 I wrote that God is Great and God is Good.  I absolutely believe He Is, I have experienced His Greatness and His Goodness personally.  And so I say, Praise God for all He has done!   "My times are in Your hands"  Ps. 31: 15

I will continue to update as I progress because "the journey " has not ended.  I'm so thankful to all of you who have prayed, encouraged, supported and continued to support Skip and I.  Thank you, thank you, thank you, all!! 

Blessings,
Jeanne

Great Progress

Just wanted to let everyone know how well I am doing since we came back from Mayo Clinic.  I did the therapy they gave me at Mayo and improved quickly.  My balance is much better and the nauseau is mostly gone which is such a relief.  I also started therapy in Custer because I felt I had reached the point where I needed to have more challanging activities.  I was given several exercises to do and have been amazed at how quickly my brain is responding.  The biggest news ~ I am driving!  It was 6 months and 8 days the last time I drove.  Wow!!   And my PT INR has been at a therapeutic level for 3 weeks and seems to be staying steady.  All the praise goes to God!

I have another appointment on April 14 at Mayo so we will be leaving early next week.  I have more testing and appointments with and ENT and the neurologist who is in charge of my case.  Still some issues but I am so much better than just a few weeks ago. 

Praise God for His goodness and grace.  Thanks for all your continued prayers.

Blessings,
Jeanne

Back home

I am so thankful to be back home looking out over the beautiful Black Hills and watching the God blaze the sunset over the sky.  How I missed seeing His beauty all around me.  Its so easy to forget that God is everywhere when all you see is mostly big buildings, concrete sidewalks and paved streets full of cars going too fast. So as I sit here looking over the hills I am sure of where my help comes from; it comes from the Lord, Maker of heaven and earth. 

I had my last appointment for this round at Mayo on Monday, March 14.  While I was gone I had my PT-INR tested twice and both times the INR went down despite the increase in dosage of Warfarin so the Neuro department thought I should have some testing done and see the hemotologist.  It was a very interesting visit and productive.  They did discover that I have an abnormal clotting factor in my blood; which they believed caused the start of the Dural AVM Fistula.  At some point I had a clot in my brain that caused the abnormal growth of vessels to "feed" the part of the brain that was being deprived.  There is an enzyme in my blood that is caused by a virus that puts me at a high risk for clotting and the enzyme is resistant to the blood thinners.  Now we can understand why I can't get my INR at a therapeutic level and keep it there.  They are also doing further testing to see if this could also be genetic.  I will have to be on blood thinners the rest of my life because of the danger if having a clot anywhere at anytime.  God is leading us step by step to find the answers. 

I go back on April 14, 2011 for more testing in the balance clinic.  They are going to do pressure testing and also tones because these are two things that can cause me to feel off balance at any point.  I will also see an ENT and then follow up with Dr. Eggars (the nuerologist in charge of my case).  There is still the issue of my own voice making me feel like my brains are vibrating, I still can't walk in a store and turn my head and the issue of the transient pain on the left side. 

The balance is much better and I'm not always nauseous!!  I can sit up in the car and watch the road so I'm hoping I will be driving soon.  There are so many things for which to give God Praise and I do.   Mostly, I praise Him for Skip and his support, patience and love, for all my family; which includes so many, many friends who have  supported and encouraged me.  I know this journey isn't over and there may be more bumps in the road but I do know that I'm not alone!

Ps 150: "Let everything that has breath praise the Lord.  Praise the Lord."

If there is more news I will update before the next appointment.  Please keep praying for the doctors as they continue to review my case.  Blessings to all of you.
Jeanne

Round One is Done

We finished up Jeanne’s appointments on Wednesday morning. One was a neuro surgeon consult. We believe his task was to review the embolization films and look for any issues that could be causing Jeanne’s symptoms. He said that probably the embolization is the cause but he could see nothing out of the ordinary in the films.

Our next appointment was a blood draw. They want a comprehensive study of her clotting factors. There is speculation that the AVM started because of a clot. We will review that information on our way back to SD on March 14^th.

We are in Naperville spending time with Andrea, Randy and the grandchildren until our return to Mayo.

There will be no more news for a few days. Thank you for checking the blog and for your prayers.

Skip

More doctors

Since we were done last week by Thursday, we took a break and went up to Minneapolis to see our son Peter and have a change of pace.  We came back to Rochester on Sunday evening for my appointment with the neurologist on Monday.  He was very pleasant but it wasn't until almost the end or our conversation that I finally got his attention.  His specialty within neurology is the vestibular nerve and other balance issues so that was where he was camped.  He couldn't give a good explanation for the "vibrating" feeling I have in my brain when I talk, the constant head pain (not headache) and pressure and the nausea.  There is no doubt the vestibular nerve on the left is functioning only slightly, but that is only a piece of the puzzle.  He finally came to that conclusion and ordered a CT scan specifically to look at the bone structure in the inner ear.  I have an appointment with a vascular neurologist this afternoon and a neuro surgeon tomorrow morning.  They are familar with my vascular problems and will understand more what has been done and is possibly causing the problems.  If they want more testing we are going to try scheduling that for more of the middle of March so we can get to Chicago and see our daughter and family then we will stop here on the way back if needed.

God gave me a verse before I went yesterday;  Deut. 31:16   "So be strong and courageous.  Do not be afraid or panic before them.  For the Lord your God will personally go ahead of you.  He will nver fail you or abandon you."  He was definitely there in the room giving me the courage to continue to ask questions and guide the conversation.  I'm counting on that today! 

Until the next post
Blessings to all,
Jeanne

Another day at Mayo

After a long day yesterday, a little down time in the motel and a good nights sleep I started this morning with the vestibular therapy session at 8AM.  Before starting the therapy he told me that 92% of the vestibular nerve on the left is damaged, leaving only 8% to try to communicate with the right side of my brain.  Any wonder I am having problems with balance.  It is amazing how observant the therapist was and picked up on the major problems I was having with my balance in standing and walking.  We went through about 6 exercises & tips to start with to train my brain on the right side to compensate for the deficit on the left.  I "quickly" started doing the things he told me because I am ready to get my brain "trained"!!  He said I should see significant improvement in about a month.  I will be looking for a PT in our area but if I can't find one I can call him for more exercises.  The exercises are simple and short in duration but should be very effective.  He said the biggest mistake I can make is to "over due".  That doesn't sound like me, does it??

The second appointment was very interesting in the Behavioral Medicine Clinic.  (Psychology and Psyciatry).  I really was hesitant to keep that appointment but was glad I did.  It is part of the diagnosing and team concept in patient care.  I talked with the PhD psychologist; he was very pleasant and very  informative. He had reviewed my file and the testing I had yesterday along with the doctors notes from the Dizziness and Imbalance clinic. After reviewing the questionaire I filled out and speaking to him, he is certain I do not have CSD; part of yesterday's diagnosis.  That is good news because I don't have this cycle to break. Gotta love having so many eyes looking over my case!  Monday is my last appointment with Dr Eggars, the neurologist.  I still have the issue of the continuous pain on my left side. 

It is so uplifting to have so many praying and helping me through this journey.  God has blessed my greatly! 

Is. 41:13  For I am the Lord your God, Who takes hold of your right hand and says, " Do not fear; I will help you."
Blessings to all,
Jeanne

Big day at Mayo

We made it safely to Mayo Monday afternoon.  We went as far as Sioux Falls Friday and spent the weekend with our friends Dick and Lois Howard.  Had a fabulous time with them.  Left Monday morning in a snow storm and poor Skip had to drive the entire way in snow and ugly road conditions.  Praise God that we made it with no mishaps.

We spent the entire day today testing!  It started with a hearing test (I passed ~ no problems), next was the balance test.  Its just what it is, testing my balance in this half circle machine.  I even had a harness on to keep me from falling. It tells them what part of the balance system I am relying on.  Next was the rotary-chair; it went in an arc, circle, in the light, in the dark.  I had these lovely goggles on which kept track of my eye movements while the chair did its thing.  The last one was an ENG which records the interaction of the eye movement and inner ear.  That was the most unpleasant one.  All these tests took about 3 1/2 hours.  We then had the consulatation with Dr. Shepard, the head of the Imbalance and Dizziness Clinic.  The diagnosis: my vestibular nerve is severely damaged, it does not repair itself.  He thinks it was damaged during the first embolization and probably further damage occured during the second.  Because the vestibular nerve is the balance mechanism for the left side it is sending mixed signals to my brain, thus the imbalance.  He also said I have 2 out of the 4 criteria suggesting I am having migraines.  The official diagnosis, from his clinic, is chronic subjective dizziness (CSD).  He is saying the pain I am experiencing on the left ,is part of the migraines and that my brain has "trained" itself to be off balance.  Movement triggers the headaches and the mixed signals and I am stuck in this cycle.  I will start vestibular therapy tomorrow and, if all goes the way it as they expect, I should see improvement in a few weeks with the expectation that I will be back to "normal" within 3 months.  I will always have a problem with turning my head to the left quickly because of the damage.  I have more testing tomorrow and then the final consultation with the neurologist on Monday, Februay 28th.  There could be more components to this, but this is the diagnosis as of today.

Until the next post:  Ps. 27:14  Wait for the Lord; be strong and take heart and wait for the Lord. 

Please continue to pray for a complete and accurate diagnosis.

Blessings to all,
Jeanne