OnGoing AN Struggle - A Quick Update
I wanted to share a couple of updates that I have been sharing on ANAUSA which has a discussion board for Acoustic Neuroma patients and caregivers.
Update from June 8, 2014
I saw the balance Physical Therapist on June 6th. She is a PHD who runs the balance physical therapy at Boone hospital in Columbia, MO.
Spent an hour with her on this first visit doing exams and talking about the sudden onset of balance issues and any other things that may have caused it. I have 3 sets of vestibular exercises that I am to do 3-4 times a day. She cut back on how much she wants me to do since 'I am trying to work full time'. She also seemed concerned about our upcoming vacation and how much I am going to be able to do at the lake. So far the exercises are kicking my butt so I hope they are retraining my brain. This week will be challenging with work, new exercises, and life in general.
I am to call her next week and follow up appointment on the 27th after her and our vacations. She will run some tests then to determine if I need to go to another Neurologist. She made it very clear that the exercises may or may not solve the problem. We will know a lot more in 3 weeks.
I have seen 3 Dr.s since switching hospitals and the service and support have been wonderful. Never feel like it is not worth getting another opinion or that you have to much invested in your current hospital or Dr. If you are not getting answers get another opinion, it makes a huge difference!
Update from June 27, 2014
Had my follow up appointment with the PHD PT today. She ran some tests that kicked my butt!!!
The motor control tests were first. These are were the platform moves forward or backwards while I am standing on it. It measures my response time. All the tests came back in normal range. My wife said one of the forward movement tests was abnormal, but when combined with the rest of that set they came out as in the normal range.
Then we did the sensory organization test. 6 different scenarios with the platform moving in various manners, the structure moving (causing perception changes), and eyes open or closed. The test gets more challenging as it progressed from test 1 to test 6, and 2 tries for each test. The first 3 I tested in normal range, the forth was mixed result, and the 5th and 6th I fell. Meaning my toes or heels came off the platform. For me the falls were true falls, the Dr. caught me several times.
These tests help to determine if the balance issues are caused by visual, vestibular, or joint sense. In my case the joint sense and visual are normal, which was somewhat surprising with how much my eyes hurt. While we expected the vestibular rating to be below normal, since I only have one functioning nerve the test came back as no function at all. My non severed nerve and brain are not working together to help me balance at all.
The results are the first to point us in any direction and for that we are very thankful. My next stop is with another neurologist, but now we have something to focus on now.
Having had an MRI last August I am fairly confident that I do not have another AN on the right side this time.
More to come in this story as I do not believe this is my new normal.
Update from today July 3, 2014
Have my referral to a new Neurologist and am excited as he is highly thought of. The only drawback is that the appointment is two months out. I have had symptoms for almost a year and have not driven more than a mile at a time in 6 months. I was really hoping for a quicker response. As it is, I am sure he will want some tests done and it may take another month or two to have answers after my appointment. Due to not driving, etc... my 'world' is pretty darn small I was hoping it would get back to normal soon. The bicycle is calling my name, but it is not safe and does not look like it will be this year.
A little frustrated, yes. Thankful that God has brought me to 2 wonderful Dr.s in the last 2 months that have helped to figure out what is wrong, Absolutely.
On the waiting list and will take the first available cancelation. Praying someone cancels so I can get in much earlier.
God Bless,
Robert
Update from June 8, 2014
I saw the balance Physical Therapist on June 6th. She is a PHD who runs the balance physical therapy at Boone hospital in Columbia, MO.
Spent an hour with her on this first visit doing exams and talking about the sudden onset of balance issues and any other things that may have caused it. I have 3 sets of vestibular exercises that I am to do 3-4 times a day. She cut back on how much she wants me to do since 'I am trying to work full time'. She also seemed concerned about our upcoming vacation and how much I am going to be able to do at the lake. So far the exercises are kicking my butt so I hope they are retraining my brain. This week will be challenging with work, new exercises, and life in general.
I am to call her next week and follow up appointment on the 27th after her and our vacations. She will run some tests then to determine if I need to go to another Neurologist. She made it very clear that the exercises may or may not solve the problem. We will know a lot more in 3 weeks.
I have seen 3 Dr.s since switching hospitals and the service and support have been wonderful. Never feel like it is not worth getting another opinion or that you have to much invested in your current hospital or Dr. If you are not getting answers get another opinion, it makes a huge difference!
Update from June 27, 2014
Had my follow up appointment with the PHD PT today. She ran some tests that kicked my butt!!!
The motor control tests were first. These are were the platform moves forward or backwards while I am standing on it. It measures my response time. All the tests came back in normal range. My wife said one of the forward movement tests was abnormal, but when combined with the rest of that set they came out as in the normal range.
Then we did the sensory organization test. 6 different scenarios with the platform moving in various manners, the structure moving (causing perception changes), and eyes open or closed. The test gets more challenging as it progressed from test 1 to test 6, and 2 tries for each test. The first 3 I tested in normal range, the forth was mixed result, and the 5th and 6th I fell. Meaning my toes or heels came off the platform. For me the falls were true falls, the Dr. caught me several times.
These tests help to determine if the balance issues are caused by visual, vestibular, or joint sense. In my case the joint sense and visual are normal, which was somewhat surprising with how much my eyes hurt. While we expected the vestibular rating to be below normal, since I only have one functioning nerve the test came back as no function at all. My non severed nerve and brain are not working together to help me balance at all.
The results are the first to point us in any direction and for that we are very thankful. My next stop is with another neurologist, but now we have something to focus on now.
Having had an MRI last August I am fairly confident that I do not have another AN on the right side this time.
More to come in this story as I do not believe this is my new normal.
Update from today July 3, 2014
Have my referral to a new Neurologist and am excited as he is highly thought of. The only drawback is that the appointment is two months out. I have had symptoms for almost a year and have not driven more than a mile at a time in 6 months. I was really hoping for a quicker response. As it is, I am sure he will want some tests done and it may take another month or two to have answers after my appointment. Due to not driving, etc... my 'world' is pretty darn small I was hoping it would get back to normal soon. The bicycle is calling my name, but it is not safe and does not look like it will be this year.
A little frustrated, yes. Thankful that God has brought me to 2 wonderful Dr.s in the last 2 months that have helped to figure out what is wrong, Absolutely.
On the waiting list and will take the first available cancelation. Praying someone cancels so I can get in much earlier.
God Bless,
Robert
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