The On-going Medical Journey
For the past 10 months I have been dealing with increased balance and fatigue issues.
First doctor tried several drugs and even had me on valium for a couple of months.
Second doctor decided it was due to sleep issues and I had a sleep study, already use an APAP machine and the setting was the same. That was not the issue.
Third doctor wanted me to try Provigil, essentially prescription speed. He thought treating the symptoms would make me happy. Would have had helped with the fatigue not the balance issues and would have made me a bear to be around.
Fourth doctor listened and started us on a new path.
Fifth doctor ran some VNG tests, etc... and spend 2.5 hours with Alexis and I. Very informative we found out that the tests were normal. It tested for 70+ balance causing issues associated with the inner ear, they were not the problem.
Sixth doctor ran some additional balance testing and we found out that for some reason the balance nerve on my good side is not communicating with the brain correctly.
Seventh doctor ordered MRIs with and without contrast for the neck and brain once again. 3rd set in 3 years and was wondering if I had another tumor but on my good side. The MRIs all came back clear and no growth was present. He also stated I have hyper-reflexia which is my involuntary nerves are wired extra tight and respond with a kick ( ha ha ha).
Eight doctor, who is actually a doctor I was seeing in previous years to check for tumor re-growth, reviewed all the notes from the previous doctors. We met with him on Friday August 1st, and do not have a 100% diagnosis but still some things to try.
He has ruled out a couple of things:
The first doctor had notes stating it might be Endolymphatic Hydrops. One type is Meniere's and another type is similar but without having Meniere's. Based on some of the other tests, this is not it.
The Hydrop discussion lead to not wanting to do anything to sever the good balance nerve. Not sure what started this topic, it might have been the doctor thinking out loud. Needless to say if something has damaged the nerve or is causing it to deteriorate, they would not sever it since it is my only functioning balance nerve. Any level of balance nerve function is better than zero. Still scratching my head on why this came up, might have to ask him next time around.
It would not be related to my previous Acoustic Neuroma Tumor as it is on the other side of the head, nothing would have interfered with it and my body should be compensating by now. Doctor number five thought my body is now de-compensating for some reason, but could not identify the cause.
Confirmed that it was not an inner ear issue, since the VNG testing was normal.
Standard vestibular exercises only aggravates the situation and have not helped to retrain my brain.
This doctor did mention valium again, but after taking it for several months I do not want to do it and he agrees it most likely will not work.
So what is causing me to have on-going balance issues..... inquiring minds want to know.
The next step is to try two things.
1. Go to another doctor of physical therapy and talk about OptoKinetic exercises. From what I have researched this will not be fun, but I am ready to try about anything.
2. Going back to doctor number seven, who is a Neurologist and 30 minutes from home instead of 2 hours like doctor number eight. These doctors have worked in the past to help people with ocular and/or vestibular migraines. This is not something that can be tested for, but it is something that if the meds work you will know and it will be obvious if they do not.
Long journey so far and lots of 'it's not this, so lets try that' but at least we continue to move forward and have options. I am still holding onto my bicycle in anticipation of riding gravel roads once again. I am looking forward to the day I can drive more than a mile or two, I am counting on being able to do everything I was able to do a year ago.
"11 For I know the plans I have for you”—this is the Lord’s declaration—“plans for your welfare, not for disaster, to give you a future and a hope." - Jeremiah 29:11
I know that God IS in control and that He wants the best for me! Whatever comes out of the next couple of steps, I know it is what is meant to happen.
God Bless,
Robert
First doctor tried several drugs and even had me on valium for a couple of months.
Second doctor decided it was due to sleep issues and I had a sleep study, already use an APAP machine and the setting was the same. That was not the issue.
Third doctor wanted me to try Provigil, essentially prescription speed. He thought treating the symptoms would make me happy. Would have had helped with the fatigue not the balance issues and would have made me a bear to be around.
Fourth doctor listened and started us on a new path.
Fifth doctor ran some VNG tests, etc... and spend 2.5 hours with Alexis and I. Very informative we found out that the tests were normal. It tested for 70+ balance causing issues associated with the inner ear, they were not the problem.
Sixth doctor ran some additional balance testing and we found out that for some reason the balance nerve on my good side is not communicating with the brain correctly.
Seventh doctor ordered MRIs with and without contrast for the neck and brain once again. 3rd set in 3 years and was wondering if I had another tumor but on my good side. The MRIs all came back clear and no growth was present. He also stated I have hyper-reflexia which is my involuntary nerves are wired extra tight and respond with a kick ( ha ha ha).
Eight doctor, who is actually a doctor I was seeing in previous years to check for tumor re-growth, reviewed all the notes from the previous doctors. We met with him on Friday August 1st, and do not have a 100% diagnosis but still some things to try.
He has ruled out a couple of things:
The first doctor had notes stating it might be Endolymphatic Hydrops. One type is Meniere's and another type is similar but without having Meniere's. Based on some of the other tests, this is not it.
The Hydrop discussion lead to not wanting to do anything to sever the good balance nerve. Not sure what started this topic, it might have been the doctor thinking out loud. Needless to say if something has damaged the nerve or is causing it to deteriorate, they would not sever it since it is my only functioning balance nerve. Any level of balance nerve function is better than zero. Still scratching my head on why this came up, might have to ask him next time around.
It would not be related to my previous Acoustic Neuroma Tumor as it is on the other side of the head, nothing would have interfered with it and my body should be compensating by now. Doctor number five thought my body is now de-compensating for some reason, but could not identify the cause.
Confirmed that it was not an inner ear issue, since the VNG testing was normal.
Standard vestibular exercises only aggravates the situation and have not helped to retrain my brain.
This doctor did mention valium again, but after taking it for several months I do not want to do it and he agrees it most likely will not work.
So what is causing me to have on-going balance issues..... inquiring minds want to know.
The next step is to try two things.
1. Go to another doctor of physical therapy and talk about OptoKinetic exercises. From what I have researched this will not be fun, but I am ready to try about anything.
2. Going back to doctor number seven, who is a Neurologist and 30 minutes from home instead of 2 hours like doctor number eight. These doctors have worked in the past to help people with ocular and/or vestibular migraines. This is not something that can be tested for, but it is something that if the meds work you will know and it will be obvious if they do not.
Long journey so far and lots of 'it's not this, so lets try that' but at least we continue to move forward and have options. I am still holding onto my bicycle in anticipation of riding gravel roads once again. I am looking forward to the day I can drive more than a mile or two, I am counting on being able to do everything I was able to do a year ago.
"11 For I know the plans I have for you”—this is the Lord’s declaration—“plans for your welfare, not for disaster, to give you a future and a hope." - Jeremiah 29:11
I know that God IS in control and that He wants the best for me! Whatever comes out of the next couple of steps, I know it is what is meant to happen.
God Bless,
Robert
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