My Vestibular rehab exercises are making a huge differnce in my ability to cope with the loss of my balance center on my left side. The more I challenge it and practice the easier it is for me and the less dizzy and naseous I feel. I can't recommend this enough for Meniere's patients that have had some of there vestibular function permanently destroyed.
We have moved up the complexity of the exercises as well and I am doing some walking and head movement exercises to go with the eye ones I posted previously.
Tuesday, May 24, 2005
Allergy Testing
As I mentioned below various studies done show that aggresive allergy treatments including desensitization can help reduce the severity and frequency of Meniere's attacks.
My neurotologist is also an allergist and is having me undergo comprehensive allergy testing right now. What does comprehensive mean?
It means:
Over 175 under the skin injections of small amounts of allergin to see if I react (my doc says these injections are the absolutely most accurate way of testing for allergins and that the "prick" tests or blood tests really don't show all allergies present for most people)
Food and inhaled allergies are both being tested
Once they discover what I am allergic to they make up a shot that includes all those allergins that I inject at home once a week. This shot desensitizes my body to the allergens and greatly reduces there ability to affect my body. This reduces inflammation and stress on the inner ear.
My prick tests and blood test showed no active allergies, however when there is a lot of pollen in the air, etc... I DO react so I wasn't sure that was correct. My skin injection tests showed a strong allergic reaction to pollen and certain trees and molds. So I too feel it is much more accurate as a test.
My neurotologist is also an allergist and is having me undergo comprehensive allergy testing right now. What does comprehensive mean?
It means:
Over 175 under the skin injections of small amounts of allergin to see if I react (my doc says these injections are the absolutely most accurate way of testing for allergins and that the "prick" tests or blood tests really don't show all allergies present for most people)
Food and inhaled allergies are both being tested
Once they discover what I am allergic to they make up a shot that includes all those allergins that I inject at home once a week. This shot desensitizes my body to the allergens and greatly reduces there ability to affect my body. This reduces inflammation and stress on the inner ear.
My prick tests and blood test showed no active allergies, however when there is a lot of pollen in the air, etc... I DO react so I wasn't sure that was correct. My skin injection tests showed a strong allergic reaction to pollen and certain trees and molds. So I too feel it is much more accurate as a test.
Tuesday, May 10, 2005
ENG Results and Strategies
My ENG showed that my left ear has lost 96% of measurable balance function. I've only lost 45% of my hearing in that ear however.The doctor said that was very interesting and that she doesn't usually see such a high loss of balance vs hearing.
My right ear is still 100% on both hearing and balance.I was very surprised at how much balance function has been destroyed, as I am really compensating very well and didn't think that much was gone! I am continuing at my vestibular rehab and really hope to strengthen that compensation even more.
The ENG did make me dizzy of course during the test, but I didn't have an attack afterward, I was just generally unsteady for a little while.I got the tube put in my ear for Meniett and I start the device tomorrow morning. Don't really know what to expect. I assume that even though I've lost almost all of my balance function that MM could still cause vertigo attacks in the bad ear, and hopefully the Meniett will help me preserve the hearing I have left.
And of course, I've explained to my right ear that going bilateral, would really not help me out, and have asked it as nicely as possible to try not to do that...
My right ear is still 100% on both hearing and balance.I was very surprised at how much balance function has been destroyed, as I am really compensating very well and didn't think that much was gone! I am continuing at my vestibular rehab and really hope to strengthen that compensation even more.
The ENG did make me dizzy of course during the test, but I didn't have an attack afterward, I was just generally unsteady for a little while.I got the tube put in my ear for Meniett and I start the device tomorrow morning. Don't really know what to expect. I assume that even though I've lost almost all of my balance function that MM could still cause vertigo attacks in the bad ear, and hopefully the Meniett will help me preserve the hearing I have left.
And of course, I've explained to my right ear that going bilateral, would really not help me out, and have asked it as nicely as possible to try not to do that...
Sunday, May 01, 2005
A decision on the next level of treatment Meniett vs Surgery
As I detailed below, the level and frequency of my symptoms increased in Dec/Jan of '04.
When I visited my doctor's they recommended the next step as endo sac surgery (of which there are several types - I'll detail which they thought was best) or they said I could try the Meniett Box. Although they wouldn't make any guarantees about the Meniett and they said they are unsure why it works and don't feel the full weight of evidence is behind it yet.
The endo sac surgery being recommended by the House Ear Clinic was not your typical endo sac decompression or shunt. Rather, they have begun to believe that the sac itself may contain some of the cells responsible for causing the excess fluid build it up that they believe is the cause of symptoms in idiopathic endolymphatic hydrops version of Menieres (which is what they believe I have). As a result, while they do put a shunt in the surgeon told me he also typically scars the endo sac up quite a bit while he is in there in an attempt to destroy the cells he believes are causing some or all of the fluid production.
I had never heard of this version of endo sac surgery before. While the surgeon I spoke to is claiming 75% success rates anecdotally with this approach, he has not published a study on it. If he is right and the offending cells are located in the sac, and destruction/scarring of the sac will destroy those cells that is quite a find! But, at this point I believe it is only a guess (though a highly educated one) on his part.
I also purchased a book that discussed in detail the pro's and con's of endo sac surgeries (published in 1998) called "Treatment Options for Meniere's Disease, Endolymphatic Sac Surgery Do It or Don't Do It" by Arenberg and Graham. Got it for 10 bucks on eBay. The long shot of the book is lots of really smart ear doc's don't agree about the effectiveness of the surgery.
Two studies with in the last year show good results in testing the Meniett device and anecdotal evidence I've collected from menieres posting groups, etc... is also very positive for many people on the device. More people seem to be happy with that vs surgery, at least at first.
The Meniett is not thought to help everyone, but neither does endo sac decompression. I figured if I was going to start something new it should be the thing the doesn't require anyone cutting my inner ear open.
So on May 9th, I am starting the Meniett. I'll post here what I think of it, what it feels like to use it and if I have any correlating increase or decrease in symptoms.
I am ALSO getting thorough allergy testing done and as indicated by my doctor I am going to start allergy desensitization shots. These seemed to help me in the past, and allergy mitigation is starting to show a lot of promise in decreasing the severity and frequency of Meniere's symptoms on patients who have allergies.
When I visited my doctor's they recommended the next step as endo sac surgery (of which there are several types - I'll detail which they thought was best) or they said I could try the Meniett Box. Although they wouldn't make any guarantees about the Meniett and they said they are unsure why it works and don't feel the full weight of evidence is behind it yet.
The endo sac surgery being recommended by the House Ear Clinic was not your typical endo sac decompression or shunt. Rather, they have begun to believe that the sac itself may contain some of the cells responsible for causing the excess fluid build it up that they believe is the cause of symptoms in idiopathic endolymphatic hydrops version of Menieres (which is what they believe I have). As a result, while they do put a shunt in the surgeon told me he also typically scars the endo sac up quite a bit while he is in there in an attempt to destroy the cells he believes are causing some or all of the fluid production.
I had never heard of this version of endo sac surgery before. While the surgeon I spoke to is claiming 75% success rates anecdotally with this approach, he has not published a study on it. If he is right and the offending cells are located in the sac, and destruction/scarring of the sac will destroy those cells that is quite a find! But, at this point I believe it is only a guess (though a highly educated one) on his part.
I also purchased a book that discussed in detail the pro's and con's of endo sac surgeries (published in 1998) called "Treatment Options for Meniere's Disease, Endolymphatic Sac Surgery Do It or Don't Do It" by Arenberg and Graham. Got it for 10 bucks on eBay. The long shot of the book is lots of really smart ear doc's don't agree about the effectiveness of the surgery.
Two studies with in the last year show good results in testing the Meniett device and anecdotal evidence I've collected from menieres posting groups, etc... is also very positive for many people on the device. More people seem to be happy with that vs surgery, at least at first.
The Meniett is not thought to help everyone, but neither does endo sac decompression. I figured if I was going to start something new it should be the thing the doesn't require anyone cutting my inner ear open.
So on May 9th, I am starting the Meniett. I'll post here what I think of it, what it feels like to use it and if I have any correlating increase or decrease in symptoms.
I am ALSO getting thorough allergy testing done and as indicated by my doctor I am going to start allergy desensitization shots. These seemed to help me in the past, and allergy mitigation is starting to show a lot of promise in decreasing the severity and frequency of Meniere's symptoms on patients who have allergies.
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