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Gait Assessment---FINALLY!!
Hi Everyone,
Well the long awaited day finally came for me and I wanted to share it with everyone. I live in Canada (BC) and I found that it has been extremely difficult to find anyone who knows anything about Chiari as far as specialists go. I am hoping what I have to say is going to put some hope into some of you in the same situation!!
So I come in and immediately I am feeling a little self concious. They have all these cameras set up and about 5 people manning them. I had to walk up and down this carpet about 6 times while they taped me. After the taping, my Physiatrist, an amazing woman, asked me if I was comfortable to tell my story to the med students there. So I told them everything, all the humiliation, the rejection...after I was done my Dr told them to remember this and that when they get into practice to not write people off, to listen to them!! It made me so happy that one day down the road what I was doing might help someone else!!
Then they took me into the consulting room and took some measurements of my leg (flexion ect...) They kept saying stuff like "that's usual", I was like "nothing about me has followed a normal pattern!!".
They commented on my usual flexibility and so I saw a small window open and I told the Dr's about how EDS had been tied into Chiari and could I possibly have it? Lucky for me, they actually see cases of EDS in there and my Physiatrist was really intrigued with the connection. She actually offered to do some more research into it and that we would talk about it when I see her again. The downside is that she said there is not a lot of research done in Canada and that she only knows one Dr that does skin biopsies and he is back East. She mentioned that you could hire a geneticist but of course that's a lot of $$$$. So I am thinking on that one...
In the end, my Dr said that she and the Physiotherapist (who was excellent as well) are still not sure how to proceed with me. They mentioned botox but then they think that my leg muscles are going spastic when I walk b/c that is the only way I can walk. So they don't want to botox me and take away the ability for me to walk... So she decided that she's going to present me!!!!!! That means, that all the DR's in my area get together to look over cases and get opinions and I'm going to be one of those cases!!! I am unbelievably excited about this, it ups my chances greatly...one of those Dr's may just know what it going on. Even if they don't, this is a huge opportunity for me to get the word out about Chiari and the effects of it...so many Dr's here can't even pronounce it.
This meeting takes place at the end of November so I am waiting with baited breath to hear what comes of it in December. Meanwhile, they are sending me to a neuro-physiotherapist at the hospital, which means not only will l get care in a more specified field but that it is also covered by BC medical...hooray! The waiting list is probably a few months long but at this point I'm used to it!!
So..if any of you post-surgery get the chance to go see one of these Drs (Physiatrist or rehab dr's) DO IT!! It is the most amazing, validating experience I've ever had next to meeting with my NS!!!
Sorry for the long post:)
Carolyn
Well the long awaited day finally came for me and I wanted to share it with everyone. I live in Canada (BC) and I found that it has been extremely difficult to find anyone who knows anything about Chiari as far as specialists go. I am hoping what I have to say is going to put some hope into some of you in the same situation!!
So I come in and immediately I am feeling a little self concious. They have all these cameras set up and about 5 people manning them. I had to walk up and down this carpet about 6 times while they taped me. After the taping, my Physiatrist, an amazing woman, asked me if I was comfortable to tell my story to the med students there. So I told them everything, all the humiliation, the rejection...after I was done my Dr told them to remember this and that when they get into practice to not write people off, to listen to them!! It made me so happy that one day down the road what I was doing might help someone else!!
Then they took me into the consulting room and took some measurements of my leg (flexion ect...) They kept saying stuff like "that's usual", I was like "nothing about me has followed a normal pattern!!".
They commented on my usual flexibility and so I saw a small window open and I told the Dr's about how EDS had been tied into Chiari and could I possibly have it? Lucky for me, they actually see cases of EDS in there and my Physiatrist was really intrigued with the connection. She actually offered to do some more research into it and that we would talk about it when I see her again. The downside is that she said there is not a lot of research done in Canada and that she only knows one Dr that does skin biopsies and he is back East. She mentioned that you could hire a geneticist but of course that's a lot of $$$$. So I am thinking on that one...
In the end, my Dr said that she and the Physiotherapist (who was excellent as well) are still not sure how to proceed with me. They mentioned botox but then they think that my leg muscles are going spastic when I walk b/c that is the only way I can walk. So they don't want to botox me and take away the ability for me to walk... So she decided that she's going to present me!!!!!! That means, that all the DR's in my area get together to look over cases and get opinions and I'm going to be one of those cases!!! I am unbelievably excited about this, it ups my chances greatly...one of those Dr's may just know what it going on. Even if they don't, this is a huge opportunity for me to get the word out about Chiari and the effects of it...so many Dr's here can't even pronounce it.
This meeting takes place at the end of November so I am waiting with baited breath to hear what comes of it in December. Meanwhile, they are sending me to a neuro-physiotherapist at the hospital, which means not only will l get care in a more specified field but that it is also covered by BC medical...hooray! The waiting list is probably a few months long but at this point I'm used to it!!
So..if any of you post-surgery get the chance to go see one of these Drs (Physiatrist or rehab dr's) DO IT!! It is the most amazing, validating experience I've ever had next to meeting with my NS!!!
Sorry for the long post:)
Carolyn
Thanks Ray...that was some really good information.
It's funny, I looked up some info on the functions of the cerebellum etc...and it turns out that it has different lobes and functions. What really caught my attention is the bottom portion is what affects balance and gait!! Which would be the part that was probably squished against my skull. It's called the Flocculonodular lobe(aka vestibulocerebellum)..which surprisingly enough also receives visual and sensory input. So reading that really put things in perspective for me.
If anyone wants to take a look: http://en.wikipedia.org/wiki/Cerebellum
Keep scrolling down and you will see a pic of the cerebellum "unrolled" and it explains it in good detail.
I just wished someone had explained this to me in the beginning...I am a person who needs to know things!!!
Carolyn
It's funny, I looked up some info on the functions of the cerebellum etc...and it turns out that it has different lobes and functions. What really caught my attention is the bottom portion is what affects balance and gait!! Which would be the part that was probably squished against my skull. It's called the Flocculonodular lobe(aka vestibulocerebellum)..which surprisingly enough also receives visual and sensory input. So reading that really put things in perspective for me.
If anyone wants to take a look: http://en.wikipedia.org/wiki/Cerebellum
Keep scrolling down and you will see a pic of the cerebellum "unrolled" and it explains it in good detail.
I just wished someone had explained this to me in the beginning...I am a person who needs to know things!!!
Carolyn
I was misdiagnosed with Menears disease then they thought I had Benign Positional Vertigo and it was when I was being investigated for this that they found I had CM. My ENT did not know what CM was and asked for a Neurosurgery review. I do feel there is a link between problems with the vestibular system & CM. Quiet a few ppl start out going to an ENT before they eventually get to see a NS.
Ray
Ray
Hi Ray
I find this info very informative as years ago I was diagnosed with labrnythitis, then things got worse and 3 years on and lots of tests here I am.
But while in the ENT diagnosis stage they found I had a hypersensitive vestibular system, dismissed it and referred me to Neurology, from here they found mild cm.
Nobody has ever made a link Is there one???? ENT at my hospital never discussed it then discharged me saying there is nothing wrong with you, alter your lifestyle and you will fine.
There has to be links here somewhere, dont you think???
Niki x x
I find this info very informative as years ago I was diagnosed with labrnythitis, then things got worse and 3 years on and lots of tests here I am.
But while in the ENT diagnosis stage they found I had a hypersensitive vestibular system, dismissed it and referred me to Neurology, from here they found mild cm.
Nobody has ever made a link Is there one???? ENT at my hospital never discussed it then discharged me saying there is nothing wrong with you, alter your lifestyle and you will fine.
There has to be links here somewhere, dont you think???
Niki x x
Hi Carolyn, I got this on line and thought it may be of help :)
Ray
Signals from the vestibular system also project to the cerebellum........
The vestibular system in the brain does more than just allow us to stand upright, maintain balance and move through space. It coordinates information from the vestibular organs in the inner ear, the eyes, muscles and joints, fingertips and palms of the hands, pressors on the soles of the feet, jaw, and gravity receptors on the skin and adjusts heart rate and blood pressure, muscle tone, limb position, immune responses, arousal and balance.
Vision is an important component of the vestibular system. About twenty percent of visual neurons respond to vestibular stimulation (e.g. when spinning, head shaking, or rocking). Adults who have suffered damage to the vestibular organs of the inner ear can learn to depend on visual information to maintain their balance. However, If that visual information is removed or distorted (e.g. in the dark or when there is conflicting visual information about the horizon as when standing on a balcony), the individual will feel as if they are drifting or falling.
The auditory system is also highly involved in vestibular functions. The vestibular and auditory nerves join in the auditory canal and become the eighth cranial nerve of the brain. Anything that disrupts auditory information can also affect vestibular functioning. Blocked eustachian tubes in the inner ear, for example, create mild balance problems.
There are also other systems that provide sensory information to the vestibular system. The hands and fingers, for example, send information to the brain about therelationship between the body and stationary surfaces in the environment. If the brain loses information from the vestibular organs of the inner ear (e.g. when there is fluid in the eustachian tubes) balance can be maintained by simply touching a vertical or horizontal surface with the fingertips.
The pressors on the soles of the feet provide important information to the vestibular areas of the brain about the texture of the ground. This information is used to calculate weight and posture adjutments that will allow upright balance and movement.
The facial or trigeminal nerve (which lies along surface of the face and eyes) and the masseter muscle of the jaw also respond to vestibular information. Chin tapping, for example, provides vestibular stimulation and vestibular stimulation innervates the masseter.
Ray
Signals from the vestibular system also project to the cerebellum........
The vestibular system in the brain does more than just allow us to stand upright, maintain balance and move through space. It coordinates information from the vestibular organs in the inner ear, the eyes, muscles and joints, fingertips and palms of the hands, pressors on the soles of the feet, jaw, and gravity receptors on the skin and adjusts heart rate and blood pressure, muscle tone, limb position, immune responses, arousal and balance.
Vision is an important component of the vestibular system. About twenty percent of visual neurons respond to vestibular stimulation (e.g. when spinning, head shaking, or rocking). Adults who have suffered damage to the vestibular organs of the inner ear can learn to depend on visual information to maintain their balance. However, If that visual information is removed or distorted (e.g. in the dark or when there is conflicting visual information about the horizon as when standing on a balcony), the individual will feel as if they are drifting or falling.
The auditory system is also highly involved in vestibular functions. The vestibular and auditory nerves join in the auditory canal and become the eighth cranial nerve of the brain. Anything that disrupts auditory information can also affect vestibular functioning. Blocked eustachian tubes in the inner ear, for example, create mild balance problems.
There are also other systems that provide sensory information to the vestibular system. The hands and fingers, for example, send information to the brain about therelationship between the body and stationary surfaces in the environment. If the brain loses information from the vestibular organs of the inner ear (e.g. when there is fluid in the eustachian tubes) balance can be maintained by simply touching a vertical or horizontal surface with the fingertips.
The pressors on the soles of the feet provide important information to the vestibular areas of the brain about the texture of the ground. This information is used to calculate weight and posture adjutments that will allow upright balance and movement.
The facial or trigeminal nerve (which lies along surface of the face and eyes) and the masseter muscle of the jaw also respond to vestibular information. Chin tapping, for example, provides vestibular stimulation and vestibular stimulation innervates the masseter.
Hello Everyone!
Just thought that I'd give you an update...
So I saw the neuro-physio people for an "interview", basically talking to me about all my issues and trying to figure out where to go from here. What I found interesting is that when they looked at my gait video, they didn't see spascity or dystonia which means that they don't think that involuntary muscle movements are causing my gait difficulty. What they did say is that they can see a lack of coordination of my muscles causing a spastic like appearance. So they are pretty sure that is what is causing it, my muscles are not working properly together which cause the jerky, stiff walk that I have. It totally made sense to me b/c whenever I walk it always feels like my legs are several speeds behind my brain (if that makes any sense at all).
They also told me some other things about the cerebellum...that it's also connected somewhat with the coordination of your hearing and vision which could explain why that is affected but no one can tell me why!! So, I realized that probably the main issue with me is due to some damage of my cerebellum. I really didn't realize how much could be affected by that part of our brain!!
So...I know have to go for another assessment on the 3rd with an ortho-physio and I am hoping that I will be one step closer to figuring it out. They are sending me to him b/c of the pain in my spine and joints...I know a lot of us have that here so I am hoping that I can find something out that I can share with you!!
Carolyn
Just thought that I'd give you an update...
So I saw the neuro-physio people for an "interview", basically talking to me about all my issues and trying to figure out where to go from here. What I found interesting is that when they looked at my gait video, they didn't see spascity or dystonia which means that they don't think that involuntary muscle movements are causing my gait difficulty. What they did say is that they can see a lack of coordination of my muscles causing a spastic like appearance. So they are pretty sure that is what is causing it, my muscles are not working properly together which cause the jerky, stiff walk that I have. It totally made sense to me b/c whenever I walk it always feels like my legs are several speeds behind my brain (if that makes any sense at all).
They also told me some other things about the cerebellum...that it's also connected somewhat with the coordination of your hearing and vision which could explain why that is affected but no one can tell me why!! So, I realized that probably the main issue with me is due to some damage of my cerebellum. I really didn't realize how much could be affected by that part of our brain!!
So...I know have to go for another assessment on the 3rd with an ortho-physio and I am hoping that I will be one step closer to figuring it out. They are sending me to him b/c of the pain in my spine and joints...I know a lot of us have that here so I am hoping that I can find something out that I can share with you!!
Carolyn
Before I finally got an appt with the chiari specialist, I had thought about going to a Physiatrist, but I haven't found any around here. I am sure they probably have them at the Cleveland Clinic but I really didn't check up on one. I am glad it worked out for you, that is wonderful! :) It is good to hear a happy story of someone getting help.
LOL..trust me, the grass is definitely not greener over here! I had a nightmare of a time getting a dx in a world where most Drs can't even pronounce it!!
I got word the other day that I am on the neuro-physiotherapy list at the hospital but it's a 2 month wait. I am not entirely surprised...I guess it's good b/c I can get Christmas out of the way b4 I have to buckle down and work on myself :)
Also, it looks like they are ordering a few test that may look for EDS so I am just waiting to hear what they are.
I will let you guys know when I hear more!
Carolyn
I got word the other day that I am on the neuro-physiotherapy list at the hospital but it's a 2 month wait. I am not entirely surprised...I guess it's good b/c I can get Christmas out of the way b4 I have to buckle down and work on myself :)
Also, it looks like they are ordering a few test that may look for EDS so I am just waiting to hear what they are.
I will let you guys know when I hear more!
Carolyn
Carolyn I am so happy for u. I think being heard is more important than getting better sometimes.
It is easy to accept that nothing can be done when u know your doctors have done everything they can but when they ignore u the back of your mind always says there is something put there they aren't telling me
I sure hope u get answers though
And I knew we should have moved to Cananda. Lol.
It is easy to accept that nothing can be done when u know your doctors have done everything they can but when they ignore u the back of your mind always says there is something put there they aren't telling me
I sure hope u get answers though
And I knew we should have moved to Cananda. Lol.
so so AWESUUUUMMMM!!! Cant wait to open a medical mag at one of "those" appointments and see that brilliant smile with the words CURED somewhere around there!!
you so rock (and im secretly jeaslous that you had all of those piranha med school docs nibbling all over you...... they were all probably so anxious to figure you out and be the class hero. thats fantastic attention as far as im concerned)
cant wait to see what is to come!!
jilian
you so rock (and im secretly jeaslous that you had all of those piranha med school docs nibbling all over you...... they were all probably so anxious to figure you out and be the class hero. thats fantastic attention as far as im concerned)
cant wait to see what is to come!!
jilian
To everyone who responded- Thanks gals!! You are all such an awesome support, we are so lucky to have each other here to celebrate when we do make some progress!! We ALL deserve a ribbon and a gold star...we are all true fighters!
Selma- The botox...I think what they are saying is that they only like to use it if they are SURE that it is going to be positive for you. With me, when I lay down and am not trying to support myself, my leg muscles are in a relaxed state (unlike before surgery) so they don't consider me as truly "spastic". When I stand and walk, my legs muscles do get stiff and I walk very jerky and straight legged but they think I do that b/c I have such looseness of joints and possibly some muscle are not working properly that tensing my muscles is the only way that I can keep myself upright and moving. If they were to make those muscles relax, it could cause me not to be able to hold myself upright and together to walk. However, they have told me that there may be a benefit to using a very tiny portion to give the unused muscles some room to start working. But they don't want to do anything until they figure out exactly what is going on...which is fine with me!!
Niki- I would bet that your gait issues are definitely related. I started to walk with my left leg out first and then it went to both and I walk with a very wide stance. It's interesting that you mention how painful it is to walk with your legs aligned, that is the same for me. If I do try, I walk very jerky, start to fall over and it really hurts my back. It's something to do with the muscles not working in a coordinated manner and then of course, balance. I would make sure you mention this if you haven't already!!
Again, you guys are the greatest xxx
Carolyn
Selma- The botox...I think what they are saying is that they only like to use it if they are SURE that it is going to be positive for you. With me, when I lay down and am not trying to support myself, my leg muscles are in a relaxed state (unlike before surgery) so they don't consider me as truly "spastic". When I stand and walk, my legs muscles do get stiff and I walk very jerky and straight legged but they think I do that b/c I have such looseness of joints and possibly some muscle are not working properly that tensing my muscles is the only way that I can keep myself upright and moving. If they were to make those muscles relax, it could cause me not to be able to hold myself upright and together to walk. However, they have told me that there may be a benefit to using a very tiny portion to give the unused muscles some room to start working. But they don't want to do anything until they figure out exactly what is going on...which is fine with me!!
Niki- I would bet that your gait issues are definitely related. I started to walk with my left leg out first and then it went to both and I walk with a very wide stance. It's interesting that you mention how painful it is to walk with your legs aligned, that is the same for me. If I do try, I walk very jerky, start to fall over and it really hurts my back. It's something to do with the muscles not working in a coordinated manner and then of course, balance. I would make sure you mention this if you haven't already!!
Again, you guys are the greatest xxx
Carolyn
That is so awesome you get to have a "good" moment with this. I really hope that with a bunch of doctors putting their heads together you can get some answers. Good luck!
Fantastic news honey, its the same over here in England not a lot of experts to go between those of us who suffer!!!!
Keep us all posted.
Like you my gait is affected but nobody has picked up on this, my right leg turn outwards now by a noticiable amount to me, if I try to walk normally legs aligned its painful, my right shoes are also noticiably more worn down at the heel than my left????????
Dont no if it all connected yet as still waiting fr all my results at clinic on 22nd nov, up to now adiologist reports mild cererbral ectopia, and have been recalled for mri with contrast on 10th Nov..
Niki x x x
Keep us all posted.
Like you my gait is affected but nobody has picked up on this, my right leg turn outwards now by a noticiable amount to me, if I try to walk normally legs aligned its painful, my right shoes are also noticiably more worn down at the heel than my left????????
Dont no if it all connected yet as still waiting fr all my results at clinic on 22nd nov, up to now adiologist reports mild cererbral ectopia, and have been recalled for mri with contrast on 10th Nov..
Niki x x x
That's awesome Carolyn!!! I'm so happy for you - you must be almost floating after that experience. It's wonderful to hear they set themselves up to listen and learn from you.
I vote for a blue ribbon to go with the gold star!
Lisa
I vote for a blue ribbon to go with the gold star!
Lisa
COMMUNITY LEADER
It is about time...wow...so happy for u.....we all know that we have to wait for answers so I am sure u can hold out a little longer to find out a bit more : )
Explain to me the botox comment...they didn't want to stop ur ability to walk????Botox has been a topic many times on the forum and if u can shed light on what ur dr meant that could prove helpful......
Speaking of which...Fantastic...u were teaching drs....not just what chiari is or how to say it, but how to listen to their patients...whoooooooohoooooo u get a gold star!!!
"selma"
Explain to me the botox comment...they didn't want to stop ur ability to walk????Botox has been a topic many times on the forum and if u can shed light on what ur dr meant that could prove helpful......
Speaking of which...Fantastic...u were teaching drs....not just what chiari is or how to say it, but how to listen to their patients...whoooooooohoooooo u get a gold star!!!
"selma"
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