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7mm chiari malformatio
I just found out last week that I have CM type I @ 7mm. I had an MRI of my spine today and should know the resuts next week. Should I be concearned about the 7mm. I have been told for one year that I have Meineres disease. My symptoms have become worse over the past year. Is it possible to be suffering from both or could it just be the CM? I feel like I may be worried for nothing. Help!!
THX.. Jenn
THX.. Jenn
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It is very possible the MVA caused the herniation...how ever a MVA can also trigger symptoms in a dormant herniation....
Many r born with Chiari and we do not consider ourselves symptomatic bcuz since we have these feelings and sensations as long as we r alive, they appear "normal" to us....
With more questions and the right ones u might find ur DS has had symptoms but was not aware that they were symptoms and just the way things were after doing a certain activity....
A good NS should be able to tell if the condition is acquired or congenital.
Since the MVA his symptoms can continue or may cycle and not reappear for months or yrs to the point he wants a Dr to take a look.....
Have they done a CINE MRI to see if there is a CSF obstruction?
We were in a mva in sept 2012 since then my 11 yr old has had a concussion they finally did an MRI now states he has chiari with 7 mm shift? Could the mva of caused this he had no symptoms before this?
COMMUNITY LEADER
Wonderful news...so glad they did not find nething else going on.
Several members have been misdx'd with meineres as the drs really do not thinks that chiari can cause the issues we have.....Once u get with a chiari specialist u will know if ur chiari is causing the issues.
Good luck
"selma"
Several members have been misdx'd with meineres as the drs really do not thinks that chiari can cause the issues we have.....Once u get with a chiari specialist u will know if ur chiari is causing the issues.
Good luck
"selma"
Got my spne MRI results today. THEY ARE NORMAL!! AWESOME NEWS.
Bad news is the Dr. thinks my problem is not related to the CM. He thinks that it is meineres.URGGG!! I am so tired of this back and forth mess. I just want them to locate the problem and fix it already. I am now in search of a CM specialist. I will keep you posted and I'm sure continue to ask many more questions.
THX-- Jenn
Bad news is the Dr. thinks my problem is not related to the CM. He thinks that it is meineres.URGGG!! I am so tired of this back and forth mess. I just want them to locate the problem and fix it already. I am now in search of a CM specialist. I will keep you posted and I'm sure continue to ask many more questions.
THX-- Jenn
COMMUNITY LEADER
U may have to travel to get to a dr that specializes in chiari and it is my opinion as to that is the best way to go.
We do have a thread with names of drs that members here have been to and liked...it is strongly advised that u research all drs to find the best one for u.
Sleep apnea is a related condition to chiari as is the fatigue...
The activities u were involved in may have triggered ur chiari , but sounds like u had symptoms for quite some time.
"selma"
We do have a thread with names of drs that members here have been to and liked...it is strongly advised that u research all drs to find the best one for u.
Sleep apnea is a related condition to chiari as is the fatigue...
The activities u were involved in may have triggered ur chiari , but sounds like u had symptoms for quite some time.
"selma"
Thank you all for your comments.I have never been in an accident or hit my head. I am a thrill junkie though. I love our local amusment park. I water skii and snow skii. Well not any more!!! It is hard for me to even sweep amd mop the floor now.
I have had virtigoonand off since I was 15. The past year has been terrible. The virtigo attacks come closer together and last longer. I now walk around(sometimes crawl) in a fog and it feels like I gently sway constantly. I have just recenlty started to get major headache and neckaches. I asked my dr. if I was crazy and he laughed and said no it was just part of the Meineres . Are the awful headache and body aches a part of this?
I am on a cpap machine b/c of the fatige. I now wonder if the fatige and sleep apnea is apart of the CM..?.. I just keep thinking that I will wake up one day and feel good and all aches, pains, and dizziness will be gone.
I am seeing Dr. Barr (Neurologist) at the Simon Willimson Center @ Princton Medical Center in Birmingham, Al.
Can any one suggets Neuro Dr. in Birmingh, Al
I want to get a second opinion!!
Thanks again for ll of your coments. I want tolearn all I can about this.
I have had virtigoonand off since I was 15. The past year has been terrible. The virtigo attacks come closer together and last longer. I now walk around(sometimes crawl) in a fog and it feels like I gently sway constantly. I have just recenlty started to get major headache and neckaches. I asked my dr. if I was crazy and he laughed and said no it was just part of the Meineres . Are the awful headache and body aches a part of this?
I am on a cpap machine b/c of the fatige. I now wonder if the fatige and sleep apnea is apart of the CM..?.. I just keep thinking that I will wake up one day and feel good and all aches, pains, and dizziness will be gone.
I am seeing Dr. Barr (Neurologist) at the Simon Willimson Center @ Princton Medical Center in Birmingham, Al.
Can any one suggets Neuro Dr. in Birmingh, Al
I want to get a second opinion!!
Thanks again for ll of your coments. I want tolearn all I can about this.
Ditto to what Shannon and Selma said.
In my case of Chiari's, I felt like it came on all of the sudden, until I learned what it was. Then, I realized that it had been coming for some time, and I just didn't realize the symptoms. For example, I had extreme fatigue. I thought that was due to getting a bit older (just hit my 30s), and that I moved, so have to drive an hour one way to work... so I didn't attribute tiredness to anything, even when it got really bad.
I'd get dizzy, and think I needed more vitamins or sleep, or less caffeine. There were quite a few others, but you get the idea. The more I learn about CM, the more I realize there were warning signs for much longer than I thought.
And as Shannon said, we find out some of the strangest things seem to be in common with other Chiarians, one being the walking on the toe thing (or putting more pressure on the ball of your foot).
There can be quite a few reasons your doc isn't moving faster on this. You may not be in immediate need of drastic measures. I don't know what other kinds of tests were ran on you for your other diagnosis, so perhaps they do know more than they have told you, specifically. Not to say they are holding the info, but just not mentioning that when checking for your Meineres , perhaps they already did a CINE and just told you you were getting a MRI (they are very similar from the patient's perspective).
They may not be familiar with Chiari's, and when your results came back, they looked up a blurb in their medical textbook and felt that it is no more serious than migraines.
I am with a doctor that is not familiar with ACM, so I have had to educated her during my path. There is good and bad to this setup - I'm more in charge of my own medical fate. I don't have to wait for the doc to decide to test me or try something... they listen to me, verify it, and then we move forward. The bad is that I have to do all the research myself. They do look things up, they are researching on their own, but when it comes right down to it, they study more to understand it, I study to fix it. I don't have the luxury of finding a specialist in the area/in my insurance.
As Selma and I mentioned, I would absolutely ask for a CINE if they haven't given you one. One thing with Chiaris is that even a smaller herniation can block fluid. blocked fluid is serious and will need additional work done fairly quickly.
At that point, after the CINE, if you find that there is no blockage... you will probably go on to manage your symptoms with medications and physical therapy for the muscle atrophy (if you have that, arm fatigue/tiredness is how I first realized I had atrophy). If your symptoms stabilize where they are, as frustrating as it is, you are kind of in a holding pattern. If your symptoms begin to seriously worsen, depending on your doctor, they may put you in surgery within a few months of it being worse, or they may make you wait it out. The most important thing is that you listen to your body.
I can not stress this enough. Each of us has been there. Your body will tell you when it's time to relax, stop doing whatever activity that you are working on, or whatever .If you push it, you could hurt yourself. When I was diagnosed in October, I started a journal. I have memory issues due to my chiari's, and I thought a journal would help me keep track of everyone. That, and I thought that if I share my day to day with others that have chairi's, it might help them through, help them feel more at ease or less alone... that is what other people's blog/journals did for me at the beginning.
Sorry for the long email, whew! I'm going back to my coupons now!
In my case of Chiari's, I felt like it came on all of the sudden, until I learned what it was. Then, I realized that it had been coming for some time, and I just didn't realize the symptoms. For example, I had extreme fatigue. I thought that was due to getting a bit older (just hit my 30s), and that I moved, so have to drive an hour one way to work... so I didn't attribute tiredness to anything, even when it got really bad.
I'd get dizzy, and think I needed more vitamins or sleep, or less caffeine. There were quite a few others, but you get the idea. The more I learn about CM, the more I realize there were warning signs for much longer than I thought.
And as Shannon said, we find out some of the strangest things seem to be in common with other Chiarians, one being the walking on the toe thing (or putting more pressure on the ball of your foot).
There can be quite a few reasons your doc isn't moving faster on this. You may not be in immediate need of drastic measures. I don't know what other kinds of tests were ran on you for your other diagnosis, so perhaps they do know more than they have told you, specifically. Not to say they are holding the info, but just not mentioning that when checking for your Meineres , perhaps they already did a CINE and just told you you were getting a MRI (they are very similar from the patient's perspective).
They may not be familiar with Chiari's, and when your results came back, they looked up a blurb in their medical textbook and felt that it is no more serious than migraines.
I am with a doctor that is not familiar with ACM, so I have had to educated her during my path. There is good and bad to this setup - I'm more in charge of my own medical fate. I don't have to wait for the doc to decide to test me or try something... they listen to me, verify it, and then we move forward. The bad is that I have to do all the research myself. They do look things up, they are researching on their own, but when it comes right down to it, they study more to understand it, I study to fix it. I don't have the luxury of finding a specialist in the area/in my insurance.
As Selma and I mentioned, I would absolutely ask for a CINE if they haven't given you one. One thing with Chiaris is that even a smaller herniation can block fluid. blocked fluid is serious and will need additional work done fairly quickly.
At that point, after the CINE, if you find that there is no blockage... you will probably go on to manage your symptoms with medications and physical therapy for the muscle atrophy (if you have that, arm fatigue/tiredness is how I first realized I had atrophy). If your symptoms stabilize where they are, as frustrating as it is, you are kind of in a holding pattern. If your symptoms begin to seriously worsen, depending on your doctor, they may put you in surgery within a few months of it being worse, or they may make you wait it out. The most important thing is that you listen to your body.
I can not stress this enough. Each of us has been there. Your body will tell you when it's time to relax, stop doing whatever activity that you are working on, or whatever .If you push it, you could hurt yourself. When I was diagnosed in October, I started a journal. I have memory issues due to my chiari's, and I thought a journal would help me keep track of everyone. That, and I thought that if I share my day to day with others that have chairi's, it might help them through, help them feel more at ease or less alone... that is what other people's blog/journals did for me at the beginning.
Sorry for the long email, whew! I'm going back to my coupons now!
COMMUNITY LEADER
Hi..u asked can chiari come on all of a sudden...If u were to say can the symptoms bcome intense at an alarming rate...yes, progression of symptoms can change from a bumpy car ride, a hard cough or sneeze, a fall, a roller coaster ride.....many different things can trigger a low to non active chiari into a full flare.
The issue as to whether or not to treat ur chiari should be made after seeing a true chiari specialist and making sure u do not have nerve impingement which can cause perm damage.This is y we say to get teh full spinal MRI and CINE MRI to see what all is going on....many drs r not trained fully in how this condition can affect us and go by old standards of it is not necessary to do nething unless it is 5 mm or longer in herniation, but we know as patients with smaller herniations or no herniation at all we can still have an issue if our CSF is blocked and there is overcrowding.
Find a dr that is willing to keep looking until he has the answers.
"selma"
The issue as to whether or not to treat ur chiari should be made after seeing a true chiari specialist and making sure u do not have nerve impingement which can cause perm damage.This is y we say to get teh full spinal MRI and CINE MRI to see what all is going on....many drs r not trained fully in how this condition can affect us and go by old standards of it is not necessary to do nething unless it is 5 mm or longer in herniation, but we know as patients with smaller herniations or no herniation at all we can still have an issue if our CSF is blocked and there is overcrowding.
Find a dr that is willing to keep looking until he has the answers.
"selma"
Hi Jenn! Chiari can become symptomatic suddenly or it can get progressively worse over time. Did you have any kind of fall or accident before your symptoms got worse? The question about walking is mainly curiosity ... Most of us were "toe walkers" as kids. Are you going to UAB? and if so who is your neurologist? I saw one there who was pretty good but my case is not "cut and dry" by the old standards so i went to the Chiari Center in wisconsin. Shannon
What wil happen if this all goes untreated? My Dr. seems to be in no hurry to found out what is really going on..I am searching for answers all over the web.I want to be well informed and take charge of my health and make an informed decision if or when the time comes..please pointme in the right direction.
THX--- Jenn
THX--- Jenn
I was told that I walked by 8 months old with no problems.I am 35 years old and have always been an active fit person. I work in construction and find my self off work more than at work latley. My right arm hurts and tires after 10 minutes of slinging a hammer or painting. I have dizzy attacks at least twice a month lasting from 3-5 days, and latley I am having terrible headaches. I look forward to the results of my spine MRI. Should know moew in a few days. I am trying to stay positive for my husband and children.
Should I ask that my dr. order a CINE MRI? I jahve been told by my ent that I have meineres disease for a year now, but I feel that Ihave felt so much for the last two months. Does Chiari come on suddenly??
I am thankful to have some oneto talk to about this!!
-- why the question about my walking habbits?
-- Jenn
Should I ask that my dr. order a CINE MRI? I jahve been told by my ent that I have meineres disease for a year now, but I feel that Ihave felt so much for the last two months. Does Chiari come on suddenly??
I am thankful to have some oneto talk to about this!!
-- why the question about my walking habbits?
-- Jenn
I can absolutely see where the symptoms for Chiari's and Meineres can definitely overlap.
A CINE is very important to get done. It's like watching a video of your brain fluid. What they are looking to see is if there are areas where the fluid is getting trapped, or where the flow is just not passing through because of blockage.
A spinal MRI is useful, because it can check for a few things, syringomyalia, which is fluid filled sacks in the spinal column, and can also sometimes tell if you have tethered cord.
You are embarking on a scary journey, Jenn. Information about Chiari's is widespread, sometimes hard to find just what you are looking for, and sometimes, plain out misleading or wrong! Things may never go "back to normal", but don't get discouraged. You have found a great resource here at Medhelp... Feel free to ask any and all questions, no matter how silly they may seem. You might be surprised!
Just out of curiosity, did you walk on the balls of your feet or "on your toes" when you were younger?
A CINE is very important to get done. It's like watching a video of your brain fluid. What they are looking to see is if there are areas where the fluid is getting trapped, or where the flow is just not passing through because of blockage.
A spinal MRI is useful, because it can check for a few things, syringomyalia, which is fluid filled sacks in the spinal column, and can also sometimes tell if you have tethered cord.
You are embarking on a scary journey, Jenn. Information about Chiari's is widespread, sometimes hard to find just what you are looking for, and sometimes, plain out misleading or wrong! Things may never go "back to normal", but don't get discouraged. You have found a great resource here at Medhelp... Feel free to ask any and all questions, no matter how silly they may seem. You might be surprised!
Just out of curiosity, did you walk on the balls of your feet or "on your toes" when you were younger?
COMMUNITY LEADER
Hi a CINE MRI is similar to a reg MRI, the difference is they use a clip for the second part of the MRI to watch the CSF flow in relation to ur BP.Contrast is also used during the second portion of this MRI....the first part being exactly like all other from ur prosepctive...I am sure there r diff angles and slices and magnification used...so , a certain type of machine is needed...some areas do not have different types to take advantage ....I am sorry I don't know the correct lingo.....it escapes me....tesla ? Neway, it is the BP clip and the fact they r watching the flow of the fluid to look for a blockage that makes it different and important.
"selma"
"selma"
Please explan what a CINE MRI is. I want to be as informed on this as I can. I want to be able to make an informed decision if or when the time comes. I am so ready to feel like my self again.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Many of us have had a mis dx as the symptoms can over lap and appear to be something else. The size is not what matters so much with chiari as the CSF flow and overcrowding...and quality of life.
In addition to having ur complete spine MRI'd u will need a CINE MRI to check the flow of ur CSF...then have a chiari specialist review it all for u...u need to rule out related conditions which in turn will be able to tell if u have the Meineres along with it , but it is possible it is all chiari.
Stress can make how u feel worse, so do try to relax until u do know, I know it is easy to say and not easy to do, we all have BTDT too....but try.
Glad to have u as part of our chiari family here, sorry the reason u had to seek us out.
"selma"
Many of us have had a mis dx as the symptoms can over lap and appear to be something else. The size is not what matters so much with chiari as the CSF flow and overcrowding...and quality of life.
In addition to having ur complete spine MRI'd u will need a CINE MRI to check the flow of ur CSF...then have a chiari specialist review it all for u...u need to rule out related conditions which in turn will be able to tell if u have the Meineres along with it , but it is possible it is all chiari.
Stress can make how u feel worse, so do try to relax until u do know, I know it is easy to say and not easy to do, we all have BTDT too....but try.
Glad to have u as part of our chiari family here, sorry the reason u had to seek us out.
"selma"
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