Aa
so many questions
I had a nuerology appt today and my dr. told me the results of my MRI. So much was said. Overall, he said that my results were "normal", but he wrote down a couple things for me that were noted..."mild cerebellar tonsilar ectopia 4-5 mm" and "small arachnoid cyst".
I have had and been treated for migraines since I was in junior high. Recenty, after the birth of my daughter, I have had very severe migraines and severe dizziness. Concered, I went back to my neurologist. I'm on new migraine meds which have helped. My neurologist seemed to brush my symptoms and what I feel are major changes off. After reading many of your posts and happening to have a student with Chiari Malformation in my classroom, I am a little more concerned. Any guidance you could give would be greatly appreciated.
I have had and been treated for migraines since I was in junior high. Recenty, after the birth of my daughter, I have had very severe migraines and severe dizziness. Concered, I went back to my neurologist. I'm on new migraine meds which have helped. My neurologist seemed to brush my symptoms and what I feel are major changes off. After reading many of your posts and happening to have a student with Chiari Malformation in my classroom, I am a little more concerned. Any guidance you could give would be greatly appreciated.
COMMUNITY LEADER
U may want to look at the list of symptoms I added to the Health Pages as well as the other pages that are there with more info that may also help u understand.
wow. I really just can't thank you enough. I just feel "confirmed" in so many ways. I feel like I know why I have these symptoms now, why I feel so crummy. You've been my epiphany. Thank you so much.
Any other advice or knowledge you can give is greatly appreciated. Maybe something can be done so that my baby girl, my husband, and my students will see the real me again some day. Thank you, thank you, thank you.
Any other advice or knowledge you can give is greatly appreciated. Maybe something can be done so that my baby girl, my husband, and my students will see the real me again some day. Thank you, thank you, thank you.
COMMUNITY LEADER
Well, this is my opinion and u have to make the choice for ur self....but, I feel u need a chiari specialist to tell u if u wait or have surgery.....they r better equipped...plus u never know how fast or slow ur symptoms will progress.....getting bumped, a fall or MVA can bring it all crashing down rather quickly and it can get to the point of perm nerve damage...bcuz that may happen, u want to be monitored by a specialist.
As u said, u are getting by and do not appear as symptomatic as many here, but I felt that way too when I joined the forum....until I had my surgery I was at the end of my rope.
U deff want to rule the other related conditions out...and a good chiari dr will order those tests in order to help determine if u r a surgical candidate or not.
"selma"
As u said, u are getting by and do not appear as symptomatic as many here, but I felt that way too when I joined the forum....until I had my surgery I was at the end of my rope.
U deff want to rule the other related conditions out...and a good chiari dr will order those tests in order to help determine if u r a surgical candidate or not.
"selma"
in a wayou answered your own question….You have so many that need to be answered…that your doctor should be discussing with you…not leaving you in limbo.
A syrinx (Pronounced sir ink) is cyst in the centre of the spinal cord and is a common finding in patents with CM. it is most often found in the cervical area but can be found in any of the spinal regions or the whole length of the cord.
So yes I would say full spine or at the very least C-Spine MRI would be in order
rod
A syrinx (Pronounced sir ink) is cyst in the centre of the spinal cord and is a common finding in patents with CM. it is most often found in the cervical area but can be found in any of the spinal regions or the whole length of the cord.
So yes I would say full spine or at the very least C-Spine MRI would be in order
rod
I completely understand and agree. I guess my thoughts are how far to go with this right now. Do I wait for it to worsen? or assume it won't? After reading so many of the threads in this forum, I know that my symptoms could be far worse. Yes, my life has changed and I don't feel up to par. But if this is as bad as it gets, I will definitely consider myself fortunate. Do I push this issue now or wait? Not necessarily a question for you; it's just what I'm thinking to myself. What scares me is how drastically things changed for me.
After some reading, I see that once symptoms worsen and this progresses that surgery is an option, but what about before that? What do chiari patients do prior to surgery?
And do I need to have a spinal MRI to determine more? I don't even know the right terms yet...to determine syrinxes, fluid blockage, tethered cord, etc.?
After some reading, I see that once symptoms worsen and this progresses that surgery is an option, but what about before that? What do chiari patients do prior to surgery?
And do I need to have a spinal MRI to determine more? I don't even know the right terms yet...to determine syrinxes, fluid blockage, tethered cord, etc.?
COMMUNITY LEADER
I must agree with ROD.....one u need a chiari dr and they should be working to help u...not debate what they believe to be normal......
And it is obvious that ur dr does not believe that a herniation below 5mm is nething but an incidential finding and nothing to worry about.
AS I may have mentioned b4....there r many with "normal" herniations that have more symptoms than those with larger ones.....it is the degree of overcrowding and blockage of CSF and symptoms, ur quality of life that they should be looking at not the size of herniation.
"selma"
And it is obvious that ur dr does not believe that a herniation below 5mm is nething but an incidential finding and nothing to worry about.
AS I may have mentioned b4....there r many with "normal" herniations that have more symptoms than those with larger ones.....it is the degree of overcrowding and blockage of CSF and symptoms, ur quality of life that they should be looking at not the size of herniation.
"selma"
Hi,
Well you can accept your new normal……
or
If that's the best your doctors can offer... just accept... it then shame on him. Your quality of life is affected by this witch I imagine is affecting your family and work ect. Every effort should be made by doctors to help….from treatment to listening to your concerns. You have the choice of getting a second opinion from a NS with experience of Chiari and owe it to yourself and your family to get the best help available. No one knows if you will get better or worse but I would be expecting a better effort from my doctor
ROD
Well you can accept your new normal……
or
If that's the best your doctors can offer... just accept... it then shame on him. Your quality of life is affected by this witch I imagine is affecting your family and work ect. Every effort should be made by doctors to help….from treatment to listening to your concerns. You have the choice of getting a second opinion from a NS with experience of Chiari and owe it to yourself and your family to get the best help available. No one knows if you will get better or worse but I would be expecting a better effort from my doctor
ROD
So I guess my next question is...
What now? My doctor said that this is "my new normal". Because it only measured as 4 1/2 mm, this was within normal and I didn't need to do anything. But obviously the symptoms I have developed are all new to me.
So my question is, Will these symptoms stay the same, get worse, or go away? Right now, my next neurology appt is in January (to check in on my migraines). I guess my plan is to do nothing unless my symptoms get worse because as he said, "this is my new normal".
What now? My doctor said that this is "my new normal". Because it only measured as 4 1/2 mm, this was within normal and I didn't need to do anything. But obviously the symptoms I have developed are all new to me.
So my question is, Will these symptoms stay the same, get worse, or go away? Right now, my next neurology appt is in January (to check in on my migraines). I guess my plan is to do nothing unless my symptoms get worse because as he said, "this is my new normal".
Thank you so much. So much is making sense now. It sounds strange, but I am somewhat relieved. It's like I've found a reason for feeling badly for so long. Your comments have helped so much. Right now, I'm hanging on every word. Think I've checked back here a thousand times since I posted my question just to see if anyone else had added anything.
I'm new to the forum too, but not to Chiari. I read your post last night and thought about a web site that might help clear up some of your questions. wichiaricenter.org in Milwaukee, WI. I hesitated because my dr. is connected with this center and I don't want you to think I am pushing a dr. I am not. (althoughI do feel I owe him my very life !!!) . But I also thought it may be close-ish to you in IL.. The info is great. In particular,go to the Chiari Malformation & Beyond section and click on Chiari Malformation (obviously) :) You can also find a couple of interviews with Dr. Heffez on the website somewhere and they explain the herniation/symptom question very well.
Practically speaking there are a few things chiarians can do. Don't STRAIN! If you must lift something blow out through your mouth on the lift. (Like that sweet baby girl of yours. I didn't know I had chiari and was soooo sick when my son was a toddler. I wasn't decompressed and I wasn't blowing!!!) .....and on a more personal note exhale if you must strain in the potty. :)
Listen to your bod.. if you feel exhausted you have done too much. Pace yourself. Do a little Rest a little. Or Rest a long while.
Get others to help, you can't do everything.
Don't look down or up for extended lengths of time. You are pinching your herniated brain.
Watch your body mechanics. Sit up straight in your chair. No slouching. These postures can contribute to compression.
I hope you can gleam something useful out of this. I will be praying for you and your family. What would we do without them??!!
Practically speaking there are a few things chiarians can do. Don't STRAIN! If you must lift something blow out through your mouth on the lift. (Like that sweet baby girl of yours. I didn't know I had chiari and was soooo sick when my son was a toddler. I wasn't decompressed and I wasn't blowing!!!) .....and on a more personal note exhale if you must strain in the potty. :)
Listen to your bod.. if you feel exhausted you have done too much. Pace yourself. Do a little Rest a little. Or Rest a long while.
Get others to help, you can't do everything.
Don't look down or up for extended lengths of time. You are pinching your herniated brain.
Watch your body mechanics. Sit up straight in your chair. No slouching. These postures can contribute to compression.
I hope you can gleam something useful out of this. I will be praying for you and your family. What would we do without them??!!
I guess right now, I'm scared. I feel so different than I did months ago. Is that how it is going to be? Is it going to get progressively worse so fast? And will my daughter have this?
I always tease about being screwed up in the head, but come on! Give me a break!
I always tease about being screwed up in the head, but come on! Give me a break!
you're not going crazy...or if you are, you're in good company because all of us here crazy too! there's a wealth of information here and selma will not lead you in the wrong direction. ask all the questions and vent your frustrations all you want here. we have all been there, are going there, or have done that! LOL! and try to find something to smile about every day...it helps when all else fails!!!
One trick you can use at school when your walking down teh hall and feel "wobbly" or cant walk in a straight line..........run your hand down the side of the hall while your walking. it helps you stay straight and keep your balance ;)
So these symptoms are similar to chiari symptoms? I'm not going crazy?
Oh my gosh! Already, that explains so much! Thank you, thank you, thank you! Any help you can give me, I will greatly appreciate!
Welcome to the group! Unfortunately you are now living with what most of us live with..... its just that we know its the chiari and your just now learning. Ask lots of questions and you need to find a chiari specialist instead of just a NS.
Also you need to keep a copy of all your records and mri's
-Shannon
Also you need to keep a copy of all your records and mri's
-Shannon
COMMUNITY LEADER
Epidurals and LP's can trigger chiari symptoms....not the best thing to have when u have chiari, but u didn't know...I also had an epidural with my delivery...I was in the hosp for 5 days bcuz of the HA';s from it...and was almost given the bloodpatch, but didn't need it in the end...it heal by itself by my lying flat for 5 days...in agony.
I can totally relate ot what u r saying and I am sure almost all the members here can too.
Know u r not alone with this....
I will see what info I can get for u on this topic, but for now I must get to bed.
TTYL
"selma"
I can totally relate ot what u r saying and I am sure almost all the members here can too.
Know u r not alone with this....
I will see what info I can get for u on this topic, but for now I must get to bed.
TTYL
"selma"
Honestly, it's starting to get hard to figure out or remember what is a symptom and what could be a result of new meds. I'm tired all of the time, but then I can't sleep most of the time. But I passed that off as having a new baby and then later connected it to the anti-anxiety meds. I have absolutely no appetite, but maybe that is because of the meds, too. idk.
Yes, I did have an epidural. Y?
I've noticed so many changes since this past May (my daughter was born in January). My headaches became very severe. I couldn't move at all. I couldn't lift my head or do anything. I was very nauseous all the time. Then, I started becoming VERY dizzy all of the time. It seems like I can't do anything without feeling like I'm going to fall down. I constantly run into walls and silly things like that. Since school has started again, I've noticed that I'm not as quick cognitively. I forget words all of the time, simple words, people's names, etc. I lose my train of thougt a lot. I'm constantly tired. I would say that I just generally feel bad 4 or 5 days out of every week. The base of my neck hurts quite a lot, which generally leads to a migraine. I started taking meds for post partum depression at the end of June, too. These are the things I feel most often. Overall, I am just not the same person, but I can't seem to express that to anyone. I just feel bad a lot of the time.
I've noticed so many changes since this past May (my daughter was born in January). My headaches became very severe. I couldn't move at all. I couldn't lift my head or do anything. I was very nauseous all the time. Then, I started becoming VERY dizzy all of the time. It seems like I can't do anything without feeling like I'm going to fall down. I constantly run into walls and silly things like that. Since school has started again, I've noticed that I'm not as quick cognitively. I forget words all of the time, simple words, people's names, etc. I lose my train of thougt a lot. I'm constantly tired. I would say that I just generally feel bad 4 or 5 days out of every week. The base of my neck hurts quite a lot, which generally leads to a migraine. I started taking meds for post partum depression at the end of June, too. These are the things I feel most often. Overall, I am just not the same person, but I can't seem to express that to anyone. I just feel bad a lot of the time.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
May I ask if u had an epidural for the delivery?
Wow, I wonder what the odds are for a teacher and student in the same class to have chiari?....
Well u can look thru the chairi specialist list to see if there is a dr near u, or u can ask about other drs or chiari centers....
May we also ask what ur symptoms r besides the HA's?
Most drs that are not chiari specialists may not even report a chiari finding under 5 mm....generally under 5mm it is considered chiari0.....if under 5 mm many drs feel it can not be symptomatic. When it can and is...U let us know what info u need and we will try and help. We have many threads going here...some of themn r just for fun...others for support and of course info.
"selma"
May I ask if u had an epidural for the delivery?
Wow, I wonder what the odds are for a teacher and student in the same class to have chiari?....
Well u can look thru the chairi specialist list to see if there is a dr near u, or u can ask about other drs or chiari centers....
May we also ask what ur symptoms r besides the HA's?
Most drs that are not chiari specialists may not even report a chiari finding under 5 mm....generally under 5mm it is considered chiari0.....if under 5 mm many drs feel it can not be symptomatic. When it can and is...U let us know what info u need and we will try and help. We have many threads going here...some of themn r just for fun...others for support and of course info.
"selma"
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