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chiari malformation hernia
my 2 year old daughter was diagnosed with chiari malformation hernia low lying sharp right side in january.we were actually checking for cerebral palsey.she couldn't roll over @ the age of 1.than when we finally got her walking with a walking toy she was dragging her left leg.here her torsel is weak,some issues with hip and left ankle and leg.now drs have labeled her with mild cerebral palsey also.so she recieved a dosage of botox which helped for the first 4 months.so her nuerologist @ that point believed main cause of problem was the cp.her 2nd set of botox started wearing off in less than a month.we seen the orthopedic surgeon because of the hips and he read up on all of the reports and saw the issues.she has had pain where she cries in severe pain when we put her in her car seat or if we pull her off the couch playing.at that point he has decided to send us to see the nuero surgeon for the chiari.when i spoke to nuerologist he reminded me he had been watching for anymore sighns and that she had been on the border to see the surgeon.apparently according to him 7mm is the border line.and they are pretty positive she will need the surgery.any body have anyadvice to help me through this???i am a nerve wreck and still learning,especially since there is more than 1 problem.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Thank u for sharing ur chiari journey to date and I am happy u r doing well post op.
Please use this link http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605 ; to add ur Drs name so we have them all in one place and easy to locate for those researching Drs.
I hope u stick around and continue to share ur journey with us : )
i was 35 years - old when I was diagnosed with Arnold - Chiari Malformation. I had to go for brain surgery to get the growth from the stem of my brain out so my brain can breathe. I was sent to see a Neuro Surgeon and his name is Dr. DaSilva.@ the Ottawa Civic Hospital in August of 2007. He had told me that I was born with it. I had to wait that whole year to recovery. Niow, I have gone for my second surgery to remove the tissues and release the pressure so the swelling behind my left eye could go down on its own. I am 40 years old now and recovery from second surgery. I thank Dr. DaSilva and his team for helping and save me from the aweful pain that I went through. The symptoms were dizziness, losing my balance, and the pain in my back of my neck...The second time was a slight dizziness. I am wishful that i went to the see doctor in Ottawa Ontario and thank - you for all their help over at the Ottawa civic.
Well that's what a mom does...and I would be just as protective as you in that situation!! I know how hard it is to advocate for myself and I know and can express how I am feeling..your DD is lucky to have a mom like you that will do that for her.
I had to let go of feeling embarrassed of saying what had to be said b/c otherwise you get nowhere with the DR's. So never feel bad or apologize for what you do...none of those people would feel the pain that you would if something happened to your DD.
That is what the momma bear instinct is for :)
Take care and you and your DD are in my prayers.
Carolyn
I had to let go of feeling embarrassed of saying what had to be said b/c otherwise you get nowhere with the DR's. So never feel bad or apologize for what you do...none of those people would feel the pain that you would if something happened to your DD.
That is what the momma bear instinct is for :)
Take care and you and your DD are in my prayers.
Carolyn
thanks so much selma and cmoeller.i am just hitting that point where i i want all the answers and i am just so mad,frustrated ,and just want to scream.i want to contact so many drs and just let them have it.especially my ob who knew something was wron when they had to shock her in utero.and especially the first nuerologist who refused to do the mri cause of the risk but wanted all these measurements cause her head is extremely big.well of course if shes having pressure thanks to the chiari its going to be bigger.but he wouldn't listen to me.i begged him 2 do the mri and give me answers.he wouldn't just said don't need 1 its not going 2 say 100% that she had cp.that we would just deal with it.of course i didn't want to believe that.and 2rd dr finally listened or only God know how much worse things could get and never known why.it scares me to think about it.
i used highchairs with my other kids.but when ur told ur dd may never walk and she finally does its just the greatest thing.and to know that in her life there may always be a chance that she may loose that ability is scary.so @ this point i set her free and let her and us enjoy every moment she can walk.she can't run,hop or nything.her legs can't even work together right.jumping is having her right foot on the ground and left foot going up.its hard to see how much problems its causing her.so i let her walk and eat.but i have to say i enjoy every moment of it.if she chooses to sit by me,i encourage it.especially when we go out to eat.she wants to be a big girl like her siblings.and i love it.shes strong in with a good heart i believe we will get through all of this.but @ the same point i am terrified.so me stalling for the surgery doesn't mean i won't get it done.i want to hear the dr say it needs done immediately than i will put the stalling behind me and follow his advice for the best of my daughter.but i feel as if i am aloud to question which way to go until than.
cmoeller, i don't know anything about that girl and her family but i completely feel for them.she couldn't even get enjoyment out of her daughters concert.that is trully sad.that they would rather take chances and make people miserable than just doing the right thing.i have to say the board of education and possibly even the news would be getting a ear full from me if i was the parent.there is no way they had the right to put her daughter @ risk like that.people just get to me when they don't understand things.i know i am overprotective of my daughter right now.which that ot yelled @ me for.but i can't replace her.she is a sweet little angel from God.and if anything happend to her i wouldn't be able to handle it.and dr.gosh really stressed how dangerous it would be for her to hit the back of her head wrong and no sports.he said it 4 times after he found it on the mri.so yes i am overprotective and i embarrass my husband cause i always speak up about things.
i used highchairs with my other kids.but when ur told ur dd may never walk and she finally does its just the greatest thing.and to know that in her life there may always be a chance that she may loose that ability is scary.so @ this point i set her free and let her and us enjoy every moment she can walk.she can't run,hop or nything.her legs can't even work together right.jumping is having her right foot on the ground and left foot going up.its hard to see how much problems its causing her.so i let her walk and eat.but i have to say i enjoy every moment of it.if she chooses to sit by me,i encourage it.especially when we go out to eat.she wants to be a big girl like her siblings.and i love it.shes strong in with a good heart i believe we will get through all of this.but @ the same point i am terrified.so me stalling for the surgery doesn't mean i won't get it done.i want to hear the dr say it needs done immediately than i will put the stalling behind me and follow his advice for the best of my daughter.but i feel as if i am aloud to question which way to go until than.
cmoeller, i don't know anything about that girl and her family but i completely feel for them.she couldn't even get enjoyment out of her daughters concert.that is trully sad.that they would rather take chances and make people miserable than just doing the right thing.i have to say the board of education and possibly even the news would be getting a ear full from me if i was the parent.there is no way they had the right to put her daughter @ risk like that.people just get to me when they don't understand things.i know i am overprotective of my daughter right now.which that ot yelled @ me for.but i can't replace her.she is a sweet little angel from God.and if anything happend to her i wouldn't be able to handle it.and dr.gosh really stressed how dangerous it would be for her to hit the back of her head wrong and no sports.he said it 4 times after he found it on the mri.so yes i am overprotective and i embarrass my husband cause i always speak up about things.
Just wanted to say...this same girl with CP..her mom was told the same thing about her hitting her head.
At the school concert I watched the kindergarten teacher who knew her medical issues...put her at the top of the bleachers to stand and sing for 20 minutes!! Her mom was beside me and was so scared that her DD would fall that she was literally in tears throughout the performance. It is ridiculous for people not to understand...and you moms should NOT have to go through that ignorance!!
Any parents that don't understand..I would just dismiss them..I would love to see them go through the amount of stress and strain that you are dealing with on a regular basis. People will try and tell you all through your child's life that you are doing the wrong thing...but you can never be wrong if you go with your gut!!
I wouldn't go back to that OT...anyone who you are not comfortable with..will not be a good experience.
Keep your chin up..I can tell you are an awesome mom and your DD is very lucky to have you to advocate for her :)
Carolyn
At the school concert I watched the kindergarten teacher who knew her medical issues...put her at the top of the bleachers to stand and sing for 20 minutes!! Her mom was beside me and was so scared that her DD would fall that she was literally in tears throughout the performance. It is ridiculous for people not to understand...and you moms should NOT have to go through that ignorance!!
Any parents that don't understand..I would just dismiss them..I would love to see them go through the amount of stress and strain that you are dealing with on a regular basis. People will try and tell you all through your child's life that you are doing the wrong thing...but you can never be wrong if you go with your gut!!
I wouldn't go back to that OT...anyone who you are not comfortable with..will not be a good experience.
Keep your chin up..I can tell you are an awesome mom and your DD is very lucky to have you to advocate for her :)
Carolyn
COMMUNITY LEADER
I agree now that I know a bit more of what transpired...that is ridiculous....
I had no idea it was a first meeting...goodness, not saying if u saw her more that would give her a right to be rude.....there r ways to express other ways of doing things...and I do not feel someone is wrong, just doing it diff.....and I am always open to other ways of doing things....that is how we grow as individuals....but those that feel it is their way or the highway have not grown.
Very frustrating for u I am sure
"selma"
I had no idea it was a first meeting...goodness, not saying if u saw her more that would give her a right to be rude.....there r ways to express other ways of doing things...and I do not feel someone is wrong, just doing it diff.....and I am always open to other ways of doing things....that is how we grow as individuals....but those that feel it is their way or the highway have not grown.
Very frustrating for u I am sure
"selma"
selma,
the ot person i met today was brand new.i was trying to explain everything 2 her after she read the reports.and everytime i said something i was being negative suppossively.and i was in the wrong 4 not forcing her 2 sit in a high chair 2 eat.i'm in the wrong 4 even thinking about waiting on the surgery.cause according to her by age 7 the damage will be permanent.and the funny part is the dr hasn't even said 4 sure she needs it immediately yet.just after what she read and apparently knows about it she thinks she has the right to tell me to have the surgery immediately and that we need my daughter to weigh more so she will be healthier for the surgery.she even had the nerve to say something about it taking me this long to get into a surgeon when in jan.it was showing the spinal pressure built up already.well no one told me that.no one sent me to a surgeon.i just got sent to one so i am going to see him.i was just in the wrong all the way through with her.i asked my daughters e.i. worker if she knew anyone else.i don't think i can go back.sorry
the ot person i met today was brand new.i was trying to explain everything 2 her after she read the reports.and everytime i said something i was being negative suppossively.and i was in the wrong 4 not forcing her 2 sit in a high chair 2 eat.i'm in the wrong 4 even thinking about waiting on the surgery.cause according to her by age 7 the damage will be permanent.and the funny part is the dr hasn't even said 4 sure she needs it immediately yet.just after what she read and apparently knows about it she thinks she has the right to tell me to have the surgery immediately and that we need my daughter to weigh more so she will be healthier for the surgery.she even had the nerve to say something about it taking me this long to get into a surgeon when in jan.it was showing the spinal pressure built up already.well no one told me that.no one sent me to a surgeon.i just got sent to one so i am going to see him.i was just in the wrong all the way through with her.i asked my daughters e.i. worker if she knew anyone else.i don't think i can go back.sorry
COMMUNITY LEADER
I have heard that the white matter or lesions can be from headaches...so it is not that far off...but what did she say u were doing wrong?
Rude if nething else...what is this persons agenda?
I understand how frightening this must be and to deal with people with no common ideals of dealing with people just doesn't make the process ne easier.
To start with a new person now, make make things harder.. remember this is ur child, and she is to help ui and ur DD...she works for u, not the other way round...so, let her know it is her demeanor that has u on edge and if she could work with u in that things will go better for ur DD.
"selma"
Rude if nething else...what is this persons agenda?
I understand how frightening this must be and to deal with people with no common ideals of dealing with people just doesn't make the process ne easier.
To start with a new person now, make make things harder.. remember this is ur child, and she is to help ui and ur DD...she works for u, not the other way round...so, let her know it is her demeanor that has u on edge and if she could work with u in that things will go better for ur DD.
"selma"
well just got done with ot eval.think i am ready to cry more than anything.she read all the reports and is pretty positive she needs the surgery.and that the nuerosurgeon will be scheduling it.so she really doesn't want to work on anything besides getting her to gain weight before the surgery.so now we get to go see a dietician.she thinks its best not to worry about anything else till the surgery is done unless dr says different.and she believes the white matter is the chiari causing spinal pressure.and said its best to get surgery now before theres permanent damage.so scared.
selma,i have never heard of that before.but will check into it.like i said so many different issues at once.this ot was so mean.i jump when i see her about to fall and is so nervous with her and she told me to stop i will scare her of everything and told me how many other things i am doing wrong.suppossed to see her next week.idk???personally may go somewhere else
selma,i have never heard of that before.but will check into it.like i said so many different issues at once.this ot was so mean.i jump when i see her about to fall and is so nervous with her and she told me to stop i will scare her of everything and told me how many other things i am doing wrong.suppossed to see her next week.idk???personally may go somewhere else
COMMUNITY LEADER
I just read thru most of this and got side tracked when I read ur DD had a belly button hernia...it can be an indication of Ehlers-Danlos syndrome...and can cause loose hyperflexible joints....easy bruising...ect....and I suggest u ask about it.
My mom recently told me I also had that hernia...I was dx'd last yr with EDS....all the dots r getting connected for me.....
"selma"
My mom recently told me I also had that hernia...I was dx'd last yr with EDS....all the dots r getting connected for me.....
"selma"
shiela yes my daughter was born with problem after problem.i remember them shocking her in the womb 4 times @ the end cause she wasn't moving for hours no matter what they did to me.and my bp kept spiking.finally they induced.it was supposively about 3 weeks early but we are questioning that now.cause some of the discrepansies we have seen.the ultrsounds also said she was going to be a 10lb baby.when they induced me,she was no where ready to come.she was up really high in my back.dr.didn't care.she broke my water before 10am and started the drugs.she wasn't coming down.finally it was getting late @ nite and my dr gave me a hug and said by morning we would have to in for er csection.i was terrified.never had 1 before and had 6 other kids to take care of.my mom told me with contractions start pushing.so i did.we finally got her down and gave birth before 10 pm that nite.but it was along time without water for her i thought.when she came she was facing the groung cords wrapped around her throat twice.i was scared.it took them forever to get her to cry.i remember screaming get over there make sure shes ok.they finally got her crying.immediately there were jaundice issues.nurses didn't want her going home cause her count was tooo high.but her ped.knew i would take care of her so we went home on beli ribbon blanket for 2 months and had to keep being tested.than we had reflux start with a belly button hernia almost had to have surgery till the blockage finally passed.neitherless problem after problem.shes been in speech and pt about a year.and tomorrow we see ot.we have early intervention and early start also involved.but its always the question what issue is causing which problem.her hernia is on her right side and the way its been explained even with her cp it affects her left.but its hard to know why things hurt since she can't talk.she falls all the time steps r super hard for.being able to have her sit to one side is harder.hers is 7mm on the right.when the botox helped the first round they were hoping to point the finger to the cp more than the chiari.joke was on us now botox is no help.
cmoeller,that is funny how you both are dragging your leg the same.(not mean funny but likecrazy funny.i don't want to offend anyone.sorry)i think its why we r having such a hard time figuring this out.her left leg goes out pretty far when walking and going up stairs.this is too much to try to understand.but ortho is pretty sure its alot to do with chiari but still is positive cp is involved.i tell myself i shall never have a boring day for the rest of my life with her.she is a special gift that i will have alot of challenges with but that will only make me love her more.its scary going places cause dr warned me about her hitting the back of her head wrong and how dangerous it could be.some parents look @ me like i am crazy.but thanks everyone it helps to hear i'm not loosing my min the problems r caused by something i have no control over.thank you everyone.and best wishes to all of you
cmoeller,that is funny how you both are dragging your leg the same.(not mean funny but likecrazy funny.i don't want to offend anyone.sorry)i think its why we r having such a hard time figuring this out.her left leg goes out pretty far when walking and going up stairs.this is too much to try to understand.but ortho is pretty sure its alot to do with chiari but still is positive cp is involved.i tell myself i shall never have a boring day for the rest of my life with her.she is a special gift that i will have alot of challenges with but that will only make me love her more.its scary going places cause dr warned me about her hitting the back of her head wrong and how dangerous it could be.some parents look @ me like i am crazy.but thanks everyone it helps to hear i'm not loosing my min the problems r caused by something i have no control over.thank you everyone.and best wishes to all of you
COMMUNITY LEADER
Hi...not sure exactly...all I know is I always had a issue turning my head to look left..still do, and my numbness and tinglings all on my left.....I also know my herniation was bilateral...one side was 4mm the other 6mm...I also had the odontoid(sp) process issue as well....causing even more blockage and overcrowding.
My neck to shoulder area has had a lump like a tight muscle on it since b4 surgery and it is still there...one reason I would love to get a massage...but in going into a theater I sit on the left so I can look to the right...otherwise I get a HA.
I am sure there r many reasons y this is going on...but I do know, a blockage on one side can affect u on just one side....I wish I could say it with all the terms, but...I do not know them....
Thanks Carolyn for explaining some of this in the terms drs use : )
"selma"
My neck to shoulder area has had a lump like a tight muscle on it since b4 surgery and it is still there...one reason I would love to get a massage...but in going into a theater I sit on the left so I can look to the right...otherwise I get a HA.
I am sure there r many reasons y this is going on...but I do know, a blockage on one side can affect u on just one side....I wish I could say it with all the terms, but...I do not know them....
Thanks Carolyn for explaining some of this in the terms drs use : )
"selma"
I think it depends where in your brain is where you have the issues..
The nerve fibres actually cross over in the medulla oblongata which is on your brainstem so if your brain is being compressed at the cerebellum then the nerves cross over after that.
I have the same issue...my cerebellum was overcrowded more on the right side...which causes me left sided problems.
However, if you herniation is blocking things at the medulla level...it could affect the same side that it is blocking.
Does that make any sense..lol..?
Carolyn
The nerve fibres actually cross over in the medulla oblongata which is on your brainstem so if your brain is being compressed at the cerebellum then the nerves cross over after that.
I have the same issue...my cerebellum was overcrowded more on the right side...which causes me left sided problems.
However, if you herniation is blocking things at the medulla level...it could affect the same side that it is blocking.
Does that make any sense..lol..?
Carolyn
Selma...Its funny you mention that you had more issues with your left side because so do I. Dr. Heffez had asked me this on a number of occassions due to my left side being so weak and non responsive. Also asked which side of my head hurts more. For me, its my right side. He then went on to explain that the right side of the brain controls the left side of the body. And for me my right side of the brain is so compressed and crowded that it made sense to him why my left side would cause problems. That is also the side of the brain that I have 2 major vessels compressed so bad that I can have an aneurysm any day or stoke because it is so bad.
Looking back now, all of my previous surgerys were on my left side as well. Now I question whether or not I need them in the first place.
I guess I'm just confused as to why the CSF would be blocked on the left side if the right side of the brain controls the left side of the body...would it not be blocked on the right side instead?
hernandez7....my youngest son has the same issue as your daughter with not wanting shoes on and having issues with swallowing. His is more bilateral than one sided but he too is still low on the charts as far as percentile. He will be almost 2 and I question alot of his setbacks thus far. Our pediatrician is keeping a close eye on him as we have had many many issues with him since birth. Feeding, speech delay, coordination, sensory issues and such. I feel alot like you when it comes to your child.
here i go again with losing my train of thought....lol....one day I will get used to it.
Sheila
Looking back now, all of my previous surgerys were on my left side as well. Now I question whether or not I need them in the first place.
I guess I'm just confused as to why the CSF would be blocked on the left side if the right side of the brain controls the left side of the body...would it not be blocked on the right side instead?
hernandez7....my youngest son has the same issue as your daughter with not wanting shoes on and having issues with swallowing. His is more bilateral than one sided but he too is still low on the charts as far as percentile. He will be almost 2 and I question alot of his setbacks thus far. Our pediatrician is keeping a close eye on him as we have had many many issues with him since birth. Feeding, speech delay, coordination, sensory issues and such. I feel alot like you when it comes to your child.
here i go again with losing my train of thought....lol....one day I will get used to it.
Sheila
Hello..
I had to skim this b/c I am having trouble reading at long lengths tonight but I noticed mention of a difference in foot tone and leg involvement.
One of my worst symptoms with Chiari was leg involvement for me too. I run a Beaver group and a little girl in it has CP and it has been commented on how we both walk and drag our legs the same way. So...I can see how it would be hard to figure out what is causing what..
One of the first things I noticed was weak feet and a very stiff ankle (on the left side) I was also having problems with my left arm. I started feeling like my leg and foot was dragging and I would wobble. My left foot would constantly cramp and go spastic and this eventually affected both legs. My upper trunk (hip flexor area) is still extremely weak and painful. One idea on the shoes...sometimes when my feet really burn and tingle, they also swell and I have to take my shoe off b/c it gets painful. I actually started doing this long b4 dx I just didn't know why.
Hopefully that sheds some light on it?
Carolyn
I had to skim this b/c I am having trouble reading at long lengths tonight but I noticed mention of a difference in foot tone and leg involvement.
One of my worst symptoms with Chiari was leg involvement for me too. I run a Beaver group and a little girl in it has CP and it has been commented on how we both walk and drag our legs the same way. So...I can see how it would be hard to figure out what is causing what..
One of the first things I noticed was weak feet and a very stiff ankle (on the left side) I was also having problems with my left arm. I started feeling like my leg and foot was dragging and I would wobble. My left foot would constantly cramp and go spastic and this eventually affected both legs. My upper trunk (hip flexor area) is still extremely weak and painful. One idea on the shoes...sometimes when my feet really burn and tingle, they also swell and I have to take my shoe off b/c it gets painful. I actually started doing this long b4 dx I just didn't know why.
Hopefully that sheds some light on it?
Carolyn
COMMUNITY LEADER
Well chiari and choking also go hand in hand...it may not be her inability , but just a symptom creating an issue so she may be reluctant to bite the pizza.....
I hope the OT knows a bit about both issues to be able to discern which the symptoms may be from.
"selma"
I hope the OT knows a bit about both issues to be able to discern which the symptoms may be from.
"selma"
wow so thats why they have been looking @chiari more.i thought more cp.but always wandered.i know drinking out of a sippy cup she still wears it like her mouth doesn't seal enough around the mouth piece and i know she still can't bite into a pizza i have to cut it and watch her when eating cause she over fills her mouth even with banana where she starts to choke her self.just trying to make sense of all of her problems.nobody has been able to say which problem is from what.but hearing your comments it sounds more like the chiari.we see a ot specialist friday to help with the sensory of the shoe and socks and the feeding issues.it doesn't seem as if i get a break from drs.love her to death though.
COMMUNITY LEADER
Hi...there is no way to know for sure....but, I have had many shoe issues over the yrs...in fact it was foot issues that had me back to the drs and on to my chiari dx....it took 10 yrs from the onset of constant foot pain to do so....but...I know foot pain can be chiari.'
Also, the fact she has more pain or issues on one side can be chiari as well when the tonsils r herniated and causing a CSF blockage on that side....most of my issues were on my left and my NS said my CSF blockage was on my left.
"selma"
Also, the fact she has more pain or issues on one side can be chiari as well when the tonsils r herniated and causing a CSF blockage on that side....most of my issues were on my left and my NS said my CSF blockage was on my left.
"selma"
thanks selma and shiela.yea i was thinking after reading everything that it could be why she cries.i know her pt has showed me alot of different exercises to do with her so i keep trying.but not sure on the one selma.do u know if chiari could be so painful that it causes her not to want a shoe on???her left side is the worst which is funny.but she refuses to keep a shoe on that foot.she has went to the extreme of using her other foot to help get it off to the point where she has ripped the lace off socks.never is it the right shoe.just the left.not sure which symptoms r chiari or which r cp???so confused.but glad to find some answers and to know i am going to see a good dr.thanks everone
it may be bothering her to tilt her head back....i know for me personally...i can't bend my head back or the room starts to spin and i get sick. Even when I go to the salon to get my haircut I have to wash my own hair at home and then go with a towel on so I don't have to bend my head back in the sinks they have there. It may be her reason of crying as she is too young to tell you. That's just my thoughts though.
I'm sorry you are going through this. It can be a very trying process. But you are in very good hands with Dr. Di.
(((HUGS))) to both of you
Sheila
I'm sorry you are going through this. It can be a very trying process. But you are in very good hands with Dr. Di.
(((HUGS))) to both of you
Sheila
COMMUNITY LEADER
No worries....glad I am able to share some info.
I would say it may hurt...we r told to avoid hair dressers sinks bcuz of leaning our heads back is not good.
If u can support her head by holding it u may be able to lessen the pain for her.
I wish I could answer all ur questions, but my knowledge is limited....
Have they told u to try patterning?....it is set exercises that u manipulate her arms,legs..ect........it helps to build muscle tone.....many CP patients have this done during PT, but parents can do it for the child too.
"selma"
I would say it may hurt...we r told to avoid hair dressers sinks bcuz of leaning our heads back is not good.
If u can support her head by holding it u may be able to lessen the pain for her.
I wish I could answer all ur questions, but my knowledge is limited....
Have they told u to try patterning?....it is set exercises that u manipulate her arms,legs..ect........it helps to build muscle tone.....many CP patients have this done during PT, but parents can do it for the child too.
"selma"
thank you thank you.you have made me feel more comfortable about all of this.what i have read about the white matter is it could be about the stroke she had,or she may have another 1 or it could be the cerebral palsey or its linked to bipolar and alzeimers also.i know they have to do further mris to watch it and i will be asking more questions about it.i am glad to hear my daughter is with a good dr.i have been nervous.its been a obstacle with drs just to get to this point.i have had to trust my instinct and listen to what 1 dr says and move on.cause some of them just kept trying to ignore her issues.do u think it hurts when u tip her head back to rinse her hair????she cries but 2 small to vocalize if its hurting or she doesn't like it.i know she has gotten sick on car rides.her balance is off.she has some sleep apeni.i have even video taped it.i feel so bad for her.and just want answers.i mean shes 9th percentile for her weight.is that cp or mc??her tone in her foot is tightening again.her hip?her left thigh is thicker than her right,her left leg is tiny bit longer.she has creases in both thighs.??her upper trunk is very week still.no 1 can tell me what is going on.is it the cp or cm?
COMMUNITY LEADER
Hi...I must say u have a good NS lined up...I hear wonderful things about Dr Di !
From what I understand, headaches can cause lesions in the white matter.....so it could be from something like that....not sure tho.myelination is the covering of the nerves...demyelination is MS....but, that is not the case of ur DD.
Well talk to ChairiWolf for one that has had surgery with Dr Di....we do have several others as well...Dr Di does the endoscopy PFD......it is less invasive, quicker to heal...ect.....
I would suggest u take a pad and pen and if the dr says something u do not understand ask him to write it down, or spell it.
No worries...keep us posted
"selma"
From what I understand, headaches can cause lesions in the white matter.....so it could be from something like that....not sure tho.myelination is the covering of the nerves...demyelination is MS....but, that is not the case of ur DD.
Well talk to ChairiWolf for one that has had surgery with Dr Di....we do have several others as well...Dr Di does the endoscopy PFD......it is less invasive, quicker to heal...ect.....
I would suggest u take a pad and pen and if the dr says something u do not understand ask him to write it down, or spell it.
No worries...keep us posted
"selma"
the only mri they did was of her brain.the chiari was actually a fluke.we were ready to hear she had a stroke in utero and that she had cerebral palsey but i had no knowledge of chiari till after they found it in her mri of the head.dr.di is the nuerosurgeon i have to take her to july14.her nuerologist has been dr.gosh who is the one who found it in her mri and was watching her.now its dr.goodwin her orthopedic surgeon that decided its time to see dr.di.and dr.gosh agrees.as for any other test no not as of yet.now i am trying to understand more of thiswhite matter hyperintensity that represents variations in myelination.dr.gosh is great but harder to understand and not great at explaining everything.and i was told by dr.goodwin already that dr.di shall be pretty hard to understand also.its frustrating because i want to know everything so i can help her.but i will take the names of these test with me to see if he thinks she will need them or what.i just hate putting her through more pain.thank you sooo much
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