my daughter was just diagnosed and I have tons of questions

[helpme5123]

Hi all, My 13 year old daughter just was diagnosed with Chiari malformation 1. they said her tonsils are approx 4 or 5 mm. we found out because my daughter had a bad headache with vision disturbance so we went to ER they said they beleive it was migraine so i waited to get the MRI done thru the reg dr. well we went last week and they sent us to neuro.. soooo we saw the neurologist today and he says he type 1 and that he doesnt think the migraine are truely from the chiari because her headaches are more from having migraines based on the info we told him. She doesnt have headaches regularly their sporadic and I mostly noticed it when she has been dehydrated. she hasnt had it from playing any sports, PE, or being in the bounce house or anything like that.  he checked her balance, coordination, muscle strength and some other things and said physically she has no problem. she has no other symptoms as all....  well long story short hes sending us to a neurosurgeon in miami childrens hospital just as precaution but he, himself does not believe that surgery is warranted at this time but wants to make sure her csf is flowing. we wont get the results til first week of feb.

the dr said there are more and more people living with this and they dont really know how many because their finding people with this more so on accident, meaning their looking for something else. i also asked the dr if there is things my daughter should avoid, he said contact sports for sure and any excessive flex and ext with the head.

i wanna know...
1. does everybody progress with this structural problem or are there some people it never progresses and they live a normal life.
(i asked the dr but i wanted to hear from people that actually suffered from this)

2.   does anyone know if there iss there anyone out that that has been asymptomatic and lived a full life this way

3. if the surgery is done is there alot of people out that that have been successful and been able to continue living.

4. a support group for parents, outcomes, treatments etc..

I dont know what to do... i read online and i have read so many horror stories... im praying for my daughter. if any of you have been in this same situation or know anyone that has been, i would appreciate if you could reach out to me.

[helpme5123]

Thanks again guys i feel a little better today.  I have been feeling like throwing a tantrum and wishing this nightmare to end but over the course of the days and hearing from you all, i am starting to calm down and stop being in such panic.

so heres a couple of more questions i came up with...

1. i noticed on that link you sent me there was a list for electrolytes. is electrolyes a common problem? just wondering because the dr said my daughter has vaso vagal?

2. should i tell my daughters teachers about her diagnosis?

[LisaRiu]

Hi there,
I was dx with CM & Syrinx at 36, but have been having migraine headaches since i was 11. I had a CT scan when i had my first migraine because i lost consciousness at school and then the left side of my body was paralysed for nearly 3 days. I had the CT only because my grandad had a brain tumour and it had to be ruled out. The diagnosis then was 'just migraine'! I was a bit of a tom boy as i had 2 brothers and did a lot of stuff that i shouldn't have done. I had pains headaches etc but just thought that everyone did. I think the biggest change for me was after my son was born. Everything just seemed to get worse from then. It wasn't until i started training as a nurse that i realised that it was wrong. That was when i really knew there was something wrong. I just didn't know what. The next step was trying to get my doctor to understand that there was too. Many years later...just when i was beginning to give up, the diagnosis finally came. After that.....well, then it seems you have to continue fighting to get the professionals to take you seriously. I'm getting there. I just started some medication to help reduce the amount of migraines i have and since then, i have to say, my head has never been so clear and pain free. Now this is when i realised that everyday as long as i can remember, i have had headaches. They differ in severity, but i finally realised how much pain i was in without really realising that i was in it.....if you know what i mean. I didn't even know that i was having 3 times more migraines than i thought. I have about 3 different types, which my neuro confirmed on my visit this week. My advice to you is similar to what you have already been told. Stay calm because getting stressed won't help either of you, and it can actually worsen symptoms. Get your daughter to 'listen' to her body. No-one should be in pain without there being a cause for it. If she is asymptomatic, that's great, but she should always be aware of the symptoms so she can react before any damage is done. And finally, get a good neuro who knows about cm and the related conditions (a chiari specialist would be the best person). Good luck.

[selmaS]

  Take a deep breath......and remember to exhale...lol...relax.

As for what to do and not ...we do have a list in the Health Pages....http://www.medhelp.org/health_pages/list?cid=186

Contact sports is the main issue, I would deff suggest she stay away from that, but if she is ok with running, let her run, she has to learn to listen to her body and if she feels bad after a certain activity then those r the ones she should avoid.But do look at the list for some guidance.

What ever u do, get rid of the guilt, u did nothing wrong ...there is no way to avoid this....u did not purposely do something that  caused it....so let it go!

Not every one with Chiari will need surgery,,.. it all depends on how it is affecting them and if it progresses into a syrinx.....or if she has a syrinx already....that is more of an indicator of surgery along with the obstruction and the symptoms.

The nausea is deff a Chiari related issue, I use to get it a lot b4 going to school and so is the anxiety....they r related and not much u can do, ......I found I could not take mint toothpaste, lucky for me Close up gel was developed when I was in 5th grade and I have used it since and it helped with my morning nausea issue I had.....I use the cinnamon ....lol....that will not relieve all nausea, but helped me a lot with some of it.

[helpme5123]

Selma Thanks, I have been asking her all kinds of questions. So far she answers to no for all of the stuff you listed. I can tell you Im totally paranoid and I feel like I dont want to let her do anything because now I think everything and anything is from ACM. :(

she wakes up feeling nauseated most mornings but goes away some time later. she also told me that its not every morning but when she wakes up naturally at whatever time she wakes up she doesnt feel nauseated. just mornings when she is forced to get up for school. now im wondering if thats from anxiety or from ACM.

Im scared for my daughter and I feel so alone with this and some how I feel guilty about it. I know there is support out there but I just feel like everybody has the same result.. surgery, more surgery, and disability or pain.  at first i thought maybe my daughters wont progress but the more and more i read its kind of like its something that is more realistic that surgery is the end result for everybody with this at some point in time.

just praying for strength at this point... Also any tips "to do" and "not to do" and maybe what degree... should my daughter stop PE, running... Im so paranoid now...  sorry and thanks for reading my long post and prayers for those of you suffering

[selmaS]

  A journal of symptoms is good....u may also want to ask about head pain when having a BM instead of the way Drs ask....there is no way most adults know which symptom falls under their terms....so, just ask, how do u feel when doing this or when u r done...ect.....blowing up balloons, swings, being upside down, jumping, yelling....do u get a funny sensation or pain even if it is quick, u will want to know....Good Luck.

[linnielou232]

Good for you for getting her records and starting a question log.  This will help with the process.  As far as activities and such is a question to ask the Dr.  everyone is different.  As for the surgery that is a question that you can also ask.  Me I had a Durplasty, some member harvest their own, and other NS use a plate so it all depends on the NS and what he thinks is best for your DD.  That would be another question to put on your list.  As for me and my family I we do watch out for such things as hugging people differently.  If I'm in a crowd I have a family member (My big hubby) :)  behind me so no one can bump my head.  So there are things that you can do to avoid more injury.  Your DD is young and will bounce back quickly.  Just take one day at a time and keep that questionaire going. Wishing you the best.
Linda :)

[helpme5123]

Thanks guys! I was crying for 2 days thinking this was the worst thing because I really thought it was going to be a life sentence. I dont think they are doing a CINE scan. well i just check so i guess they are.. well it says mri thoracic spine w/o contrast and MRI with CSF flow.  I pray that it is not blocked and I hope that things do not progress but am also keeping in mind that nothing is ever a guarantee either.

Selma your right about kids not knowing about their symptoms. I am def going to keep a list and write them down so i will know when symptoms start to change.

RheaAnn, Im so glad to hear that you are cont with your life and things are looking up for you.

linnelou, Thanks for your advice, i did get copies of her labs but i totally forgot the scan thanks for that reminder!

Also, I want to ask you is it ok to do activities after surgery. and well if my daughter has chiari type 1 and is "asymptomatic" should i put her in a bubble? does anybody know of a website where it talks about type 1 non surgical and things to do and not do? does the sx actually open up more space but still providing good enough protection? I mean im going to ask the neurosurgeon but thats in at least 2 more weeks.

sorry for the long post and thanks for all your responses!

[linnielou232]

I can't help with the questions because I wasn't dx'd until I was in my 40's, but I just wanted to let you know that we are here for you and you and your daughter are not alone.  Your heading in the right direction in getting the flow study done.   This will help to see what is going on and how it is affecting her.  One sugggestion I have is to start writing down questions that come up so you don't forget what to ask when you go to appt.  Also I started a file and always ask for disc of scans, any reports of office visits etc.  This will help if you go and have a 2nd oppionion.  Wishing you the best.
Linda :)

[RheaAnn]

I can answer a few questions regarding my own experience. I was diagnosed at 14 because of migraines. From 11 to 16 years of age, I went from having only headaches to having all sorts of issues. I'm most definitely not suggesting things will get worse! Just letting you know about me! :) I had surgery at 20 and my symptoms were almost completely resolved. I then had a bad cycle, as Selma mentioned we can have. I discovered I had dysautonomia, because I had been passing out regularly. Then I needed another surgery because of a screw coming loose. It's thought to be loose because of the fainting and me hitting it. Who knows! But since then, it's been 9 months. I don't suffer from dysautonomia as of now! And my pain has completely gone away because of acupuncture! I am a full-time graduate student and I am getting more active by the day! Nothing super rough, but yoga, workouts, and I'm getting back into swimming and running! It was a bit rough for a bit, but I came out way better in the long run! I am so glad I had the surgery even though there were times that was not fun. Chiari is so so different from person to person!
As far as support group- this is the best one I've found and I suggest it to anyone and everyone! Best of luck to your DD!
Rhea

[selmaS]

  Hi and welcome to the Chiari forum,

It is hard for neone with Chiari to be able to list symptoms when they first get this DX....and the main reason is it is congenital...since birth we live with the effects and Chiari symptoms do cycle,....and the younger I was I was able to do certain things too, and the way I felt afterward I thought was normal as I always felt that way after certain activities,...so ur DD may have more then even she is aware of....like when I was young I had no idea that not everyone had head pains when having a BM....I always did, and it was not something u talk about so when asked if I had pain with straining I had no idea what they meant,....I also did not like the way I would feel on a swing, merry go rounds, and hanging upside down....etc...so I avoided what did not feel good....and u learn to adapt....

The CSF flow study that the Dr talked about is great that they r going to do next, it is also known as a CINE MRI.

The next thing is to find out if she has ne related conditions,,..so MRI's of the thoracic and lumbar spine should be done as well.

The most important thing is to see how her Chiari is affecting her and her overall health...if there is no obstruction....she should not need surgery....but if there r changes she should be checked as it can change from a sneeze to a MVA that triggers a flare and a change in the position of the tonsils.,...

Know u r not alone, nor is ur DD...many parents use this forum for support, and u r welcome to do so too.