Hello

[sxsxsx]

I am so thankful I have ya'll. I don't get on here very often but it's so hard to explain what I'm going through to others. Coming here to talk and vent is so ease. I wanted to share the latest; I have CM1 we all know all the craziness that comes with it neuro visits, ENT visits, ct scans, MRI's UNANSWERED QUESTIONS. But did I ever imagine that I would have to experience that with my little baby boy (he not so little he's 9 but still my baby). Yes, he too has his first MRI yesterday which showed poss. CM1 2mm. His Pedi wanted to talked with a specialist before she gave me more info. I'm hoping for the best. I was the one who caught all his symptoms; the way he was describing his headaches I knew something wasn't adding up. I know it's very mild but as a mother you still worry. Thanks everyone for listening.

[selmaS]

  Hi...I am so sorry ur DS also is dealing with this...no one wants to see a child in pain, especially their own.

BUT, u have an advantage....u knew the symptoms and u understand how he feels....u also know u had to come here to find that, ur son has u.

Not that we wish everyone have a family member to share this with, but as a mom it is better if u can relate to ur child and know what to look for, and how to get him the best care!

  His journey with this condition will not be as difficult in that respect.

  Outside that, I pray his condition remains mild and that he does not experience severe pain as distress as a result of chiari and related conditions.
  
  Please keep us posted on his progress

       "selma"

[cash242]

I am sorry that your son has it but also thankful that you have a dx. May I ask what symptoms your son has as I am fairly certain my daughter has it and it breaks my heart as you know. I had 36 blessed pain free years I also had no idea I was living on borrowed time but hate that she is showing sympt so early. I wish you and your son the best.

[sxsxsx]

Selma, you are so right! He will have so much more support then I and endless amounts of info. I will make sure he know all about what he has.
I too hope his CM stays mild and he dosen't have to deal with all the pain that comes with having CM.

cash242, I took him for his well exam during the summer at that time I mentioned my condition to his Pedi. She just told me she didn't feel like he was in any danger of having what I have simply becasue he had no symptoms. I agreed and that was it till about 2 months ago when he developed what we thought was a sinus infection so I took him back because he was having bad headaches. She gave him antibiotics and told me to use adivil for pain. I gave him the medication as directed but he kept asking for the advil and complaing of headachs. So I didn't think twice of it I just thought "those darn sinuses". But one day he said "mom my head hurts when I wake up in the morning and if I stand up to quick it feels like my head is pounding". Sill I thought nothing of it till one day I came home form wrk and he was almost crying and he asked for advil and when I went to give it to him the bottle was almost empty. I hopped in my car and took him to the doctor that night. Two weeks later we did the MRI and the same day as the MRI we saw the doctor for another reason unrealated to the MRI or the headaches. She had the results in less then 3 hours wow! I got nervous because she didn't want to share too much info. I respected her decision but I really just wanted to push her away from the computer so I could read the report myself. My son's headachs are just like mine that was what really made me wonder. The "pounding" was what did it for me that majic word and the asking for pain medicine.That's not like him to do that. I'm thankful for his Pedi too; I'm so greatful she listened to me and did think I was crazy. I just want to know the entire report but I'll just have to wait till she calls me... but yes if you suspect please take her to see her dr; you just never know...

I forgot to mention; my kids know nothing of my condtion; I have never told them.

[linnielou232]

I am so sorry to hear about your son, but good thing you knew what to look for and you know what he is going through.  I think your the 3rd person on here that has chairi and now their children have it.  I thought this wasn't hereditary?  I worry because my daughter is 33 now and she is showing signs of it and I tell her she need's to have it checked out, but unfortunallly she has no insurance.  I hope your son will only stay at a mild condition and not need surgery for a while.  He is still growing.  We wish you the best and let us know about your report.

[sxsxsx]

I will, thanks for listening. I really wouldn't know what I would do without this page/site. This topic is not something I discuss with my family or even my friend. Only very few people know that even I have CM1. So all of ya'll are lifesavers! You understand exactly what I'm saying. I'm glad I shared my story. I hope it can help other keep a closer eye on their lil babies. Sorry to hear about your daughter. I hope she can at least find something to help the symptoms.

[selmaS]

  May I ask y u haven't shared this with ur family and friends?

  I was reluctant to tell my parents, and waited until right b4 my surgery...but all my family and friends know...u can't hide this surgery....

  We all need support and understanding and this page is very helpful as it is others that share in the same issues so they know and understand, but we also need the understanding of our loved ones.

I pray u can find  some support at home too : )

     "selma"

[Sexybare]

The reason I turned to the site is not only to be able to relate to others like me but because my immediate family doesnt quite get it. I hardly ever tell them whats goin on or how I feel anymore. They dont get it. My oldest son is 14 and right now, hes my rock. He tells me its gonna be ok, holds doors for me, carries my groceries, etc... Nobody else really understands. Because I dont complain they thinl om fine and capable of doing everything. Its very frusterating. I figure if I keep it all to myself it will make me normal. Whatever that is?

[sxsxsx]

They all have full lives and as long and I have my husband and the one sibiling I did tell I think I will get by. Plus ya'll give such great advise here! Better then anything they could ever tell me because you undersand what I am going through. That why I feel comfortable here. I really think my family would freak out. Sexybare I have a son and he helps me a lot too.

[cash242]

I want to thank you for sharing your son's story with me.  My daughter has more body aches and fatigue.  She sometimes has headaches but am watching.  I completely respect your not sharing with your family but have to say I am the complete opposite.  I suffered from symptoms for 5 years before finally getting my dx last christmas (was a great xmas present to finally have an answer) and then I had the brain surgery in Feb.  Everyone that I know knows that I have chiari this was a very defining year in my life.  I have gained some amazing friends and have become closer to some family and I have lost friends and family members.  My children have lived through and watched every part of this process and have grown into some amazing chiari advocates.  For me I decided that if people could not make the effort to learn about my disorder then they weren't worth my time as it is now something that defines my everyday.  I was pleasantly surprised how many people wanted to know and wanted to be there and I have been there for them through their moments. True this is the one place I know people truly understand but it is also important for us to educate the rest of the population about something I didn't even know about until last year. I pray that all of us educate people because if my daughter does have it I want people to already have an understanding of it I don't want her to have to fight as hard as so many of us have had to do.  Hang in there and may you and your son find relief.  It is so nice to have another parent to share my concerns with.

[selmaS]

I m glad u have support from ur DS and a few around u and that u get the info and support u need here : )

[*Stormy*]

Hello

I am sort of going through the same thing myself with my youngest DS. He has had some symptoms that have caused me to be concerned (spontaneous falling down and some choking while eating or drinking). Luckily he doesn't seem to have any headaches and everything is pretty mild right now so I haven't pushed for an MRI. He has seen an OT and PT and soon he is going to see a swallowing specialist and probably go through a swallow test. It is all so scary when you think that your child may have to go through everything you have...

I am sorry that your DS has been diagnosed but I am feeling relieved that at least you know now and can keep watch.

Take care
Stormy

[linnielou232]

You are a good momma to be able to see the signs.  I feel as like many of you do as far as keeping your family informed.  My wonderful husband did more research on this topic than I did I think.  I was so scared at the time of dx.  I can't inmagine my daughter having chairi, but the signs are there.  I just wish she had insurance so she could find out.  You and your son does have an advantage because at least he didn't have to go through the chairian run around.  I'm so thankful for you that the doctor listened and didn't just tell him to keep taking aspirin's.  I also have kept my family really informed so they can understand.  Esspecially when it comes to family reunion's etc.  My family member's have saved me a time or two with the extened family because they were not aware of the seriousness of it and I had a couple of them come to me and wrapped their arms around my neck OUCH !!! if it wasn't for my nephew I think my head was about to pop off.  So letting your family know I think is a good idea, because we are not alright and we have day's that we can not understand our selves..  It's good to have support of your family and also my chairian family.  I know you are all here for me and it help's so much especially on day's like today.  I wish you and your son the best.  Your in my chairian prayer's