I am new to this support group and very thankful I found it. My 13 year old daughter Mya (whom my profile picture is of) was diagnosed with Chiari back in July 2013. We have been to many different doctors until we finally found one that would listen to everything we were saying that was hurting Mya, no doctors around where we lived would give us answers they just kept saying look it up on Google and go from there. These doctors wanted to go as far as putting pins and needles in her to see if it would help without even looking into another way in which this scared Mya very much and I didn't blame her. Her father and I talked about it (well he won't it scared him so much) and we decided to get another doctor. We did just that and Dr Tye has been amazing, he listen to everything we said and told her she wouldn't have to get surgery as of now.
I have done everything they have told me but Mya is still in so much pain that in gets in her way of every day routines. I am lost and don't know where to turn or what to do for her anymore. They don't wanna give her certain meds because she is young. I am grateful for finding this support group and would love advice on what I can do for her. She just isn't having headaches but a lot of pain in her wrist, neck and arm to where she can't even pick up a grocery bag with very little in it. I would so appreciate it if someone could give me some advice on what to do for her. Once again I am new to this.
Thanks everyone so much it means more than you will ever know!!
Welcome aboard! I am so sorry to hear about your daughter but you have come to the right place for help and advice. I see you live in VA, I am in Southern Maryland and we travel to Hershey, PA for our son's neurosurgeon. Is the doctor you see a Chiari specialist? If that is what your daughter has I would urge you to have a neurosurgeon that specializes in Chiari. Our son see's Dr. Mark Iantosca at the Hershey Medical Center. I also know of a Dr. Jallo at Johns Hopkins in Baltimore.
Yes, it is difficult to live with it e specially as so few people understand and there is so much you cannot do without discomfort or pain.
I am from South Africa and very few people here have been diagnosed.
My neurosurgeon is wonderful. Too many pain pills has it's own dangers. Regardless any other diagnoses, the best way to control and lessen that pain is what my neuro does for me. I go every 2 years or more, depending on need, for a radio frequency rhyzotomy. It sounds scary but makes all the difference in the world in my quality of life. What it is: under anesthetic they find the nerve in the neck that relay pain messages to the brain for the affected area such as neck and headache. They insert a thin probe then apply radio frequency to stun or block the nerve. It only takes about 15 minutes and you need a day to recover from theater. After that you carry on with your daily life but feel so much better. It is like changing from a ghost into an energized human being. You still feel the pressure or dull effect when you would be having pain, but need no pain pill because the pain is dulled and under control, like something very vague and you are able to work and manage life. With that I use mirtazepine which helps with balance in the brain . I use no pain pills of any kind and am not disabled through all the terrible pain everyone else are talking about. I would really recommend that you pursue similar treatment as pain control, over and above what else they need to do regarding other diagnosis found. If your doctor is weary, let him phone mine! as I noticed doctors do not realize the value of this treatment. Even with my decompression operation I did not have the amount of pain other people seem to suffer, thanks to my rhizotomy. Do pursue it for her, it will make her life so much easier.
Your daughter will need a lot of understanding and support. Even if they do bring her pain under control she will have to take care what she does, how she lives. You need to find ways to enable her with things she finds difficult. She will have to abstain from carrying, moving or lifting heavy things for the rest of her life. Get her eight hours sleep every night as lack of sleep will aggrivate her symptoms. Standing for long periods will impact on the spine. She will need a special pillow to get her comfortable sleeping. Studying or reading with head bent forward will cause pain etc. Working above her head should be avoided. She might start having unexplained falls - get meds to help with balance if needed. No heavy jewelry - the list of do-nots and must do's is endless. Listen to her body and find ways to accommodate and adjust. She might find it impossible to do sport or gym. No bending back of the neck.
I hope you find a knowledgeable specialist with insight and answers regarding treatment and solutions.
I have Cm1 and so does my 14 year old daughter. We are doing an mri for my15 year old today. I feel your pain! It its difficult as a mom too watch them suffer. The best thing I did for daughter was showing her support groups for kids her age. Feel free to private message me I'if you would like her to be able to talk to my daughter.
Hey we found out our son has a 13mm Chiari 3 years ago. He started having all the symptoms 24/7 headaches, muscles hurt, stomach problems, gag reflux and the list goes on. We refused to have the decompression surgery. We opted to go to Barcelona. Dr.Royos has trained the doctors at the Chiari Institute in Nyc. He taught them how to cut the Filumn Termanile which is a less invasive surgery. My son had a few symptoms disappear but had a majority still there. Long story short we found out our son was 98% toxic with BP Oil Dispursements. My story here is that TOXICITY causes INFLAMMATION that causes all the problems. Once we got his body detoxed and all of the toxins out of him he is a 100% better. We now eat only organic. Every night I juice 20 carrots, beet, lemon and cucumbers. I never use chemicals in my house. Our environment now is so toxic. Our food is loaded with preservatives, have you ever seen the pictures of McDonalds hamburgers and French fries looks the same after sitting out for 10 years. My son now is 100% better and yes it's hard at first to change daily habits but it is worth seeing my son today. Look at his website 11racing.com. I hope my story helped:)
I am so sorry you have to watch your daughter suffer. My daughter is SUCH a fantastic kid as well and I know how hard it is. She started having symptoms out of nowhere when she was 12 and it's just hard :(
Having gone through the last three years, with our daughter Aoife, having decompression surgery two years ago and still seeing her suffering every day I believe the best advice that I can give you, outside of the medical advice that you will receive over the coming years, is to let your daughter know that you believe her!!! Above anything else, Aoife always knew that I absolutely believed her when she would tell me about the weirdest symptoms that I have ever heard. From pain so bad behind her eye that she would be forced to push her palm against her eyeball, as she felt it would burst out, her ribs contracting, headaches so bad that she would lay on the couch for days, pain in her groin, back, teeth, jaw, legs etc. Going back and forth to various doctors, some of whom actually asked straight out ''do you think this could be psychological '', she has told me that the only thing that prevented her from 'losing it' was the fact that I did believe her and encouraged her to believe in herself and that the doctors could get it wrong. We are now at a stage in the whole process where she has been diagnosed with Hemiplegic migraine....I wonder if there are any others out there in Chiari land that have had similar diagnosis? I really wish your family a smooth journey along your way, but when you do encounter a roadblock,(there is no doubt that you will, from my experience) you will have to climb over it and fight for your daughter as, sometimes, you will be the main person that she will lean on.
Thank you so much for all of the responses I got about helping my daughter. I will be looking into everything you guys have shared in more detail in the next few weeks. It just scares me that I can't do anything to help her but listen and support her. We are looking into more care for her so she can get back to being some what of a normal kid. She is homeschooled right now so if she don't feel good she can lay down as of next year for school she wants to return to public school. I am all excited for her to return but worried about how she will do and if she gets headaches or pains how does she deal with it. I had one doctor say that she could do normal gym activities but the school wanted her not to take gym. Then when I went to the doctor and they said she was fine the school just said okay whatever she can do it. I'm just so stressed on what to do and I don't want to hold her back from reaching for the stars and having her dreams come true as a designer. Once again thank you again and I will be emailing you guys soon.
Let her do what she feels she can. Give the teachers each an information sheet and meet with them prior to school starting. This will ease your worry and help them to treat her the best they can without pushing her too hard .
Cait I hope you saw my reply on this blog about my 14 year old son. He had all the symptoms like ur daughter and the drs told us to send him back to school and live our life. The one thing my husband and I told my son that we believed him and would not stop until he was 100 percent better. He was practically bedridden with the headaches (especially behind the eyes). People just don't believe me that change of diet and detoxing to keep the toxins out of ur body is the key. Toxins cause inflammation that causes the problems. Our food is horrifying with preservatives, toxins and etc. With a complete change in our lifestyle my son is now living his dreams. Look at his website 11racing.com:)))
I too am a 'Chairi Mum' - my daughter is 27...pain med ...I suggest furocet...not heavy duty but should help head pain, and joints....Just a thought has your daughter been tested for lyme disease? It often presents in much the same way.
You are both in my prayers...don't give up help is out there. a surgeon i recommend is Dr. Rekate..Chairi Institute Long Island.