Got the news he said Chiari isn’t causing the pain.
He wants me to see a headache doctor.
He said pain is in my head.
Really emotional he wants me to see a pyhycilist.
I am just done. My parents believe my NS.
I don’t want to live in pain forever.
Surgery is not a option. It won’t help me according to him.
They think I am crazy. 
Hi Sydney. I am SOOOOO sad to see this post. I know you must feel totally helpless and hopeless and I'm soooooo sorry. My daughter started having symptoms at 12. The NL and NS both said Chairi WAS NOT the cause. She ended up taking all of these different pills which just made her high or sick and other weird stuff. Many of her friends turned away because they're just clueless and all wrapped dup in their tiny universe anyway. Some adults couldn't handle it, including one set of grandparents. She tried a headache clinic which was not that great and the NL there said docs "don't even do" Chiari 1 surgeries since they "don't work." Crazy, huh?! Obviously, she was 100% wrong. Life turned into a total nightmare and even her Dad thought maybe...just maybe...those docs were right. Sad place to be, I think you know.
Well, here's the up side...I decided to update all of Lynn's eye and dental stuff, checked for all sorts of allergies and vit's/minerals and so on. We looked at hormone levels, pituitary, thyroid, etc,... Any of these things can cause symptoms if your parents were willing to check there.
Too, my daughter went to a clinic for Biofeedback training. There, she learned some different techniques to help her cope (to an extent) with the pain. Anybody, even people not suffering, could benefit from what she learned. She tried counseling and after going through a whole bunch of odd balls, finally found someone who she clicked with and was helpful. Never made the pain go away but again, it helped her cope a little better. Massage helped a little and there's acupuncture and cranial sacral massage...
All of this was a big job for me...looking for docs, dropping them, pushing them, compiling documents and driving everywhere but we learned after ruling everything else out that her problem was VERY likely from Chiari. We finally found a NS who REALLY knows CM and armed with 18 months of documentation, he agreed to do the surgery. After barely living for just over 2 YEARS, on Nov. 20 (at 14 yrs old), Lynn had decompression surgery. She's getting better everyday and is 50% symptom free right now. She was just cleared yesterday to run again and went 3 miles.
Nobody should rush into brain surgery. It's VERY serious stuff but living a half life is not fair either. What if you found a good counselor and it actually helped? Even a little bit? It's worth knowing. Maybe your parents will consider checking all of those other things with different docs? It takes a ton of time and going to appt's makes you think about your head more and makes it all worse and you may feel as if all the docs are just a joke but if your parents are willing to try, you might find an answer. It may be Chiari but if it isn't, you'll avoid an operation.
If you want email Lynn or you M&D want to contact me, let me know. We live near Seattle and I don't have many answers but I know what we went trough. Hang in there, girl. There IS hope!!!!!!!!!! Just hard to see it right now.
Sydney,
I am so sorry that your NS brushed you off like that. I just went through the same thing with the NS I was sent to. I was told that my symptoms had nothing to do with a Chiari and I was simply experiencing headaches and referred me to a headache pain specialist. My PCP is not buying the headache dx though and is sending me to another specialist in hopes that the next one will know what CM1 is. Fingers crossed.
I want to tell you that you are not crazy! I know it's hard when a so called specialist brushes you off, but try and keep your chin up. You're not alone. I have found that coming here and reading about everyones Chiari journey tends to lift my spirits and gives me the strength to keep looking for an answer. Don't give up, keep fighting, and hold on to hope that things will get better.
Hopefully your parents will do some research on CM1, maybe have them read some of the things posted on this site. It's hard for people who don't have this to fully understand the pain and emotional struggle we face on a daily basis. So perhaps if they can see that not every doctor you see will know how to treat this, they will keep searching for someone who does.
Take care,
Kristi
Oh my gosh, this is so awful. I am sooooo sorry. My daughter's is 13 mm. Her NS here who did the procedure says that some way larger ones can cause no issues at all while sometimes smaller, even 6-7 mm's can. Walking, hearing and the sneeze thing are classic symptoms. Did you get a CINE MRI done (pronounced like cinema)? This lets the NS know how well your cerebral spinal fluid is flowing or if the CM is crating a blockage. BUT...whatever you can do to rule something in or out could be helpful. Whatever you can do to help ease your mind throughout the day-breathe, stretch, relaxing teas, long baths...can't hurt to try.
You are in NO WAY crazy and it's torture to not be doing "normal" life stuff. Plus, being in pain makes every second seem like an eternity. With each moment being so hard, it's too much to imagine the future. Maybe just try to breathe through the now. This fight could be long or may end soon...either way, if you're hurting now, you need to find some ways to make it slightly less tortured. Google some good motivational podcasts and quotes, get that stuff sent to you daily. It's cheesy but you NEED it right now.
It's great that your mom is sending info to the institute. She is not living this pain and can't know what it's like to be you. But, as a mom with a daughter who has been through all of this, I know it's hard on parents. You just want to help and do the right thing but it's soooooo hard. You feel as if you should be able to fix it and you can't, and you go through the what-if's too...plus you want your life back too and feel guilty for thinking it. None of it is fair but it is the way it is right now.
Keep talking, get it all out. This forum can be a good place for that. Ask you parents to look at it and participate on here too.
Maybe try counseling. This is just too much to try to bare on your own. HUGS!!!!!!!!!!
Hi Sydney,
Please, Please !!
First Read this article and have your Mom read it. It is incredible and has helped many people understand Chiari 0 and symptoms and why CM0 should be considered for surgery.
http://suite101.com/article/arnold-chiari-malformation-does-size-ma...
I'm so sorry Sydney. It is so frustrating when you are not taken seriously. Please know that you are not alone and many adults are given the same crappy treatment. You are NOT crazy.
I have ZERO doubt that my hearing loss is directly caused by my Chiari, fortunately my ENT agrees but I know MANY doctors totally ignore the hearing loss as a symptom. It's maddening.
Praying you can get the treatment you need soon. {{{HUGS}}}
Wendy
Sydney,
I have written you several messages and deleted them. I have been angry for you and sad &even mad. I think at times it's easy for people to give advice that don't understand. I know what you have been through. I am very glad your parents are sending your records to the Wisconsin Chiari Institute. It is a great Dr's Group. I actually read about them last week about work they were doing on POTS.
Please remember not every DR. no matter what speciality is a specialist in every Disorder or Illness.Even if your NS has seen 1000 CM patients, they might not have your unique, extreme symptoms. I was dropped by a NL right after my Emergency 16 hr CM & C Spine Surgeries, but he at least said it was because he didn't know how to help me. I honestly don't think your NS knew how to help you. Your CM symptoms and side effects are extreme especially for your age. Please look as this as a positive. Now you will find the right NS that can help you get your life back.
I have more to add but I am having a bad pain night so I will reply tomorrow. Just remember no matter what....Never give up. If I can see 52 Specialists in 4 years before I got my 1st correct diagnosis & MVD Surgery with major side effects you can hold onto hope. Hope has gotten me through some pretty dark times & been the only thing I could hold on to.
I promise to get back to you tomorrow.
Tracy Z.
This doctor seems very uninformed. 6-7 mm is not chiari 0. I'm so upset for you. Praying the Chiari Institute of WI will help you!
Well sweety I am sorry! I know what that pain feels like and it sucks!
I do have chronic headaches as well as the chiari pain. It is VERY easy for me to tell the difference. The cluster migraines and migraines I get start in one little spot in my head. bout the size of a golf ball and stay there.
My CM pain is at the back "band" of my head. When I bend over, stand up fast, cough sneeze or laugh it hurts and makes me dizzy! Being pregnant doesn't help either. My usual headache relief, ibuprofen, coffee, hot bath and lay down don't help. I can't take ibuprofen pregnant. I can't drink a lot of coffee pregnant (kidney problems), can't take too hot of a bath. All I can do is lay down!!
My point is, is that you can "explore" other things to help manage your pain till the docs come around to actually helping you.
It Is CM1 ....Like I said I wrote several posts last night and I kept coming back to the same question why did the NS misdiagnosis Sydney?
Anglyn said:
This doctor seems very uninformed. 6-7 mm is not chiari 0. I'm so upset for you. Praying the Chiari Institute of WI will help you!
Hi Sydney,
WOW..I am shocked at this NS..but..like Emmaline replied..this wan't the doctor for you....You are sending your info to WI, right??
Also, like Anglyn said 6-7mm is NOT CHIARI 0..Mine was 5-6mm and I had many Sx's which have gotten better after surgery. Do not lose hope here, hun..easier said than done, for sure.
Please let us know how you are doing and what your plans on for getting a proper diagnosis and treatment.
You are in my thoughts and prayers.
Lori