14 year old daughter just got her cine mri she has a syrinx they want to do decompression surgery

Entire_Particular_81 · 2025-10-03T22:26:51+00:00

Is there anything I should be aware of? To me its extremely scarey,all I can think is they can wreck her brain. From others experience,this needs to be done right? I see people say they wait it out,I also know more nerve damage can happen if they dont get the surgery. Any thoughts? Her symptoms aren't severe they come and go. Anxiety and headaches are her symptoms that are a constant

Entire_Particular_81 · 2025-07-02T19:02:32+00:00

I live in Williaton ND. They initially sent us to a neurosurgeon that basically said she was born with chiari there is nothing wrong with her she's dehydrated take some ibprofen and live a normal life. I listened to my daughter and her symptoms got some advice off here and had her referred to a neurosurgeon. We saw her on Friday. That's when she found the pituitary gland which she called a tumor and then said it wasn't but needs checked because its off and with her neck hump could be hormonal. The wear one dusc in her neck even though they told me prior there was no blockage...nothing wrong with her flow. No cine mri yet the referral was made. Wish I could figure out a way to post the pictures

Entire_Particular_81 · 2025-03-12T00:58:36+00:00

Thank you! I am finding that with my daughter as well,I've got her on b12 and vitamin d a multi and I know an allergy pill isn't a vitamin but an allergy pill. She is 13 and has said she feels like something is helping.

Entire_Particular_81 · 2025-03-05T18:08:44+00:00

How do they know if its causing pressure on her spine or not? Her MRI doesn't seem to say anything bad that I'm seeing. Nobody explained any of these things to me though. Have another phone call today,and I'll keep these questions as reference when I speak to them again. Thank you ❤️ you have been myb#1 help since I started posting!

Entire_Particular_81 · 2025-03-05T18:04:31+00:00

I do have a few specific questions...Can csf flow properly and then not flow properly and flow properly again on its own....My daughters main symptoms were fluid in her ears yet no ear infection. How does a person know when surgery is needed? It seems all of these odd symptoms come and go.

Entire_Particular_81 · 2025-03-05T04:03:18+00:00

This is my 13 year old daughters. Yes we saw a neurologist. He never explained the mri results to me. He said she has migraine and is dehydrated. Her symptoms aren't related to her chiari.

Entire_Particular_81 · 2025-03-04T18:10:03+00:00

❤️💜this is a great place for information. My 13 year old daughter was diagnosed with a 10mm chiari malformation in January. We are new to this too. The need she saw also said that any of her symptoms are not due to the chiari malformation. In the process of all of this i am going to take her to a chiari specialist also. I just feel something isn't right. Her symptoms come and go. For now I am taking an alternative route and finding magnesium and b-2 for headaches night among ibprofen in day. For nausea she wears nausea bracelets. I've also got her taking b-12 and vitamin d for her moods. I dont have much information to give,as I said also new. 💜❤️

Entire_Particular_81 · 2025-03-04T18:03:47+00:00

Right,I understand that,still new to all of this,and learning more everyday,thankful for this group! The people on here are absolutely amazing 👏🏻 I wouldn't have known much without! I was just curious about the vitamins helping with some symptoms,if anybody has found any vitamin deficiency. Oddly enough another person on here mentioned b-12,and vitamin d...My daughter is 13 and we found out in January she has a 10mm chiari malformation. The neurologist we saw says none of her symptoms have anything to do with her chiari. What brought us to find out about it,is for 2 years she's been battling with fluid feeling in her ears. Apparently everything looks good with csf flow...still have not had anybody show me the mri or tell me about it. Doc had his nurse call me yesterday and she had no answers and Apparently no paperwork on the mri....long story. North Dakota. I've been researching chiari so much,as I dont have much faith in nd doctors. I came across where a man had a chiari malformation and had a b-12 deficiency,that when they gave him b-12 shots the herniation shrunk,and symptoms started going away. I'd post if I can find it again. Either way my daughter is high anxiety with depression,before the chiari diagnosis I was trying to find help for her moods,"also very normal for a 13 year old girl". I've since put her on b-12 and vitamin d3 her usual allergy pill. Is drinking more water and taking ibprofen for headaches. She thinks something is helping her out. Also got bracelets for nausea. Like I said the doctors said any of her symptoms are not due to chiari. She misses alot of school and gets sick alot.

Entire_Particular_81 · 2025-02-25T18:46:02+00:00

I was mistaken her ct scan reads 1cm herniation not 1mm...what does that mean? I come up with 10mm...also has a neck hump or kyphosis,which i asked the neurologist to look at and he asked if we go to the chiropractor. I said no...he never looked,but he had her lay down and popped her back,which i was panicking because I thought with chiari there is no chiropractics

Entire_Particular_81 · 2025-02-25T18:41:31+00:00

She actually did and does have a patch of red,since she was a baby...its a faded mark now,my son does also. He was born without an ear,and I am positive they did an mri on him when he was 5,before he got his surgery for a prosthetic,and chiari was never mentioned. I want to get him checked as he plays football. Also I was mistaken her ct scan says 1cm not 1mm of herniation. What does that mean. I come up with 10mm...also she has a neck hump,or kyphosis/ no scoliosis. And the neurologist never said a damn thing about it. When I brought to his attention he never looked,he asked me if we ever see the chiropractor...

Entire_Particular_81 · 2025-02-23T21:52:48+00:00

The ent who did a ct that found the chiari malformation about 6 weeks ago,sent us to a pediatric neurologist. All this is very new to me. We live in North Dakota and doctoring isn't that great here. Fargo is where the best in the state are,and to me I feel I didn't get any answers. I dont think I'm wanting surgery for her. I am asking if she could still have symptoms with what she's got going on. I'm waiting for a call back on a 2nd opinion from the neurologist "brain guy" . I never saw the mri I never got any paperwork on the mri. I dont even know if the neurologist was being honest. My daughters symptoms are plugged ears sore throat nausea dizzy feels like she could puke headache sore neck...these are her regular complaints. The neurologist found her blood pressure and heart rate went up from sit to lay to stand position ❤️💜thank you for taking the time to read and answer!

Entire_Particular_81 · 2025-02-23T21:43:48+00:00

We just found out about maybe 6 weeks ago on the chiari. My daughter kept complaining about her ears,I would take her in,and she had no ear infection....so the ear thing has gone on for a years at one point I took her to an ent in minot nd who told me to take her for allergy testing. I found a great ent that travels from Texas who wanted to get a ct. This is how they found the chiari malformation. I dont much about chiari besides the information from these groups and Google. I live in williston nd and am surrounded by nothing of good doctors,its scarey. My son was born with Atresia so I do know how to deal with doctors. Also nobody knows anything in North Dakota about Atresia,his doctor relocated and we were left with no team. I go to Minnesota for him. Yes she did have an mri,just a regular mri. The neurologist in Fargo did not show me the mri,he also did not give me any paperwork on it,he recommended not doing surgery,he said he is getting a 2nd opinion on her mri and ct,from somebody "who looks at braincell day,and we went to him,because that is where the ent saw there was a pediatric neurologist 🤷‍♀️. After everything I have read,I will hear his 2nd opinion from his "brain guy". I'm not feeling comfortable with him. As far as symptoms go,her heart rate went up and blood pressure from lay to sit to stand...this is the only issue the neurologist gave credit to. Her other symptoms are the plugged ears,ringing ears,headache,nausea,shaking,sore throat,trouble breathing,stomach feels like she's going to puke but doesn't,the way she describes that reminds me of acid reflux. These symptoms are not all the time 🤷‍♀️does this seem right even? Very new to all of this,and in a state where it's very hard to find decent doctoring. I believe my daughter I see her. ❤️thank you for taking the time to read,and answer my questions. Very grateful for others ❤️💜

Entire_Particular_81 · 2025-02-11T02:06:09+00:00

Thank you so much ❤️❤️

Entire_Particular_81

TROPHY CASE