So confused

Hey everyone, i am new to the group. This is my first post. My 15 year old daughter has been in and out of the ER for the last 2 months and out of school for the same amount of time. She has an underlying condition of Orthostatic Intollerance (OI. She was diagnosed with it in 2006 and it flares up a few times a year everytime she gets a bug. Well back in October she started having her OI episodes and they were becoming very frequent. Took her to her primary doctor and found out she had mono. That explained the flare ups. The mono hit her really hard and it was quite a battle keeping her comfortable for a couple weeks. Then she started having headaches, not normal headaches, really bad headaches. Found her on the floor in her room one morning crying with her headache. Went to the Er again and the found out she had viral meningitis along with the mono. Well within two days we were back at the ER. They did MRI and the radiologist found "minimal displacement of cerebellar tonsils". Showed this finding to her Cardiologist and he said she needed to get to a Neurologist soon as she looks to have Chiari. He said that completely explains her symptoms all during the last month. She has had the following:

Itchy scalp

Numb/tingle feeling in head, arms, legs

Very cold sensation in the head and arms

Pressure in the head

Heavy head

Stiff neck

Extreme headaches (but her headaches are not constant)

Stomach pain

Diarrhea off and on

Sporadic loss of strength in legs making it difficult to move

Insomnia that seems to be getting worse

Burning eyes

Ringing in the ears

Heartbeat feels slow when legs and arms are weak

Heartbeat races when standing or walking for too long

We got to a pediatric Neurologist yesterday and he did not even address the MRI results or anything we were telling him about her issues. He wanted to keep talking about her having chronic fatue.

I am so disappointed and hurt for her right now. Life has stopped for her. Does she suffer all day everyday, no. Some days are much better than others, but there is never a completely good day.

Thank you for letting me vent. I wish everyone well.

Thank you for the reply. I have researched POTS to the extreme since she first was diagnosed with it. And you are right. This could all totally be part of the POTS. I guess what disturbs me is her cardiologist, who treats her for the POTS has suggested she see a neurologist because of the ER radiologist finding. And you are totally correct the neurologist who dismissed the MRI, we are done with him. Thank you again. It is so hard to see her like this and so frustrating that I can not fix things.

I would press to see a neurosurgeon instead of a neurologist. He could order a CINE flow study to see if chiari is causing the symptoms. Like Beeba says some could be POTS. Plus Mono causes a lot of weird symptoms as well as meningitis. I hope your daughter feels better soon. She must be miserable! Praying you get to the bottom on her issues!

I don’t mean to scare you but with all the testing we all go through while drs are trying to figure out what is wrong with us, usually somewhere a lumbar puncture/spinal tap is ordered. Please
be cautious and research this if you’re not already aware that they can be very dangerous for those of us w/chiari! I was seeing a neuroopthamologist for headaches & other symptoms, he ordered an MRI…he said it was normal. He then ordered a spinal tap…my health went downhill rapidly after. 8 months later, another MRI, I read my report & it said “borderline chiari malformation.” Wth is that? I did my own research…I compared my previous MRI before my spinal tap to the new one…it herniated my brain 6mm further into my spinal column! My neurosurgeon confirmed this. The other Dr was going to order ANOTHER spinal after the 2nd MRI, thank God I researched myself. I have no medical background either. Lol. Sorry this is so long but I’m a mother too & often we do what drs order believing its what’s best but with drs not being educated on chiari I just wanted to share to help you with info. Best of luck & ill keep you both in my prayers.

Thank you for info. I had no idea. She had a spinal tap (that is when they found the meningitis) before the MRI. i just do not know what to think of all this. It is like there is something new everyday. Yesterday she said she was gagging when she tried to eat, that went on till early evening, then she was nauseous when she finally did eat something. The day before she said she had pressure, like the pressure in her head, in her neck. And her head would hurt when she has a bowel movement. The same kind of pain when she sneezes. Her system is so off she can not keep her eyes open during the day but is up all night. That is even when we try to keep her up and as active as possible during the day. And her eyes. The whites of her eyes are so dull, that is so hard for me to see, even when she has a few "good" hours. Thank you again!

Sorry to hear of the issues you are describing with your daughter. I wasn't going to respond(everyone seems to be giving you good advice) but your last post(above) raised several red flags for me. Classic Chiari symptoms(many of which your daughter has) are exacerbated by Valslava maneuvers(coughing, sneezing, lifting heavy weights, straining to have a bowel movement). The MRI may not be important(and the reading of "minimal cerebellar tonsillar ectopia" is common). that being said, it would serve your daughter well to see someone with greater comfort treating Chiari patients(ideally, a neurologist, who can complete the work-up, e.g. cine MRI and entire spine MRI if they think indicated). Most neurosurgeons would prefer to ahve a neurologist perform the work-up and have the patient seen by a neurosurgeon when surgery is being considered(and it is too early for that discussion in your daughter's case from what is described...meaning she would need additional work-up at least).

That being said, many neurologists are not confortable/familiar with Chiari(true to many MDs in general) so you may need to see a Chiari neurosurgeon to get a better response.