Chiari Online Support Group

5 year old with worried mom


Thank you very much for understanding. This is all very hard to deal with when I have trouble getting any answers form the doctors that are supposed to be treating my daughter. I have a very personal question to ask… has anyone had difficulty with their menstruation due to the having chiari? My daughter started her period at age 11 and it is horrible. She has and extremely heavy flow with very large blood clots. I considered taking her to the hospital after one episode when she called me crying because she said that she had bled all over the bedroom and bathroom floor because she bled through her clothes and couldnt get to the bathroom fast enough. Is this normal for someone with chiari or is this a separate problem all together?


Hey Stephanie,
For some (unknown) reason some medicos have the theory “The less you know the less stressed you will be” and this simply couldn’t be further from reality. Others try to treat us like mushrooms ie keep us in the dark and feed us up on bulls%$t, which is very frustrating.
It does seem that there may be a couple of issues that you are trying to navigate and your query actually needs a more complete investigation than a pcp would usually do. I’m in Australia and here we have a General Practitioner (GP) which is equivalent to your pcp. Then above that we have a physician, who investigates more complex matters and takes a more holistic view of the whole person. Then we have specialists above that, who are refined in a particular area. BUT, seeing a neurologist (Brain specialist) for issues of a gynaecological (Female) nature is a bit like having an electrician look at your car. Sure the electrician is a tradesman but a totally different trade to a mechanic. and by the same accord sure the neurologist is a dr, but their knowledge of the female hormone system is limited. So to cover the whole person and obtain a more holistic view, in my opinion, you need a physician. They can make referrals to all of the differing relevant specialists and collate all of the info, making a more complete assessment. They can often also be great advocates for patients. They are much less likely to ‘be treated like mushrooms’ as they are on a very similar level as specialists. Often when a specialist talks technical it can be overwhelming, a physician knows the technical jargon and can cut through it all.

Hope it helps
Merl from the Moderator Support Team


Thank you very much. I thought the same thing about it being a dumb idea to take her to her neurologist for a female issue …i guess it time to find her gynecologist…never thought she would need one at her age. It’s a little overwhelming.