CM1/Epilepsy/HPP Frustrations

[Frankie424]

As I read previous posts and comments, I realize that we're not alone. Many people have multiple disorders/illnesses that accompany Chiari and I feel an alliance with your frustrations and feelings of confusion, hopelessness, and disappointment. What are we supposed to do next after getting a second opinion of, "It sounds like you are on a good plan. Stick with it," when we KNOW our bodies and that "plan" is not going to work. It seems like doctors are unwilling and scared to try something for fear of its interraction with another symptom from an additional illness. There are so many unanswered questions and it just gets overwhelming at times, epecially for people that are going through this alone. Who, in Texas, can and is willing to help someone with a Dx of CM1, epilepsy, hypophosphophatasia, syringomelia, and craniosynostostis when AEDs and pain management aren't working? That's my question.

[Frankie424]

I thank you for your thoughts and prayers. My boyfriend is actually the one with Chiari but I feel a need and want to support him through his research and recent medical diagnoses. The emergency surgery for his craniosynostostis was performed at 1 year of age and he wasn't officially Dx with Chiari until 2 years ago, at 30 years old. Unfortunately, the 7 AEDs haven't helped the seizures and the muscle pain is getting worse, probably from the HPP and CM. We're on a constant battle to find info about a connection between the conditions, as are medical professionals, sure, but who wants to be a guinea pig when it comes to exploratory treatments...even if they are 100% paid for financially? There's just no way to determine if the benefits would outweigh the procedure and recovery. Bah, I could go on for hours, lol.

Seriously though, thanks for letting me vent and I'm glad there are resources to get people connected that are experiencing similar things. I appreciate ANY and ALL words.  

[selmaS]

Hi..true those with Craniosynostosis are likely to have chiari, but not all with chiari have this in relation ...and if I recall some syrinx and chiari can have marked improvement with surgery for the craniosynostosis and may not require surgery for the Chiari or syrinx.

I found that quite interesting, and again a good NS that is well experienced with Chiari should be able to guide her with all aspects of her conditions.

    "selma"

[Rahe28]

If I am not mistaken, the Craniosynostosis  is actually related too. I will have to look it up, but my son was diagnosed with it a 2 months old....so I did alot of research on it, and I believe it is related. I will look in his medical records and see what I can find and post it here. Sorry to hear that you suffer from it though...we were licky enough to be undiagnosed in his 1st year of life. I cant imagine what you have been through with that and the CHiari alone...then when you add the other stuff. My prayers and thoughts are with you.

[selmaS]

  Hi and welcome to the Chiari forum.

U may have to travel to find a Dr willing and able to treat not only ur chiari but ur other  medical issues not related to chiari such as the Hypophosphatasia and Craniosynostosis....the syringomyelia is chiari related and possibly the epilepsy could be related as well...

SO, u have to realize u may not have a Dr in ur area for all of these, when u may not have one that knows chiari itself...

Please research the drs on our Drs list and start there.....scroll to the bottom of this page and click on the Health Pages link to locate the page with the chiari specialist list....the list is not a referral, but a means to help u get started on research,

   I hope I was able to help

     "selma"