im from wichita falls. been trying to start a support group here for a decade, its tough going. people all handle their DX differently. in my case, it built up to a sudden catastrophic fail. there are those who think that im faking, lazy, a poser, etc.(including my siblings and in laws)
i am a guinea pig , doctors wont take the time to understand, they just throw pills at it. its MY body, and I should be able to have something to say about it.
exercise is a problem as well. it aggravates my pain levels and causes more muscle spasticity. and it seems to kink my lumbar shunt. physical therapists wont listen, and their routine has landed me in the hospital more than once. (guess whose fault they said it was?)
in recent years the NPH has made things more complex. how do you differentiate between symptoms of a stroke and your daily pain levels? light sensitivity and mild seizures are migraine triggers, as are nausea and dumping. no matter how you explain it, you end up labelled a hypochondriac...
That is why I had my surgery done in San Antonio. The doctors I saw in Dallas all said I had nothing wrong with me! It was so very frustrating knowing that you have issues and it seems that no other person cares or wants to help. Cancer research and treatment gets tons of funding and publicity - not that it doesn't deserve it. However, CM can be life ending as well. The worst part is that people have NO empathy for chiari survivors. We struggle every moment of every day just to try and function at some capacity. We do not want to feel the way we do, but we do.
So, with all that said, welcome to the group! We are here for you and we hear ya!
That is why I had my surgery done in San Antonio. The doctors I saw in Dallas all said I had nothing wrong with me! It was so very frustrating knowing that you have issues and it seems that no other person cares or wants to help. Cancer research and treatment gets tons of funding and publicity - not that it doesn't deserve it. However, CM can be life ending as well. The worst part is that people have NO empathy for chiari survivors. We struggle every moment of every day just to try and function at some capacity. We do not want to feel the way we do, but we do.
So, with all that said, welcome to the group! We are here for you and we hear ya!
What doctor do you see in San Antonio if you do not mind me asking? I am looking for one that does pediatrics.
lillianb said:
Weebleviii said:
That is why I had my surgery done in San Antonio. The doctors I saw in Dallas all said I had nothing wrong with me! It was so very frustrating knowing that you have issues and it seems that no other person cares or wants to help. Cancer research and treatment gets tons of funding and publicity - not that it doesn't deserve it. However, CM can be life ending as well. The worst part is that people have NO empathy for chiari survivors. We struggle every moment of every day just to try and function at some capacity. We do not want to feel the way we do, but we do.
So, with all that said, welcome to the group! We are here for you and we hear ya!
I am from Wichita falls as well had my surgery there too. Dr. Gleason did mine in 2005. Before I found him they through pills at me as well hope you find what you need.