So I haven't been able to get on as much lately as I would like. Between being a single mom, doctors appt. after appt. and the never ending-ever changing dynamic which is now my life thanks to Chiari, it's seems I just can't find the time.
My days seem to go by so fast. Between PT 2x a week, atleast 1 doctors appt. a week and the 15+ hours I sleep a day....
So, I have been diagnosed with both central and obstructive sleep apnea, fibromyalgia and restless leg syndrome to go along with the carpal tunnel and Chiari. And my NS wants a lumbar puncture done, an EMG and a Nerve Conduction Study, which he told me of on August 2nd and I have called 3 times about them and have yet to get a call back from his office on when these are going to take place. And he also said that I am going to have to have the full decompression done.
Seems like it never ends. Some days I just want to curl up in my bed and say to hell with it all. But then I think about my son, who goes Monday to have his MRI's done to check for Chiari and TCS, and I think of the wonderful Chiarians I have met who are worse than me and have put their faith and trust in me to spread awareness and help with research. And the ones I hope to meet with the group my mom and I are trying to put together.
I'm just so frustrated. I went 2 weeks ago to my pain management doc and told him that the Tramadol he had put me on didn't seem to be doing much. If my HA was at a 9 or 10, it might knock it down to a 7 or 8, but wouldn't get rid of it, or help me sleep so I could try to sleep it off. And he said that's good and kept me on it. And even worse, I'm suppose to take it every 8 hours, which I have to take it most days like that, but he only prescribes me 42 pills for the whole month! He's suppose to be knowledgeable in Chiari, so I don't know if I should try to find someone else or what. And he put me on a cream for the Fibro??
I am sorry your having such a hard time. Many of your issues could be caused by your Chiari. I thought I had restless leg syndrome before my surgery and many people have similiar symptoms to Fibromyalgia also. Have you seen a neurosurgeon that treats a lot of Chiari patients? I also did physical therapy before I had my decompression and it made me feel worse.
It doesn't sound like your pain management doctor is listening to you. Can you look for another doctor? Sometimes a PCP is a better fit when it comes to listening to patients needs. It often takes going to many many doctors before you find the right one. It's time consuming, frustrating sometimes humiliating but when you find the right doctor or mix of doctors it's completely worth it.
I don't know what kind of cream he put you on but a lot of people have found some relief with Arnica Cream. You can get it in any health food store or on line. I'll give you a few links with information.
We all try to keep our spirits up one way or another. Sometimes we do just need a day to pull the covers over your head and rest. We all need to figure out what the right path is for us. Chiari is a very frustrating condition. I hope you start to feel better soon
Thank you for you kind supportive words Emmaline. I just wish my NS had done the complete decompression the first time and been done with it. That's the only thing that makes me double think. I have full confidence in his surgical skills. As for the the help, yes. My parents, grandparents and brothers are awesome with helping me and my son.
Emmaline said:
Oh Jessi, it all seems so overwhelming when we are in it. And some days it totally is. Take it one minute at a time if you have to. All the separate issues we are treated for take up a lot of time. It would help if we could go to one physician for all issues connected to the Chiari.
If you have the surgery it will take care of so much for you! It amazes me that so many Chiarians are diagnosed with fibro, yet when they have the surgery, it just disappears! Why are we subjected to so many different diagnoses when it usually is JUST Chiari symptoms?
You need to have confidence in your NS, if you don't get another opinion. If you have surgery, will you have help at home? Sending you hugs...
Thank you for the support and helpful information Wendy. My NS says that he has had several Chiari patients, but he is not considered a specialist in the field, which is why I have considered going to Mayfield. As for the pain management doc, my PCP is the one who referred me to him and he is suppose to have alot of experience with Chiari patients also. The cream is a compound cream with 3 different meds in it. But you have to rub it in for atleast 2 minutes and that ends up making my shoulders hurt and my carpal tunnel act up. And it doesn't seem to help at all! I will for sure look into the Arnica cream because I will try anything at this point. Thank you.
wendyanne said:
Jessi Lin,
I am sorry your having such a hard time. Many of your issues could be caused by your Chiari. I thought I had restless leg syndrome before my surgery and many people have similiar symptoms to Fibromyalgia also. Have you seen a neurosurgeon that treats a lot of Chiari patients? I also did physical therapy before I had my decompression and it made me feel worse.
It doesn't sound like your pain management doctor is listening to you. Can you look for another doctor? Sometimes a PCP is a better fit when it comes to listening to patients needs. It often takes going to many many doctors before you find the right one. It's time consuming, frustrating sometimes humiliating but when you find the right doctor or mix of doctors it's completely worth it.
I don't know what kind of cream he put you on but a lot of people have found some relief with Arnica Cream. You can get it in any health food store or on line. I'll give you a few links with information.
We all try to keep our spirits up one way or another. Sometimes we do just need a day to pull the covers over your head and rest. We all need to figure out what the right path is for us. Chiari is a very frustrating condition. I hope you start to feel better soon