Hello, my name is Crystal M. and I was recently diagnosed with Chiari 1 Malformation and on January 11th I will be having the decompression surgery. I would love any advice or encouragement at this time. Thank you so much! I look forward to hearing from everyone!:-)
Nice to meet you Gabriela! Well I have been having problems for the last 5 or 6 years and my symptoms keep getting worse and more frequent. When I went to the neurosurgeon he told me it would only get worse, so I thought surgery was the only way to go. It is now affecting my everyday life. If you feel like you can deal with the symptoms maybe you should wait. It is a tough decision to make. Let's definitely keep in touch!
Hello Catdiva and welcome to this site. I am also new here and I am glad you have also found it. I noticed you were diagnosed in Nov 2011 and now you're scheduled for Jan 11th. I was diagnosed in Dec and just today my Neurosurgeon has given me the option to go ahead with the surgery or wait and monitor my Syringomyelia by having another MRI in 3mos. I am curious to know if this was an option for you or how you came about being scheduled so soon. (I say soon, but honestly I don't know if this is normally how things move along, it just seems soon to me)
I normally hear fellow Chiarians relieved that they are finally having this surgery done, I admire that really, because I am not a decisive person and I really would've rather my NS to have given me no options.
Best of luck to you. I will pray that your NS has skillful and guided hands. I have not had surgery as of yet and the symptoms some days are unbearable. but I muddle through... thank goodness for FMLA so I can still keep my job. I was just diagnosed in Sept 2011 but my symptoms are long and sometimes painful. I have chosen to just ride it out for as long as I can. I do so with the help of hot rice pad for my neck and shoulders, warm baths -- Neurontin for pain, (it does dull it not never takes it away) Topamax for Migraines(daily regime) and at nigh time I take Amitriptylin to help me sleep. I need to try and stay as functional as possible. While life has slowed down for me for the past couple of years I try to stay positive and still do activities like camping, fishing, just being around family and friends. No more shopping for me though. It's to loud for me. No more rollerblading(my choice of exercise) because it does get to bumpy. I have found stretching does help and relaxes me too ( thanks for the advice from a member ((Christine)) on this site).
Please stay down as much as possible after surgery and hopefully you will have someone with you for a couple weeks that can help you with things.
A Chiari sister!!
~Lori
Nice to meet you Lori! Thank you so much for the prayers! Yes Chiari can make everyday life just a little harder some days and the pain is horrible. It got to the point that I couldn't take it anymore. I get extremely tired, can't work out anymore, I've gained a lot of weight. Hopefully the surgery will help me get back to normal. I will definitely keep you posted on everything! Thank you so much for your support!:-)
Lori Dutcher said:
Best of luck to you. I will pray that your NS has skillful and guided hands. I have not had surgery as of yet and the symptoms some days are unbearable. but I muddle through... thank goodness for FMLA so I can still keep my job. I was just diagnosed in Sept 2011 but my symptoms are long and sometimes painful. I have chosen to just ride it out for as long as I can. I do so with the help of hot rice pad for my neck and shoulders, warm baths -- Neurontin for pain, (it does dull it not never takes it away) Topamax for Migraines(daily regime) and at nigh time I take Amitriptylin to help me sleep. I need to try and stay as functional as possible. While life has slowed down for me for the past couple of years I try to stay positive and still do activities like camping, fishing, just being around family and friends. No more shopping for me though. It's to loud for me. No more rollerblading(my choice of exercise) because it does get to bumpy. I have found stretching does help and relaxes me too ( thanks for the advice from a member ((Christine)) on this site).
Please stay down as much as possible after surgery and hopefully you will have someone with you for a couple weeks that can help you with things.
A Chiari sister!!
~Lori
Hi CatDiva:) My name is Crystal M. also:) Welcome to the site! There are a lot of wonderful people here. I’m still fairly new myself. I also plan on have the surgery, but I don’t have a date yet. My symptoms started after I was rearended in July 2007. I was diagnosed in October of 2010 with Chiari and Syringomyelia. I was also diagnosed with multiple herniated discs in 2008. After my CM and SM diagnosis, my NS wanted wait and see, since he said my symptoms weren’t bad enough. In the last 6 months, I have deteriorated very quickly. So, I’m trying to get in with a Chiari Specialist now. If someone is going to be cutting into my head, I want them to have as much experience as possible. I wish you good luck with your surgery and hope your recovery is as smooth as possible. I look forward to getting to know you better:)
Crystal
Hey, Hey, Hey! Welcome to the site. I told you that you would meet wonderful and encouraging people. As for the surgery...well, let's talk about these next couple of days...I want you to rest as much as you can and try to relax. I know that is easier said then done. But here is the good news: You know what is causing the pain and you are doing something about it. You have probably the best doctor in the DMV, and you have the love and support of your family....AND YOU HAVE ALL OF US!
I had concerns about having brain surgery, but I knew it was the best decision. It has been a little over 4 months and I feel GREAT....and that is my prayer for you.
Kick Chiari's BUTT!!
-M
Good luck on the 11th! I will be keeping you in my prayers :) Try to not be scared and dont let pain get too bad without saying something the first few days.
Carla