Hello everyone! I am new to this site and felt I should introduce myself.
My name is Crystal, I am a married 28 y/o mother of 2. 3 years ago the headache started and NEVER went away. The only thing that it did was increase and decrease in intesity. After 3 years of feeling awful and gaining no answers from any doctors and getting the run around many times, I was finally diagnosed November 17th and had decompression surgery on November 28th. I was diagnosed when I started to develop new symptoms (eye twitching, heavy feeling in my legs, and insomnia). These were my newest symptoms, among the many others that have crept up on me over the years. I started to think that I was going crazy as I was frequently treated by my provider. She told me flat out that she didn't know what was wrong and to come back next month. This happened at every appointment. She tried me on Diamox (only gave me a horrible tingling sensation my my hands and feet), and Topamax (this made me not care about ANYTHING). I was send for spinal taps and MRIs with still no answers. Finally, one of her associates looked over my most recent MRI (from 6 months before) and told her what was wrong. This wasn't done until I happened to e-mail her office to let her know I was going into the E.R. for the 3rd time in a month. I was so lucky to have a nurse respond to me by saying she is out of the office until next week, and I was being referred to someone else! I am now 3 weeks and 1 day post op and can already see the improvements. I of course have good days and bad days and have had a horrible cold for the past 3 days that has set me back a bit, but I am dealing with it : )
I feel for everyone here, and appreciate any support that is offered to me, I only have the support of a select few of my family members at the time and this group has been wonderful for me to read into.
I would just like to say Thank YOU for allowing me to be here and read all of what you have to say and also allowing me to vent!
Wow What a Story, It breaks my heart when I read about people who have suffered so long either misdiagnosed or no diagnosis at all (This seems to beee somewhat common) M y "Horrible Headache" days were only about 3 months before I finally got an MRI and diagnosis.
One thing about this forum is that you can ask questions and even though were no Doctors, we will do our best to try and answer-
But you will find people here who will support you and many of us who will bray for you (I happen to be a Pastor- so I got a direct line LOL- Just Kidding)
It sounds like you are improving so that is good. Looking back I had many symptoms of Chiari but always had another excuse for them. Isn't every working mom with 4 kids tired and have headaches? The symptoms that finally did me in were the awful balance issue, constant vertigo, living in a drunken haze and hoarse voice.
I have felt better since surgery in Sept 2011 than I have in years.
I am so glad you are here. It sounds like you are doing as well as can be expected after brain surgery and getting a cold on top of it! Be patient with yourself and listen to your body. Get plenty of rest and don't push yourself. We are all here for you :)
Christine, I don't think it means anything really bad. It was just annoying. People thought I was sick all the time. It has went away since surgery.
Diana
Christine H. said:
Diana, I have been suffering with hoarseness too for the past year. What does that mean? Diana Smirl said:
Welcome!
It sounds like you are improving so that is good. Looking back I had many symptoms of Chiari but always had another excuse for them. Isn't every working mom with 4 kids tired and have headaches? The symptoms that finally did me in were the awful balance issue, constant vertigo, living in a drunken haze and hoarse voice.
I have felt better since surgery in Sept 2011 than I have in years.
Thank you everyone for being supportive and so kind! I am so happy to have found more people in my situation that I am able to talk to about things. It's sad how we have all had to battle this blindly and usually without any support from our doctors. This is something that I have never heard of before and to find you all is a true blessing in my life, I hope that I can contribute and give back as much as I can : )
My name is Crystal also. I’m sorry that you suffered so long before being diagnosed:( I’ve dealt with that too. I have had horrible headaches and back/neck pain since I was rearended on 7/3/07. I was told many times that my pain couldn’t be that bad. They did an MRI about a year after my accident and found multiple herniated discs, but failed to find the Chiari. I finally saw a NS a little over a year ago, because I had reached my breaking point and none of the other treatments were working. I went in to discuss back surgery, but left being told I either had a very large brain tumor or Chiari. He orderd another MRI and found that I had Chiari and Syringomyelia. He said that my symptoms weren’t bad enough and I should just wait and be reevaluated in 2 years. I had already suffered for 3 years! How could it not be bad enough? Well, in the last year several new symptoms have presented themselves and my back/neck pain and headaches have gotten even worse. So, now I’m trying to get in with a Chiari Specialist before it gets even worse. So…my point is, I understand the frustration that you went through. I am so glad that you were properly diagnosed and got the surgery. It is very encouraging to know that you’ve already seen an improvement:) I am so happy for you:) I hope you continue to get better and see improvements every day:)
So many of us here have been 'blown off' by doctors, saying Chiari is NOT the cause of our many issues...sad but true.
I am thrilled that you have been finally diagnosed and treated....the cold you have is not helping your recovery from the decompression....you have to keep in mind that you are less than 1 mth post-op...your body is still healing and adjusting to the CSF changes.
You told us you have 2 kids...that is the hardest part, I found....not having the kids....LOL...but trying to be super mom after surgery....Now is the time for you to ask those around you, who are supportive, to help you out..I know, it is hard sometimes to ask for help..but ...you have to be sure to take this time to rest, eat well...take care of YOU.
I am so happy that you are seeing improvements from your surgery!!!!
Good to meet you..looking forward to getting to know you.
So glad to have you here!! WELCOME!! What a story you have...I am so sorry you had to deal with such a long time before a diagnosis! I am so glad that you finally found a great doctor who was able to get you the treatment you needed!
I had the decompression surgery on November 23, so we aren't too far apart in the rolls of the "Zipperhead Club". I hope that your recovery continues to go well, keep us updated on how you're doing. Let us know if we can do anything for you. Everyone here is so nice and helpful!
Wishing you and your family a wonderful, blessed, and safe Christmas! (also a cold free one too!)
I am also new to the site, I am a mother of three and been dealing with this and just recently discovered what was wrong. I relate to what your going through and will keep you in my thoughts and prayers. I am here to support you in any way I can.