Living with Chiari

Well problems started in late May 2010. It started out with me having stabbing chest pains every time I sneezed, coughed, or strained the slightest bit. I had noticed that when i made a wrong step or turn this would cause a stabbing pain also. June 2010 I was at work and I sneezed and the pain was so intense my BP, heart rate was so high they sent me to the emergency room. This is when I had chest x ray I was told i had a chest strain and given a meds and sent home. So a couple of weeks later I had to follow up with my doctor still having the pain and she said that it would fade away in due time. It did leave but my left breast was numb so here I go again back to the Dr and I was sent for my 1st mammogram nothing found there. So I was sent to see a neurologist for a tendonitis test. Nothing found there and this in when I get my 1st MRI.

My 1st MRI found Syrinx and I was refereed to a neurosurgeon. He sent me for my 2nd MRI when i went back for the results I was sent back to do another one of the brain to see the flow of CSF w/w/o contrast. when I went back for these results he said that I had CMI w/ syrinx. He was ready for surgery like the next week but I wasn't ready so I got a second opinion. My 2nd doctor looked at all my films and he confirmed I needed surgery but he didn't specialize in that type of surgery so this is how i ended up at Emory Hospital.

My 1st appt. at Emory was April 29 2011, they reviewed my films and here I go again going for another MRI but this one was different. He order a full spinal, and brain MRI w/w/o contrast on May 11 2011.This was the longest test ever but it was worth it. So I got my results back on Friday 13th and he confirmed that I did need surgery but I didn't have to have the surgery but my condition was getting worse and that was about the only way that may get some type of relief.

MY CONIDITIONS

constance burning in my left arm and hand

blurred vision

burning in my feet

numbness

neck pain and headaches

1 Like

Hi..and WELCOME....

I am so happy that you had doctors that were listening to you..some folks go dr. to dr. for years before getting the correst diagnosis....So, thats a plus for you.

When is your surgery???? I was in the hospital 1 week..others have only been for 3-4 days...

Good luck and PLEASE keep us updated.

Blessings,

Lori

MY SURGERY WILL BE ON MAY 26 @ EMORY IN ATLANTA GA

Oh, So happy that you don't have to wait too long...the waiting is hard. You will be in our thoughts and prayers.

Blessings,

Lori

THANK YOU

Oh...You are so welcome!!! We are all in this journey together..trust me, it was tough to deal with ...but honestly, it does get better.

I hated the feeling of being so alone in this Chiari ordeal....Once properly diagnosed and treated..not cured...my life began to get better..as I said before..it did take me a long time to feel/see the improvements..but they came..

I found that the lack of folks in my family that didn't quite understand what I was going through on a daily basis so lonely and frustrating...

I hope you find this group as wonderful as I have..I am no longer alone...nether are YOU!!!!

Blessings,

Lori

Hi!!

It's great that you are getting your surgery done so quickly. I had mine 2 months ago and I would do it all again. I was so afraid of the pain after, but the only complaint I had after surgery was that my feet hurt. That was from the straps they use to hold you in place for surgery. I had a bit of a stiff neck, but streatching and moving is key. So no matter if it stiff and hard to move...MOVE. It will save you from a lot of pain in the future. I was on only Tylenol for the pain 5 days after surgery and that was mostly because my shoulder hurt while I continued on to rehab for my walking. Turns out that most likely happened during surgery I had gotten 4 herniated discs due to another disorder I have called Ehlers-Danlos Syndrome (EDS) and the position I had to be in for the surgery. I wouldn't have changed a thing though and am glad you are getting things done so quickly. Good Luck!!

Much Love and Blessings,

Crystal

thanks Crystal I’ll keep you all up to date on my surgery.



Crystal said:

Hi!!

It's great that you are getting your surgery done so quickly. I had mine 2 months ago and I would do it all again. I was so afraid of the pain after, but the only complaint I had after surgery was that my feet hurt. That was from the straps they use to hold you in place for surgery. I had a bit of a stiff neck, but streatching and moving is key. So no matter if it stiff and hard to move...MOVE. It will save you from a lot of pain in the future. I was on only Tylenol for the pain 5 days after surgery and that was mostly because my shoulder hurt while I continued on to rehab for my walking. Turns out that most likely happened during surgery I had gotten 4 herniated discs due to another disorder I have called Ehlers-Danlos Syndrome (EDS) and the position I had to be in for the surgery. I wouldn't have changed a thing though and am glad you are getting things done so quickly. Good Luck!!

Much Love and Blessings,

Crystal

It really does help to have someone that understand what we are going thru.



Abby said:

Having a great support system helps so much, because we understand what your going through, we know because we live it everyday.

Most folks don't understand Chiari, I know I didn't either, so I educated myself, and sought out a great support group of friends. These folks on here are wonderful.

So glad you are part of our Chiari Family, and know that you are loved, cared for and prayed for.

Sending you hugs,

Abby

Like i said i knew what i had but wasn’t ready for surgery then but the DR WAS TO GUNHO to do surgery.



lori said:

Oh...You are so welcome!!! We are all in this journey together..trust me, it was tough to deal with ...but honestly, it does get better.

I hated the feeling of being so alone in this Chiari ordeal....Once properly diagnosed and treated..not cured...my life began to get better..as I said before..it did take me a long time to feel/see the improvements..but they came..

I found that the lack of folks in my family that didn't quite understand what I was going through on a daily basis so lonely and frustrating...

I hope you find this group as wonderful as I have..I am no longer alone...nether are YOU!!!!

Blessings,

Lori

Please keep us posted. Good Luck!!