Support Lisa's Journey to Health and Recovery

Hello all

if you don’t know me my name is Lisa, for years I’ve been fighting symptoms that come from a Chiari Malformation and Syringomyelia diagnosis. But it wasn’t found until just a few years ago. I initially was treated for dizzy spells, headaches, with uncertainty of why than fibromyalgia and interstitial cystitis. My family dr finally ordered a MRI of my head and back which

showed the Chiari Malformation and syrnix. I was sent to the neurosurgeon at geisinger ready to finally be understood of feeling the way I do and was sent away in tears telling me that my symptoms had nothing to do with these diagnoses. So I went a couple more years declining in health I was in more all over body pain, more painful headaches, fatigue that just felt like anything and everything I may have left was completely sucked out of me, body weakness I can’t even hold my hands up long enough in the shower some days to wash my hair. I had enough I know Chiari Malformation is not common so I did my research and was feeling confident in what I have learned and by my own symptoms this is the root cause. I scheduled with a Neurosurgeon in Hershey that confirmed a lot of my symptoms go with the diagnosis but he was still off on some of the info I learned and I didn’t like that although i felt relief I was still not confident in letting him complete the surgery. So after more research I found a Neurosurgeon who completely specializes in this type of surgery. He is in Pittsburgh not to far away but enough that he did a couple video visits with me to confirm everything I have been suffering from is caused by both the Chiari malformation and syrinx and if I don’t get the surgery done the syrnix could cause more damage to the spine and nerves. He’s hoping that by completing the decompression surgery the csf fluid stuck on the spine will release because I won’t have that pressure anymore and praying it hasn’t already caused permanent damage from being there so long.

Dr Freidlander at UPMC in Pittsburgh is the dr completing the surgery.

I’m explaining and asking for your help because of the travel and hotel expenses and recovery time. With no vacation time Rob my significant other is hoping to be home to help take care of the kids and myself. I will not be able to look down for awhile or lift more than 5 lbs for a few weeks than 10lbs few more weeks and gradually go up from there that makes it hard to care for our children Olive & Alton. I’ve done a lot on my own on this journey due to his work schedule even fight through tears of pain just trying to get through the day but this I can’t do alone. Because of the rush the Neurosurgeon put on the surgery we have no time to save and prepare although I knew it was eventually coming I didn’t realize I couldn’t choose when if it was up to me I’d wait until the fall, but with the decline in how I’m feeling and the possibility I could permanently make things worse there is no more Waiting.

We truly appreciate any help you can give & believe me wouldn’t ask if we thought we could do it.

Thank you for your time in reading about my journey and where I stand with it now. We appreciate anything you can do.

Rob, Lisa, Olive & Alton