Hello,

My name is Katie, I'm 30 years old and have for almost a year now been living with constant pain after a violent fall down a flight of concrete stairs.
I have great insurance thankfully so over the course of the year I have seen many a specialist Dr, had many a procedure and taken many, many medications but I never really got better , the pain only increased if anything and I had several complications along the way.
I didn't have a diagnosis for 7 months but then my pain management Dr idiagnosed with CRPS because of chronic inflammation of my right sciatic nerve, the inflammation and sciatic pain continued to increase as did the alloydinia and lower back pain. I have been in a bunch on meds for nerve pain, chopping and changing frequently. Something wasn't sitting right with me, I just felt like something was wrong and the Dr's were missing something.
So my husband got me an appointment with Dr Pradeep Chopra of Pawtucket, Rhode Island (we're from NY) who diagnosed me with several problems. The main problem being a tethered spinal cord. WTF?!
Then Complex Regional Pain Syndrome, Small Fibre Neuropathy (both I already knew) POTS - Postural Orthostatic Tachycardia Syndrome, Ehlers-Danlos Syndrome and finally Mast Cell Activation Syndrome. That's a lot to take in!

I went back to Dr Chopra a few weeks later for 8 day outpatient Ketamine treatment which was the most unbelievable experience of my life and it did help my burning skin pain some.
So having a tethered spinal cord means that the bottom of my spinal cord is fused, so it is not free to move around like anyone else's. For me this means lower back pain and deathly sciatica in my right leg and a vice like grip all over my left leg then the alloydinia (CRPS burning pain) on my right thigh and hip.
The pain happens because I am pulling on my spinal cord when doing basic daily activities, bending, sitting, walking. Then CRPS as a result of being in chronic pain.
I haven't been able to work for almost a year and I had just got married two months before all of this started, luckily my husband has been able to support me and we have very good insurance through his law firm. I am originally from Northern Ireland so I don't know what I would have done if our insurance wasn't so good, I must have had at least 15 MRI's at this point and having to navigate the American health care system would have been a nightmare.
The whole thing has been incredibly stressful, not to mention the pain and the loss of the life I had before, everything is different now.
When I was initially admitted to hospital for 10 days, there was one point when the pain was so bad that I actually thought I was dying I was in so much pain, I felt like I was sinking down through the bed and down through the floor, it was absolutely bizarre! It was so bad they called the crash team!!! But obviously I didn't die! The worse part of the whole this has been the not know, having no firm diagnosis. That brings me to Dr Chopra in Rhode Island, our appointment lasted 7 hours!! The most incredibly comprehensive and through Dr I have ever come across, an incredible man. So he referred me to a neurosurgeon and a few weeks later I have spinal surgery booked for 24th Feb to untether my spinal cord. And who knows after that.
That's my story. If anyone is going through anything similar please feel free to ask any questions.

Best, pain free wishes to everyone,
Katie


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Hello and Welcome Katie,

My goodness, you HAVE had a lot to take in. I am glad you have been able to access good care and also see Dr. Chopra. We often refer new members to his video on CRPS diagnosis. It is not uncommon for diagnosis to take a while. Many of us have been there with the frustration, worry and gnashing of teeth while waiting for answers.

Please come see us on the CRPS/RSD subforum. We have a friendly group always ready to share support and advice. Some of us get ketamine (self included) so we understand that as well.

I deeply hope that your upcoming procedure brings you relief. Wouldn't that be amazing? If you come post about that on the CRPs forum we can send prayers and healing vibes your way before your surgery. Hang in there and be kind to yourself. Healing and improvement is possible. I hope they find their way to you soon!

Thank you LittlePaw, what lovely words!
I'm still new to the forum and trying to navigate but I'm sure we'll cross paths in the RSD/CRPS forum as you suggested.
Many thanks,
Katie


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