I have learned a lot about my health in the last 8 months. Some days I’m happy to have answers, but I also will admit it’s disappointing what that means for my future.
No I don’t have the big “C”, but I do have family and friends that have been through that. And that’s a fear that lives in the back of my head with every constant reminder that I will never be healthy for the rest of my life.
So what surgery did I have 8 months ago?
I had my L5S1, lower lumbar spinal disc replaced. A year ago, almost to the day, I was diagnosed with degenerative disc disease. This was all before turning 28. At this point my twins were only 9 months old (7 months adjusted) and I was told I would need to have major back surgery.
After my appointment, I went home and did all the research I could do to find out what this was and why its happening to me. I had been in severe back pain for months but I was glad to have some answers.
The best way to describe degenerative disc disease is: its a naturally occurring thing that the body does as it ages. The cushioning in your spine begins to wear away. My dr that day told me I had the back of a 70 year old. And I’m a new mom to 3 very young little ones.
My x-rays showed that my spine was grinding bone on bone. That the disc had worn away so much and was pinching nerves every time I moved. This made it very challenging to take care of my kids and household duties. I couldn’t lift my babies up off the floor, or sit with them during tummy time. I wasn’t sleeping because the pain was so bad. I had to make a decision to have surgery and have a 6 to 8 week recovery time with no lifting or wait until the kids were older. But with pain injections to help stop the pain. I decided it would be better to miss out on the baby/toddler stage then to wait. If I waited then there was the chance they would remember me always hurting and not being a “MOM”.
While I was waiting for insurance to go through all of the approvals needed to schedule surgery I looked into why this was happening to me. Why I was needing surgery so young.
I dont honestly remember now how I found this new disease but once I came across it all the boxes began to be checked and EVERYTHING was making sense to me. EVERYTHING from my life was clicking.
I have Elhers Danlos Syndrome type 3, hypermobility.
I’ll go more into eds in another post, but I wanted to mention it because it explains why recovery has be so hard from my disc replacement surgery.
Surgery day, I have always had a hard time with IV placement, this was no different. I know which side, right vs left, which spot, arm vs hand, depending on what is being done where is should be placed. The nurse placed it where I thought would be a good spot. It went after 2 tries but it hurt. I didnt know if this was because of being nervous for major back surgery or if placent was bad. After I got into the operating room, half asleep from the medication, a different nurse noticed the line was placed bad. I am so glad that they saw it, they were able to fix the issue.
Post op, this was supposed to be a 1 night stay at the surgery center. But I wasn’t recovering as fast as they wanted. I hate that everything has guidelines for the normal cases. I told my surgeon the day before at my preop appointment that I have problems woth recovering and it take me longer then normal people. I tend to black out and I just can’t be pushed as hard/as fast. Unfortunately this wasn’t shared with the postop team.
When the recovery nurses stated the recovery process to get home the next morning I kept blacking out. I know its important to get up and move after surgery, or even when your sick. It helps speed up recovery but as some one with POTS moving quickly is not good.
POTS is Postural orthostatic tachycardia syndrome. This is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance. And the symptoms worsen when dealing with illnesses. So after being on anesthesia my blood pressure was not under control. And any movements made it worse.
Once it became time for me to go home the nurses concern for my black outs and not meeting the walking requirements for discharge mean that I would have to be moved to the hospital for an impatient stay.
I don’t remember a lot from that morning. A ptsd trauma pattern I think, I have blacked it out of my memory. I didn’t want to be transferred. I wanted to go home and just cry because once again in my life it felt like no one believed me. No one had knowledge of what was wrong with my body. I hadn’t been diagnosed with pots or eds yet at this point. I had only started researching why my body fails me all the time.
KAMPSS 