Throughout this month I have several appointments regarding my eyes, heart, and scoliosis.
To keep you updated I decided to post them here.
Oct. 1st @ 2:15: Ophthalmologist Appt.
Oct. 2nd (Walk-in): Blood-work
Oct. 6th @ 1:00: Echocardiogram Appt.
Oct 22nd @ 1:30: Orthopedic Surgeon Appt.
Throughout this entire process I was convinced that there was something else going on. I couldn’t come up with any ideas as to why my spine would be moving, but knew that the initial diagnosis of Idiopathic Scoliosis was incorrect.
A few weeks later one of my family members was visiting from out of state and informed my mother of the fact that autoimmune disorders and Marfan Syndrome run on my fathers side of my family. She made me a list of different things to get tested for, which I completed the next week.
I had told my PA of my concerns and she immediately did what is called an ANA test. ANA stands for Anti-nuclear antibody and tests your blood for multiple autoimmune disorders.
This test came back the same exact day around 10 pm, completely clear. So I checked that off of my list.
I had also told my PA that I had a family history of Marfan Syndrome. She knew enough about Marfans to tell me that I didn’t look like I had it but decided to send me to a cardiologist to make sure.
Two weeks ago I had my very first cardiologist appointment. My EKG came back normal, but my blood pressure was high for the first time in my life. This confused me but I wrote it off as just being nervous for my appointment. When the cardiologist came into the room, he brought a sheet of paper that explained the different things on the scale for diagnosing someone with Marfan Syndrome.
He then told me that you need 7 items on this scale to be diagnosed. After we went over everything on the paper, I had a confirmed diagnosis of Marfan Syndrome.
The hospital visit was really quick and really quite interesting. I waited for about 15 minutes before being called back into the X-Ray room, which I thought was unusual because I didn’t have an appointment.
*I am not really a fan of walk-ins because they always seem to take forever.
After getting changed and taking off my necklace I was brought back to the room where the actual X-Ray was being taken. The tech that took care of me that day was great.
She took about 5 or 6 different X-Rays of my spine, which took about ten minutes all together. I was starting to become nervous but the tech handled my anxiety really well.
My husband called me back to the area (he got to watch everything) where the computer was and I asked the tech what she thought. While she wasn’t really supposed to give me her opinion she did anyway because I assured her that what she said wasn’t going to make me lose my mind.
This is what she showed me:
She said that, in her opinion, it looked like my spine was starting to twist at the bottom. My husband and I agreed with her. I then asked her if she had seen worse, she laughed and said “Definitely”.
She then led me back to the changing room and I was sent on my way.
Days later I got a call from my doctors office and they told me that my upper curve is 20-25 degrees and my lower curve is 25 degrees. I was very happy to finally have some numbers associated with my curvature.
At this point in time I still had no idea what was wrong with me but I finally felt like we were getting somewhere.
During the month of February I had started to develop severe back pain. My back muscles would spasm and drive me to the point where I couldn’t breathe in very deep. Because of this, I decided to pay a visit to the chiropractor.
During our first meeting we did x-rays to decide what type of treatment to pursue. I had never had any x-rays taken of my back before but I still didn’t think anything of it because it’s standard procedure for a first visit.
After a few minutes, the chiropractor came into the small room and asked me if I had ever seen an x-ray of my spine before. I of course, said no. At this point in time I was beginning to get a little worried. That’s just me though, I am naturally a worrier.
This is what he showed me:
My thought process was “Okay, this isn’t so bad, he can probably make it not hurt so bad and I’ll be alright”.
Yeah, I was wrong.
Three months later I had quit going to the chiropractor because I couldn’t stand the pain anymore. Eventually, I decided to go to my primary doctor to see what they could do for me.
They took an x-ray of my lower back to see why it was causing me so much pain:
It moved. I was prescribed pain medication and was referred to the hospital to get a full spine x-ray to see what was happening.