Hi there, I'm going to start with an apology because I anticipate this being a very long read. I am desperate for answers though and am greatly appreciative of this forum. I have read some of the posts on here and I see people are very helpful, even if it's just to know I'm not alone.
To start my name is Shana and I'm a 24 year old full time first grade teacher at a private school.
When I was 13, during routine checks in the Gym a nurse came in and saw that I had a slight case of scoliosis. She sent a note home recommending I see a doctor but my mother ignored it because it said "slight". The following year I had another check that said similar and once again my mom ignored it. That year I started feeling fatigued and increased back pain so my mom ended up taking me to a doctor. Initially the doctor said I absolutely had a problem and I would ultimately need surgery as I was too far progressed for a brace but said I could wait a few years. At my first 3 month check up he took back what he said and told me my curves have progressed quickly and he gave me 6 months. I had my first surgery when I was 15 (2004). I had 2 curves (top 50, bottom 60) so I was given rods from my neck to my L-3. The surgery had a lot of complications, I had a bad infection, etc. Finally I started learning to cope with it and was feeling better until I started gradually having a significant amount of pain. Some time between 2009-2010 the pain was so bad on a regular basis that I started seeing a neurologist because my General MD though that was what I needed. I saw the Neurologist for a year with him pulling me back and forth but it ultimately came down to him having no idea what was wrong with me. He put me through an MRI with contrast and said that "something" was wrong in my lower back because the contrast went invisible at some point but he couldn't figure out what it was. I got fed up with him and started searching for another doctor. The only doctor that was willing to even look at me (due to prior surgeries) was at the Fort Lauderdale Spine Specialists. He looks at my MRI with me and within seconds told me I had fractured my L-4 so badly that it look like 2 separate bones. He worked with me very well and in June 2011 I had my 2nd surgery. He fused my L-4-S-1 and connected it to my previous fusion. The DR told me the fracture was even worse than he initially thought and I had 2 large cysts growing in between the broken bone. He also told me he's never seen a case so bad and couldn't believe I was capable of walking. Thankfully, this surgery did help however now I feel like it's going backwards. My pain is so extreme that my surgeon had me see a pain management doctor and I've since had 3 steroid shots in my back. Prior to the 2nd surgery I exercised A LOT and had lost a ton of weight (I am overweight). Post surgery I've gained all the weight back and I can't walk more than 20 steps without having to sit down and slouching forward. The pain management Dr said the pain is relating my SI joint. He wants to try to burn away the nerves so I don't feel the pain anymore, but with research I've seen most people have to redo it at least once a year. The other option (and if the burning doesn't work) is another surgery. This surgery would be fusing my SI joint so there is no movement to put pressure on the joint. Both of these options make me extremely nervous. First, I am only 24, to get shots in my back for the rest of my life (even though it's just once yearly) is overwhelming. Second, I fear that if I get this surgery I will then have an entirely fused spine that is going to start putting pressure in my hips and pelvis. I'm scared that this is going to be a never ending battle.
I also have this miserable popping. It feels like the popping of your knuckles but it comes from my lower spine and travels up into my ears. It hurts and leaves me extremely uncomfortable and startled. I've asked the doctor what it is and he just says not to worry and that it's normal. I'm not sure how normal it is and he said it would eventually stop and it hasn't even gotten close to stopping.
So my questions are- has anyone had this similar SI issue and what has been your results? What about the popping? Any idea what it is?
Thanks in advance!
~Shana
To start my name is Shana and I'm a 24 year old full time first grade teacher at a private school.
When I was 13, during routine checks in the Gym a nurse came in and saw that I had a slight case of scoliosis. She sent a note home recommending I see a doctor but my mother ignored it because it said "slight". The following year I had another check that said similar and once again my mom ignored it. That year I started feeling fatigued and increased back pain so my mom ended up taking me to a doctor. Initially the doctor said I absolutely had a problem and I would ultimately need surgery as I was too far progressed for a brace but said I could wait a few years. At my first 3 month check up he took back what he said and told me my curves have progressed quickly and he gave me 6 months. I had my first surgery when I was 15 (2004). I had 2 curves (top 50, bottom 60) so I was given rods from my neck to my L-3. The surgery had a lot of complications, I had a bad infection, etc. Finally I started learning to cope with it and was feeling better until I started gradually having a significant amount of pain. Some time between 2009-2010 the pain was so bad on a regular basis that I started seeing a neurologist because my General MD though that was what I needed. I saw the Neurologist for a year with him pulling me back and forth but it ultimately came down to him having no idea what was wrong with me. He put me through an MRI with contrast and said that "something" was wrong in my lower back because the contrast went invisible at some point but he couldn't figure out what it was. I got fed up with him and started searching for another doctor. The only doctor that was willing to even look at me (due to prior surgeries) was at the Fort Lauderdale Spine Specialists. He looks at my MRI with me and within seconds told me I had fractured my L-4 so badly that it look like 2 separate bones. He worked with me very well and in June 2011 I had my 2nd surgery. He fused my L-4-S-1 and connected it to my previous fusion. The DR told me the fracture was even worse than he initially thought and I had 2 large cysts growing in between the broken bone. He also told me he's never seen a case so bad and couldn't believe I was capable of walking. Thankfully, this surgery did help however now I feel like it's going backwards. My pain is so extreme that my surgeon had me see a pain management doctor and I've since had 3 steroid shots in my back. Prior to the 2nd surgery I exercised A LOT and had lost a ton of weight (I am overweight). Post surgery I've gained all the weight back and I can't walk more than 20 steps without having to sit down and slouching forward. The pain management Dr said the pain is relating my SI joint. He wants to try to burn away the nerves so I don't feel the pain anymore, but with research I've seen most people have to redo it at least once a year. The other option (and if the burning doesn't work) is another surgery. This surgery would be fusing my SI joint so there is no movement to put pressure on the joint. Both of these options make me extremely nervous. First, I am only 24, to get shots in my back for the rest of my life (even though it's just once yearly) is overwhelming. Second, I fear that if I get this surgery I will then have an entirely fused spine that is going to start putting pressure in my hips and pelvis. I'm scared that this is going to be a never ending battle.
I also have this miserable popping. It feels like the popping of your knuckles but it comes from my lower spine and travels up into my ears. It hurts and leaves me extremely uncomfortable and startled. I've asked the doctor what it is and he just says not to worry and that it's normal. I'm not sure how normal it is and he said it would eventually stop and it hasn't even gotten close to stopping.
So my questions are- has anyone had this similar SI issue and what has been your results? What about the popping? Any idea what it is?
Thanks in advance!
~Shana
Comment