Deja Vu
So, I was back to work in the Fall of 2015, I hung in there until 2016. I am not going to say it was easy. I was still working 2-3 jobs. Hospice, Wickenburg Hospital, and Gold Canyon. I saw myself struggling, I was getting behind. As time went on, I struggled with getting my documentation in on time, because I was so fatigued when I got home, I was going to bed by 7:00pm. I saw myself struggling juggling those 3 jobs. Prioritizing my life. I was having a hard time physically, getting slower, the pain was increasing. I almost feel Deja Vu symptoms again I tell my husband. He thinks I am crazy.
During one of my ER visits for pelvic pain, the CT Scan showed 'pseudoarticulation of L5", I didnt think much of it, as this is what Bertolottis Syndrome is and remember, I have had 2 surgeries to fix this previously. But, as the pain increased, I had another ER visit, and another CT revealed the L5 vertebrae had grown through the sacrum again. This could not be happening, this had to be a mistake and they must just be seeing the previous bone graft?
I decide to make several appointments. One with my Barrows Physiatrist, one with my Barrows Neurosurgeon and one for a second opinion with a Mayo Neurosurgeon. Dr Singh, my Barrows Physiatrist is first, he does a nuclear bone scan, it shows uptake in those areas and he determines the bone has grown back. Mayo Neurosurgeon is second, they do a pelvic xray and he views a CT scan that I bring in. Guess what shows up on the Pelvic Xray, you will never guess.. Chondrosarcoma. How does this happen? He never acknowledges this, I find it by getting a copy of my images on the online portal. What he does acknowledge is that the CT Scan shows the bone graft I had done in 2013 has "reabsorbed" (denigrated) and allowed that L5 vertebrae to grow back through my sacrum and ileum for the 3rd time! This can't be real. But, he doesn't seem to know what "Bertolotti's" is in the first place, or have any knowledge what may be best for my condition. So I know immediately he is not the best choice for me as a surgeon. I wait for my 3rd appointment in November of 2016 with Dr Taro Kaibara with Barrows. My last day of work was October 26th 2016.
I meet with Dr Kaibara, he reviews my imaging thus far, he agrees with all the above, but does not completely understand how or why the bone (L5) grows back the way it does, for the 3rd time. He wants to do an MRI, but I can no longer have MRI's due to my Spinal Cord Stimulator, which means I will have to have a Myelogram. Myelograms can be harmful and contraindicated for those with Arachnoiditis, this he knows, but it is the only option we have for the proper diagnosis and for him to make a safe decision to move forward with surgery. At this point I may not be a surgical candidate due to the risk of paralyzation from the clumped nerve roots (Arachnoiditis). I see Dr Singh (Physiatrist with Barrows) again, I discuss with him how much this surgery means to me, how I feel its just a bone issue and my confidence in Dr Kaibara, he agrees to advocate for me. My Myelogram is in January. The results of the Myelogram show evidence of Cauda Equina Syndrome, clumping of the Cauda Equina at L3, and the Arachnoiditis has now progressed to the final stages of Adhesive Arachnoiditis. In just 3 short years this disease has progressed to the worst stage. The nerve roots are now just not "Clumped" they are "adhered" together. The Myelogram shows much more damage to my spine, stenosis, DJD, pseudoarthosis, and other issues, but for the purpose of this blog, it will not matter. I am praying daily he will decide to do the surgery. Months pass, I am home, I am alone, I am in pain, I have limited physical abilities and I am beginning to feel the unobvious loss of a chronic illness.
During one of my ER visits for pelvic pain, the CT Scan showed 'pseudoarticulation of L5", I didnt think much of it, as this is what Bertolottis Syndrome is and remember, I have had 2 surgeries to fix this previously. But, as the pain increased, I had another ER visit, and another CT revealed the L5 vertebrae had grown through the sacrum again. This could not be happening, this had to be a mistake and they must just be seeing the previous bone graft?
I decide to make several appointments. One with my Barrows Physiatrist, one with my Barrows Neurosurgeon and one for a second opinion with a Mayo Neurosurgeon. Dr Singh, my Barrows Physiatrist is first, he does a nuclear bone scan, it shows uptake in those areas and he determines the bone has grown back. Mayo Neurosurgeon is second, they do a pelvic xray and he views a CT scan that I bring in. Guess what shows up on the Pelvic Xray, you will never guess.. Chondrosarcoma. How does this happen? He never acknowledges this, I find it by getting a copy of my images on the online portal. What he does acknowledge is that the CT Scan shows the bone graft I had done in 2013 has "reabsorbed" (denigrated) and allowed that L5 vertebrae to grow back through my sacrum and ileum for the 3rd time! This can't be real. But, he doesn't seem to know what "Bertolotti's" is in the first place, or have any knowledge what may be best for my condition. So I know immediately he is not the best choice for me as a surgeon. I wait for my 3rd appointment in November of 2016 with Dr Taro Kaibara with Barrows. My last day of work was October 26th 2016.
I meet with Dr Kaibara, he reviews my imaging thus far, he agrees with all the above, but does not completely understand how or why the bone (L5) grows back the way it does, for the 3rd time. He wants to do an MRI, but I can no longer have MRI's due to my Spinal Cord Stimulator, which means I will have to have a Myelogram. Myelograms can be harmful and contraindicated for those with Arachnoiditis, this he knows, but it is the only option we have for the proper diagnosis and for him to make a safe decision to move forward with surgery. At this point I may not be a surgical candidate due to the risk of paralyzation from the clumped nerve roots (Arachnoiditis). I see Dr Singh (Physiatrist with Barrows) again, I discuss with him how much this surgery means to me, how I feel its just a bone issue and my confidence in Dr Kaibara, he agrees to advocate for me. My Myelogram is in January. The results of the Myelogram show evidence of Cauda Equina Syndrome, clumping of the Cauda Equina at L3, and the Arachnoiditis has now progressed to the final stages of Adhesive Arachnoiditis. In just 3 short years this disease has progressed to the worst stage. The nerve roots are now just not "Clumped" they are "adhered" together. The Myelogram shows much more damage to my spine, stenosis, DJD, pseudoarthosis, and other issues, but for the purpose of this blog, it will not matter. I am praying daily he will decide to do the surgery. Months pass, I am home, I am alone, I am in pain, I have limited physical abilities and I am beginning to feel the unobvious loss of a chronic illness.
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