Bleh, I have been avoiding an update mostly because I do not know what to make of it all..
First I am going to back up a bit. Kinda highlight. I have progressive spinal deformities that began when I was 27. I am 30 now. There is no cause to be found, yet. AKA Idiopathic. I have been though a battery of testing and re testing. Even an astronomically expensive series of genetic testing. I have a primary progressive Levoscoliosis that spans T10-SI. Lower thoracic through all of my lumbar. It is moderate classification of cobb angle. As a result my right hip is rotated towards the rear of my body and up into my ribs on the right hand side. My left hip is being crushed. I have a Dextroscoliosis T2-T9 (contained within the thoracic only). It pushes out my shoulder blade, pushes my ribs out on the side and makes my collar bone "seem" uneven. A compensatory "tilt" that forms as a "defense mechanism" to the spine trying to realign itself.
Okay so.. so the explanation is out of the way. I have to get x-rays done on a regular basis. Keep track of my progression. I am often asked why I am not give MRIs more regularly. First, having an MRI done every few months is far too costly, but second we already know what is being damaged and where just from looking at x rays. The MRIs are saved annually. I had to get my annual MRI done at the beginning of the year. I have to get all sections of my spine done. Each "section" takes 45mins to do. Because of minor mishaps I had to get sections done on different days and it dragged out the process a bit....
In between that time I had to see my Endocrinologist. A very kind and caring man who is obsessed with my blood due to something call Inherited Hypoparathyroidism (Not not a typo. It is just very rare.). It took all of my teeth (they crumbled out like chalk in 4 months time), my eyes (cataracts - lens implant), tetanic contractions (ones in my throat are difficult)... really the complications are quite scary and difficult at best. So, he takes my blood often and wont let me go very long without seeing him. When I went to visit him, amidst the MRI fiasco, he was very concerned over a series of tests he does routinely. Something about my "kidney function" and "creatine levels". He said he had been watching it carefully and that the numbers were looking worse and worse over the last 7 months. He would speak with my other doctors and get back with me. So, I don't give it another thought. He is always "concerned" over something and he always manages to "fix" whatever it is.
Then I get back to the last of my images with MRI. I am relieved to have it all done until I get a call... telling me to come into my spine specialist. I go in and she tells me that areas that were not damaged over the summer or damaged now. A long list of "classifications" and explanations of the damage. Narrowing of canal and space, bone on bone, sclerosis (just hardening), increase in curvature degrees (increased rotation on axis as well), protrusions / herniations. Remember for me that my disc are inflaming and "herniating / protruding" are different than most other people. The difference is mine are getting used to their new positions as my deformities progress. Other peoples are going out and in to vertebra and damaging the discs. My discs are not damaged. For me to have 2-3 spots hurting more so than usual is normal. They are just inflaming the area while they become accustomed to their new "positions". The concern is over the increase in curvature degree and that the "new" areas that have damage, have progressed quickly in only 6 months time. We talk about medications, mobility, the damage. Then she says that the radiologist put something odd in his report. He stated that they saw a "mass" that seemed to be in the area of the pancreas or liver. He suggests an CT to further investigate. She says she is going to talk with my other doctors about these findings and get back with me...
...so I come here and update all of you. Wondering what will come of these various meetings. I found out a few days later. More blood work for my kidney and creatine levels. Apparently it has to be checked anyway before a CT, so it is two birds with one stone. I get all the labs, drink their deceptive "fruit flavored caster oil" and get the little CT scan done without and with contrast dye. I know my doctor is on vacation for a week, so I am glad to be left the heck alone for a week at least.
I guess not. He went over my labs from the last 7 months and had teleconference meeting with my other doctors while on vacation. My kidney and creatine levels have worsened. I have to get them retested today. Though how they could have possibly worsened from just 4 weeks ago, I have no clue. Then she goes on to tell me that the cystic mass are on the inside and outside of my left kidney. I really think she misspoke because I was unaware that CT without, and again with, contrast dye could even see that sort of thing. Besides, cysts occur within everyone bodies, all the time. They burst and the body absorbs the fluid. I wont go into the long story about cysts while I was pregnant. I just knew about cysts from previous fiasco. I don't see what the big deal is. In any case, I have to go see them again to talk about what will happen next and get through a battery of blood work again today. So, now you all know what I know. I am angry for him doing this while he was supposed to be on vacation. I really thought I would be left alone for a week.
..then I get off the phone and see my husband sitting there. Pale. Worried. I was going to tell him, just thought maybe I would do it later (make it sound better). He walked in while I was on the phone. He is angry. He has long wanted someone too look into my kidneys. I kept having a series of labs and urine tests over the summer. With blood present in urine and white cell count slightly elevated we thought it was just UTIs. I just stopped bugging my doctor because the pain never went away and the antibiotics didn't seem to work. Besides, if it was a big deal I would have been more than just pain in my side. Not like everything else in my side, back, hips and legs hurt anyway... I tried hard to get him to lighten up and it didn't work. Now he wants to take me away on vacation to my favorite getaway spot in a sleepy little town called Jemez Springs for a week.
I still need to talk to someone about the veins in my legs going black (they are so ugly!!) it started a few months ago but is getting worse kinda fast. I still!!! Need get my teeth re-fitted and my eyes checked by the surgeon due to worsening problems. They have turned my schedule up side down. I am very flustered. I have really important things I need to tend to and they just cannot keep doing this to me. Also, it would be nice if they could give me a straight answer and tell me why the rush on the tests and what all these "meetings" are about. Don't get me wrong I am glad they are able to get me in for the tests so quickly... but all this fuss is starting to worry me a bit and I wont get to have any explanations until our big meeting in a week.
So now you know, what I know.
TWO roads diverged in a yellow wood And sorry I could not travel both And be one traveler, long I stood Chronic Pain ModeratorMail