I keep meaning to post an update. A lot has happened. So, I am going to just cut and past emails I sent to Mrs. Susie and Mr. Michael. My fingers are terribly tender and I am unsure if I could type it all out again.
*warm huggs*
dani
I had my MRI. It had to be done in stages. The first stage was last Friday. When I arrived I was told the air conditioning system for the MRI machine was broken and the MRI was reaching 90 degrees. I told him I could reschedule but he said he had called a repair men that would be there any minute. We did get the lumbar done, but when we were finished he said the MRI machine was up to 98 degrees and that he needed to shut it down or he would risk damaging the equipment. He seemed frustrated with the repairmen, but.. I mean we had been in the middle of a freak winter storm system that apparently was effecting many states, not just ours. He wanted me to wait, but I just told him I was tired anyway and we could reschedule. He got me in for early afternoon on Monday. Monday we got the other 2 done. I did look at the copy of disks they gave me... But I wasn't really sure what I was looking at.
Friday I went into my spine specialist and she had a model spine set up to explain what was happening. My primary Levoscoliosis (the largest one that spans my lower thoracic and all of my lumbar. T10-SI) has increased again. Not by a lot. I am still within the "moderate" classification of cobb angle (45* degrees). Another 10-15 degrees before I reach "severe", so that is good. There is an increase in degeneration that reaches up to the lower thoracic now (T9-SI damage). The new damage is termed "moderate" but none of it is severe (damage because of the angle of the curvature / rotation on the verical axis). My discs all still look good. Narrowing, bone on bone, protrusions. Stenosis (narrowing) of the lower lumbar canal as well, but it isn't severe. Sclerosis (hardening) at the very bottom of my lumbar but it is mild. The dextroscoliosis (thoracic only T2-T9) has no notable increase (22* degrees). It is classified as "mild" cobb angle. Mild degeneration at the top of the thoracic. The discs look good. Narrowing of disc space of course but that is all. All of the rest of my spine looks okay, either mild or not worth much of note. Secondary compensatory curve has no increase. Those develop as a "defense mechanism" of the spine trying to re align. It is "normal" for progressive idiopathic scoliosis. So, all in all it does look like my spine is holding up okay, all things considered.
There was something strange that had concerned the radiologist. A "mass" that was picked up in the thoracic MRI. They are unsure where it is exactly. They said that it looked like it was on either my liver or my pancreas. They sent her the film and findings. They included this "mass" in the findings report of the thoracic set of images. She already has an appointment for me to see my Primary Care on Monday afternoon at 1pm. He knows what is happening and will explain more when I see him. She said they are setting up a CT scan as well. When I asked why the rush she said it was a "large mass" that needs to be investigated.
With regards to my spine I can see a surgeon at any point now. It isn't something that I am prepared to do. I told her why. With the girls this young, us needing a new home and needing to have family from ******* help if we did... I would like dodge surgery as long as I can. She completely understands and also feels it is best for me to wait as long as possible. If at any point I change my mind, she will set it up a consult for me. She does want to increase my meds. She feels that muscle relaxer needs to be increased and that inflammation is also causing a lot of my problems. The unusual wear and angle increases are to blame. I decided to give these med increases a try. If I can avoid surgery for a little while longer that would be good. At this point I am willing to try anything.
Well, this email turned out to be a small novel. Yikes!
*hugg*
dani
Yikes, today is Tuesday the 15th.
I have all the best of intentions of mailing this... then I get busy with another task or appointment. *sigh* Well, I saw Dr. *****, my primary care, yesterday. They are setting up a CT scan. He isn't sure what all he will scan since I have reached my max out of pocket for the year. He will be able to get me in the new health center near my house for the CT, thank goodness. I have had tenderness just below my ribs on my left side abdomen since last fall. I had been going to him thinking perhaps I had urinary tract problems... Since there was always a small amount of blood in my urine each time, I was put on antibiotics. We were a bit skeptical from the start on the urinary tract problems. My Hypoparathyroidism (it’s a bit rare) effects many parts of my body. My muscles, brain... and my kidneys. In any case, he is on the case! He will get to the bottom things.
I was supposed to get my teeth removed and sent to the lab yesterday, but I was not able to due to the new appointment with Dr. *****. Today, I have to drive into *********** to the ************* ******* center to see my Endocrinologist. I have a massive increase in my Tetanic contractions. They are often in my feet, arms and face. They are frustrating and make the muscles that quiver feel tired. They contract for hours and sometimes days. I look so silly when it happens! In any case, the contractions that happen in my throat are the bad ones. As are the deposit increases in my blood (calcium. It effect brain and heart). I am not sure what he will want to do. With a little luck and a lot of prayer, maybe he can fix it easily. ..also, I have relapsed on soda pop. No one is going to be happy about that. My oral specialist nor my endocrine specialist. I didn’t mean to. At the time, I just thought well maybe one wouldn’t hurt.. Now I'm guzzling 4 to 5 a day.
Ahh! My teeth! I will have to have them removed and send them off tomorrow morning. Yikes! I will be toothless for a few days. I know! I have more important things to worry about other than vanity.... Still, I hate to be without them for that long. I feel really uncomfortable without them.
All of my meds were doubled or tripled. I am having a hard time concentrating. The baclofen and amitriptyline are the hardest of them all. *** **** amitriptyline is a hard adjustment. The increase in the nabumetone is messing with my tummy, but other wise okay. The baclofen is ....is very gosh darned hard too. I am hoping the increase in steroid, NSAID, muscle relaxers, opioids and antidepressants will work. In the mean time, it is going to be a really long week trying to adjust to it all. There is no slow increases to reach dosage this time. Double or nothing I guess. I hope more than anything the increases will keep down the inflammation and slow down the rate of damage. I am already at 45* degrees cobb angle in my largest deformity. My primary progressive levoscoliosis (T10-SI) is the larger one. We need to slow this down because if we don’t I will have no choice but to have the surgery done.... I am however really glad my dextroscoliosis ( T2- T9) has not progressed. I mean, everything else is changing, but the deformity that has worried me the most is holding steady. On a more vain note, it is nice having the dextroscoliosis because I was never able to get used to putting my purse on my left shoulder and now I get to put it on my right shoulder again.
...on a side note. It gets frustrating hearing all my doctors (who I care very much for) telling me to, "Take it easy. Go slow. Ask for help, do not push yourself. Do not worry.". Sheesh! They sound like parakeets.
*hugg*
dani