So... at my appointment with my primary care I was told that they would all be reviewing my case and come to decisions about my care (midd july). To expect to hear back from "them" (all my specialists) in the comming weeks.
I was called and asked to come into the spine center (2 weeks ago). At that time my spine specialist updated my medicine. Set me up to get new exercise progamm. It should be x2s per week for 5 to 7 weeks (which ever my insurance will agree to). I was also told that it is time to "give serious consideration about seeing a surgeon". That we would talk more about it in a few weeks.
I then had an appointment last monday with my endocrinologist. My latest test show me holding strong at 58. I will continue the 50,000D2 per week with IV treatments, as needed, for the rest of my life. I am now considered "controled with treatment" in reguard to my hypoparathyroidism (inherited) and my low parathyroid absorption (0.0025-6). VERY good news.
He then told me that I am considered "stable enough for skeletal correction surgery". Then asked to speak frankly with my husband and I. He think I should wait as long as possible for surgery. He says he is "worried for you. Even though they are considered some what a safe... a surgery of this magnitude will be very hard on you." That "will likly be done in sections". But that "I support the decision you ultimatly make." And that "I was told by the rheumatologist that you have progressed considerably in the last few months and it is putting strain on your body and causing degenerative problems." I was told firmly that if I need anything, anything atall, even just an ear to listen, to call anytime. Then he set up my next few blood draws saying that "We can handle much of your care via the Lab and telephone calls now. I am very pleased with your progress." (He is about 1.5 hours drive away on good traffic days)
I am supposed to have a "sit down" talk with my primary care physician to "discuss your long term outlook and care. To go over your most recent labs and images.". Sometime in the next few weeks. I was also told that "You need new imaging (mri w/ dye), but you can take your time. I know your little ones are still on summer vacation."
Next month I am supposed to "discuss seeing a sugeon" with my spine specialists (both of them)..... At best, beacuse I am termed "adult onset" the damage done is mostly permanant. Correction will only bring me down to 20-30 degree cobb (where I was last fall). I will be in pain the rest of my life. There are long term problems with adult onset corrected curves. The damage in my thoracic and cervicle might force me to hop on the surgery train before I can afford it or am ready, if the damage continues at the same rate.
I have decided that I am going to take a back seat. Continue my ongoing "list of questions" that I will sit down and present them with once all the meetings are over. For now, I will continue to learn and listen to what they all have to say.
..On a positive note, the updates on my medicine are working really well. Ive been at a level 7 for a little over a week now. The medicine makes me "foggy" no doubt. Though it did ease up some... what I am experiencing right now is as good as it will get with my current "cocktail - combo". I have also enjoyed 4 to 5 hours of sleep per night, only waking 5 to 10 times per night. My mornings are wonderful again.
I realize that my "physical" comfort is only because of meds and will likly be short lived.... but goodness it is so nice to "truly breathe". The foggyness, is at times..... exhausting & silly. But, goodness it is nice to be comfortable.
So, that is what is going on.
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator