On Wednesday last, we drove to Portland, Oregon, where we spent the night in a shabby, cheap motel, managed the incredibly tangled streets on both sides of the 405, and found our way to my appointment on Thursday at Oregon Health and Sciences University (OHSU).
An endocrinologist there had been recommended to me by another TCI patient, and this doctor had done well in getting her bones into shape for the fusion surgery, and also had discussed the patient with Dr. B, her neurosurgeon (and mine) at TCI. I felt good going into the appointment, knowing he already was familiar with the type of fusion I needed, and my surgeon.
Dr. Madison was great, speaking to me without condescension, asking many questions which sparked better answers than I had given on the questionairre I'd filled out at home. He cared, he was business-like and he was decisive in a way that really gave me confidence in him.
Basically, Dr. Madison feels that my bones are not "that bad." He feels the report from my recent density scan was in error (I think he called it a "medical artifact"). I've written previously that one statement on my report claimed that I had lost 8% of my bone mass at the lumbar region in less than a year.
Dr. M felt that was "virtually impossible," unless you have a severely aggressive bone cancer, in which case, you'd know that. [Knowing this now, I wonder why such an error is allowed out the door! Why did the radiologist who wrote that in my report not double check and understand that such a classification is likely in error?]
He told me that the lumbar region, in his opinion, is not the best place to determine the density of the bone throughout the body because so much is usually happening in the lumbar region on most people. He feels the hip gives a more accurate picture. And my hip bones look good.
He felt I had been given way too much pamidronate, and that it was not necessary for me to have kept on the Actonel for the last 18 months while I've also been on the pamidronate treatment. I asked if this excessive dose of pamidronate would harm me, and he said no.
I was smitten with him over one particular comment he made. I have mentioned before that one of the benefits of my Tethered Cord surgery was the surprising elimination of my TMJ problems. All of my life, my jaw has locked into a position that would not allow me to eat a normally sized sandwich, because it was too wide. I grew used to it, but in the hospital after my TC surgery, I noticed right away that I was able to open my mouth to eat and not have my jaw lock and not allow me to open any further. I've mentioned this to a few doctors and not had any good theories bounced back. When I mentioned this to Dr. M, he said, "That is probably because you were intubated for 7.5 hours during surgery and your mouth was held open for a long time."
Such common sense is so hard to find these days, and always surprises me when I hear it. That made perfect sense! And I so like understanding the how's and why's of these things.
He scheduled me right away for more labs and another DEXA scan. Before I left, he ventured, "I might change my mind after seeing your labs and new DEXA, but right now, I'd say that your bones are not that bad. That you have mild to moderate osteopenia. As far as the surgery goes, the only way to determine for sure how your bones are in the area of surgery is to take a bone biopsy. I will not do these because they are so painful for the patient."
"I might put you on six months of Forteo shots after I see your labs and scan. In that case, you would come back in to see me in about three months."
I went on ahead to the lab where they pulled 8 vials of blood, then my husband and I got lost, trying to find where the DEXA's are done. This is a huge university with many buildings, old ones and new ones and old ones more recently added on to. Where I needed to go, the building had 3 elevators, but only one, the C elevator, would take me to the floor where the bone scans were done. Eventually, lost in ICU, we were rescued by a kind doctor who led us far out of his way to the elevator that would take us to the correct floor.
By this time, my brain was fried. Too many new people, talking too much, thinking too much, getting lost, following directions...so that after the DEXA was done, the technician told me to get dressed and I could leave. I walked to the chair where my clothes were, and put on my shoes and started to walk out from behind the curtain, with just the gown still on. Thankfully, I recognized my mistake before going too far!
We got lost leaving Portland, as well, and ended up going a bit further south than we needed to, but we saw some different communities and streets, and the sky was bright blue with the snow-covered tops of Mt. St. Helens and Mt. Hood shining close by.
Going over to Portland and coming home, except for the times we were in the busiest traffic, I did not wear a collar or CTO vest. Those things just cause me so much "brain pain." I figured I'd survive the trip better without that painful passing-out feeling (I've since figured out, I think, what this is, which I'll address in another post). I just prayed, "Lord, if we get into an accident, let me die outright rather than be paralyzed."
I came away feeling very good about the new endocrinologist. It looks like I might have the option of having the fusion I so desperately need, yet it looks like it could be a year before I could get it done. I like having another year to make up my mind about this, to be sure. I keep going up and down, on a roller-coaster. Like a trainer in the corner of the ring before his boxer is about to step back into the fight, I have been coaching myself and cheering myself on about this surgery.
"You can do it! You'll be so much better! Don't listen to the failed fusion stories! You have no choice!"
Then something happens, and I can't have the surgery at the time I have pumped myself up into expecting. So then, in survival mode, I tell myself the surgery would have made me worse, the Lord knew what was best for me, I just have to get used to not having the option of getting better.
Then...the bell rings, the wooden stool gets swept away, the trainer pats me on the back and I stumble forward back into the center of the ring, arms up and swinging, "You can do this! You'll be so much better..."