I received a call from the City of Hope Scheduling regarding our appointment on the 30th. Apparently, the Radiologist wanted us to return sooner for the tests so a determination could be made. I was a bit confused and concerned so asked the Radiologist to call me directly to discuss things. She was paged and I waited by the phone for the return call.
A few minutes later, Dr Beth Chen, called us here at home. Our discussion was quite informative. First and foremost, the tests we had scheduled were only necessary because their IT department couldn’t upload the information from the DVD I had provided them. I was very surprised that there was such trouble as I tested each disc beforehand. In any case, I told the doctor that we had already completed the tests, the images and reports were available and only a few weeks old. She wanted to see them ASAP so I agreed to drive up and meet with her the following morning.
I met Dr Chen on Tuesday at 9:00am. We sat together in their imaging room and viewed the original discs. Everything was clear and working. The doctor reviewed the MRI and immediately stated that Satomi was a candidate for the procedure. I was very relieved and we started to discuss the details of the procedure.
She indicated there are (3) variations of the procedure. The primary procedure involves injection of the bone cement into the bone directly. The second method involves the insertion of a balloon device into the damaged vertebrae to create a cavity for the cement prior to injection of the bone cement. The final method uses an ultrasonic device to remove damaged bone from within the vertebrae thus creating a cavity prior to injection of the bone cement. All have similar risks and success rates.
The primary concern is the possibility of the bone surrounding the bone cement to fracture and the cement enters the body and surrounding tissue. If this were to occur, a spinal surgeon will need to operate immediately and physically remove the bone cement. In such case, there is risk of paralysis.
It’s intimidating but the procedure still seems to be the right choice. Without the procedure, it is only a matter of time before Satomi’s pain will be in itself debilitating.
The operation will require her to be under general anesthesia and a likely overnight hospital stay. We’re returning to CoH on Tuesday the 29th to begin pre-op work and have the initial consultation with Dr Chen.
We traveled to City of Hope again to start the battery of tests to begin the work on Satomi’s spine. The passing of information the Oncology department to the Radiology department seemed to go smoothly until we actually arrived there. As a matter of practice, I reminded the MRI technician that Satomi had metal in her body from a previous operation. It is something that the Oncology department knew and we had discussed during our previous visit.
Someone forgot to tell the Radiologist. The tech said they couldn’t do the MRI.
After many phone calls and an extra 45 minutes of waiting, they changed the test to a non-contrast CT. The waiting continued and another 20 minutes past. While all these plans were changing, the Doctor that ordered the test became “unavailable”. The waiting was to continue.
Unfortunately, Satomi’s back pain just kept getting worse. We couldn’t wait for the Doctor anymore and had to leave. She was in a lot of pain as I rolled her across the “City” to the parking lot.
There is good and bad with dealing with such a large place but today was mostly bad. I can understand why the Doctor became unavailable but the miscommunication between departments was quite upsetting. The distance from our home is difficult for Satomi plus the inevitable waiting time.
We’ve reached out to our Orange County team to find a local doctor to perform the vertebroplasty. Satomi and I both don’t want to return there unless we absolutely have to.
[Update: As a backup to the local doctor plan, I made an appointment at City of Hope for Wednesday December 30th. If for some reason the local doctor refuses to treat her, I want CoH to still be in-line.]
During the intial exam at the City of Hope, the nurse took Satomi’s weight and height. Her weight is basically unchanged but her height was 140cm. Wait a minute…140cm?
Let me do the math. That’s about 55 inches or 4ft 7 inches. What?! My height challenged wife has consistently been 4 ft 11 inches. Now she’s 4 ft 7 inches? She’s lost 4 inches in height?! Damn…
Dr. Mortimer was very interested in Satomi’s spinal fracturers and was referring us to one of their Interventional Radiologist’s to consider her for a vertebroplasty. This type of injury is not uncommon for persons over 70 years old but very rare for someone only 41.
Vertebroplasty is a procedure where a hole is drilled into damaged vertebrae and liquid plastic is injected into it. The hydraulic pressure expands the crushed tissue and fills voids which strengtens the bones. Take a look at: http://www.radiologyinfo.org/en/info.cfm?pg=vertebro for more info.
It’s an outpatient procedure so it seems quite safe. We’re scheduling an MRI to begin the evaluation process.
The past Tuesday was a long day. We drove up to the City of Hope in Duarte-90 minutes with moderate traffic. It was quite different than all the other second opinions we’ve received. This was a big hospital. Our check-in process was efficient and organized but long. It involved several waiting periods and a walk through long hallways. Their facilities and services are quite impressive and everyone we met was friendly, knowledgable and supportive. The Oncology waiting room serviced patients for both exam and infusion so it was very crowded. There was art work, plaques, marketing, light and color intermixed with the sanitary hospital setting. Attractive but it still felt a bit impersonal.
They requested a full set of Satomi’s records and all of her Pathology slides. They were going to review it all. After another long wait we met with Dr. Joanne Mortimer, Professor and Vice Chair of the Medical Oncology department. After reviewing the documents, she confirmed that we got fine care. We focused our discussion on the future.
Apparently our Oncologist, Dr. Tetef, worked there for 10-years and was a trusted colleague and friend of the hospital. Her name was on a plaque on the wall in the waiting room. The more and more doctors I speak to, the more fortunate I feel that we have Dr. Tetef in our corner.
Dr. Mortimer recommended biophosphonates for Satomi’s osteopenia. Biophosphonates are the clinical name for Zometa which surprisingly is the same thing recommended by Dr. Chap and our own Dr. Tetef. That’s enough confidence for me. Our challenge now is getting it covered by insurance.
We’re done with our 2nd opinions.
Satomi is nauseas and can’t keep anything down. She has a dull pain in her right side lower back and a slight temperature. All signs are that she has another kidney stone. We had another CT done today to verify it. I watched the computer screen during the scan. Holy crap-She definitely has kidney stones.
The stones are in both kidneys with the biggest being on the left side. It’s at least 10mm across. That’s crazy big. Crap. It usually takes a day or two to get the results read and returned to the requesting doctor so I called our Urologist to give her a heads up. I ended up speaking with her nurse and am waiting for a call back.
Unless I hear something soon, I think we’re going to be make another ER visit. I just fricking hate the ER.
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[Update 8:30pm]
I spoke with the doctor and Satomi has a 13mm stone in her left kidney and a 7mm stone in her right kidney but amazingly nothing is blocked. The lack of blockage is also confirmed by Satomi’s healthy urination. Unfortunately the mere presence of these stones does not explain her nausea, vomiting, and temperature. The doctor is still waiting on the bloodwork to get more clues. It’ll be another day-or-two until that is available.
Besides the obvious discomfort, there seems to be no danger of serious complications. I am to take her to the ER if her temperature exceeds 101°F, she cannot keep down liquids, or if she becomes dehydrated. So at least for now, I don’t have to worry about the ER trip.
Also, we decided to stop all of Satomi’s antibiotics since there is no sign of UTI. I’ll talk with the doctor again tomorrow.
Satomi is in bed and trying to sleep.
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