Before I forget everything that's happened I need to write it down. I know there will be others that follow us down this path and I want to be able to share accurately.
Two months ago Dr. Friedman in LA referred Alex to Dr. Schaffer at Scripps Green Hospital in La Jolla (at my request). Dr. Schaffer was kind enough to look at Alex's abdominal CT (I asked his permission to mail it to him) before meeting with us. He also asked his interventional radiology team to take a look at the disk. The team agreed that there was an area they found suspicious and we met with Dr. Schaffer last month to discuss options. Dr. Schaffer though an ethanol ablation would be the best choice and we agreed. I want to note here that the UCSF team did not see a worthy target on this same CT.
We returned home and scheduled the procedure for June 18th. During the month at home UC Davis finally got the (2) PET/CTs with cosyntropin stimulation scheduled and completed. Two radiologist and the local endo viewed the scans and agreed that nothing "lit up" to indicate stimmed adrenal tissue. This was disappointing news but we decided to move forward with the ablation despite it. Incidentally noted on the CT was a pulmonary nodule that we will need to have further evaluated.
The procedure was scheduled for Monday so we flew in on Sunday. The people at Scripps seemed organized and efficient. The only thing that put us behind schedule a bit was a last minute pregnancy test (if you are female and over a certain age...). They gave Alex a nice cocktail of 100mg solu-cortef, Versed, and Fentanyl and whisked her away. The procedure was CT guided; they went in through her back, next to her spine. The nurse said Alex took a nice little nap and Alex remembers nothing. The procedure took about 30 minutes and two hours later they were ready to release her. She was in some pain when the meds wore off and they allowed her to take a dose of Ultracet.
The recovery hasn't been bad. She has only taken the Ultracet once since that first day and has taken 600mg of Motrin twice. On Tuesday she took a total of 30mg of hydrocortisone and by Wednesday and Thursday she was down to 20. She managed the next 2 days on 15 mg but yesterday was feeling she needed (and took) an additional 2.5mg.
I'm feeling cautiously optimistic that it worked but I want to give it a few days before I say more.