Hello @leftylucy! Just saw your question about Walt's DBS. Funny you should ask…..I had not updated or added to his DBS story – but I think this is a good time to do that.
Good news and bad news…. First of all – Walt did amazing with the DBS. The DBS gave him a lot of himself back, and he was feeling pretty good about it. He had a couple of adjustments as his tremors increased, but he was only taking 2 carbidopa levodopa one time a day (as opposed to 2-3 tabs 5-6 times a day), and he loved being off the meds! Although he never let the PD stop him from doing things (he cut wood, carried things, loaded trailers, worked on cars, played with his grandchildren), after DBS surgery, he was willing to do a lot more physically demanding things – Our son took him to Montana for a ski-mobiling trip, he took the grandkids sledding when it snowed here in the mountains, he was more social, he did more driving.
The bad news…..One day in February we were sitting around the table talking with dinner guests, and he bent over. I thought I saw a glint of metal on his head – when I looked more closely, I could see a teeny bit of metal peeking through the recently healed incision where one of the wires had been passed over his skull. I called the neurosurgeon's office, and they said that he should take antibiotics they prescribed, and they would make an appointment for Walt to come in. Since there were no signs of infection, it was not considered an emergency. A few days later, there was more exposed wire, and we called again. The surgeon said it was likely skin erosion – a rare, unexpected development, but not unheard of. We sent photos, and they called to make an appointment. We thought the appointment would be to see the surgeon – or for him to see Walt. When we spoke to the surgeon's nurse, she tried to schedule surgery to "remove the DBS System." That was a shock! She was very matter of fact about it – like it was already decided, and like we already knew that it would all have to be explanted. I refused to schedule surgery until we spoke to the surgeon, and he called a couple of days later. He apologized for his nurse, acknowledging that he should have spoken with us first, rather than the way the nurse told us,, but he said everything had to come out. Once the wire, which was attached to the lead in his brain was exposed, the entire system needed to be removed. After 3 months of healing, Walt could ask about having it re-implanted if he wished. By the time we actually made it in for an appointment a couple of weeks later, there were about 2 inches of wire curving out of Walt's head, and back in. The other side of his head was fine – no sign of erosion – so they did not think there was an allergic reaction involved.There was no pain or discomfort.
On March 21st (his birthday!), at Mayo, he was put under anesthesia, and both leads, wires, and the battery pack were taken out. His tremors and other symptoms returned within a few days, and – frankly – were worse than we remembered seeing them in the past. It was sad. Very sad. Walt is currently back on meds – taking 3 tabs 5-6 times each day, to control his symptoms. The good news is that just this week, Walt saw Dr. Shill, a neurologist at Barrow's Institute of Neurology, the chair of the Dept. After an extensive exam and review of all Walt's DBS-related records, she told us that she would recommend that they implant a DBS system again – that he is a good candidate, and that because they use a different system, and perhaps different techniques, she believes it will work out well for him. They do the surgery as an asleep surgery, for which Walt is very grateful! Their DBS Team will review the case, and put it before Dr. Ponce, the neurosurgeon, and it should be scheduled a few weeks from now.
This whole thing was a complete shock – totally unexpected. So anyone having DBS should know that something like this is a possibility. I am sure it was one of the "risks" of which we were informed, but nonetheless, it was totally unexpected. The reason – for anyone who wonders – for our appointment at Barrow's is not that we fault the Mayo surgeon, but because Mayo does not accept Medicare assignment, and we are billed at 15% over the Medicare accepted rates. The paperwork and record keeping is killing me. Too confusing, and too expensive. Also – the incident with the Mayo surgeon's nurse was not the first time we clashed with her, and I do not wish to deal with her again.
@leftylucy – Best of luck to you. I know you are in good hands, and that the surgery will be amazing for you! Let us know how it all goes!