We travelled 180 miles by train for my SCS trial at one of the most reputable hospitals in the Northeast. Since the laptop was too heavy to carry in addition to the rest of the luggage, I am using the hotel's ancient HP destop computer in a "business center". This hotel is a dump, but it is on a courtyard with a CVS pharmacy and a Whole Foods (aka Whole Paycheck) Market, and only two blocks (five-minute walk) from the hospital.
I was planning to write a blow-by-blow description of the whole procedure from my careful and copious notes, something I may still do, but I need help from my friends who have already been through this.
My doctors implanted one percutaneous lead on Tuesday afternoon, using plenty of Lidocaine but no sedation. It took awhile because I wanted coverage of my right leg from ankle to hip, and I would not get up off the table until they got the complete leg covered (as per Cheri's advice). After the St. Jude ANS rep gave me five programs, I staggered back to the hotel, still under the influence of the Lidocaine.
When the Lidocaine wore off, I felt like I had been kicked in the back by a mule. Wednesday, I took a couple of turns around the courtyard, still feeling like I had been kicked in the back by a mule. (Anyone remember Lionel Hardcastle's experience in Korea in 1952? But I digress.)
Thursday morning, with the back pain having subsided somewhat) we set out to do some serious walking. I walked to the nearest Ace Hardware and bought a grabber (also recommended by Cherish22). In the afternoon, we started out walking again. However, I noticed the right leg pain was getting worse. The SCS stimulation was covering more than the area from which I felt pain, but the stim did not seem to be masking the pain.
On the way back from the hospital Thursday afternoon, I noticed two types of pain (while stimulation was on). I had a mild stab pain in the center of my right knee. I also felt diffuse aching in my right thigh and gluts.
This morning (Friday), trying to walk again, the diffuse aching in my right thigh, gluts and outer hip worsened. So I went back to the hotel.
This afternoon, we met again with the ANS rep. She is a very nice former nurse, and we do like her as a person. My doctor says she is fully competent for her job. I asked about the frequency and pulse width of the programs she had given me, and especially about the one that gave the best coverage. Of course, I was not surprised when she told my it is her company policy not to tell the patient what the electrode, frequency and pulse width are for the programs, that the patient should just let the ANS rep give the patient some programs to evaluate. She programmed eight additional programs. I did get out of her that Prog. 7 was the same as Prog. 2 except with shorter pulse width.
As someone with 43 years experience as a practicing engineer, this is somewhat frustrating.
My ANS rep suggested that my aching muscles might have been the result of overuse, compared to the disuse during the three years since my back surgery left me with chronic pain in my right leg. Perhaps I could solve my nerve pain issue with a permanent SCS implant, and then get physical therapy to restore my muscles.
Here are my questions for those with SCS experience:
Does the SCS block some kinds of pain but not others?
If my aching thigh and gluts are due to overuse of previously idle muscles, why is it that the ache comes only from the stimulated leg and not from the other (left) leg? I don't favor one leg over another when I walk, I have not used my left leg any more than my right leg.
How long does it take during the trial to determine whether stimulation is effective in reducing radicular pain?