My husband contracted polio at age 18 months in 1949. He wore leg braces for several years, then they would cast each leg for months at a time until about age 12. By the time he was in high school, he was on the track team and very proud of his success and has been active and healthy until about 8 years ago. Over the years he has been diagnosed with arthritis in his shoulders and knees, and also hyperthyroidism. Otherwise, no major health issues. He is 61.
In 2001 he injured his back and it has been downhill ever since. He has had several back surgeries and finally an osteotomy and 7 level fusion. The pain he has endured since then is unbelievable, but he has managed to get his pain medications down to a reasonable level mostly with occasional Norco and a fairly high dose of Neurontin which his pain management doctor insists on. Other meds he takes are for his hyperthyroid, and Reglan, Senna and Docusate Sodium for his slow stomach motility, Lunesta for sleep, and Cymbalta for pain and depression. He also has a spinal cord stimulator that helps tremendously with nerve pain in his legs.
6 weeks ago he injured his left knee and the pain and swelling would not resolve. He went to see an orthopedic who xrayed and immediately said he needed a total knee replacement. Less than 2 weeks later the surgery was performed and 3 days later he developed pneumonia while in the hospital. He finally seemed to be on the mend from that after 4 days and was due to be discharged and then developed a blood clot in his leg. He is still hospitalized on high doses of blood thinners and the pain in intense, but getting a little better every day.
The surgeon called me last night to touch base. He seemed a bit upset that my husband's case did not go smoothly and blamed it all on my husband's medications he was previously on and said that he had a "low tolerance for pain" and an unrealistic need for medications. He called him a "walking pharmacy" and said he was taking "toxic levels" of Neurontin (he is actually taking less than what was prescribed) and took it upon himself to cut his Neurontin down to 1/4 of what he was prescribed. This orthopedic does not appear to be very knowledgable about post polio and basically blamed the pneumonia and blood clot on my husband and his medication requirements. I believe what he is saying is that because my husband had low pain tolerance and too much medication, he didn't move as much as he should have and caused himself to get pneumonia and a blood clot.
There wasn't much history between my husband and this doc prior to surgery, but I think he still should have made himself aware of my husband's past history and medications prior to surgery and addressed it then if it was an issue.
As his wife, I feel guilty when the doctor tells me my husband's problems are all his fault and he is a wimp when it comes to pain. I don't know if his "low pain tolerance" is due to post polio, I only know that the amount of pain he has endured over the past 8 years and he has definitely been through alot.
Does anyone know anything about Neurontin and what would be considered toxic? Should we have done anything differently?
Many doctors do not understand polio or PPS and seem to disregard any part it might play in what a polio survivor has gone through or is going through. I have had two fantastic orthopedic doctors in my life, and one that I couldn't wait to get out of his office. Your husband may really have a high tolerance level to pain, but is having some bad pain. Unfortunately with PPS you end up having more pain, discomfort and weakness as you get older, and there is NOTHING you can do ibuprofen, pain medication (as little as possible) is inevitible. I developed a blood clot from a torn ligament, and it did something to my 'good leg' that caused me to have difficulty straightening it out, affected my walking, etc and it's been downhill. It is the effects of things that happen to us that causes PPS'rs to have issues that 'normal' people wouldn't in the same situation. Don't let them snowball you (or your husband) A good educational book on PPS is The Polio Paradox by Dr Richard Bruno -
I hope you and your husband keep your chins up, and know that you are both doing the best you can.