Yesterday, we went to see the newest neurologist. I say "newest" because this is the third neurologist Bob has seen. The second neurologist, Dr. K., was absolutely wonderful. In fact, he was one of the best doctors I've ever met. Unfortunately, he is leaving to work for a children's hospital and so we have been referred on to Neuro Doc #3. This neurologist will be handling the Botox treatments for Bob's dystonia.
The appointment started with the nurse/assistant. She looked at Bob's neck and at his left leg (which he can no longer extend straight out) and the curled toes on his left foot. She told me these were all "muscle contractions" and the cause of it was from "being immobile". She said that "evidently" I was not getting Bob enough exercise. And that this type of symptom is often seen in nursing home patients.
Those of you who follow this blog know this is simply not true. I have done my darnest to keep Bob in physical therapy and when he doesn't have professional PT, have been exercising with him at home faithfully--until recently that is. Until this dystonia caused him to drop out of PT. I told that nurse all of this and she looked at me like she didn't believe a word I said...
Then the neurologist came in and looked at Bob and told us that Bob's toes were "too far gone" and that Bob's neck was also "probably too far gone", and that Botox would not help him. Then he said that I should have brought Bob in at the "onset" of these symptoms and I should not have waited an entire year before bringing him in. Because now, it was too late.
I told that neurologist that I did take Bob to see his "old neurologist" immediately after the onset of the symptoms and that neurologist told us the symptoms were due to "neuropathy" and that there "was nothing that could be done about it". And when I asked that neurologist about Botox, he told me that "Botox in the neck would be fatal" and that was the end of the subject.
This new neurologist tells me that the first neurologist was "100% WRONG".
This new neurologist tells me I should have told that first neurologist that he was wrong.
I should have told the neurologist he was wrong? Huh? What do I look like--a freaking doctor?
Though I didn't stop there because the neuropathy diagnosis didn't seem right to me. I asked every single other doctor/therapist that Bob has what they thought of his symptoms and was given diagnoses of everything from "brachial plexus injury" to "torticollis from a drug side effect" to an agreement of the neuropathy diagnosis, to "nerve impingement" to "scoliosis" to a posture complication from keeping Bob's head of the bed elevated to high, to a "possible side effect of his poor vision".... and I even took Bob to a podiatrist to look at his toes and was only given a bunion cushion--- and it wasn't until Bob was hospitalized in February that we met Dr. K. who came up with the "post-stroke dystonia" diagnoses and told us there were treatments out there including Botox--and that Botox would not be fatal if injected into the neck.
So, after much debate, the new neurologist has agreed to "try" the Botox in Bob's neck and also in his hamstring muscles, but will not do the toes--because they are "too far gone".
Botox is set for July 2nd.
And Bob is being referred to a foot surgeon to be evaluated for surgery...
We left that doctor's appointment and Bob was nearly in tears...
And once again, it's all my fault.