A few months ago I had the pleasure of befriending Patrick Rummerfield, the world’s first fully functional spinal cord injury quadraplegic. What that means is that in 1974, when docotrs knew even less than they do now, Pat was in a car accident which broke his neck and left him what is termed a ‘complete’ spinal cord injury. This means they considered his spinal cord severed and told him he would never walk again (they did not expect him to live either). That did not sit well with him since he was 21 and planned to be a professional athlete.
Pat says that while the doctors planned to send him to a convalescent home, he went to rehab instead and that was where his big toe started moving while he was thinking about playing basketball. Over the next 14 years he taught himself how to walk again. I don’t think anyone knows quite how he did it.
Although I’ve discussed this with many of you, one of the things I’ve grappled with since the surgery is a deep seated fear of not getting my body back, of having it mangled beyond recognition into something I expressly forbid the doctors to do. Particularly since most doctors will tell you after 2 years out you don’t have much hopr of recovering anything. So back in May, during one of my 4 am, can’t-get-back-to-sleep sessions, I called the Kennedy Krieger center and the intake PT told me to call Pat and gave me his phone number. He picked up on the 1st ring.
I told him what happened to me and he waited patiently for me to finish the whole long story (it didn’t come out very easily), and then he told me this: those doctors are all wrong. Christopher Reeve didn’t get anything back at all until 3 years after his injury. No one can tell you that recovery will stop because it doesn’t happened that way. You may plateau, but you will improve. You have to train like an athlete and go in every day no matter what happens.
So that is what I’ve been doing since May. It’s still the same as my previous routine, but the difference is now I have a mantra about getting better and focusing on small acheievments until they build into big acheivements. I still walk with a cane, my balance is still difficult, my foot drags, and my lefft hand is still impaired, but there are consistent improvements every week, every month, that the rehab guys notice and I just focus on that.
Meanwhile, because I just need to know the truth, I have uncovered evidence that shows that the ‘famous’ surgeon who operated on me did not use best practice when advising me of the operation nor during the procedure itself.
I did an odd combination google search and found a spinal cord tumor association with all the information I was looking for prior to my surgery. What I found was a group of about 200 people who had gone through various procedures and reported back to the group. First off, surgery was a mixed bag, and there were just as many people worse off thanks to the surgery than who were “fine.” What’s worse, was that there was a guy who was diagnosed my same year with a tumor in the same location who went to see the 2 best surgeons in the country for this procedure (one at Northwestern and one at Johns Hopkins) and was told by both of them NOT to have the operation since his symptoms had subsided. Yes, ladies and gentleman, the 2 best spinal cord tumor surgeons in the country both say do NOT do this operation unless you have symptoms because the procedure is very dangerous and there are problems with it — just like the surgeon at Stanford said.
Moreover, the paper published by the surgeon at Johns Hopkins to explain to patients how the procedure works defines every possible type of spinal cord tumor and what to do in various situations and tumor formations. This paper also clearly states that tumors that are connected to the spinal cord are to be removed without entangling the spinal cord and if you have to leave parts of the tumor you leave them so you don’t injure the spinal cord.
It is a truly sad day when doctors think that they can do anything to a patient and make them deal with the mess, and it’s truly sadder that we are conditioned not to question them. I wish I could think of a good way to warn other people without sounding paranoid….
All the best,
Tonya
