Last month, I randomly fell… fell hard.

It was Sunday night, I just had a massage, I went to the fridge to get dinner and my ankle didn’t move like I needed it to, and I went down… sideways. I tried to grab on to something as I went down but everything happened too quick. I landed sideways — on my left side, tangled up in a broom somehow. It hurt. I didn’t move for a couple of minutes because I wasn’t sure what to do. I heard things popping and felt things crunch, which of course is good and bad since my sensation is so off.

As I’m lying there in pain, not quite sure whether I’m ready to move, I wallow in self-pity… I have flashbacks of my x-boyfriend screaming at me, telling me how athletes fall all the time and it’s no big deal, and I wish he could trade places with me to see how easy it is  to get up when his left leg isn’t working … and then I see the pool of blood around my elbow and I just get really, really scared. It’s all over my arm and I am terrified something horrible has happened and I am all by myself. I don’t feel anything at my elbow and it is gushing blood. It should hurt but it doesn’t, and that scares me even more. I get up very, very slowly and cautiously, I’m in pain, but I’m able to move so that’s good, I tell myself. I haul myself up to the chair and I call my cousin who has extended his summer plans by a month. When I hear his voice, I am so releived and so upset that I just start crying because I acn’t get any words out. All the words are stuck. So he comes over and assesses everything. Since his dad is a doctor, I use him as a proxy, hoping that I don’t have to go to an emergency room. He patches up my elbow, make sure I can move and then hangs out to make sure I’m ok.

The next morning I wake up with blood all over my sheet because the banadage didn’t hold. I move very, very slow. My back is not happy and I’m sure I’ve bruised my tailbone at a minimum. I drive to physical therapy because I don’t have a doctor anymore, and I don’t trust any of the anymore anyway. They of course tell me to get my butt over to emergency care  because I might have a broken tailbone and a broken elbow. Ugh.

I get all the x-rays done — they do not even bother to x-ray my tailbone because they tell me there is nothing that can be done even if it is broken so it’s not worth doing. They do x-ray my elbow, however, as my injury interferes with my ability to feel pain. It’s not broken, but it is full of puss and infected already. Eww. They give me a tetnus shot and send me home.

Here’s where it get worse…. the next morning I wake up with a fever because the tetnus shot has made me sick. I nam dehydrated and dizzy and have flu-like symptoms. I make it downstairs but then everytime I get up I get dizzy. I make it to the toilet and then I can’t leave the bathroom for 30 mins because I am too dizzy. I am disoriented for most of the day and I don’t eat. At 5p a neighbor comes over to check on me and she freaks out because I am so disoriented. She makes me drink like a gallon of water and then I feel a little better. My cousin comes back over to get me dinner and I eat.

I call the emergency room where I got the tetnus shot the next day to find out about my reaction but no one returns my call. So I acll my massuese, whoose wife is a nurse, and he has her check to make sure that I shouldn’t go back in…. she tells him my reaction is extremely rare and my immune system must be incredibly weak. I’m not entirely surprised by that comment.

Anyway, it’s taken me about a month to recover from that, and it was emotionally exhausting as much as it was physically exhausting.

It’s so hard not to be angry at the people who did this to me, to not focus on the fact that they convinced me that I’d be fine, when it was simply not possible.

And I ask myself, why would any experienced surgeon tell his patient that they would be fine if a 4″ tumor was removed from the middle of their spinal cord and then remove it anyway when it was obviously not possible? I never volunteered myself as a free experiment yet I have to clean up this mess because I made the mistake of trusting the wrong people … and I paid for it with my life.

Yesterday I passed a guy in the hallway who skiied the trees Sunny Bono style and has gone from being an athlete to hobbling in a walker with a boot on his leg. He hasn’t gotten much better because his muscles spasm up too much for him to move. And he said to me, you are doing so wonderful, congratulations! And I am once again deeply humbled and deeply greatful, that after being dumped in a wheelchair by a megalomanic neurosurgeon, that I am getting better at all.

Onwards & upwards.

Tonya

I have become more and more grateful the past month that my body continues to heal against the odds. I don’t know how and I don’t know why. I’ve slid off the vegan diet a bit, been lax on taking the supplements that I was so adamant about, yet week to week, month to month, I continue to improve and no one knows why. Iknow, I know I’ve written posts about people who don’t give up, people in wheelchairs that I see every day coming into to rehab. But I don’t see anyone that has made as much improvement as I have. Russ has some setbacks (urinary tract infections are common among spinal cord injury population) and is about where he was last year. Maybe a bit better, but not much. Molly ‘regressed’ because she took time out to be pregnant. Stephen, Danny and Romy are all the same more or less.

My occpupational therapist spoke to someone at NIH about my case, confirming her sense that this is highly unusual. She doesn’t recall working with someone that gets individual muscle return this far post injury.

So I have a lot to be grateful for….. despite what happened.

A couple of weeks ago I met a woman whose uterine cancer was over-radiated by her doctors. She kept asking them, over and over again, am I supposed to feel this way? I’m losing my balance; I’m falling. I feel really sick. And her doctors kept telling her it was perfectly normal, everything was ‘fine.’ Now she can’t really walk. They over radiated everything and damaged her spinal cord. And you know what? Happens all the time…. because there is so much money in radiation treatments, they now over- radiate people. It’s a common problem. (Big article in NYT recently).

Maybe because I’m in the kind of rehab that only the serious problems go to that I see all the mistakes, but there are a ton of mistakes and no one in the medical field takes responsibility. We can kind of expect that people don’t take responsibility for their mistakes, that is all to common, but from where I stand, these same people spend their time telling their patients that they don’t know what they’re talking about, that they need to stop complaing and just suck it up. My own experience is a text book.

I have a recording of my 2nd encounter with the surgeon, and every question I asked (very thourough questions thoughtfully prepared by my attorney friend) was “I don’t know.” He did brag that he had never paralyzed anyone, and the following meeting when I asked him about Dr. Adler saying that I was going to be severly impaired due to the surgery he told me, “That guy hasn’t been in the operating room in years.”

Still though, who wouldn’t take a warning by one of the world’s foremost medical scientists and a Stanford surgical fellow seriously?

Here’s where the medical tradition gets morally questionable: When I tell my physician this (who has insisted that its her job to help me btw), she only follows up with the local surgeon. And then when he tells her I’m going to be fine (which he legally cannot do), she starts calling me up telling me to get it over with.

Yes, all water under the bridge, but now it’s a larger question. They are telling the same thing to people getting radiation treatments who are in fact getting over-radiated. You are considered an idiot who doesn’t know what you are talking about purely because you are a patient. It doesn’t matter that I’m repeating what the Director of Neurosurgery of Stanford told me, it’s simply not true because I’m a patient too stupid to know anything about medical issues and who perhaps didn’t remeber it correctly.

Even other people do this to you. When I told my ex-bf that I had a spinal cord tumor, his first reaction was that I misunderstood the doctor; that I didn’t know what I was talking about. Note my hearing is considered impaired immediately by the person who is supposed to be my greatest support (we did live together for 3 years). But I ignore the insult because I am freaked out anyway and concentrate on the nice things, ex:”don’t worry, if anything happens we’ll get 10 colas and cart you around venice!” But the doctor is right factor is too high even among lay people; even people who have been to hospitals a lot (I personally had never stepped foot in one until my surgery – never needed too). My ex, who had a lot of experience with doctors and hospitals thought I didn’t get the conversation with the Standford guy right either, because after my physician called me up to tell me to “get it over with” he was right there on her side, not mine, telling me “who cares if you walk with a cane” and “surgery will be good for you” as if its some sort of double dare not the next 40 years of my life until I die….. all because as the patient you are too ignorant to be able to make a good decision for yourself.

So 2.5 years later, I have to live with my decision, me and me alone, because everyone — the surgeon, my physician, my exbf, who insisted I was going to be fine left me to deal with the problem alone after they were wrong.

And I don’t think I’m the exception. I don’t think they did anything extra sloppy with me that they wouldn’t have done to the next person. If anything, I’m truly lucky I did enough research to find out just how wrong and sloppy they were!

Again, I don’t think I’m the exception. I think I’m the rule. And I really wish my head weren’t full of stories where doctors constantly make stupid mistakes and blame their patients because they don’t like being wrong or drawing attention to their faults… but people lose their quality of life, the things that make life exciting and fun, on a daily basis because of medical arrogance, ignorance or both.

And that’s a truly horrible problem…. and we cover it up because we don’t want to see it.

Have a safe labor day everyone.

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

Russ calls himself the “Norm” (Norm from Cheers) of Precision Rehab, my spinal cord injury clinic. He knows everyone, knows how they got stuck in their various situations, and spends his time between workouts offering encouragement to ther other patients. Russ himself is a huge success story, he is a quadrapalegic — with a bag attached to his leg and all — and a couple months ago started hauling himself around the gym in a walker. What I mean by that is that he still spends the majority of his time in his wheelchair, but 2.75 years post injury, he is just getting enough strength to pull himself 100-200 ft around the gym in a walker, with 2 plactic boots on his legs to stabilize them. Pretty amazing, considering most people get a window of recovery that is just about 2 years post injury, with the majority of that window occuring in the first 6 months. He says his secret is that he just keeps at it, while most people would give up, but I see a lot of folks at this gym and not everyone gets his kind of results. Maybe it’s his focus. I am really not 100% sure, but my guess it that its diligence, focus and a good attitude — or at least seemingly good! I am most impressed with the way he relates to the younger guys, Russ always goes out of his way to connect with them and offer advice and encouragement. However, he is definitely a guy’s guy so unfortunately he is not very good at encouraging the ladies! He gave me a nice compliment the other day, which is that his goal is to get to where I’m at.

On that note, I’ve been receiving some nice compliments all around recently. This past week, my PT said that one of her other patients singled me out to say, “I want to walk on the treadmill hands free like Tonya does.” Honestly, I was very humbled that among all these horribly afflicted people someone called me out to say they wanted to be like me at all. Although I am diligent, focused and determined, I am certainly not positive or gracious about how I came to have my injury. So that is the part that is humbling, because not one of these people deserves to be in the situation that they are in regardless of whether it was an accident or not, and I think many more of them are quite positive and gracious about their tragedies in comparison to myself.

The other thing that is very nice — very cute, in fact, is that my PT, all of 26 years old, is very proud of me and started bragging to her colleagues the other day that my left calf muscule has gotten so big lately she had to double check to make sure she hadn’t grabbed my right calf!

That is all for now. Thanks to everyone for their continued support while I battle through the trenches.

For Easter I would like to share a story about a person who inspires me. I am glad he is my friend. I hope this story also inspires all of you:

Steven is not yet 30 years old and he is in a power wheelchair with head support. He has been injuried for 3 years and can’t do anything for himself. His fingers don’t move, they are swollen and pudgy. His legs twitch uncontrollably; he can’t turn his head to look at you when you talk to him.

At 27 he was a professional, sponsored athlete, lived life on his own terms, had a beautiful wife, 2 young children and super popular on the circuit with loads of friends. He was injured while doing a sophisticated BMX bike trick on camera in front of a live audience — everyone watched him land on his head and break his neck.

He was in the hospital for weeks, on a ventilator, born into a new body that was completely helpless when hours prior he was in top form, and among an elite group of BMX athletes. He didn’t recognize his own body anymore — he thought his body was encased in hard plastic. No one knew if he was going to make it because his diaphram muscles weren’t strong enough to breathe on their onw for a long time.

 His friends and family rallied around him, but his wife started drinking and popping pills. People began to notice her behavior and told him that she wasn’t stable, but he refused to believe them. He eventually left the hospital and moved back home to live with her and the children. She couldn’t take it, popped more pills and began to endanger his life and the lives of their children. She gave him the wrong doses of medication nearly killing him, he got left outside for 6 hours because she was passed out upstairs, and she taunted him for being paralyzed on top of it all (I canot share the specific examples because they are beyond cruel into torture). He was so drugged up that  he didn’t notice — his friend did and stepped in. Someone who barely knew him offered to be his caregiver and flew down to live with him.

You would never know the horror of what happened to him becuase he is such a positive person.

He drives around in a giant sponsored Rockstar van with a posse of people with him wherever he goes. His new girlfriend looks like the flag girl at the track and watches out for him – she is super affectionate with him and doesn’t give a crap that he’s paralyzed. John, his caregiver and also a former athlete, organizes the whole day from changing out his catheters to stretching him out, to hooking him to the stim machines. Steven always has  to time to chat and socialize with the rest of us in rehab. He is always curious about other people and offers encouragement to the rest of us simply by sharing his experience and his positive attitude. He and I often talk about what it was like in the hospital becuase there is simply nothing else like it – the sheer terror and disconnectedness is overwhelming. And no one can comprehend it unless you’ve been through it.

Steven, because he is such a connected guy, fundraises for stem cell research and has gotten donations from the likes of Oakley and other companies on the tour.  Han Kierstead, the UCI researcher, is working on a cure for people like Steven, but he told me last week that even when he can finally grow a new nerve into a paralyzed muscle from the spinal cord, it will never be completely functioning as before.

So on Easter, I ask everyone to pray that one day there will be enough of a cure so that one day Steven can get out of the chair, walk to the bathroom and brush his teeth by himself — like you and I do every morning.

Thanks all

Tonya

I “celebrated” by going to see dr. adler at stanford for a follow up since i refuse to go see johnson again (and wait 4 hrs in his waiting room). Joce came with me, it was really good to have someone else in the room with me — really wish i would have done that the first time instead of going by myself with no one to back me up.

Anyway, dr adler was very kind. He basically said that he did expect me to have surgery at some point, it’s just that he knew it would be so disruptive, and i didn’t have symptoms, that he felt like i should put off going through such an ordeal. Moreover, he would have recommended (or supervised) a surgery that would remove the tumor that was removable, leaving the ‘inoperable’ sections alone and treating those sections with his cyberknife. Since our meeting in Q4 2007 he’s treated multiple ependymoma cases with the cyberknife, all with good outcomes. He admitted to being pissed off at Johnson telling me that Adler hadn’t been in the operating room in years and that i didn’t want a radiation treatment – that made me feel a little better too. Nice to hear someone was pissed off on my behalf instead of like, ‘oh well – too bad’ He called Johnson’s brag to my doctor about me being ‘fine’ after surgery a ‘miscommunication’ so I guess that was just a nice way to put it… still, it’s just gross that my doctor kept insisting that adler was wrong about the surgical outcome and that i would be fine.

On the flip side, he said that johnson was an excellent technician and that someone lesser would have snapped my spinal cord and then I would be really screwed.

He wants me to go back and see johnson in person to show him the results. That i need to help inform his judgement so that other people dont suffer, but i dont think i can handle seeing him again. I cant get over it – okay so he was wrong about his abilities in relationship to my tumor but he cut the whole thing out and left me in a wheelchair — after telling my doctor i’d be fine — what kind off jerk does that? ultimately it is MY decision not his. and if i choose a different path the results and the responsibility are mine and mine alone. He destroyed my body and my life — and both are in complete ruin.

Adler was honest with me from the beginning. Having surgery = paralysis. the choice from there was up to me. I wish the others would have had a reality check. Or minimally had a doctor willing to double check the advice offered!

Anyway, on the rehab note I continue to make small improvements. I got rid of my bioness – don’t really need it for dorsiflexion (lift ankle) as much – but statrted walking with a cane to get more of the correct feeling back instead of being electricuted. And, I finally have a good hand therapist! We got my right thumb working up and slowly sleuthing out the problems on the left. Hopefully in another month, we’ll have sorted throuhg the issues and i’ll be on my way to closing my left hand into a fist.

that’s all to report.

cheers!

A lot of strengthening in needed in my stomach and pelvic region . I am just now starting to lift my leg forward and up in a normal pattern – and it’s taking a huge amount of work just to do that. The pilates and gyrotonics are helping significantly from that end, I think. This past week, I went back to gait training on the treadmill to re-work the pattern, focusing on the forward movement of my leg and working hard to try to lift my ankle properly – without my bioness electrical stimulation device. It was hard work and I became easily tired; I did see improvement in stamina by the end of the week, which was nice.

My 2 year anniversary since the surgery is coming up in a few weeks. I would be lying to say that I’m totally unconcerned, as the estimated window for spinal cord injury used to be that all recovery took place in 2 years. Christopher Reeve changed that perception, fortunately, recovreing 3 and 5 years out, and new research supports continued recovery long term, but I am still worried. I don’t want to slow down, as the recovery is slow and tedious enough, and adding further delays would be disheartening to say the least.

So cheers to 2010. At least it’s not 2008 or 2009 anymore!

Tonya

The CyberKnife® Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and non-cancerous tumors anywhere in the body, including the head, spine, lung, prostate, liver and pancreas. The treatment – which delivers beams of high dose radiation to tumors with extreme accuracy – offers new hope to patients worldwide.

Though its name may conjure images of scalpels and surgery, the CyberKnife treatment involves no cutting. In fact, the CyberKnife System is the world’s first and only robotic radiosurgery system designed to treat tumors throughout the body non-invasively. It provides a pain-free, non-surgical option for patients who have inoperable or surgically complex tumors, or who may be looking for an alternative to surgery.

“When I learned I had a tumor on my spinal cord, doctors told me that without surgery I would be paraplegic and that the extremely delicate and risky surgery would involve removing ribs and intestines. I opted for treatment with the CyberKnife System and with just three, pain-free outpatient visits, I had my life back.”

Carolspine tumor patient

I continue to practice walking without my cane, although my balance and gait are far from normal. In PT I am working furrther down the chain now, adding my calf and ankle to the mix of butt, hip flexors, and knee control exercises. I’d be lying if the concept of my 2 year anniversary coming up in March didn’t scare me becuase it will mark 2 years of pure hell with no normalcy in sight, but I continue on knowing that some day I will have enough control of my body back to have a regular day of exercise, shopping and interatction. I don’t know when that day will be so that is the hardest part.

My left hand is looking better. Functionally it is about the same, can’t close it, but the mucscles in my hand are getting a little more definition and my forearm muscles are slightly bigger. Hopefully it will close soon but nothing about this injury is soon, unfortunately.

I continue to harbor a lot of anger at the doctors and others for saying that I should be “fine” post surgery and the general sloppiness with which my life and physical well being were handled. And I am not sure when I will be able to let go of that, as I continue to find more and more evidence that there were a number of alternative treatments that could have helped me reduce the size of a tumor without symptoms. The price I paid for trusting others when I was just a cog in the wheel was just too great.

Tonya