March 29, 2013 – Forgiveness
For some reason I was thinking of all the screw-ups perpetrated by so many doctors and I started to get angry and resentful. It first started with Dr. H, who basically blew me off when I told him numerous times, that my whole body was killing me. Looking back, this was due to the spinal stenosis. He kept ignoring me and ordered a stupid regular x-ray, when he should’ve referred me out. Then when I went to Dr. G, he said he didn’t want to step on the toes of Dr. H, so again I was blown off. I finally referred myself to Augusta Back where the travesty continued. First I saw Dr. B, a D.O. who finally ordered an MRI. It showed spinal stenosis so he did epidural steroid injections, which worked a little but not enough. He then referred me to the surgeon and I then had a lumbar laminectomy, which was successful but didn’t address underlying symptoms too. In fact, I was worse as time went on, only to be told over and over that the spinal nerve just had to heal. Then after 2 months, they finally started to say that there was nothing that could be done and they had no idea why I wasn’t getting any better. At that point, I was hobbling with a cane, with no balance, causing me to fall at the drop of a hat. My foot was dropped and my leg was partially paralyzed so that I literally could not lift it up without using my hands. They dismissed me to a pain management doctor because I was also suffering with unbearable nerve pain in my abdomen, back, both legs and feet. My life turned to a living hell. Luckily the pain doctor told me he could not help me either. At first I was angry but now I am so lucky because I finally got sent back to the original doctor, Dr. B. He actually took time to stop and think about my symptoms and decided that it just might be coming from the thoracic spine. Sure enough, after a thoracic MRI, he discovered a small meningioma, pressing on T3 of my spinal cord. This was what was causing all the symptoms, including a weak right leg and all that nerve pain. I finally decided to go back to the surgeon, who, in my estimation owed me a huge apology for not looking any further for an explanation regarding why the hell I could not walk. She performed the surgery, which was much, much, more painful and complicated than the first, but Dr. B was right; the compressed spinal cord in the thoracic area was the culprit. To this day, I cannot fathom why the surgeon treated me like I was a nutcase and did not bother to investigate further. It would have been so simple to just think about it and order a thoracic MRI. I do not know why that was not even in the realm of possibility for her and why nobody else would actually listen to my symptoms. Here’s the thing, I could spend all my time being angry and resentful or I could be extremely grateful that at least I found the doctor who finally got it right. I wasted so much time being crippled and sad, so I don’t want to waste any more with being resentful. I prayed to God for me to find a doctor who could help me and my prayers were answered—that’s all I know now. I am grateful over and over, each time I do a simple thing like walk across a room, unassisted.
February 17, 2013
Well, lo and behold, the MRI ordered by the D.O. in the practice revealed a thoracic meningioma at T3. My question is why the hell the surgeon did not explore that possibility too. I read an article on the Internet “Paraplegia due to missed thoracic meningioma after laminotomy for lumbar spinal stenosis.” It says, “Surgeons should know that a silent meningioma can aggrevate neurological symptoms after lower lumbar spine surgery and should inform the patient.” OK, apparently my neurosurgeon did not know that. All this time, her PA and nurse kept saying that they have never seen anything like this before. Well, you are a nurse, not a surgeon so don’t say that to me. Her PA kept smiling at me and saying there was nothing more they could do. When I asked if there was additional testing they should be doing she said, NO. What the blank (not the real word) are they thinking? Secondly, all this time I was not getting better should have alerted them that maybe they should do an MRI of the thoracic region. This to me is negligence based on not ordering the proper tests, not knowing that a silent meningioma can aggrevate symptoms after a lumbar laminectomy, and just dismissing me. If the D.O. had not been a good doctor, who knows how much longer I would be suffering. After a month of me getting worse, she should have ordered an MRI of the thoracic area not one of the area she already operated on. I have an appointment with her tomorrow, but I do not want to use her as the surgeon again. But, I absolutely need to have this taken care of ASAP because I am suffering and cannot continue to live with this pain, stiffness, lack of balance, and not being able to walk properly. It is a nightmare that I hope will end soon and there will be a good ending finally.
12/22/12 – Saturday night – Today started out the usual way. Maybe, just maybe, my weak leg felt a wee bit stronger. It seems that lately when I drive, it is not so much of an effort to lift my leg up. At first I thought my response times were slow, but actually it is my leg that is simply hard to lift up to the petal. I feel a little bit less nervous when driving because of this. I got discouraged yesterday when my knee started giving out on me yet again, especially since I just had the cortisone shot. But, then I put a brace on and it felt a lot better. Even someone in the meeting at Midday told me I seemed to be walking better. Of course I still have the problem of losing my balance easily, which is very upsetting. After I’ve been sitting a while my balance is way off. Also, when I was sitting for an hour today, my legs were literally burning which was so uncomfortable. I spoke with Ruth after the meeting and she suggested that maybe that was a good sign that meant that the nerves were “coming back to life”. That gave me hope and it almost sounds plausible so I posted that question on line and we’ll see what others have to say. Apparently I’m not the only person who has had this type of trouble after getting a laminectomy. Who knows how long my spinal nerve was compressed before the pain became so bad that I finally sought help. So, if you figure the pain started almost a year ago, then the numbness started back in the summer, this has been going on for quite some time. There had to be damage that now needs to repair. Nerves take a long time to heal and I think that the longer the nerve root was compressed, the longer it will take to heal. Maybe the burning is a sign that the nerve root is starting to heal. Dear God I sure hope because I need hope; hope is everything! By the way, I watched Mr. Magoo’s Christmas Carol, which I had not seen since I was a teenager. Apparently they fixed it up and it is now back on. I loved that!
12/23/12 – Sunday – Ruth invited me to a prayer service at her Church. She said it was a healing service and sure enough at some point, anybody needing healing was asked to come up and have the reverend lay his hands on us. It brought back visions I’ve seen in movies of people being miraculously healed who were in wheel chairs. It was very moving and I almost started to cry. Yet, it was a very peaceful feeling and that lasted the rest of the night. After the service, we drove around to look at the Christmas lights and I actually felt “happy” or as happy as I am capable lately. I came home and The Sound of Music was on and of course, even though I’ve seen the movie a gazillion times, I had to watch it again. What a movie!
Pressure, Numbness – 12/19/12 – This morning I woke up feeling less stiff and off-balance, but with the same intense pressure on my belly. I am beginning to think that maybe I should just accept that this might be a permanent condition. Basically there is no answer as to when or if the numbness, burning and weakness will improve, so it is just a waiting game. I find that when I just ignore it—or about as much as I can—I feel better and can stop focusing on everything bad. Actually there are some improvements, most notably, I can bend over and turn sideways because the actual incision and the back itself are much better. But, internally—the nerve root—is the last thing to heal and it can take up to a year or more. My guess is that the EMG will basically show nothing. The PT made a very important point; if it were peripheral neuropathy, it would most probably be bilateral, but my weak leg is unilateral. I think the test will just prove that the whole problem is still the spinal nerve and it just has to heal on its own. I remember when I had a root canal about a year ago and for a long time I kept complaining that I still had pain, to the point where the dentist went back in to check. He said nothing appeared to be wrong with the tooth and sent me on my way. Boy, I was so aggravated that I thought for sure that he screwed up the procedure. So, since there was apparently nothing else that could be done and they could not find a reason why my tooth still hurt, I had to just live with it. Well, a few months ago when I was brushing my teeth, I suddenly realized that my tooth did not hurt anymore; the pain was gone. It had steadily been getting better, over time and so slowly that I didn’t even notice it. Then one day, it became apparent that it felt normal. I’m starting to think that this is what will happen with this; over time the symptoms will diminish to the point that it will be gone. The question is, can I wait until that happens. I am thinking of filing for disability because my doctor’s nurse seems to think that I will be able to return to work soon. I just don’t think that is reasonable with such a physical job as I have. I will literally fall out in the massage room because of this weak leg. This is not to mention that I can only stand for so long without the fatigue and burning setting in on my legs. She is being a bit of a hard ass about filling out the required forms. I’m still searching for a “reason” for this happening and I just don’t know for sure. As of now I am thinking of calling my primary care physician to put me on some antidepressants, just to get me over the hump. I went to a meeting today and I foolishly thought that I could walk without my cane so I held it up when I came into the room. That was not a good idea because I almost fell into my chair, totally losing my balance. Then for the first half of the meeting, I was on the pity-pot. By the end I felt a little better. It is true that for some reason, I am “walking” better today, but not well enough to do it without a cane for protection against losing my balance. But on a bad note, the burning sensation in both thighs is intense again and I dont not know why. The problem is that these brief periods of progress always seem to be followed with a regression the next day. Each day is a new beginning, as if the progress from the following day never even happened and is so discouraging. As of right now, at 4 pm, the burning in my thighs is very intense and uncomfortable. But if it comes down to being able to walk better and having burning nerve pain, I’ll take the walking better part.
12/13/12 – Thursday – I seem to feel OK this morning as far as side effects, but of course the pain and numbness it still present. I don’t know what I was expecting—-maybe a miraculous recovery, but I feel really sore this morning. I will take the other pills today and see what develops. Later in the morning my resolve breaks and I just feel like enough is enough regarding the intense pressure and numbness in the abdomen and back. I start out by saying that this is ridiculous, and it builds up to a full-blown meltdown, complete with ranting, raving, vows of suicide and calling the doctor’s office yet again. Of course they have to take a message because there is no way to actually get someone on the phone immediately. The nurse finally calls and says she spoke with the surgeon who said I need to get another MRI (hopefully the insurance company will pay for this) before my Monday follow-up visit to see if there is anything wrong. At least she is on the same page as I am because that is what I was going to suggest. No MRIs are done in their facility on Fridays so I have to get it done somewhere else. In the meantime, I have to get blood work done downtown at University Hospital, which makes me nervous to drive there. But, I finally make it after getting a little lost and I am proud of myself for keeping calm. The MRI is scheduled for tomorrow on N. Belair Road, which is easy to find, right in Evans. I’m not sure if I want it to show something drastically wrong (sponge left in, or bone out of place, or more narrowing) to explain why I have made basically no progress. If everything is as it should be then it is even more discouraging because there is no explanation as to why I still feel these horrible symptoms. On the other hand, if there is something drastically out of the norm, then it would at least give me hope that this can be corrected. There it is again, that word HOPE. If they keep telling me that I just have to be patient, then I will lose all hope. I need HOPE at this point to continue on. I simply cannot or will not continue to live my life as half a person. An old friend once told me that his wife had back surgery years ago and she just would not get better. They did an MRI and discovered to their horror that a sponge had been left in. She then collected a huge sum of money in a settlement. That has stuck with me and who knows? I am not looking to collect money (although that would not be so bad)—-I am just looking to feel better. Nobody knows how terrible it is to wake up every morning and have pressure and numbness in your belly, back, and legs with no end in sight. Nobody knows how devastating and frustrating it is when there are no answers in sight and your whole world is rapidly going down the toilet. I pray to God for help but God helps in his time, not mine. Please Lord please get on the same page as me. Thanks.
Discouragement – 11/28/12 – Wednesday – 2nd entry – For some inexplicable reason, after doing the PT, going to a meeting, and walking in Target, my legs, abdomen, and back are unbelievably numb and tingly. I had to go back to the house suddenly because I felt so terrible I couldn’t really stand up too much longer. It is so upsetting and discouraging. I actually felt halfway decent today, but as of right now, my body from my waist down is totally numb. I’m back to thinking in a negative way again. I told myself to be positive but I’ve had it for the day. I think I will get the chores done early and retire to my bed to read. At least if I enter a world of fantasy, I don’t have to think about myself. At this point I really am wondering if this will ever get better. One day I seem to be making progress, and the next day I feel no better than I did before the damn surgery. Sometimes I wonder why the hell I even had the surgery in the first place. I actually feel worse than I did a few months ago. I am having trouble finding a reason to go on with this whole thing. I hope I feel differently tomorrow!
11/30/12 – Friday – I resolved to be in a more positive state of mind because I know it does affect the healing process, or so I’ve been told. But, as usual I awake with stiff and numb knees, quads, abdomen, back, etc. The only good thing is that the cortisone shot in my knee seems to actually have helped so my knee does not get “stuck” in one position when I sit causing me to limp until it straightens out. I must be at least grateful for something and I truly am. But, my right leg is just so damn weak that I am constantly off balance and must limp. At first I thought my limp was due to the uneven hips but actually it is because my damn leg will simply not support my body. I am very self-conscious when I have to use the cane, but I limp less and don’t feel scared of falling as much. The fear is still there though. I rant and rave today and finally decide that there should have been at least some sort of improvement so I call the doctor’s office and speak to the nurse (of course) who seems somewhat concerned. That surprises me because I am sure she will say, “Oh, it is too soon so don’t worry.” But she decided to put me on a steroid pack to help relieve inflammation. It is day 3 and there is really no improvement so far. Actually I thought I was walking much, much better on Saturday but by Sunday that progress seemed to have disappeared. Maybe it was just wishful thinking or maybe there was an initial improvement, but I don’t understand why sometimes things seem better and then I wake up back to square one. When I get up and I have trouble walking, with the same numbness, I get discouraged.
New Reality – Sunday – I decide to clean my bathroom, even though I am still unsteady. My knee feels slightly better because I am not doing so much bending and flexing during exercise. Even the backwards squats, holding onto something, irritates my knee. I go to the gym and work out in the woman’s section so I won’t be so noticeable. I am acutely self-conscious about my limp and having to use the cane. But I guess it would be even more embarrassing if I fell, hence the cane. Maybe I need to get a distinctive walking stick for some flare! I do the treadmill, some biceps, triceps, shoulders, etc. using light 5 lb. weights. I also try the thigh and hip machine on an extremely low resistance. I am careful not to do anything that pulls on my back at all. All of a sudden I notice my damn knee is back to being painful, probably due to my small squats to strengthen my knee. Again, I am very discouraged. I am laying low today in the house, writing and taking it easy. Yes I could go out again, but I decide to just chill since it is Sunday. It is amazing how I actually wish I were working tomorrow because I am losing my mind with boredom. I love to write but as always, I lack structure in my life, which I so desperately need. My goal is to actually get better enough to start traveling, taking pictures with a new digital SLR, and getting paid with the pics. I am a good photographer and this is what I want to do. But, everything in my life is on hold until this incredible numbness in my legs gets resolved. My left leg is not so bad and not weak, but my right leg sometimes does not even support me at all. I am walking in fear all the time, and so slowly that it makes me feel extremely old. But I have to stop looking at my past and reliving my former self. I find myself saying, “Oh, I used to run marathons and be in great shape. I used to work out every day for an hour. I used to look good. I used to have gorgeous shapely calves, etc.” That does me no good whatsoever. I heard Stacey say that she would tell people that she used to make 100K and have a beautiful spacious home. The reality is that she lost all that and now lives in a nice apartment. My reality is that I no longer run, my right leg is atrophied a little due to weakness, I cannot work out the way I used to and my body does not look the way I want it to anymore. I have to accept this and move on to the next phase in my life. Hopefully, and God willing, my leg will improve as the numbness subsides, but as of now, my life is changed. I do not know when or if there will be improvement, although I’ve been told there will be. I have to latch onto that prognosis and try hard to notice even the most infinitesimal improvements. I never thought that I would take so much pleasure in such small things, but maybe that is why this is happening. My mood can turn around in an instant with just one small improvement in my walking, my knee, less numbness. But, conversely, it can go the other way when there seems to be no improvement or even a setback. I have to learn to roll with the punches and realize that ultimately it is my attitude that will save me.
November 6–Laminectomy for spinal stenosis and Election Day. I voted early. Ruth drove me to the hospital and we waited for one hour before they took me in. Surgery went uneventfully and I had hope in my heart, something I had not had in a while. I was bolstered by the fact that the nurse let me get out of bed to pee. I was also amazed that my knee worked and I could walk. This was a mystery to me but I hung on to it. I was thrilled and ecstatic. Even for a few days at home I was feeling good but gradually, the knee started to hurt again and before you know it, it was as stiff and painful as before. I was also happy that a few people actually came to visit me; Donna T., Pat and Wayne, and Kay (from Serenity). That was just what I needed; to feel like I was number 1 and that people cared enough to come. In the hospital, I had a nice private room with a big TV and spent the evening watching the presidential election. At 10 pm I began to get scared that Romney would win due to the earlier results and the RED on the map, so I just switched off the TV and went to dreamland. I awakened again at midnight and switched on the TV and lo and behold I see, “Obama elected”. I am relieved so I can go back to bed. All day and all night I am having to page the poor nurses to take me to the bathroom due to all the fluids I am receiving in the IVs.
Pain – Self referral – Sept 2012 – I am in so much pain that I reach out on Facebook and several people recommend a place called Augusta Back. When I went there they ask me who referred me and I put, “SELF Referral” because it was. If I had waited for my primary care doctor to send me for an MRI, I would still be waiting. My orthopedic knee doctor would not refer me for an MRI either for fear of “stepping on the toes” of the other doctor; how ridiculous is that! So, I had to be my own advocate and take matters into my own hands. The MRI reveals that I have bulging disks and most importantly, spinal stenosis, in the lumbar region.
I see Dr. Baker, an osteopath, first. He specializes in the administration of epidural steroid injections, which worked at first, but soon gave out. The first day I was ecstatic because the pain was gone, although the numbness in my toes was still there. I actually cried with relief, thinking that finally my nightmare was over. Unfortunately the numbness was not addressed. He tried another round of injections two weeks later and the numbness seemed worse. At that point he referred me to Dr. Shaver, a neurosurgeon who was recommended by 2 people I know. She informed me of my options and they all pointed to surgery. I agreed and my laminectomy was scheduled for November 6, 2012.