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.
February 3, 2013
I had a problem with my driving yesterday when I accidentally pressed the accelerator rather than the gas because my stupid foot does that. I always think that only super old folks do that, but this scared me so much I couldn’t believe it. Luckily I swerved and put the brakes on in time. I went outside today to drive over and over in a lot practicing stopping, going, braking, etc. I just have to be ever vigilant about where my foot is. I had a total meltdown today about my lack of balance and lack of money coming into this house. Tuesday I have the appointment with the new doctor, recommended by Michael, but I have no real expectations. I have some hope, but hope is different from expectations. If I could just get somewhat better to the point that I could function relatively normally, I would be so grateful. I keep thinking about how much more of this I can take and I just do not know. I pray every day that there is a good resolution to this. In the meantime I am trying to do some work, but my balance is sometimes so off that I can’t stand properly. I am filled with extreme fear that this is going to be my life and I just cannot continue on like this. I also contacted another doctor on line for an appointment. I read his bio and he seems like someone who may be able to help me. The thing is, when do you decide to throw in the towel? When do you decide that you will not try to get better anymore? I go to the pool and sometimes the burning in my legs is even worse. I never know what will bring me some relief or what will cause me to feel worse. Sometimes something works once and then the next day it doesn’t. I am living in a nightmare that I cannot wake up from. I have limited monetary resources at this point and I am freaking out, with no work, no disability, no nothing.
12/20/12 – Thursday – It’s Christmastime again, not that it means really anything to me. I had felt so much better yesterday, it was amazing, both physically and mentally. Mostly because I felt stronger, but that seemed to dissipate as it usually does. Today I woke up with that unbearable pressure in my abdomen and back and tried to ignore it. Yesterday I spoke with Stacey by phone to ask her opinion about whether or not I should speak to a disability lawyer. She basically said that unless the MRI can document something wrong, I will probably be turned down. She went on to say that it is really up to the doctor and the notes whether or not I will receive disability. I do know that this condition that I have could still eventually be relieved, but who knows. In the interim, I feel horrible almost all the time except for an occasional reprieve of the symptoms somewhat. Nevertheless, she kept reminding me that this type of disability was not temporary, and I kept assuring her I understood. I wish I had not even spoken to her because she upset me so much that today I was in a major state of depression. The “what ifs” kept coming to mind about “what if” I don’t get better then how will I support myself, etc. The whole conversation upset me to the point that I decided I will only call her if I have a question about the birds, etc. It has taken me all day to at least feel halfway decent and I am still profoundly upset, but mostly because my right leg does not feel as strong and I just feel physically numb, with the burning all down my legs again. I think I did a lot of cleaning today and that is probably what did me in. I will go out tonight to see some people at a meeting so I won’t isolate and continue on my pity pot path.
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.
12/14/12 – Friday – I wake up the same as usual, no change. I am still having the numbness, tingling and burning, which is so depressing. I am trying to maintain some sanity today so I put my back brace on and it feels a little better. It somehow alleviates the pressure on my belly when I wear that. In the meantime, I will have the MRI today.
12/15/12 – Saturday – I had the MRI with contrast yesterday and that was uneventful. I then went to Walmart and the numbness, burning, and tingling in my legs was almost unbearable. I learned from the Internet that this is actually a form of pain, but not in the traditional sense; it is NERVE pain. It is almost if not more unbearable than regular pain, as most people know it. I keep saying, “Well at least I’m not in pain. I just have the numbness.” But this is not the usual numbness that I originally had, it is a deep, searing, burning, numbness and is a type of pain. Yesterday I finally identified this as a “burning” sensation. It is horrible. In reading over my entries I see that I have had days where I was not feeling bad at all since the surgery. I don’t understand why I felt better in the beginning, right after the surgery, than I do now. Also, every so often I feel a lot better and my leg is stronger. I don’t understand why the numbness seems less and then the next day or even later on in the day, I am back to the same burning, tingling, numbness as usual. Maybe it is a good sign that it occasionally abates, but I am at a loss. Last night I was absolutely convinced that the doctor screwed up and injured my spinal nerve which is why I am not progressing much or even at all. But I am resolving today to just accept this day as it is because I have no control of anything at all at this point until Monday when the doctor can review my MRI. I spoke with Jane last night who said that the MRI with contrast will absolutely show everything that is going on. If there is a problem, it will show. I don’t want to have to go back into surgery but if there is something wrong and it is pressing on the nerve, I will do whatever it takes to get better. I’m going to try to be free from self-pity today. We’ll see how that goes. It is amazing how a small bit of improvement can cause such elation so maybe if I can look for something that has gotten better I will have a better day. I will keep praying.
Later in the day: I decided to not take the ibuprofen because it doesn’t seem to work on nerve pain. It works great on regular pain, but it definitely does not stop the numbness and tingling. All of a sudden, the symptoms seemed less. Maybe it has something to do with me going to Starbucks (I’m going broke) and just “relaxing” as much as I am capable, but I felt a lot better both physically and mentally. I then took a dose of the Gabapentin which is for nerve pain. I don’t know but maybe I feel a tad bit less terrible. I will take another one tonight before bed and who knows, maybe, just maybe, I will see some progress.
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.
Faith – 12/6/12 – Thursday – As usual, I wake up feeling stiff and sore, but try to put a positive spin on the day. It actually was a good day because I was busy up until 4 pm. I decided to miss the Christmas party tonight. That was not my original intention and I was going to bake something to take, but as the day progressed I became increasingly exhausted (specifically my legs) and started dragging my right leg. I just kept thinking that it would be embarrassing if I fell or dropped my plate or had to have someone carry it for me. Then if people hadn’t seen me lately, they would be shocked to see how deteriorated I seem, barely able to walk. So, I just said to myself that I have to let my body rest, no matter what. I’m sure nobody was terribly upset that I didn’t show up. I’ll hit a meeting tomorrow and this way, I will rest and not eat like a pig, as I always do with these eating meetings. I made a nice meal here and just relaxed. I sometimes think it is better not to see people who are improving after surgery because it makes me angry. I know that is not the reaction that I am supposed to have but I simply cannot help myself. I mean no ill will for anyone, I just feel angry and jealous, even though I know it is irrational. I also notice that people get sick of hearing how you are not doing very well because people’s natural proclivity is to assume that after surgery you will improve. So, when I tell them I am not doing as well as I thought, their eyes glaze over and they drift away. Nobody wants to hear bad news and I guess I don’t blame them at all. When I spoke with Gail last night she said for me to “hang in there” and go into prayer mode. She said she would say prayers for me too. I prayed and prayed and prayed and sometimes I guess it works. The trick is believing in prayer and God even when there is no evidence that the prayers are working, because it is often not instantaneous, as I would like. But, having faith is the key. Faith equals hope and when there is no faith there is no hope and no hope is death to me.
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.