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.
I have stopped taking all the medications that the doctors prescribed because they make my legs even more wobbly than normal. There are some days when I suddenly find myself miraculously “walking” almost normally. It is shocking and I am filled with so much hope that maybe I am starting to turn the corner. But then, the next day, I am often back to the same old thing. Some days my balance is actually pretty good and then, suddenly the next day, I have Jello for legs. It is like a roller coaster and each day is a new experience. I just wish that when I make a small improvement, it would last so I would feel that I was getting better, even if it takes a year or more. If I could just see some definite progress, and if I have progress, it would be so wonderful if I did not regress again. Maybe these little snippets of progress, like getting decent balance, or actually almost walking normally, or my leg working well when I drive, mean that there is some kind of improvement. Maybe this means that the nerve is healing. I know I am supposed to do my PT exercises and I do them religiously. However, every so often I don’t do anything and I seem to feel less pain, with better walking. I just cannot find a common denominator that tells me what works and what does not. I do know that I have to keep my muscles exercised so they won’t atrophy—-although my right leg has already done that. I must also guard against falling into the pit of depression, which is so easy to do. I can feel OK early in the day and by the evening, the unrelenting pain just gets me down and I can feel myself drifting into that abyss of hopelessness.
Well, the new year is starting out like 2012. Already I have gotten a huge bill in the mail for the new round of epidural steroid injections, which may or may not work. Considering that I have almost no money coming into this household, it is very frightening. I did one massage yesterday and one today. I have been taking a new medication for the stiffness in my legs and it seems to work somewhat but as usual there is a side effect of weak, wobbly legs. I did the massage today with that kind of balance (or lack of balance) but I miraculously got through it. I kept watching the clock and hoping it was over because I am working in fear. It is amazing how many things I took for granted when I was a “normal” person. I went over to Starbucks for a treat and I wanted to sit in a nice comfortable cushioned seat but it would’ve entailed me maneuvering past multiple people with my cane, my drink, my purse, and my book—that was not happening. Then I wanted to go into Krogers to buy some mozzarella cheese but thought about how long and arduous a process that would have been requiring me to find a handicapped spot, park, drive through a crowded parking lot, get a shopping cart (even though I would normally not need one for just one item, but it helps me walk), etc. I then made the decision to just pass on going in, even though I really wanted that cheese for dinner. Who would’ve thought that I would get jealous of people just walking or driving without even putting any thought into this simple act? Everything is harder when you are disabled, and that is what I am at this point. I have to think twice before embarking on any activity, even simple things. I will continue to pray for God to help me find a solution or if not, to accept this because I cannot live in bitterness or anger; then the surgeon has won and I will have lost more than my ability to walk.
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.
Overcoming challenges and living life on life's terms
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