Post by terry on Apr 22, 2016 19:29:30 GMT -6
Several years ago, I had an MRI that revealed the presence of a NS tumor [probably a schwannoma] at L2. This MRI was ordered because I was going to try an epidural injection to reduce the pain down my leg. Doctors at the HMO I belong to clearly indicated that the pain down my leg was NOT due to this tumor and thought that it was probably due to a degenerative lumbar vertebrae below L3. However, given the location of my pain [down the front of my right thigh], in retrospect, it is hard to believe that my doctors so easily discounted the NS tumor as the cause of this pain. Sometimes I wonder if the reason that they did that was to avoid calling it a symptomatic tumor and therefore being required to treat the tumor [as opposed to their famous “wait and see” approach]. This could be another different post about HMO but I won't go there right now.
Eventually, I began to distrust their assessment that the pain down my right thigh was “very unlikely” to be caused by the NS tumor. Part of this was due to the information I obtained on this forum and a couple of posts I was lucky enough to receive. I then got a couple of valuable 2nd opinions from outside spine specialist that the tumor indeed should indeed be treated. Then the question was: what treatment? The standard treatment is surgery to remove/ de-bulk the tumor. The doctors at my HMO, however, referred me for CyberKnife “Surgery”. I did not disagree with this referral in large part because this tumor was located under a portion of my spine that had already been fused and I felt I just couldn’t risk an actual surgery. I will do anything not to make a situation worse. The CyberKnife procedure is very likely to cost my HMO much less than an actual surgery and may have been one of the reasons for this referral. In any case, I didn’t see a lot of risk in this procedure and it seems to me it was likely to have a reasonable chance of preventing the tumor from growing.
I met with the Radiation Oncologist. He was pretty straight forward: he thought this needed to be done; he thought that it was likely to stop the tumor from growing in the future and the thought that this was a better alternative than real surgery. The one real down side of what he had to tell me was that he also thought there was a low probability of the CyberKnife procedure of actually reducing my pain. If you look at the literature on CyberKnife that you can obtain on the Internet, it was my assessment that I would have a reasonable chance to help shrink the tumor and thus reduce my pain. It could very well be that he said what he did because this tumor had been pressing on the L2 nerve root for so long that he might have figured the damage was not reversible. I never specifically asked him that question. I am not real happy that my HMO let this situation go on for so long that the chance of my getting pain relief was probably greatly reduced.
So about 2.5 weeks ago, I had the CyberKnife procedure. As promised, the procedure was painless and all I had to do was to lie very still. Since I was reasonably comfortable, this was not all that hard. For about 4-5 days after the procedure, I was fine: I did not have increased pain, I had relatively little G.I. disturbance but I was tired. At about day 7, I started to have more pain down my right leg and by about day 10, it was preventing me from sleeping more than 2-3 hours. I contacted my HMO and asked for help. They recommended higher dosages of the steroid I had started to take. I also increased my Neurotin prescription and how much Motrin I had been taking. When I got up to 8 mg of Dexamethasone [along with the increased dosage of the other drugs], my pain level started to be manageable. With any luck, this increase of pain will be temporary and I can start to taper off on these drugs. I will try to update this post in the future.
I would welcome any input anyone has. Thanks.
Eventually, I began to distrust their assessment that the pain down my right thigh was “very unlikely” to be caused by the NS tumor. Part of this was due to the information I obtained on this forum and a couple of posts I was lucky enough to receive. I then got a couple of valuable 2nd opinions from outside spine specialist that the tumor indeed should indeed be treated. Then the question was: what treatment? The standard treatment is surgery to remove/ de-bulk the tumor. The doctors at my HMO, however, referred me for CyberKnife “Surgery”. I did not disagree with this referral in large part because this tumor was located under a portion of my spine that had already been fused and I felt I just couldn’t risk an actual surgery. I will do anything not to make a situation worse. The CyberKnife procedure is very likely to cost my HMO much less than an actual surgery and may have been one of the reasons for this referral. In any case, I didn’t see a lot of risk in this procedure and it seems to me it was likely to have a reasonable chance of preventing the tumor from growing.
I met with the Radiation Oncologist. He was pretty straight forward: he thought this needed to be done; he thought that it was likely to stop the tumor from growing in the future and the thought that this was a better alternative than real surgery. The one real down side of what he had to tell me was that he also thought there was a low probability of the CyberKnife procedure of actually reducing my pain. If you look at the literature on CyberKnife that you can obtain on the Internet, it was my assessment that I would have a reasonable chance to help shrink the tumor and thus reduce my pain. It could very well be that he said what he did because this tumor had been pressing on the L2 nerve root for so long that he might have figured the damage was not reversible. I never specifically asked him that question. I am not real happy that my HMO let this situation go on for so long that the chance of my getting pain relief was probably greatly reduced.
So about 2.5 weeks ago, I had the CyberKnife procedure. As promised, the procedure was painless and all I had to do was to lie very still. Since I was reasonably comfortable, this was not all that hard. For about 4-5 days after the procedure, I was fine: I did not have increased pain, I had relatively little G.I. disturbance but I was tired. At about day 7, I started to have more pain down my right leg and by about day 10, it was preventing me from sleeping more than 2-3 hours. I contacted my HMO and asked for help. They recommended higher dosages of the steroid I had started to take. I also increased my Neurotin prescription and how much Motrin I had been taking. When I got up to 8 mg of Dexamethasone [along with the increased dosage of the other drugs], my pain level started to be manageable. With any luck, this increase of pain will be temporary and I can start to taper off on these drugs. I will try to update this post in the future.
I would welcome any input anyone has. Thanks.