What was the reason for not doing more frequent scans (it could be, if CT, the risks of radiation outweigh the benefit of the scan, but they could do a MRI so not sure the rationale). It sounds like you have copies of the reports, which I always advocate.
I found this on a website:
"A small percentage of low-grade astrocytomas present in the spinal cord of both children and adults. The history is characterized by a slow onset of back pain and neurologic deficits. The pain usually is localized over the region of the tumor, which is most common in the cervicothoracic area. Neurologic symptoms include paresthesias in the arms or legs. Weakness, objective numbness, and bowel or bladder symptoms also may be present."
"Low-grade astrocytomas that affect the spinal cord may result in various degrees of weakness and/or sensory change in the arms, legs, or sacral area. Myelopathy with increased deep tendon reflexes and/or positive Babinski sign may be present."
"Surgery is also the primary mode of treatment for low-grade astrocytomas of the spinal cord. Depending on the appearance of the tumor at surgery, a gross total resection, subtotal resection, or only biopsy may be possible. However, resection may lead to symptomatic and objective improvement in these patients. Furthermore, in low-grade astrocytomas, long-term remission (>10 y) and even cure are frequent in both children and adults."
The doc you currently have really has to give more information on this - but it seems that you need to consult another opinion IMHO.
I agree completely. I don't know what their reasoning is for not doing more frequent scans, but my husband is an NP and I got him to change his primary dr. to one of the ones in his practice so that he can get what he needs done rather than relying on the whims of the other dr.s who don't seem to be doing anything. I convinced him to have another scan and a brain scan done in August rather than waiting another full year. It seems that the location is inoperable because it has such a high rate of morbidity for resection in this case. Hopefully the scan in August will give us more answers though. I'd also like him to get a different neurologist for a second opinion.
At least, he needs to prepare and you need to prepare for what is happening. Perhaps there is some grief here and maybe some denial is helping him cope. Have you thought about counseling?
I've talked to him about it and he doesn't seem very interested. Our son has been seeing the school counselor to help him deal with the situation, but I'd like to get some more structured therapy. I really do think it would help my husband to have someone to talk to about what is going on. We are trying to prepare for the worst though and getting everything in order. It would help if there was just more information on this type of tumor though.
How are you doing with your tumors?
I have a support system - I know a lot of people with mine. We even meet in person regularly. But the point here is your hubby.
Even if he will not do counseling, you can go - it may help him in the long run so you can cope when things go down as he will have less tools to rely on. Yes, sadly, the loss of a loved one is also a legal matter and so many things need to be arranged or thought of in advance. If you had a different doctor, I think you may get more information - it sounds like the information is out there, but perhaps your doctor is in denial too?
I definitely need to look into some counseling this summer. A support group sounds like a great thing. He told me last night that his practice is arranging another MRI including a brain scan in June. That makes me feel a little better. I am going to push for him to do it through someone else this time so that hopefully we can find some better answers. His dizziness is getting worse though and the pain pills aren't touching his pain at this point. I'm glad he is now going through his practice rather than another doctor. The doctors at his practice see him every day, so they know what he is going through and are more likely to listen.
Lovely...now in addition to the dizziness and fairly regular headaches he has been suffering, he is also getting brief, sharp shooting headaches in one spot in his head. I am so glad he is getting a brain scan done in the next couple weeks in addition to another MRI, because I suspect this has spread from his spine. As rare as that is, with his lowered immune system, I think it is a very real possibility.
I am sorry to hear about his new symptoms. I do hope that it has not spread. Please take care. I just spent a week in the hospital with my uncle - he had a mass on his spinal cord. Benign, but he has a long recovery in front of him.
I'm so sorry to hear that. Hopefully he'll be better soon. I'll feel better once they do the new scans.