Post by artsguy on Jul 15, 2015 20:40:55 GMT -6
Hi, folks, this is from my family member, who is not so technology oriented. I'll make sure she gets your replies. (Is it better to post to the FB page for SCTA in addition to this forum?)
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I've started to listen to the audio recordings on this site. I’d appreciate any of your thoughts, suggestions, and opinions. All of this has happened very suddenly this month.
a) I was recently diagnosed with an intradural-extramedullary spinal tumor: 2 cm x 1 cm x 1 cm. The MRI shows it at T12 – L1. In one image, the tumor occupies 75% of the space.
b) Some symptoms include some cramping, tightness and a pulling sensation from hip to legs and ankles, more so on the right side. I feel pain when sitting down and getting up.
Currently, massage, walking and heating pad help alleviate the symptoms.
My symptoms are more persistent and the severity of pain ranges from 3-5 on a scale of 10 for the past 6 months with no severe numbness. Pain is mostly felt from the pulling and tightness in the right leg.
I wonder if I should wait and see how the symptoms progress?
c) One of my doctors (not a neurosurgeon) seems to think my pain from leg to ankle is due to L4-L5 disc degeneration. The MRI shows mild degeneration. I am wondering how to tell whether my symptoms are due to T12-L1 spinal tumor or from L4-L5 disc degeneration.
Can anyone here with a T12-L1 tumor share symptoms experienced? I thought I could compare symptoms and determine if the tumor is actually causing my symptoms.
I am concerned that I will have the tumor removed only to still be experiencing the same symptoms once I recover.
d) I am afraid that I will be worse off after the surgery because of the surgical risks, including spinal instability and deformity, nerve damage, etc., and I worry that I will have less mobility than before surgery. Any thoughts on this?
e) Should I restrict myself from doing any particular activities at this time? The neurosurgeon did not mention anything, and I wish I had asked.
f) For recovering from surgery, is there anything I can do to recover better?
g) During recovery, how much help will I need? And for how long? Any thoughts on a realistic time frame for recovery? I am late 60’s, recently retired, and I believe this procedure will be very difficult to recover from. I am guessing it may take a year – does that seem realistic?
h) I have not yet found a neurosurgeon (have asked two) who is willing to (or perhaps can) do Minimally Invasive Surgery. It could be because of my specific case, or perhaps they are not skilled in this technique for tumor removal. Not sure. Should I continue to pursue the MIS option if surgeons differ in opinion? Are there any drawbacks or risks to MIS?
i) I feel overwhelmed. I don’t feel confident in making decisions regarding choosing a surgeon or whether to proceed with surgery. I wish someone could tell me what to do.
I was planning on moving to another state and traveling overseas later this year. It seems that maybe I should postpone those plans.
j) I will be meeting another neurosurgeon. When I ask how many of these surgeries they have done, what is a good number that indicates they have good experience? Is there a way to ask them about negative outcomes of their patients without offending them? Or, perhaps the another question is -- what is the best way to choose a surgeon?
Thank you.
LL
----------------------
I've started to listen to the audio recordings on this site. I’d appreciate any of your thoughts, suggestions, and opinions. All of this has happened very suddenly this month.
a) I was recently diagnosed with an intradural-extramedullary spinal tumor: 2 cm x 1 cm x 1 cm. The MRI shows it at T12 – L1. In one image, the tumor occupies 75% of the space.
b) Some symptoms include some cramping, tightness and a pulling sensation from hip to legs and ankles, more so on the right side. I feel pain when sitting down and getting up.
Currently, massage, walking and heating pad help alleviate the symptoms.
My symptoms are more persistent and the severity of pain ranges from 3-5 on a scale of 10 for the past 6 months with no severe numbness. Pain is mostly felt from the pulling and tightness in the right leg.
I wonder if I should wait and see how the symptoms progress?
c) One of my doctors (not a neurosurgeon) seems to think my pain from leg to ankle is due to L4-L5 disc degeneration. The MRI shows mild degeneration. I am wondering how to tell whether my symptoms are due to T12-L1 spinal tumor or from L4-L5 disc degeneration.
Can anyone here with a T12-L1 tumor share symptoms experienced? I thought I could compare symptoms and determine if the tumor is actually causing my symptoms.
I am concerned that I will have the tumor removed only to still be experiencing the same symptoms once I recover.
d) I am afraid that I will be worse off after the surgery because of the surgical risks, including spinal instability and deformity, nerve damage, etc., and I worry that I will have less mobility than before surgery. Any thoughts on this?
e) Should I restrict myself from doing any particular activities at this time? The neurosurgeon did not mention anything, and I wish I had asked.
f) For recovering from surgery, is there anything I can do to recover better?
g) During recovery, how much help will I need? And for how long? Any thoughts on a realistic time frame for recovery? I am late 60’s, recently retired, and I believe this procedure will be very difficult to recover from. I am guessing it may take a year – does that seem realistic?
h) I have not yet found a neurosurgeon (have asked two) who is willing to (or perhaps can) do Minimally Invasive Surgery. It could be because of my specific case, or perhaps they are not skilled in this technique for tumor removal. Not sure. Should I continue to pursue the MIS option if surgeons differ in opinion? Are there any drawbacks or risks to MIS?
i) I feel overwhelmed. I don’t feel confident in making decisions regarding choosing a surgeon or whether to proceed with surgery. I wish someone could tell me what to do.
I was planning on moving to another state and traveling overseas later this year. It seems that maybe I should postpone those plans.
j) I will be meeting another neurosurgeon. When I ask how many of these surgeries they have done, what is a good number that indicates they have good experience? Is there a way to ask them about negative outcomes of their patients without offending them? Or, perhaps the another question is -- what is the best way to choose a surgeon?
Thank you.
LL