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Post by lisaleo on Jun 22, 2014 13:06:16 GMT -6
Hello: I am reaching out to see if anyone is still suffering from severe back pain after having a Intraspinal Myxopapillary Ependymoma tumor removed(benign). My surgery(lumbar laminectomy) was done July 2011. The mass was located at the L-3-4 level. My chronic pain is low to mid back /numbing/leg weakness/tingling down my left leg, feet / pain in buttocks and sphincter dysfunction(rectal).
I have tried physical /massage therapy, and chiropractic therapy, as well as daily walking(or walking on a treadmill). I am going to try acupuncture next week. This has taken a toll on me physically and mentally and my quality of life has declined. I am only 50 years(raising teenagers on my own and running a family business...life is stressful). I thought after three years, I would have been somewhat pain free..or at least to a lower level of pain(I am at a 8-10 daily). Any advise would be greatly appreciated.
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Post by leks on Jun 22, 2014 13:46:35 GMT -6
Heya
When last did you have a scan? Are these symptoms new? If you haven't had a scan in a while I'd deffo call your neurosurgeon.
One thing I'm noticing, that at around the 2 year mark a lot of people have some sort of new pain/problem as happened to me( incontinence/weakness), for any normal healthy person I'd say red flags, get to an er pronto... But you have suffered a huge trauma to your spinal cord, unfortunately these problems of bladder/bowel/pain/weakness/tension/spasticity are rather common, but that being said, you know your body best, this is obviously worrying you, so best to get advice from your NS. Your pain lever is very high, are you taking anything for it?
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Post by samuridude on Jun 22, 2014 15:59:01 GMT -6
Hello lisaleo,
I'm sorry about your pain. I would forgo the treadmill and in place use the elliptical. I know from my own experience that I can go full out for 30 minutes on the elliptical with no pain, or stiffness. But if I walk a few miles in 30 minutes, I tend to have much more pain and stiffness. My NS also told me to stay away from the treadmill and use a stationary bike or elliptical. I also do a lot of core strength train. When was your last follow up MRI? Everyone perceives pain differently, but 8-10 means your are in a tremendous amount of pain and should be bedridden. That's how it was explained to me anyway. I had that kind of pain prior to surgery and morphine IV was the only thing that brought it down. Stress can also cause your nerves to be inflamed.
-Good Health |
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Post by lisaleo on Jun 23, 2014 21:49:59 GMT -6
Thank you for the replies...I am seeing my neurosurgeon at the end of this month and my last MRI was about 2 1/2 years ago. He suggested getting one every 3 years since this type of tumor can return in the spine or the head/neck area. I am trying to avoid pain meds...that is only a bandaid and only masks the pain(I also have migraines...so I already take enough medication). I know so many people who have had back surgery and said they have never felt the same...The pain I have now is actually worse than when I had this small little tumor...I now getting the surgery, although I know If I didn't, it would have grown, then one day I would not have been able to walk. I have come to the conclusion that this is my "new" life...and just accept it....chronic pain until the end. It is very difficult when you remember how your life was before pre-tumor, pre-surgery..you just exist.
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Post by lisaleo on Jun 23, 2014 21:57:05 GMT -6
Oh and Samuridude...Thank you for the elliptical suggestion..I was trying to think of another piece of equipment that I could use that would be easier on my legs and back...I am going to try one out this weekend..I will let you know :-)
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Post by lw on Jun 24, 2014 4:57:25 GMT -6
Hi Lisa,
Welcome to the forum!
Sorry to hear that you are in such pain 3 years post op. Unfortunately they fail to tell us this when we embark on these horrific, invasive surgeries. More often that not it seems as though we are simply told that the operation has been a 'success' because they have resected part/all of the tumour and, therefore, we expect to make a full recovery and return to life as normal. In reality that rarely is the case and people can be left with pain and/or disability on a long-term basis. Three years is a long time to have an 8-10 level of pain and I know you aren't keen on the idea, but may be you could consider at least trying some pain relief. I do sympathize with you because I hate having to take any medication and am constantly worrying about side effects and the potential damage they can cause. Now I will try something once or twice and if I have any problems I just discontinue taking it. I found tramadol to be very helpful in relieving severe chest and back pain that would sometimes leave me bedridden. Others have found relief from the specific neuropathic painkillers - I've never taken these so I can't comment but they may be worth a try. I hope your neurosurgeon can give you some more suggestions when you see him/her at the end of the month as you deserve a life and it can't be easy when you have kids and a business to manage as well. Keep your chin up and keep in touch.
Leah
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Post by peaceandlove on Mar 25, 2015 9:34:06 GMT -6
Hello lisalo
I Just make investigation about calmare scrambler therapy and found it That it deserve a trial . Am not living in the u.s.a but if it help for , please advise us so we Can travel for usa for This treatment.
It is a treatment for neuropathic pain. I have a case similar to yours. I made my surgery 45 days back but my back pain didnt disappear .
Please advise if
Thanks
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Post by peaceandlove on Mar 25, 2015 9:34:40 GMT -6
By the way check it on youtube
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