donna
Junior Member
Positive thinking is healing!
Posts: 17
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Post by donna on May 6, 2010 10:53:08 GMT -6
Has anyone experienced loss of more sensation or feeling? I had an ependymoma partially removed in July 07 and then had 5 weeks of radiation. Tumor reoccurred and had second surgery November 2008 at the Barrow Institute in Phoenix AZ. Fabulous group of doctors, they were able to totally re-sect the tumor and so far have been tumor free Tumor was t-10 to t-12. I have to have a walker ever since the first surgery as my balance is off and my gait is not right. However about 8-9 months ago I had started to lose more and more feeling in my legs. I was worried that the tumor came back so I went to neurologist and had MRIs of my lumbar and thoraxic spine and all was clear. Had the nerves test on my legs where they stick all those needles in your legs to check your nerve response. Nerves were all fine however I did not feel any of the needles. My husband was sitting there watching and he asked me don't you feel those needles going in and I said "no I thought they hadn't started yet" I have had blood tests and they are at a loss as to what has increased the loss of feeling. So the only thing they think may be causing it is the after effects of the radiation. Has anyone had any effects like this from radiation? Sometimes I feel like my legs are just logs that I drag around. I take nuerotin and zanaflex daily. My feet sometimes are so stiff feeling that I feel like if I stretch them they will break off. Should would like to hear if anyone else has these feeling and if their doctors have had any answers? Thanks
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Post by Linda51 on May 27, 2010 18:10:31 GMT -6
Hi Donna,
I had 6 1/2 weeks of radiation in 1995. Never been told you could have loss of feeling by having radiation. I had loss of feeling somewhat before surgery and more after surgery. My feeling started getting somewhat better around my 7th year. I'm getting close to my 16th anniversary and still have numbness. I am use to it.
Have you ever had a nerve conductor test --EEG?
~Linda
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Post by sikorskig on Apr 24, 2012 15:38:45 GMT -6
Has anybody had Cyberknife radiation like myself? I have also seen ads in local paper for new Truebeam technology--looks like a one time "hot shot" of mega radiation? Anybody familiar with this? Gary
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Post by funnywalk on Jan 19, 2013 12:24:20 GMT -6
Donna, I've just finished 6 weeks of radiotherapy for Grade 2 diffuse astrocytoma, T9,10,11.. I have noticed the sensory loss in left leg - initially caused by extensive biopsies during my operation - has got worse and does not so far seem to be getting better [2 weeks since radiotherapy finished]. It drives me mad, especially as it is all different kinds of sensation, as well as numbness in some parts of leg and foot, I get tense muscles which wont relax, a feeling of hundreds of elastic bands around my leg gradually getting tighter and extreme sensitivity when the leg is touched or moved. It does not respond to painkillers. Hope you have more luck!
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Post by von on Feb 12, 2013 18:18:48 GMT -6
Donna, I'm in Phoenix area too.
I have a ependymoma T10-L2. Had surgery at Barrow as well. He said tumor removal would be too risky. The Barrows panel decided Radiation was the way to go. So I went in for max treatments.
Radiation can and does cause the symtoms you list by way of inflammation. I realized the cause as when I was on corticosteroids during the radiation treatments, the inflammation was ok. I was biking 2 miles a day on my recumbent toward then end. He cut the steroid 2 weeks following finishing radiation, the swelling went nuts and I had horrible symptoms of inflammation and weakness.
I'm 8 months post-radiation now and only now starting to manage the inflammation issues. The swelling caused the spinal cyst I had popped during surgery to come back, a direct result of inflammation. My symptoms are still presently noticeably much worse than pre-surgery/radiation. Body is healing, but incredibly slowly.
I can recommend a book called Meals that Heal Inflammation to help control symptoms. At current, I have to eat a full antiinflammation diet, take 1800 mg of ibuprofen a day, and 3 grams of fish oil. Still struggling but getting better at managing it. Best wishes.
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Post by funnywalk on Feb 18, 2013 11:23:33 GMT -6
Some doctors say steroids help...
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Post by von on Apr 11, 2013 15:06:28 GMT -6
It will. Steroids never corrected much of the swelling I was having. Was doing much better on those than the 1800 mg ibuprofen I'm currently on. Steroids are really rough on the body though. I'm going to talk to my surgeon about it next month. I'm still curled up on the couch in pain 1 year after radiation. I've got to explore options. Antiinflams are the only thing that help the radiation issues, in my experience.
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Post by sikorskig on Apr 14, 2013 12:00:27 GMT -6
April 2013
Hi Donna, just wondering if you are still using walker and/or cane. I am 18 months post-surgery and still usng both but going through another round of PT to get my balance and gait stronger so can use cane more. I can walk short distances without either, easier if on carpet.
Gary
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Post by von on Aug 12, 2013 9:31:21 GMT -6
Donna, still searching for answers on this myself. Keep pushing the surgeons and neurologists, but no one seems to have a straight answer. I'm very concerned as I was virtually pain free after surgery and then after radiation pain and swelling has been ridiculous. I'm not sure how much of it's the tumor, how much is damage from the radiation, or how much is from the cysts? I have two cysts now instead of one.
Anyway, as an update, I'm 1 year 3 months post radiation, still having major problems. However, nerves seem to be healing some but slowly. I've had chronic pain for at least 8 years and gotten by with not using any drugs, but my quality of life has been severely affected post-radiation Neurosurgeon would not recommend steroids. Neurologist recommended Tramadol, which has helped the pain but I've not been on it long enough to comment. I know pain has been bad enough I'm either going to have to take something for it or go to a wheelchair full time. So for now, I'm going to try and stay on my feet.
Will continue to search for answers on this one. Going to continue to ask and ask until I can get some answers. Best wishes.
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Post by von on Aug 12, 2013 11:46:35 GMT -6
ps Donna, my symptoms sound the same as yours. I have additional leg pain and fatigue. So tired most of the time. I'm curious do you have cysts as well?
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