mom22
Junior Member
Posts: 11
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Post by mom22 on May 1, 2013 16:12:33 GMT -6
HI Von, I am glad to hear that your MRI and tumour are stable. You are the first person that I have seen post re: inflamation affecting symptoms. I have found this to affect me to a great extent as well. Around my cycle like clockwork my tightness and numbness increases and then improves. Also with stress etc. Have you seen others report this as well?
I have some tumour left also (they drained my cyst and put a shunt in).
How long was it before your cyst filled up? I thought it might mainly happen if/when the tumour grows.
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Post by von on May 15, 2013 15:31:43 GMT -6
I have an appointment Monday and I'll try to get back with you on the cyst issue. I'm not sure exactly what happened and will need to talk to the surgeon a bit more to be able to talk about it.
I have close to a 3 inch tumor, nonoperable. With the radiation it has been really brutal. I've not met many other's with inoperable tumors, but I figure because it's so large and because I had max dose of radiation, the healing time is ridiculously slow. I think my surgeon mentioned 2 years at our last visit, again, I'm going to try to talk more indepth to figure out the current state of things.
I've met two other people who said they had severe symtoms following radiation, both had large mostly inoperable tumors in a similar spot to my own T10-L2.
For first 6-8 months post rad, I felt mostly nothing below the waist. I'm getting past that, starting to feel again (some bits, some still numb), but it's unpleasant pain and hypersensitive nerve feelings.
How does the shunt work, if you don't mind me asking?
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Post by von on Jun 12, 2013 16:58:55 GMT -6
-Neurosurgeon says tumor is stable @ 1 year MRI checkup.
-Radiation has caused another cyst. Some bone marrow changes. A lot of pressure on my spine still. Iron supplementation is helping a bit; I'm showing in the anemic range. The symptoms post-radiation are horrid. I'm dealing a bit better with it each day, still not up to the level I was pre-surgery. Certainly no where close to where I was directly following surgery. I think pressure from the cyst may have been released after surgery, causing symptoms to abate. I know radiation has caused that pressure to come back twofold.
-I suggest to anyone with a similar experience, go to your general doc every 6 months and get a full blood workout, for your kidneys, heart, organs, vitamin levels, etc. Radiation will knock a lot of that for a loop.
-On 1800 Ibuprofen. Organs stable. On a full fruit and vegetable diet, non-gmo soy, some seafood once or twice a week.
-Starting to get some minor feeling back, pain receptors in legs are working full time. Hanging in there.
-Still lethargic. Stiff as well. Having some better days, where I can actually get up and exercise.
Been referred to pain specialist and going to find a good neurologist here. Will confer, do some research and see what I think. Will post back later on.
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Post by von on Aug 1, 2013 15:00:04 GMT -6
Hi everyone an update. Moving info to the blog here: intramedullaryependymoma.blogspot.com/Going to try to get to a good neurologist, see if we can move forward on healing this crap. Maybe an EMG to see what nerves are affected the most at current? Not sure. Also, going to try to get my stuff together and get a second opinion. Feel like mine is complicated enough, hoping maybe I can get info to Jallo and get some feedback. I still think spinal pressure has a lot to do with severity of the symptoms. As far as that goes, radiation has been horrid. I just need more time and learning to get a better grip on how to handle these things. Because I'm stable my nuerosurgeon says he'll see me again in 6 months. My standard of living is still much lower than before radiation. I'm agitated but realize I may just have to "wait and see." Anyone have any suggestions about how to move forward? Pain specialist suggests pump or heavier meds, but I'd prefer to stay away from that if I can.
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Post by von on Aug 15, 2013 16:44:41 GMT -6
Neurologist recommended Tramadol. For the first 8 months post-radiation I could feel little below the waist. Now I seem to be hypersensitive. Having pain and severely disturbing nerve sensations. I've had pain for at least 8 years and not used pain killers over that time. I should have a fair tolerance for pain after that time. Lately I've been curling in the fetal position and unable to move much without pain. My legs have weakened because I don't want to stand or move.
Trying a low dose of Tramadol in conjunction with my Ibuprofen regimen 1800 mg. For now. Hoping the nerves will continue to heal and pain will lessen over time. Neurontin is another option instead of Tramadol. Can do 50 MG tram at night and during day. Not sure if anyone has any suggestions her on what works. Tried things like Cymbalta and Lyrica long ago, do not like side effects. After a few weeks on Tramadol, I'll try to report back with how I'm doing.
ps-Green seems to do well for detox. I'm not one of those believers that everything is a toxin and makes the body sick, but I think with the added load from the drugs, a little more green in the diet is probably a good thing. Green tea and green drinks (kale is good there) and then salads.
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kevin
New Member
Posts: 2
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Post by kevin on Aug 29, 2013 18:15:45 GMT -6
Hi Von, I hope this finds you well. I also had an Epy Max in the same region with a partial excision back in 2007. Anyhow I just wanted to mention the CERN Foundation they only deal with Ependymomas check them out very informative. All the best. Kevin
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Post by von on Aug 30, 2013 12:16:11 GMT -6
Kevin, will do. I'm trying to sign up for a trial to contribute my info to the pot at CERN. Also, trying to follow up with Jallo to see what he thinks. I have had to do a lot of research with food and all just to survive day to day. Doing some research from CERN is definitely my next step. As the NSAIDs wear the bladder pressure is very evident, that seems to revolve around inflammation. WIth the pain, it's harder to tell. Trying to manage with the meds and work on balance. With the cyst: No MRI was performed post surgery, pre-radiation. I could feel the pressure difference, was a huge difference. Pressure returned 3x fold after radiation. I can not say for certain it was the cyst, but symptoms such as pinpoint pain in the arms is definitely not from the tumor way down in the T10-L2 region. All pain in legs and arms was gone post surgery. I know have an additional cyst I did not have before radiation, so my guess is that radiation caused immense pressure return and swelling to come up. Perhaps because I have such a large tumor that is not resected I feel the symptoms more than most people? I'm not sure. :/
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Post by kevinlee on Sept 9, 2013 19:51:03 GMT -6
Hi Von, When you say cyst is that what you mean or drop lesions. Oh yah I just received email from CERN did there latest survey. You should get involved ! they have some very interesting things coming down the pipe (no pun intended). Did you have an Immunohistochemistry done on the tumor cells ( part of Neuropathology ) if so was it positive for GFAP, CD99, EMA. I did a little detective work and its Gene related it seems very intense I can only get involved in the study for so long you have to dissect a lot of words to understand the meaning. Anyhow all the best and keep up the good work. Kevin .
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Post by von on Nov 16, 2013 12:12:15 GMT -6
Thanks Kevin. I'm not sure about the difference. I have one "cyst" that extends up from the tumor up to the shoulderblades area. A second small pocket of fluid formed closer to tumor after radiation that wasn't there before. I need to learn more about what to ask the surgeon about. Still so much I don't know. Will ask about the immunohistochemistry next visit. My surgeon does not explain anything but is open to questions.
I have a possible theory that the pressure from the cyst may be pressing on my adrenal nerves. It's just north of the tumor, one section. I think maybe I did so well on steroids because my cortisol is bottoming out. I am in the middle of going through tests to see how cortisol and stress hormones are performing. Also an MRI coming up. Will post an update later on after I get all this done. I think the pain med (Tramadol) put additional stress on my suffering adrenals and made the issue worse. Will see how it plays out.
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Post by leks on Nov 16, 2013 15:31:24 GMT -6
hi von
just wanted to chime in here, I'm 4 months post radiation and have a whole bunch of problems I never had before. a lot of what you have written here I can relate to. I'm also post for answer's as I'm told everyone reacts differently to radiotherapy.
anyway, thanks for keeping third thread alive.
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