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Post by Ali-Brad on Nov 1, 2012 12:58:55 GMT -6
Hi - I had two surgeries on an intramedullary ependymoma back in 2004. Mine was at C1-C3 and I was left with about 10% of tumour. I had a C1-C5 fusion in the 2nd op with bone from my hip planted over the metalwork. It is only now that my residual tumour is showing signs of growth, but I've had eight years before this added worry. I would still have gone ahead with the surgery. I believe it was the best option. I am now looking at radiotherapy issues to address my next concern. Take care
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Post by kayleem on Nov 13, 2012 1:05:12 GMT -6
I had a laminectomy March 7, 2012 at my c-1 to c-4 to remove an astrocytoma so I can relate to you and what you are going through. I lost feeling in my right hand, part of my right arm, and my right leg and foot. I have my ups and downs but I am recovering faster then my Dr's thought I would. I was told I was going to be walker dependent upwards of a year and less than two months post surgery I was walking on my own. I would say a lot of my set backs are more mental than physical. My tumor was found January 15 and my surgery was March 7 and that was not enought time to prosses what was going on and now having the constant struggle of my mind saying I can do something but my body not being able to is so taxing. I am so thankful that I am walking and alive but this is truly the most difficult thing I have ever gone through in my life. I have an amazing 2 year old daughter and a husband who has been my rock and a suport system that motivate me to keep going but they will never know the inner struggle and frustration I go through on a daily basses.
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Post by Todd on Nov 13, 2012 15:44:43 GMT -6
imnotmaggie, who removed the bones? Was it your NS? Was it while you were recovering in the hospital post op or did you have to come back after you were released from the hospital? I have 4 bones plated back on and I am thinking that one of them is causing my head forward posture and all my upper back problems. I am thinking about having it removed, which they should be able to do non-invasively. I am wondering after 3yrs if I should see my NS or go to an orthopedic surgeon. My shoulders pitch forward as well, which makes me think my muscles may not be put back in the right place.
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Post by imnotmaggie on Nov 17, 2012 4:25:49 GMT -6
Todd I got MSSA while in a nursing home three weeks post surgery since I was unable to care for myself. They wouldn't listen to me when I told them something was wrong and by the time they called my NS the infection was really bad. I went straight from the NS office to hospital admitting and had surgery to debride the incision site trying to save the bone and hardware. Four weeks of IV antibiotics and the infection wasn't going away and since the bone no longer had a blood supply it couldn't fight it and my NS had to make a decision to remove the infected bone and hardware. So I had my third surgery and he removed all of it in hopes the antibiotics would finally kill the MSSA. Then I got to continue another six weeks of IV antibiotics only to have the infectious disease doctor tell me they have no way of knowing for sure the infection is gone they just hope the antibiotics worked.
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Post by josh6148 on Apr 8, 2014 22:58:22 GMT -6
Hey I had a tumor removed from outside my brain stem with 5mm of the bade of my skull along with it the took out my c1 vertebrate used to support the head and trapezeus muscles. I also had 60 percent of the one growing in my spinal sheath itself between c2 and c3. I found after surgery my strength return and energy lecels up. Though I couldn't lift to much do to blood pressure and wholesale being punctured in my veritable artery. I am now post 1 year and see reoccurring symptoms so if you have a way of removal I'd take it hands down.
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Post by WhiteAngel on Apr 24, 2014 0:57:34 GMT -6
Anyone else out there have their tumors in the C1,C2,C3 area of the spine? Mine are there and I had to have the backs of three of my vertebra removed and they covered it with tissue because my bones were so pushed apart they couldn't put them back on. My tumors also cant be removed or I would never walk again. So once a year MRI it is for me for years to come. I also have two cysts at the base of my skull. Can anyone relate to this or in this area? let me know! yes I have n I even have a cyst too, just wait and see, not only will you never walk again there's a strong possibilities you wont be able to have the use of your arms or breath for yourself either, be very careful...read my story on my blog...
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Post by cindy on May 24, 2014 12:19:33 GMT -6
I had a meningioma from C3-C5. Successfully removed 100% and no residual problems. It had been there, they say, over 20 years. Menigiomas are very slow growing. Had many, many symptoms. Many Many Diagnoses: Fibromyalgia, Rheumatoid Arthritis, Multiple Schlerosis, even Myotonic Dystrophy. Finally had an MRI after 20+ years of symptoms and now in good shape. Don't be discouraged. Think positive. Wonderful outcomes do happen.
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Post by Pete on Dec 9, 2014 5:52:11 GMT -6
Hi, I had a large intra medullary tumour c1 to c3 missed diagnosed for many years, which crushed my nerves to a small ring surrounding the tumour, when finally diagnosed in August of 1998 I was told it was inoperable and incurable and to go home see how long I could live! Devastating! This I couldn't accept having a young daughter 18 months and working hard to better myself, I asked for a second opinion from my neurosurgeon Mr ND who said waste of time and refused, so I went to Germany to see a doctor friend who took me to the MHH hospital in Hannover amazing service for about £1000 I saw a top neurosurgeon the registra to professor Sammi who operated on Boris Yeltsen in one day I was MRI scanned and given the results and diagnosis, which wasn't good but much better than I had been given in the uk, the tumour was very large, but if I had an operation within two weeks I had a chance of living, it was operable, why was I told it wasn't? The germanswere very good wanting to do the operation, hi risk of death, paralysis etc, but the nhsinsisted I came back to the uk and if it couldn't be done in the uk then they would fund it in the EU, again the Germans stepped in and argued my case with the nhs saying it must be carried out immediately, I returned to the uk and spoke with the nhs a Mr Guy Pettigrew, who was very helpfull unlike most I'd seen, I was told to find a surgeon, for two weeks my wife and I scoured the country by two telephones constantly libraries a friend who had Internet etc heard from a retired professor of neurosurgery (British) but living in Ohio, who said go to Queens Square London, camp outside if you need to, after a bit more research we came up with Mr Alan Crockard, an excellent yet arrogant neurosurgeon, who struck a deal with the NHS to operate, however it was 18th of December and I woul have to wait until the 17 of January for admission due to Christmas, by the time it came I was very weak but the operation went ahead, wired up with electrodes all over the 7 hour operation was deemed a success, however I could feel a thing beside the right side of my face, this slowly recovered over the following months and physio, radio therapy etc obviously I am still doing relatively well today some paralysis to left side a lot of pain but the pain control is quite good, and it's good to be alive, since I have had an operation to repair a leaking dura ( menningeocile) another to remove debunk a cyst which grew in the tumours place, have check ups MRI's 12monthly have three nodules small tumours to my mid, lower and coccyx but these do not appear to be growing to any extent to be worried about, beside the pain, fatigue etc life's good and nice to be hear, luckily I didn't listen to my then GP's or local neurosurgeons, I thank Neil Pettygrew, Guenter Baek, Mr Alan Crockard , and now Mr David Choi of the national hospital fo neurology and neurosurgery, and my then wife Jennifer. I am told these tumours are best treated as soon as possible to limit damage, but I'm no expert. Hope this might help or encourage someone else, best wishes to you all.
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Post by Me too on Apr 20, 2016 17:22:03 GMT -6
Anyone else out there have their tumors in the C1,C2,C3 area of the spine? Mine are there and I had to have the backs of three of my vertebra removed and they covered it with tissue because my bones were so pushed apart they couldn't put them back on. My tumors also cant be removed or I would never walk again. So once a year MRI it is for me for years to come. I also have two cysts at the base of my skull. Can anyone relate to this or in this area? let me know! I have two skull base tumors at c1-c2. They won't touch them unles they become life threatening. But I have terrible headaches neck pain and numbness in arm, I have something new now called scintillating scotomas - they swear it's not from the tumors but I only had one tumors before and now I have this vision thing and another tumor - they are on top of each other and total an inch which is about 2.5cm
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Post by Jess on Nov 14, 2016 12:29:56 GMT -6
I had a laminectomy March 7, 2012 at my c-1 to c-4 to remove an astrocytoma so I can relate to you and what you are going through. I lost feeling in my right hand, part of my right arm, and my right leg and foot. I have my ups and downs but I am recovering faster then my Dr's thought I would. I was told I was going to be walker dependent upwards of a year and less than two months post surgery I was walking on my own. I would say a lot of my set backs are more mental than physical. My tumor was found January 15 and my surgery was March 7 and that was not enought time to prosses what was going on and now having the constant struggle of my mind saying I can do something but my body not being able to is so taxing. I am so thankful that I am walking and alive but this is truly the most difficult thing I have ever gone through in my life. I have an amazing 2 year old daughter and a husband who has been my rock and a suport system that motivate me to keep going but they will never know the inner struggle and frustration I go through on a daily basses.
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