Post by hotairchick on Aug 16, 2012 22:13:44 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 had a tumor starting at C5 removed, and I have regrowth starting at C3. It will have to be removed, but we're waiting on surgery until the last possible moment. Who told you that you'd be paralyzed after? What docs have you seen?
Cobb Syndrome - SCT (angiolipoma) C5-T6 laminectomy June 2011 at Mayo Clinic. Additional angiolipoma down back & meningioma in right temporal lobe. Aug. 2012: new diagnosis of tumor growing at C3-5/6ish. Next surgery sometime this year.
Hi. I have an intramedullary ependymoma at C2, now impinging on C1. I am in the "watchful waiting" mode, and have my next MRI on Sept 18. I am terrified of surgery, and have minimal symptons, but am still confused about the benefits (if any) of having the tumor removed before it gets bigger and therfore creates more risks, etc...So, can I relate? Most definately!!!
Diagnosed with intramedullary ependymoma at C2, August 2011. Minimal known associated symptons; no deficits. Currently in "watchful waiting" mode via MRIs.
Post by imnotmaggie on Aug 22, 2012 19:11:25 GMT -6
My tumor was C3-T1 and I originally had the bone replaced but after a staph infection had to have it taken out because the infection wasn't going away. The only thing covering my cord is muscle and skin. It still freaks me out but I regained a lot of range of motion once the bone and hardware came out.
I had c4-c6 successfully removed in January 2010. The first neurosurgeon I consulted gave me multiple predictions, each of which included significant chances of paralysis (a 30% chance of paralysis even under the most favorable set of variables). The second and third neurosurgeons I spoke with each said that a skilled and experienced neurosurgeon should be able to avoid risk of paralysis. I have post-op sensory issues but no paralysis at all. I am making this point just in case you have had only one consultation.
Grade II ependymoma, c4 to c6 - removed at Johns Hopkins Hospital on 1-25-10
C3-C7 ependymoma, successfully removed 100% 2/23/2011.No watching and waiting here, MRI done Fri, saw NS Mon, Surg tues. Apparently it was growing into the higher areas. Repeat MRI's fine. The way the tumor was growing is that it did lots of sensory damage, but less motor damage. I can get around ok, sadly, no more high heels or heels. Balance can be off. Numbness, pins/needles etc.....pain has been the worst, and constipation. Ugh! Was very lucky w/NS and neurologist as I did not have a lot of time to set things up. I thought they were just going to aspirated a cyst out, but it was a lamenectomy and I have no back bone (haha) in that area. Don't know what to say, everyone is different and as much as we like to think modern medicine can cure, sometimes they don't really know.