Scheduled for surgery sept 8th

[josh Oregon]

They think my tumor is a ependymoma. It is near C3 and 1.5 cent in length. Inside of cord and almost the size of the cord it self. My symptoms are numbness and tingling in my hands, electrical shocks when I sneeze, sore neck/back, but intact and everything still works. I'm scheduled for surgery on the 8th. 10 days and counting! Hope this is the right thing to do. I had several opinions (4)and for me it just came down to who had the most experience. Every surgeon said it should be removed, it was just a matter of when. I'm choosing not to wait. The first three doctors in Oregon I meet had only done less then ten of these surgeries apiece. I found a guy at UCLA who has done almost 400. Just wanted to hear some feed back. Whats it like after surgery? Is your recovery based on how good of job the surgeon does? Will I ever be the same? My wife is due on the 24th, with our first child. I hope I can hold her.

[shelly]

Josh - read my post. I hope that it gives you some insight. Please keep us notified on your condition. I will pray for a speedy recovery. If you have any questions for me, please feel free. I live in Florida.

[amanda]

Josh, I am sorry to hear your news. I know how frightened you and your wife must be . I just wanted to let you know it does matter what kind of surgeon you pick. My dad had an ependymoma removed from his cervical spine about fifteen years ago with total resection. He had a MRI done every year for the next 7 years and they all showed up clear. The physician told him he did not need any more MRIs. Two years ago in 2007 his leg started getting numb and a MRI showed the tumor had returned. He had a second surgery with partial removal of the tumor. He is now considering radiation. When the tumor returned the second time it measured about 4cm. The tumor is growing again and he is now considering radiation. My dad has had some loss of feeling, he has burning sensation, muscle spasms, can not feel cold from hot on one side of his body, some balance issues at times, but considering what he has been through he is still walking and doing okay. I am not telling you this to scare you, I just want you to know the spine is a critical area and you need to investigate who is cutting on you. The surgeon can make all the difference in the world. I would also encourage you to get MRIs every year for the rest of your life. These tumors like to return. My dads tumor was alot bigger than yours so I am sure you will do great. I would highly recommend Dr. George Jallo at John Hopkins he is a neurosurgeon. He is one of the best when it comes to these tumors. I hope you find this helpful and I wish you the very best.

[trobert]

Hi Josh

I had an ependymoma from C3-C6. It's great that you have a very experienced surgeon. I did too, and I think I've turned out pretty well considering the nature of this illness and the surgery. These tumors are super rare and most surgeons have very little experience with them. I'm so lucky that I was diagnosed in the NYC area and was immediately referred to a top guy just a half hour away. I have more numbness-related symptoms than before surgery, but the outright pain I was experiencing is mostly gone. Walk a lot and do some acupuncture after you've rested well for a month or two (acupuncture works great in reducing the nerve hypersensitivity). Expect to be in some discomfort for a while at first and don't overdo it in terms of exercise (i fell off a bike and had a lot of bad muscle cramps from doing too much too soon). I took percocet for pain for about 8 weeks and was happy with it. You most likely will be able to go about your life again once you've recovered some. In 5 days I am going to China to do an internship and finish my MBA classes. I'll be six months out of surgery this week. Like me, you're younger than a lot of people on here and will probably be able to better withstand the rigors of major surgery. My biggest deficit is that I can no longer type with ten fingers, as I have lost some of the fine motor skills in my hands. If you play guitar, piano, etc. you may no longer be able to after surgery. Contrary to what Amanda says above, spinal cord ependymomas only rarely grow back. Myxopappilary ependymomas are much more likely to return, but those grow down in the lumbar spine. Cervical tumor patients often have the best recoveries because the spine and spinal cord are thickest at the neck. Ependymomas are the easiest to remove because they do not grow into surrounding tissue.

[shelly]

TRobert - Did I read correctly that you have had the surgery recently? What symptoms did you have? Your age?

[trobert]

Hi Shelly,

I am 31, I had it in early March, I will be 6 months next week. My story is on the People page, name is Terence. I had lots of symptoms which sucked over several years. Now I have lots of symptoms which suck less, so thus far I guess I am somewhat of a success story. You can read more about my symptoms in my SCT story.

[shelly]

Hi Terrence
I was quite interested when you said your surgery was recently AND your Ependymoma was c3-c6 which was where my tumor was located. Is your story under the general forums? Oh, people page. I'll have to look it up. I didnt have alot of symptoms besides debilitating migraines so my now symptoms suck as well. I think I am a total success story as well. Are you released from your neurosurgeon and with complete resection?

[trobert]

I had my last MRI in early August. I am supposed to have another one early next year and every six months for a while. The NS said everything looked fine. The tumor was fully resected.

[amanda]

Josh, I just remembered you were having surgery tomorrow and I wanted to let you know I will be praying for you. I wish you the very best! I am sure you'll do great!!!

[drummer904]

Josh, I hope your surgery went as best as possible and you are recovering with no problems or defecits.