New Here with Questions

[sink]

Hi,

Two months ago I was diagnosed with an ependymoma tumor that is at the C6-C7 level. It is 8mm wide by 18mm long and roughly shaped like a peanut. To give you my back story about 8 months ago a had a terrible shocking feeling in my lower back, around the front of my midsection and it would go down the front of my legs but stop at my knees. This was very intense and happen a lot first but didn't really hurt. Just felt like I was getting shocked and I would tense up because of this. I went to my family doctor and he did blood work looking for diabetes amount other things and all came back fine. He did x rays, a CT scan of my mid section and that came back fine as well. Next he did a test were basically they stuck needles in my legs and shocked me to measure how my nerves were working. That came back fine as well. He then referred me to a neurologist who the ordered an MRI. He was looking for MS.  Thankfully it wasn't MS but found the above mentioned tumor instead.This all happened over the span of several months and the shocking sensation gradually went away and stopped and about the time I got the MRI they had come back but not as intense and at a very low frequency. I was immediately gotten in to see Dr. Potts at St. Vincent Hosipital. I live in the Indianapolis area. He gave me all the very grime outcomes of the surgery and basically scared the hell out of me and my wife. Nothing bad about the doctor just a big shock because overall I felt good other than the electrical pulse issue that really wasn't causing me any issues. He said we have time because of it not really causing me any serious issues. He wanted to wait about 2 months a do another MRI which is this Saturday and I have apt with Potts on Monday.

After receiving this news I wanted to get other opinions. I saw Dr. Hall here in Indianapolis and I also saw Dr. Barrow out of Emory Hospital in Atlanta. (I work for a great company based out of Atlanta and we have a connection to Emory is how I ended up there.) All said about the same thing and were all similar in the approach except Dr. Barrow said he would likely put my bones back in my spine. He also recommended a different doctor in Indianapolis other than who I had seen that was more qualified to operate on ependymomas. He recommended Dr. Cohen which I haven't seen yet as he is out till Feb 8. They all also all said I needed to watch for symptoms very closely especially with my hands. This has of course made me paranoid of any aches,pains, weird feelings is caused by the tumor.

Over this last couple of months I have felt good. They only symptom I think I might have is my hands feel a little funny. I still do everything like normal and touch feels the same but they just feel slightly numb is the best way to describe. Occasionally they will tingle and my forearms feel tired/ache a little like I am straining to use my fingers. But I only notice this when I think about. It hard to tell if I am just paranoid or it really is a symptom.

So I found this website last night. The first doctor I saw recommended that I not search the internet for this as I would only find the worst of the worst and scare myself even further. I finally went for it and did a little looking last night and came across this sight. I have read a lot of the stories. But my situation seems a little different than most. Most had severe side effects of the tumor and surgery was done pretty quickly there after and then through reading through the site the after the surgery effects vary greatly as well. More seeming to numbness and months and months of recovery. I feel generally good other than the philological impact of knowing I have this thing in my spine.

Here are my questions. These are big ones and I am hoping others have had similar experience they could share.

How long do I wait have the surgery? Right now I am just watching for symptoms. But how bad of symptoms do you wait for before having it done? From what I have learned the better you are going into the surgery the better you come out of it. So that part is promising for having it done sooner that later. But the surgery could generate problems that I don't have today. So if I waited I will be "normal" for longer. It's just a very daunting decision to have to figure out.

Does anyone have any experience with these doctors or any others that are the best at doing this?  As far as ability goes I liked Dr. Barrow the best. He by far had the most experience operating on 100+ ependymomas.

Thanks for reading my story and any advise or stories to share would be much appreciated. This is just tough working all through this, I think it is harder on my wife though.

[dmdgood]

Dear sink. I also have a tumor in my cervical spine, very high up, in the craniocervical junction (between C1 and the brainstem). It's quite a large tumor, about 3cm long and 1.4 cm wide at the last MRI six months ago. I have had 5 opinions, and the majority guesses are that it is an ependymoma, but all of the neurosurgeons have been reluctant to say that it is for sure. I know that's usually the case without a biopsy, but they are really baffled about this one. It's a cyst, so very difficult to tell.

My symptoms are very similar to yours - pins and needles and weakness/ fatigue in my limbs at times. I also have tension at the back of my head and in my neck and shoulders sometimes, which you would expect with a tumor in this region. I know what you're saying when you say you feel good except for the psychological impact of having this thing in your spine. Sometimes I freak out about it, and like you, it's hard to distinguish between normal aches and pains and what might be related to the tumor.

I am also watching, and I suppose waiting, but I'm not sure what I'm waiting for. I would rather never have to face surgery, but I'm not sure I'll have a choice. The decision to have surgery is a difficult one. I've been told that it makes sense when your current condition is poor enough that you can take the risk to have surgery, but not when it's so bad that you risk losing those things that have malfunctioned forever. Just don't rush into it is what I think. Find out what the tumor is doing; it may do nothing and there are plenty of people around who have dormant tumors.

I hope you continue to only have mild symptoms and that you don't have to have surgery. Keep well!