How do I know that it's really a tumor?

[redaquadeb]

???Hi. My name is Deb and I'm a 51 year old female who has recently been diagnosed with an intramedullary ependymoma that showed up as an incidental finding on some MRIs dating as far back as 2004. I have no symptons, to my knowledge, although there may be a connection to my lower back pain and leg pains, etc., but the docs all think (mostly) that these pains are due to some lower back issues with herniated discs, slipped vertebre, cysts, etc... No one seems to know. Nor does anyone seem to know for sure IF I have this tumor, because it's smack in the middle of my spinal cord at about C1 C2, so therefore, it's apparently inaccessble. I've seen a few docs in Boston, and some have suggested radiation, while others claim that surgery is the only true fix, but they also say that would be far too risky... And, "watchful waiting" may also be risky, as I could begin to have deficits, apparently, at any time, and I would never get those functions back... I am extremely active, and don't want to lose anything! Also, I am really confused, as I think that I have no symptons, and therefore don't want to risk damage to my spinal cord from radiation or, worse, surgery...I feel really lost and confused...Does anyone have any advice or insights? Thank you!

[kansasmom]

Deb, I'm sorry this is happening for you. You have lots of questions and I don't really have answers for you. Are any of the docs you've seen specialists in spinal cord tumors? Are you on a monitoring schedule for this potential tumor where they take periodic MRIs to compare and see if it is changing? Have you found a neurosurgeon who makes you feel confident of their ability yet? It sounds like this would be a good time to find a doctor whom you trust who can better explain to you your various symptoms and come up with a plan for monitoring them and the 'tumor' to see if they change.

I'm sending you positive thoughts and I hope some of this might help, even a little.

[redaquadeb]

Thank you for your support; I really appreciate it! I have not yet seen a true "spinal cord tumor specialist, " but am working on it. My current "team" at BIDMC suggested a doc at MGH, and I am waiting anxiously to find out if they can get me in to be seen...I am being monitored, but it's been really hit or miss thus far. Right now, I am in a "holding pattern," and the lack of knowing anything concrete is driving me crazy. Additionally, there is no firm agreement amonst the docs that I have seen to date as to how to proceed, so, again, I feel really lost. It appears that my three options (at least at present) all have their own risks attached, so I am trying to figure out which option may be best for me. Also, I am still very confused about how they were all able to diagnose me (albeit not 100% definatively) without a biopsy... Do you happen to know how reliable and "telling" MRIs over time are? And yes, they did show that the tumor grew...Again, thank you so much!!!!!!!

[kansasmom]

Deb, once you have a doc name you can also search here and see if anyone else has worked with your doc.

I really don't know much about how MRIs are interpreted. I know that my son had contrast administered during his MRI, which is how they saw his mass. They didn't know what type of mass he had until he had surgery and the pathology report came back. At each MRI the report stated a size of the mass so they used that to compare and decide if it was growing.

My son is now having radiotherapy. I'd heard quite a lot about surgery being the best treatment so I got a second opinion before we chose to have him get radiotherapy, even though he'd already had surgery. Dr Jallo at Johns Hopkins looked at C's MRIs. He is very responsive and comes highly recommended. If you need a second expert opinion you could contact Dr Jallo.

I agree, it's scary and very frustrating that each option has its risks. A few months ago if you'd told me that I'd be reading a surgical permission paper detailing the risks to my son of having a spinal op I'd have freaked out, for sure. I didn't even know that spinal cord tumors existed, or anything about surgery of the spine. Yet my son did pretty well with the surgery and he is doing well with the radiotherapy. He had some losses from the surgery, but he was losing function quickly so there was not much choice in the matter.

I wouldn't wish this on anyone. All I can suggest is that you keep moving forward and try to focus on what you need to do next, rather than thinking of what will happen down the road.

[redaquadeb]

Thank you again. I appreciate your support and the information. I have heard of Dr Jallo, and am thinking about approaching him. In the meantime, I'm just trying to keep my head screwed on straight... I wish the best for your son! I truly hope that he is able to regain some (all, ideally?) of the functions that he has lost. Best to you and your family!

[sanrodgers]

I was diagnosed with intramedullary ependymoma 6 years ago and was advised to have op. I was given anaesthetic but apparently my blood pressure dropped due to being placed on my tummy and they abandoned the op. I have regular MRI's and I don't feel any worse but now the surgeon wants me to have the op. I am 70 years of age and the tumour is slow growing so I am unsure of what course to take. Any advice?

[kansasmom]

Did the surgeon say why they recommend surgery? Please be sure to get several opinions before making a decision.