Cervicomedullary junction tumor

[Dmdgood]

Dear friends. I feel that you're all friends as I've been reading the posts on this forum for the last two months. I have been diagnosed with an unknown tumor of the cervicomedullary junction. It is about 3 cm and presents as a cyst. The MRI showed that it had bled a couple of weeks before the scan, which coincides with an episode where I had a migraine like headache and felt nauseous for a couple of days. The doctors are baffled as to what it might be. I have mild symptoms - numbness and tingling in my hands and feet, some pressure around my head some of the time, and neck pain. I've had opinions from the Barrow Institute and Dr Jallo who are both saying that it's probably an ependymoma, but can't be sure, and have also thrown in hemangioblastoma and astrocytoma as differential diagnoses. But all agree that it is low grade/ slow growing. I am waiting for another scan at the end of March, which the NS believes might be clearer as to what it might be after the effects of the bleed have cleared. I was wondering, has anyone had a tumor of the cervicomedullary junction, and what their experience of surgery was like. Or, if you've had experience of a cystic lesion with bleeding. Thank you for sharing. I have found reading your stories very comforting.

[susan]

I'm glad you found the stories comforting, some newbies said we scared them.
I had a hemangioblastoma at C2, which is close to where your tumor is. I had it resected and am doing reasonably well. I'm not the same as before the symptoms started, but I work and live my life. I can breathe and walk and I am grateful for that.
For me the cystic portion of my tumor was probably causing more problems than tumor nodule itself. They tell me the "good" thing about a cyst is that it helps to separate the tumor from the spinal cord making it easier to remove the tumor without further damage to the cord. My tumor never bled, although hemangioblastomas are made out of blood vessels.
I had my tumor resected in 2008, woke up off the ventilator, not even needing oxygen. I was in the hospital for 4 days and was able to return home without going rehab. I have had mild neuro symptoms and pain since the surgery. I think my pain is partly due to a lot of degenerative changes in my spine. I have had to work at my recovery, I still get treated for symptoms by a rehab pain specialist. It is what it is, there are no guarantees in life. A diagnosis of SCT can be scary, but with the treatment available these days you should come out OK. It sounds like you are looking in the right places with Barrows Institute and Dr Jallo.

[dmdgood]

Thank you for your encouraging words Susan and sharing your experience. They say that a positive attitude is important to a positive outcome and I am trying to stay as positive as possible.