Recently diagnosed - surgery the 26th

[lisamarie033]

Hi folks. So glad to have found this website - it's been tremendously helpful.

I'm 33, live near Boston, and have recently been diagnosed with what my neurosurgeon thinks is myxopapillary ependymoma at T12/L1.

I've had pain in my hip/butt area on my right side off and on for nearly 10 years. The pain would usually last about 3 days and then disappear. I've been to the doctor who knows how many times and have had who knows how many diagnoses of bursitis, ovarian cysts, disc problems, SI joint pain etc. No one ever suggested an MRI because my symptoms didn't present as anything that would warrant one.

On August 12th, I woke up with pain that has yet to dissipate. It was horrible for several weeks - went back to my doctor, got yet again another prescription for 800mg ibufprofen and cyclobenzaprine and a referral for PT. My physical therapist (who was wonderful) was shocked that I had never had any diagnostic testing (MRI). The pain continued and I went back to the doctor to insist on MRI. She wouldn't do it, but gave me a referral for pain management. The doctor at the pain clinic FINALLY ordered an MRI for me (thinking it was a slipped disc) and low and behold, there was a tumor on my spine! This was Nov 7th.

I immediately switched my care to Massachusetts General Hospital, one of the best hospitals in the country. My neurosurgeon scoffed at the quality of the MRI I had done locally and ordered 3 CT Scans, and 4 MRIs to make sure there wasn't anything anywhere else. Luckily there isn't.

He thinks it's ependymoma - the tumor is 1.6 x 1.3 x 3.5 at the base of my spinal cord. There is an enhancement evident on the MRI image at L5 - hopefully it's just inflammation from tumor "leaking." He doesn't think it has travelled and seeded elsewhere. We will have more information when he takes it out and analyzes the tumor. Surgery is scheduled for Dec 26th.

I just wanted to introduce myself and share my story with you all. I'm oddly looking forward to the surgery - hopefully finding out that the tumor is benign (won't know until he takes it out) will be the best Christmas present I could ask for!

I've requested off work until Feb 4th. I'm a middle school teacher. Do you think this is enough time or too much? I realize everyone is different. I'm not too nervous for the procedure itself, just anxious about what my recovery might be like.

Thanks, and best wishes to anyone else going through a similar process.

[m1ta]

Hi there,

Sorry to hear of your SCT troubles. I hope your surgery goes well. I too am a school teacher - It took me 5 months to get back to part time work and 12 months full time. However, even though my surgery went well, the size of my tumor meant I had to spend 2.5 months at a spinal injuries rehab centre. If everything goes well I'm sure you can get back in a couple of months, but my advice would be not to rush things if you don't feel ready.

Try to enjoy your Christmas and all the best for the 26th.

[lisamarie033]

Thanks. Hopefully I'll be up and at it in no time.

My latest development is that I received an "Activity Summary" from my insurance company (Harvard Pilgrim) and I see that not all of my diagnostic testing were paid for (despite receiving approval letters) AND my visit to the neurosurgeon was denied and not paid for - it says "Deny- no authorization, out of plan services - patient liable."

His page at the hospital website says that he accepts HP insurance - but his name doesn't show up when I "Look for a provider" on the HP website. I'm freaking out that now I have to find a different doctor!

I'm hoping that it's just a pre-authorization thing and that I can have him perform my surgery. To find a new doctor and be set back timewise will devastate me.