I had hoped and prayed my next blog post could simply state, "Stable Results," but, unfortunately, that doesn't seem to be the case. I'm also writing this without all of the information, so if there are unanswered questions, just know that I am most likely wondering the same things. I was waiting to post until I heard from Dr. A, but since there's a hold up with that, I'm going to report with our preliminary findings. This is what we know.
Jacob had surgery on his right vestibular schwanomma on October 29, 2013. During resection of the tumor, the surgeons removed Jacob's right hearing nerve and right balance nerve. A portion of the tumors was left to preserve his facial nerve function. Directly after surgery, the doctors believed they left about 2% of the tumor attached to the facial nerve. Given that the goal of the resection was to remove as much as possible without disrupting the facial nerve, the surgery was a success.
Jacob had a post-op MRI of his brain on recovery day 1. I saw the images. He gave Jacob a print out of the before and after images. I wouldn't call my initial reaction disappointment given that the surgery went so well and I was so thankful that they saved Jacob’s facial function, but I remember wishing they had removed more. He did have some mild facial weakness, and at that time we did not know if he would regain 100% function of the right side of his face. I had the thought that if he wasn’t going to fully recover, at least I could rest knowing they removed as much as possible. I can say now I’m glad he recovered fully.
Looking at the post op MRI I can remember a view where you couldn't even see the tumor, and when the image moved down, it looked similar to a thick crescent moon. Dr. A did say after the MRI review that 10-15% was a more accurate assessment of how much of the tumor was left. After 15 hours of surgery, I was just thankful that it was no longer the almost- 4cm brain tumor compressing Jacob's brainstem, and that Jacob was alive and doing well. Dr. A provided that photo mentioned above to Jacob with the before-and-after images side-by-side and very clear. You can see both the right and left VS’s in the side-by-side shots. The right side VS at that point, post-op day 1, was considerably smaller than the left VS.
We knew going in to the surgery that there was a 60% chance of re-growth even if the entire nerve was removed. It's one of the reasons doctors don't think sacrificing the facial nerve is necessary. We knew it could grow back.
Fast forward almost exactly 3 months, Jacob had an MRI at home in Tallahassee on January 27, 2014. I received copies of the images, burnt them on CDs and sent them to Dr. A, Dr. Brackmann and Dr. Pincus. I sent emails informing each of the doctors that the scans were coming.
This past Monday, I went to Radiology and Associates and picked up a copy of the written reading of the MRI. There was mention of Jacob's spinal cord bulging at C1 and notes of changes in a huge, 7 cm para-spinal tumor Jacob has in his lower back. Both concerning, but neither as shocking as the measurements of his right VS. His left side had very slight changes (Thank you, Lord!), but his right side was measuring, at its largest length, 2.6 cm. I tried not to be alarmed. I imagined that it could be scar tissue, or maybe that it was the measurement of where the tumor is elongated onto the facial nerve.
The next day, we went to see our neuro oncologist in Orlando, Dr. Smith, with scans in hand. Jacob sees her at least every six months, regardless of whether he's in treatment. We had intentions of talking with her about drug therapies for hearing preservation for Jacob's left ear. She did her exam and looked at Jacob's scans. I looked at Jacob's scans. I was very sad to see the right VS was now, once again, larger than the left. It had grown back to a rather large size in just a few months. Obviously, I'm not a doctor and I don't have skills in measuring volumetric tumor sizes, but by eyeballing the scans, I can say with near certainty that the right VS has at least doubled in size over the last 3 months.
The NF2 community is telling me that this can't be right... I'm hoping very much that I am wrong. I remember in Summer 2011 we asked our medical team to look at a tumor that had not been scanned for several years near Jacob's adrenal gland. It was 5 mm when they first found it, years early. That Summer’s CT scan showed it had grown to be 5 cm. We decided to have it removed. Five months later, Jacob had a pre-op CT the day before surgery. The adrenal gland bed mass had doubled in size and was over 11 cm. Five months. It was also verified to be a schwannoma. Just saying.
So, back to Tuesday. Our neuro-oncologist feels like Jacob should see a radiation oncologist. Starting a cycle of Avastin (chemo) is also in the plan to support possible radiation and maintain hearing. Jacob has an appointment in Orlando this coming Tuesday to meet with the radiation oncologist to see what, if anything, he can offer. The post-op scans from UVA are being sent to Dr. Smith and the new scans have been sent to Dr. A. I am waiting not- so-patiently to hear from them, and, hopefully, Dr. Brackmann, soon, too. I haven't even asked about the spine yet.
That's all I have for now. Heavy hearts and occupied minds at our house this week.
I do want to wish all of you a very Happy Valentine’s Day! Hallmark holiday or not, everyone could use a little reminder of how much they are loved! May all of your lives be filled with love!