New to this Board

[jojo]

Hello all. I just stumbled upon this board as I was looking for information on hemangioblastomas.  Almost 1 yr and a half ago they found incidentally a hemangioma at c1-c2 on an MRI. The tumor itself is small, 0.9 x 0.7 along with two cycts in the dorsal left spinal cord.  At that point I had no symptoms at all. I have always had issues with neck pain but they said unrelated. I am a fitness instructor so muscle and join pain is something I Have had for many years and chalk it up to exercise injuries.  I went to a couple of Doctors for opinions and one felt it should be removed and the other proposed a wait and see given the precarious place it is located. I chose the wait and see. I have gone for repeat scans at 3 and 6 months, tumor is pretty much unchanged., Cysts seem to be getting slightly larger. I did show to be hyperflexive in my last visit but no other real symptoms.


I go back in 2 weeks- I have had some issues with leg pain over the past 3 months, a lot of it happening at night waking me up while sleeping and some low back pain. My regular neuro feel it is unrelated. At my last visit with my neurosurgeon who is watching it he was leaning towards surgery this fall so of course now I am thinking a great deal about it and my options.

I just wanted to see if anyone else out there had any insight or could share their experience with waiting and seeing, the surgery itself and what some of the symptoms of the tumor/cyst compression was for them. The leg pain is something I have never experienced before so I am really wondering if it is connected.

Thanks in advance for your help!

[dmdgood]

Dear jojo. Sorry to hear about your diagnosis. I have a high cervical tumor that is behavibg well, but I do have some symptoms like neck pain and pains in the limbs. Sometimes I don't notice them, but at times they're prominent, especially when I wake up from sleep. I have both leg pain and lower back pain that I didn't have before, but I also don't know whether those are due from exercise, the tumor, or indeed, just getting older.

It's hard to know what to do re surgery. I have chosen to watch and wait - still waiting at close to 2 years since diagnosis. For me it's hard to justify surgery that is likely to cause further pain at best, and at least temporary if not permanent deficits/ disability. I especially fear permanent disability. Sometimes I wonder what I'm waiting for, as I am potentially prolonging the inevitable. But I guess that it's two things that justify my decision: 1. That I am able to live with these symptoms, which are very mild, and stay so forever, and not need surgery; 2. That technology will improve and I can have minimally invasive surgery should I need it, or even better, a pill to dissolve the lesion, and not have as dire consequences following current conventional surgery.

A question that I have for you is - how are your doctors sure that it is a hemangioblastoma that you have. I can't get a definitive diagnosis of my lesion. It has a cyst, and bled within itself at the time that I was diagnosed. But that's all I know about it. I've had different interpretations of what it might be, but no one is confident.

I wish you a good outcome whatever you decide to do.

[jojo]

Hi dmdgood thanks for your response. Sorry to hear that you are experiencing this as well- and the symptoms. I actually underwent the surgery last week. Upon my last visit the team confirmed the symptoms had definitely gotten worse, and the growth of the cyst and spinal swelling was causing me issues. Once these symptoms became prominent it was clear it had to come out.

I am a little over a week post-op and doing well. Building up strength but it was a success. Now a a road to recovery but I don't have any deficits or damage from the tumor or surgery thank god!

I did get a confirmation from pathology from the surgery that it is a hemangioblastoma. The key for them was watching. The first few months we watched carefully to see if it grew and then 0ver a year and a half the tumor did NOT grow at all..just the cysts. All signs pointed that way thankfully, plus the location on c1-c2 gave them some clues as well. That definitely helped with my wait and see decision.

Good luck, I hope you feel better and can get some answers/relief! Please feel free to ask any questions about my experience i am happy to share.

[dmdgood]

Hi jojo. That is wondeful news, that the tumor is out (and confirmed hemangioblastoma rather than anything more sinister), and that the surgery went well without any damage. That's what I hope for for myself, but who knows? Everyone is different.

I am looking forward to hearing how you get on post surgery, whether you have any pain or whether any sensory issues surface. In the meantime, rest up, and be comforted by the fact that you are over what I consider to be the biggest hurdles in having a tumor - making the decision to have surgery and coming out well!