Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Recent mris show several hemangioblastomas located in the nerve roots of my 16 year old. I understand that this is a rare location for most VHL spinal tumors. I was told to have her rescanned in 6 -9 months; if they haven't grown then she could go two years between scans. Unless, of course, symptoms should develop.
I would like to talk to others who might also have tumors in this location.
Thanks,
Alison
Hi Alison!
I wanted to answer, but I'm not quite sure what is meant by the nerve root ... where is that, exactly? I do know I have tumors up and down the length of my spinal cord. Like "salt and pepper" is how one doc explained it. Is the nerve root at the base of the spinal cord, or is it at the base of the skull, or is it right at the spots where nerves branch off the cord to travel to the extremities?? Maybe other folks are wondering the same thing ...
Either way, I am sure you are upset to get this news. How is Chloe feeling? I hope all is well with you and yours.
Love, Renee
Hi Renee,
Good question. I think they are at the L-3 level, which I believe is below the spinal cord and where the nerves branch off. I used to pheos and eye tumors, this is uncharted territory for me.
I'm not too worried now - just hope they sit there and do nothing.
I'll write to you privately so we can catch up. ;-)
Love,
Alison
Alison,
6 weeks ago I had one removed that was pressing against the spinal cord at the T-12, L-1 region. That location is called the "conus" where the spinal cord actually ends in the shape of an ice cream cone. The nerves that control below the waist all come into the spinal cord at the conus, so there are a lot of nerve roots there. My tumor was wrapped around all the roots, and starting to travel downward. We watched it for years, until it caused problems. The surgery went well, but did rough up a lot of nerves, so I have some effects that hopefully will be temporary (nerve cells grow slowly, so it will take awhile to see if they repair themselves completely). My left leg has weakness, my left pelvis has pain. Medication blocks the pain signals, so I am pain-free while it heals.
From the conus those nerves travel down inside the spinal column (without any spinal cord from this point down) and they split off as needed into the body. Your daughter's location at L-3 is not too bad because it is actually a little below all the "roots" at the conus.
So anyway I agree with your plan to wait for symptoms. It may never grow any further, and why take the risks that come with any surgery. But I encourage you to ask the docs for specifics on what symptoms to look for, and when to call them. I had hip pains at night for months that I ignored & blamed in on aging. I had a change in my bowel and blatter control that I also blamed on aging. I should have had surgery sooner, but am happy with the results.
I'll be happy to answer any questions, but am glad you have a medical team that you is monitoring this for you. In the meantime, your daughter should forget about it and live a normal life. I did. I still do.
Larry
Hi Alison
Well, there you go. I didn't even know that about the nerve roots and the conus and stuff! But I did have tumours at L3-5 removed in two surgeries about a year apart. And they did tell me that it was rare to have them that low. In fact, they said, at the NIH, that they don't usually even scan that low for VHL patients.
I had my tumours from the time I was around 15 or 16, but I only know that because I had a numb spot along my left shin that started around that age. Then, when I was 29, the tumours grew (there were two right beside each other, jammed into L3-5) and I started to notice that I couldn't feel the stream when I voided. I had to listen to know when I was done peeing! So then I had my first spinal MRI and was told about the salt and pepper tumours all over my spinal cord.
Anyway, it seems our mutation has got to be exactly the same one. So I hope you will take some comfort in how long it took for my spinal tumours to cause me any trouble. And the only reason I have any residual problems now is because the first surgeon only took out one of the two tumours, and he made a bit of a mess of the surgery. The second surgery was done at the NIH a year later. I should have gone there in the first place, but I wanted to have the surgery at home so I could be near family and friends. BAD idea. ALWAYS go where the experts are, is my new motto. It might be hard in the short term, but in the long-term it is a much better decision.
Anyway, I'm talking (typing) too much! If you have any questions, though, don't be shy!
Love,
Renee
My spinal cord tumors are all over but the largest one
3 cm is in the nerve roots of the L 4-5. I have an appointment with my neurosurgeon, to be safe, but the radiologist said it had not changed size in 1 year.
I am not familiar with all of these terms, but I guess we are all learning together. Thanks to everyone who passes along info they have learned along the path.
Tina
Thanks to all of you for such detailed information!
The mri was suboptimal - I'm assuming that just means fuzzy. The one they know of for sure is there is at least a 2 - 3 mm tumor located along one of the nerve roots of the cauda equina, seen just left of the conus. Then, it says, "there is likely a second similar lesion at the lower L3 level and there could be an additional smaller enhancing nodule present. These all appear outside the conus, located along the cauda equina at the lumbar spine level."
Very difficult for me to understand because I am simply not familiar with the spine. I am sure that will change for sure.
You all have given wonderful examples of possible symptoms to look out for. Hopefully, like many of you, these will just sit there and do nothing for a long, long time!
Alison
Good for you for getting copies of your reports!
My MRIs for different parts of my spine (Cervical,Thoracic,Lumbar) all say "small nodules of enhancement" from tiny to 2-3 mm oh yeah and I was wrong, the largest is at C6-7 : 5 x 4 x 5 mm (not cm!!!
that was a big mistake by me in my last post)
"that likely represent hemangioblastomas".
I freak out when I read these things but talking to the neurosurgeon always is the BEST answer because our knowledge base is tiny compared to theirs!!! esp if you have a good one.
Good luck,
Tina
Yes, I agree. Dr. Lonser from the NIH is going to look at her scans and give me his opinion. I know I'll feel a little more at ease after speaking with him. It's always the fear of the unknown that gets you. Knowledge is definitely power!
God bless,
Alison
Add to the discussion