Nerve Root Tumor @ L5

Hello, I have a Tumor growing off the nerve root at L5. I was wondering if anyone had a similar type of tumor and what it may have been. I had a scan after my last back surgery in November of 2010 and there was nothing there. Then in January I was seeing my urological surgical oncologist and she noticed the spot and couldn't identify it, but thought it may be a pheo so I had an mibg scan, and it was not a pheo. So, I had a complete spine and brain scan, and I saw one of my neurosurgeons and he said that he wasn't real sure and that he would notify the doctor that had done my back surgery. Then they scheduled me for a biopsy, and my case was bounced around til I wound up with the chief of the neuroimaging dept. Next my biopsy was cancelled and my doctor wants to see me in clinic. So, I was wondering if anyone had any experience with a tumor growing off a nerve root and what ended up happening. The first neuro doctor said that the surgery would be a "large exposure". Not 100% sure what he meant by that, just kinda assumed it meant that it wouldn't be easy to get to. Anyways, any help would be appreciated. Thanks in advance.

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Obviously we are not able to diagnose this here. First, do you have a diagnosis of VHL? I am going to assume that the answer is "yes" and make some guesses here, but if the answer is "no," then my guesses will not be relevant.

Your doctor gets points in my book for cancelling the biopsy. If you have a diagnosis of VHL, then the primary suspect is a hemangioblastoma, which is a mass of capillaries. If you took a scissors and snipped a piece out of a mass of capillaries, what do you think might happen?

Yes, it would bleed, potentially uncontrollably, and would necessitate an emergency surgery. So a biopsy of a hemangioblastoma is definitely a bad idea.

My guess is that they are suspecting it's a hemangioblastoma. Please rely on your doctors to go step by step and diagnose what is going on. If you are not comfortable that you are getting advice, we will be happy to help refer you to a capable source of second opinions.

Interesting that they suspected a pheo before a hemangioblastoma in the spine. The MIBG tracer seeks out pheo cells and clings to them so that they will "light up" on a PET scan. Now that they have ruled that out, the more likely suspect is a hemangioblastoma.

All best wishes,
Joyce

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Joyce,

Thanks for the information. I hadn't considered the possibility of a hemangioblastoma for some reason. Probably because of the location. It started when I had my scans for my regular abdominal check up, and my doctor noticed a lesion, she thought it was on the nerve root, but from the abdominal scan it wasn't easy to tell, so she ordered the MIBG just to be sure. Then when she saw it was not a pheo and definitely on the nerve root she told me to see my neurosurgeons immediately. I saw one and we scheduled the biopsy as a just in case, then he passed it on to my other doctor who handles my spine to make sure of what route he wanted to go, and that's when the biopsy was scratched, and he wanted to see me in clinic. I am going today, so I will have some answers in less than 12 hours. I go to UCSF for my care, and they are great there. They all stay in contact with each other and I feel like they work together as a team always to make sure they are doing what is in my best interest.

Thanks again for the info and the help. I will let you know what the final decision is regarding treatment or if there is a determination of what they think the lesion is. I appreciate your dedication to helping us here. Your knowledge of VHL and everything surrounding it is invaluable. It's great to have a place where you know you can come and get honest and informed advice.

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Hi. I had two tumors on the nerve roots at L3-5. They were hemangioblastomas, and I had surgery about 10 years ago to have them removed. Actually, two separate surgeries but that is a long story. I waited until I had some symptoms/deficits from the tumors before I had surgery and so I still have those deficits today. But I can still walk, and unless I am tired I don't think anyone could tell that I have one weaker leg. The best advice I can give you is to make sure you have the best doctors and surgeons. Make sure that they are experienced with VHL and with your particular situation. If you have any other questions, I would be happy to try and help you out.

Good luck!
Renee

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thanks for the info renee, I went to my appointment today, and due to some confusion on what tumor was the main concern, my doctor hadn't had a chance to really go over the tumor at L5 when I got in there. He had assumed that since the biopsies had been turned down that it must've been a tumor I have at C4 that was in question. Which he stated he would wait until that one became more symptomatic til he removed it, because he said he'd have to take a frontal approach on that and clear a way, meaning two levels of fusions and a cage and other hardware afterwards, so he wanted to be a little on the cautious or less aggressive side when it came to that one. When we turned our attention to the one at L5, he said that it was definitely a nerve sheath tumor, probably a schwannoma. I guess one of the people who does biopsies declined because they werent convinced it wasnt a pheo, and didn't want to risk a chetacolamine crisis, and the other thought it's location was too dangerous due to the proximity to the main arteries that run down to your legs. So, my doctor sent emails out to basically everyone who had their hands on my case in the last couple months to see if anyone had any less invasive or easier ideas than surgery, since he would have to go in through my abdomen, and considering it's closeness to the arteries, he would also need a vascular surgeon on hand. He just wanted to have a final brainstorming session with everyone before committing to a tough surgery. He said he can definitely do it, he just wants to make sure he doesn't put me through something unnecessary. Which is understandable. He said that when he hears from them he would contact me, but to contact him in two weeks if I havent heard back yet. I have the utmost confidence in my surgeons. UCSF is the #1 Neurosurgery hospital in the west and I feel 100% confident in their abilities and decisions. I really probably should have stay off the internet when this all started. This day and age, it's so easy to get yourself worked up trying to self diagnose through googling symptoms and looking up a million different things it could be in your head, but in reality 99.9% aren't even truely possibilities at all.

Joyce, I forgot to answer your question of whether or not I had been diagnosed with VHL. The answer is yes just as you assumed, I have had the genetic test and it came back positive. I mean I met the clinical diagnosis long before that, and my mother and sister have it too. They both I think read the boards here sometimes too and post every now and then. I have posted before because my wife and I did the PGD IVF a couple years back and now have a wonderful, healthy VHL free baby girl who is almost 15 months old now. But, I have another question for you Joyce if you are reading this, I did what I said I shouldn't and looked up schwannoma's on wikipedia and it said that they are often associated with neurofibromatosis. Could it be possible to have both VHL and NF? Not that I think one potential schwannoma means that I have it, I'm just wondering if it's worth being tested.

Okay, thanks to both of you for your replies. I appreciate anything you have to offer.

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Congratulations on your daughter!

First, you are doing the right thing by "doing your homework" on the internet. What you need to remember, though, is that not everything you read is (a) authoritative, or (b) applies to your case. So it's okay to read for background, and to "learn the language," but take it with a large grain of salt and ask questions of your own doctors.

You are quite right that the folks at UCSF are excellent, so you are in good hands. Even though he believes it looks like a schwannoma on the scan, though, I would still not rule out that it might turn out to be a hemangioblastoma. At different stages of growth they can look somewhat different on the scans. As long as your doctor is aware that you have a diagnosis of VHL, then he is aware of the chance that it might be a hemangioblastoma, and it sounds like he is prepared to deal with that possibility in the surgery.

You might want to ask the good folks at NIH to take a look at the scans too, not because your UCSF people are not knowledgeable (they certainly are), but because the folks at NIH have seen more VHL scans, so their perspective might add something useful to the conversation.

It is possible but not probable that you could have both NF and VHL. There are a couple of families who do have both genetic flaws in their mix of genes -- some family members have VHL, some have NF, and some have both together (and some have neither!). Both are dominant genes, so it's the luck of the draw. But of course that is pretty remote.

It sounds more probable (theoretically -- this is a guess, not a diagnosis!) that it might be either a sporadic schannoma (a benign tumor of the nerve sheath), or a hemangioblastoma in an unusual place. I'm curious whether NIH might have seen one in this position before. I can ask.

I hope everything goes well,
Joyce

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Be sure to share with your doctor that Renee had two hemangioblastoma on nerve roots at L3-5. So it can happen.

I have also sent the question to NIH. If they have handled them before, they may have some hints to share with your doctor.

Best wishes,
Joyce

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I was told at the NIH that VHL was not previously associated, or thought to cause, tumors in the lumbar region. In routine screening, they didn't even check that far down. However, I had VHL tumors at L3-5, and I am not the only one. The NIH told me that they have seen a few now, and they now routinely scan the entire spinal cord. So, while it's certainly not impossible that you have a tumor at L5 that is completely unrelated to VHL (I often have to remind myself that having VHL does not make me immune to every other disease or affliction on the planet, but doesn't that just seem unfair? lol), I think it is much more likely that it is a hemangioblastoma. The first time I had an MRI of my spinal cord, and my hemangioblastomas were found, the doctors here told me that these tumors were not related to my VHL. They are good doctors, but they had not seen a lot of VHL scans, and they made a mistake. I was scheduled for a biopsy. My own research suggested that might be a bad idea (thank you, internet!) and so I got a second opinion. I ended up going to the Mayo Clinic, and to a VHL symposium there, where I discovered the NIH. They accepted me into their spinal cord research, thankfully, and I now see them every six months.

I hope you will consider letting the NIH have a look at your scans. They look at VHL every day, and so I think their opinions are invaluable.

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Dr. Lonser at NIH replied that...

"We have definitely seen L5 hemangioblastomas. I just operated on one last month.

"Would be happy to look at scan, if they like."

If you would like to take him up on this kind offer, please let me know and I'll send you the contact information for his team.

Best wishes,
Joyce

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Joyce,

Thanks again for the help. I have sent an email to one of my Doctors at UCSF. She has been incredibly helpful during this whole situation. She always gets back to me quickly so I will know soon what I need to do, or if they send the scans over for me. I figured there may be a chance Dr. Mummaneni or Dr. McDermott know him or know of him, so maybe they would send the scans straight over. But, if you could send me the contact info that would be great, just in case. Oh, also I think that ultimately my doctor is going to order another scan because he wasn't happy with the lack of cross section images he had for the tumor at L5. There are some, but I guess not enough. Anyhow, thanks again for the help.

Renee,

I had no idea that at some point tumors that far down weren't considered VHL. I have had three down there between L1 and L5 that have required surgery. That was what I had done last in November. I had to have drainage bags running outside my back because it was my third surgery in pretty much the same site. This is just the first one I have had that's on the nerve sheath on what I guess would be the front side(?) of my spine. They would have to go in through my abdomen to get to it. Is that what they had to do for yours? I have had a partial left nephrectomy for RCC, in 2005. As far as pain after surgery goes that one was the worst I've had. My incision was from my side to my belly button and it really hurt. I'm hoping if I have to have this surgery it wont be as bad. I was told back then that horizontal openings are worse than vertical so, maybe it wont be as bad. I already have one weaker leg from the past surgeries and it is very obvious. I have to wear an AFO(ankle foot orthotic) because I have drop foot. Im just hoping things don't get worse. Thanks for sharing your info with me, as you can see above, I am looking into having the doctors at NIH take a look at my scans. Hopefully this will all be resolved shortly. Thanks again, take care. I'll keep you updated.

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contact ucla comprehensive spinal center in santa monica.
dr. duncan q mc bribde and radiologist dr. satoshi tateshima are the guys who recently removed hemangioblastoma mass L1 to C5.
world class! they are very aggressive with this type of tumor. my last neurosurgeon fired me because he was at a lost on how to remove. please do your homework! good luck and bless you.

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