Yet Unanswered Spinal Tumor Questions

Hi all. I'm new here at Inspire as of this very day, but I've been in touch with VHLFA since the discovery of my VHL in 1995. Since that discovery, I've had 3 kidney surgeries ( complete right nephrectomy, followed by 2 partial left nephrectomies). My current issue is a tumor inside my spinal cord in the area of vertebrae C2 & C3 (that's in my neck). That's what I have some questions about.

All my checkups and surgeries have been taking place at the Salt Lake City VA hospital since 1995. My current spinal tumor was found on an MRI dead center inside my spinal cord, at 1 mm in size, about 6 years ago. Since then, it's grown to about 2-3 mm in size but mostly doesn't seem to be growing at all. From what I've read so far in the discussions here & at VHLFA, my doctor seems to have made the right decision in waiting for symptoms to appear before considering surgery.

What I'm still confused about in relation to VHL spinal tumors I'm asking as follows:

1. First of all, has a tumor inside the spinal cord ever been known to stop growing and never require surgery? If not, how long has one been known not to grow?

2. Is a VHL spinal tumor commonly inside the spinal cord or on its surface?

I ask because it seems apparent to me that one that's inside is quite likely to be a more dangerous operation to remove it plus cause more severe paralysis & disabilities plus a longer rehabilitation period.

Every discussion I've read so far on recovering from spinal tumor invasive surgery makes no mention of a tumor's actual position. Thus, if its position, & the surgical after-effects, can indeed vary, I can't develop much of an idea of what I can expect myself from the recoveries I've read about.

Which brings further questions...

3. Is there such a thing as an average expected amount of paralysis & physical rehabilitation period after invasive surgery to remove a spinal tumor that's dead center inside the spinal cord?

4. Since my tumor is in my neck, I presume that surgery could result in paralysis from my neck down. If this is true, does more paralysis commonly increase such things as the chance of some permanent paralysis and the time and extent of physical rehabilitation?

5. My doctor has told me that paralysis does effect one's organs. For me, from the neck down, that means a whole lot of organs. How likely am I to lose one or more organs given my situation?

6. One of the organs below my neck happens to be my heart. How does paralysis from the neck down after surgery effect the heart?

7. Is there any kind of "common" pattern to which organs are most likely to be effected by paralysis and to what extent or in what way?

8. I saw "nerve pain" mentioned as one of the symptoms. What exactly is that? Would that be a fast streak of pain through a restricted segment of the body? Or is it more of a "pins & needles" feeling over an area more or less all at once, rather than a "fast streak of pain"?

I'm sorry if I seem to be "fixated" on this, but all these questions are constantly bouncing around inside my head. And, to me, each one asks something that the other questions don't ask. In fact, I'm surprised that I haven't seen all such questions asked a dozen times already. Maybe they have been and I missed them?

Also, I live alone, pretty much as a hermit and hundreds of miles from the nearest caring relative. So I'm grasping for a better idea of how I'll have to prepare my life when (or if?) surgery ever becomes necessary. Pay rent & all bills for 6 months in advance? Move out & put everything into storage instead? Etc. In other words, I do NOT want to be left in the dark about possibilities & liklihoods.

Thanks, all of you, for any help with my questions. :-)

Nelson

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10 replies. Join the discussion

VHL spinal tumors are sometimes on the outside of the cord, and sometimes inside the cord.

All VHL hemangioblastomas seem to follow a "stuttering" growth pattern -- they grow for a while, then pause at that plateau for a while, then they may grow again. That plateau can last for years. This is one reason why the experts at NIH generally do not rush to do surgery.

There are no general answers to your other questions. Statistics won't be a helpful indicator. What you want is SUCCESS. The best elements in coming through a spinal surgery successfully are:
(1) early diagnosis (which you have)
(2) developing the right team -- find the best vascular neurosurgeon you can find. You don't want a rookie playing with your spinal cord. How many similar surgeries has he done? What were the outcomes?
(3) choosing the right moment -- not too soon, and not too late. Work out a plan with your neurosurgeon.

Don't plan for failure, plan for success. With the right team and the right plan, you should be able to come through this surgery in reasonably good shape. You might need physical therapy, but let's plan for a good outcome.

Have you found the right neurosurgeon yet? If you are not confident that you have, perhaps you need to talk with another candidate for your team.

Other folks here, please add your thoughts and comments for Nelson.

Best wishes,
Joyce

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I had a tumor in my spinal cord between C2 - C3 removed one year ago after watching it for 15 years. The tumor did not grow, rather a cyst developed and occupied the majority of my spinal cord so it posed the danger of cutting off the flow of fluid between my brain and spinal cord and/or pressing on the vital nerves in the cord. I had no symptoms but had to have semi-emergency surgery. We discussed every possible outcome you ask about in your post and was terrified to have the surgery because I was told there was 100% chance I would have a "deficit" after surgery, but they couldn't be sure what function(s) I would lose. I was literally shaking after that appointment and understand your fears. Nevertheless, I am happy to report I came out of surgery with NO deficits or side effects.

I agree with Joyce that statistics cannot be applied in this situation because there are too many variables surrounding spinal tumors. Also, advances in imaging technology have exponentially improved the outcomes of spinal cord surgery in the last few years.

Best of luck and stay positive!

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Thanks bunches, Joyce & jmathison for your replies. I feel much more at ease already. :-)

And Joyce, I don't know who my neurosurgeon would be. Being a vet and unable to afford insurance, I get everything done through the VA. The SLC VA hospital that I've been getting everything done at so far I'm convinced is one of the best VA hospitals in the nation.

My doctor there, however, told me that I'd be sent to a VA hospital in California that would be better for my type of surgery. I have no idea who my surgeon would be, but I assume that I would be sent there because it's a place that specializes in what I would be needing.

And actually, I have yet to recognize any definite symptoms from the spinal tumor. So for all I know, it could be years before surgery is needed. As often as doctors move around within the VA system, whoever's a neurosurgeon at that California VA hospital now could be gone by the time I need one. I'll be asking my doc at SLC more when I go there for my next checkup in 2 months, but I don't think there's much more to do until I start to feel symptoms, true?

As for "planning for success, not failure", I do now feel that success is a good possibility, but I also think that, given my situation, I do also have to consider the real possibility that "success" isn't 100% guarenteed. Afterall, it's not written in stone.

It's probably safe to say that a good 95% of all of you with VHL have supporting family members closeby who can help you during any necessary recovering. I would have to travel over 1,000 miles for such family support. Similarly, one or more of them would have to travel over 1,000 miles for an emergency (with unscheduled vacation time & cost) to move all my belongings out of my rented home or whatever.

In other words, my situation requires that I be realistic and consider what I may have to prepare for, just in case.

And "jay", after reading your VHL history in your personal description, I feel like a "newbie patient" compared to what you have gone through. I admire your strength, along with that of many other "professional VHL patients" who, I'm learning, have gone through much more than I have so far. I've had seven surgeries in about the past 20 years, but only three of them were major.

I have one question for you, "jay"... You said that your tumor was "in my spinal cord". I take that to mean it was inside the cord and not on its surface, but I'd like to confirm that's correct. And as for the cyst, was that also inside the cord, too? Or does that grow around the outside of the cord?

Thanks again, Joyce and "jay" for your replies. May Joyce's "success" rub off on all of us. *hugs Joyce with a silly grin*

Nelson

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Yes, it is only wise to make a plan that includes how you will get the after-care that you need. The VA might be able to arrange for you to stay in a rehab unit following the surgery since you don't have a helper at home. Ask to see if that's possible.

As for more than that, I would still say, cross that bridge when you get to it. I'm one of those people who makes sure her will is up-to-date and there's a set of just-in-case instructions set out before any long distance trip, so I agree that it's good to have a plan in mind, but you don't want to implement anything too elegant before you really need it.

Be well,
Joyce

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Has anyone ever heard of the drug Sutent for use in treating spinal tumors?

I've been researching and reading a great deal concerning the treatment of spinal tumors in patients with VHL. In my search, I came across many articles on the drug Sutent, but nothing directly on point that indicated it worked for those with spinal tumors.

I found where it was commonly used on kidney and stomach cancer patients to shrink tumors. This year, there was a study on people with advanced liver cancer; half of those in the test group had tumors that either stopped growing or spreading when using this drug. Sutent is suppose to slow the growth of tumor-feeding blood vessels and deprive tumor cells of blood and nutrients needed for growth.

Does anyone know if any studies have shown it to work on spinal tumors? I found nothing on that subject...yet.

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Hi!

My son has just had spinal surgery to remove a tumour that was on the spinal chord, with a cyst travelling up and down the chord. The surgery was a success, tumour completely removed and cyst decompressed - he is still recovering as the surgery was just over three weeks ago!

He also has a tumour in the middle of his chord at approx T8 the middle of his spine which is showing signs of growth, we have been told that quite possibly this will stop growing for a time - but ofcourse we are dealing with an unknown - when and for how long?

My son's neurosurgeon specializes in spinal surgery and explained to us that with hemangioblastomas embedded in the spinal chord the surgery can be alot more difficult. With a solid tumour he can part the chord, remove a little, then part the chord further round, remove a little more etc. until all the tumour has been removed. With vascular tumours he can't do that as they need to be removed as a whole otherwise they will bleed and bleed. Ultimately he feels that it would be unwise to surgically remove the tumour embedded in my son's spinal chord because he is likely to destroy the chord at that point meaning paralysis from the waist down, mobility, bowel and bladder.

We are looking at alternatives at the moment, namely SRS, but are being extremely cautious about it.

Just thought I would share our experiences.

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Dear Nelson; how much ahead of the game are you to have early diagnosis!!!!!! The first spinal tumor I had was found early, taken care of, and things went well - that doesn't mean I didn't have deficits! My surgeon (whom I liked and trsted very much) was surptrised at the losses I had - which were in my legs, not arms. I did regain pretty good use but my balance was never the same again. Then, 10 years later, I developed another tumor in the same area - but due to life changes, I missed getting an M.R.I. that year, and when I DID get one, the tumor was discovered by a new surgeon in my new location, and because of its size he would not operate. He didn't think an operation would be "successful" and tjhe tumor didn't seem to bve causing any symptoms, so he sent me home. I was glad because I didn't like him or trust him anyway - but I shoud have looked for a new surgeon. A year and 1/2 later, he told me it had grown (from C3 - C7) and I had developed symptoms by then tool - but he still wouldn't operate, and said I wasn't ready. I think he was afraid to tackle it because it would go badly (and he didn't want that to happen to his reputation). I finally found a news surgeon (in a differen5t city) and he took me on,, booking a new M.R.I. My symptoms developed so aggressively I knew something had to be done before that appt. I was hoospitalized suddenly June 30 of last year, only a few hours prior to my bladder not functioning on its own. My new surgeon was reluctant to operate too because it was "too big an operatiomn" for him. But he pleaded my case with his colleagues and a different surgeon accepted me, saying, "If we don't do something, she'll just end up parallyzed anyway". He fit me into an already full schedule, and operated July 19. The next day, his Resdent came to tell me I would walk again, probably with a cane. I was fed everyday since I couldn't use my arms or sit up for awhile. I was moved to a REHAB hospital Aug 16. They projected (after assessment) that I would be there until Sept 25 - but I pushed to leave Sept 20 - it was ludicrous to spend another idle weekend in there for 1 more hour and 1/2 of therapy! I now live on my own with Home Care coming for an hour every morning. I'v4e been buying clothes and other things to help me live by myself. I can't do any xcooking, so I rip open frozen entrees & microwave. I wqalkm around the house with no aids but I feel clunky like Frankenstein's monster. I drive - but just around here, out in the country - I expect yto be quite a hermit when winter comes. As you can tell, my typing is sloppy, and I can't write - but I make do. I can't afford to waste time being bitter or whining or saying "what if" and regretting decisions or lacks thereof. I'm darned frustrated, and do a lot of swearing around here - but I have to keep telling myself that I'm pretty darned lucky considering what COULD have happened to me! That is not to deny the seriousness of how I struggle on a daily basis, and I HATE it when people put down my trials by telling me I'm not as bad off as some people. The truth is - if you asrd "some people", they wouldn't want to be me either! We each have our own burdens, and we have to "play the cards we're dealt". I live by the philosophy, "When life hands you a bunch of lemons, make lemonade!" When I reach the end of my life, I want to be able to say that I did the best I could with what I got.

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I had surgery at the c6 level, the tumor being inside the spinal cord. I waited too long before I had surgery and I suffered the consequences. My tumor was so big, my surgeon measured it from c2-c7. After my surgery, I spent 7 weeks in rehab.
The thing about paralysis is that it is completely unpredictable. You could come out perfectly fine, have a problem with just a hand or arm, or be affected from the neck down. In my case, I was affected from the neck down, but got progressively better after several months. Though I have what’s called brown sequard syndrome, in which I have nerve pain and strange sensations on my right (functional) side and paralyzation on my left side.
While you shouldn’t rush into surgery (especially if the tumor is hugging toward the front of your body), you shouldn’t wait too long after the symptoms become too annoying. (i.e. numbness, tingling or trouble with gait or dexterity.)
To answer your many questions, I found a website that explains what happens in a spinal cord injury—though I doubt you’ll experience symptoms as severe as a ‘complete’ injury.
http://www.healthsystem.virginia.edu/UVAHealth/adult_pmr/spcrd.cfm
And in regards to nerve pain, it can feel as mild as the sensation you get when your foot falls asleep and the wakes up, or in my case, my pain feels like knives, but only in my right wrist area.
I’ve had two operations in the last two years to remove tumors and cysts, the second one turned out just fine. And if it helps you to know, those 2 tumors and the 4 more my docs are watching are all inside the spinal cord.

Just don’t worry too much and keep watching the tumor growth.

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Thanks Myway, graciewt and dani for your much appreciated further enlightenment on how things could go.

Hugs to you all.

And, yes, gracie, I think my monitoring is staying pretty well on top of it. However, whether my tumor is "solid" or "vascular", I don't know. Well, I go for my 4-day checkup on Sept. 29, so I'll be asking about that then.

Nelson

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Hi, Nelson. All hemangioblastomas are vascular tumors. Gracie's doctor was explaining that hemangioblastomas (vascular tumors) are a more difficult operation for the surgeon. Picture the difference between removing a golf ball and removing a mass of worms. Most brain and spinal tumors are solid -- but not hemangioblastomas.

When the surgeon removes a hard tumor, it's a relatively straightforward dissection (like removing a golf ball). But when removing a hemangioblastoma, they have to figure out how the blood vessels are running and tie off the blood supply to the tumor without tying off the blood supply to the healthy tissue.

It's quite complicated -- which is why you need an excellent vascular neurosurgeon.

Best wishes,
Joyce

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