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. :-)