I was just wondering how different people's spinal tumors or cysts first began to present themselves. I've been having some neck and lower back pain, but don't want to jump to any conclusions. I'm also noticing a little bit of swelling or raised area next to the spine on the neck. Could anyone offer a quick explanation of what they first noticed with spinal manifestations of VHL?
I appreciate your concerns. I had a C4-6 tumor removed 19 years ago, and a T6-8 tumor removed last summer. My cervical tumor took up almost 2/3 of my spinal cord, according to my neurosurgeon, but I had almost no symptoms. I had some numbness and tingling in my hands when I rode my bike, but that was all. I was having no symptoms with my thoracic spinal tumor either.
However, about ten years ago, I had incredible pain in my neck and was concerned it might be a tumor. It turned out to be a herniated disc. About four years ago, I also had daily lumbar pain. This also turned out to be related to degenerative issues with my muscles and bones, not tumors.
I am not an expert, and everyone presents differently, but in my case, tumors presented with either no symptoms, or a random numbness and tingling. My experience of "pain," on the other hand, was due to other causes. Good luck and I hope all turns out well.
Thanks for the information. I am going to see my doctor on Tuesday to see what he thinks. I'm just trying no to get all worked up over nothing. It's very hard with this disease, though. The only thing I've had treated yet are retinal tumors. I have brain and pancreatic tumors as well, but no symptoms yet. I guess everyone is really so different that it's gonna be hard to judge my own situation by what others have experienced. But I do appreciate your reply and I hope you are doing well!
This is a good example of why we recommend an MRI every 1-2 years. While symptoms can tell us that it's time to pay attention, they do not tell us just what is causing the symptoms! The real picture is in the MRI.
If your doctor hesitates to do that MRI, push back (politely) and use this discussion as evidence for the need for an MRI to rule a VHL tumor in or out.
Best wishes,
Joyce
Thanks you Joyce for your reply. I've actually had 2 MRI's inthe last year, one in Nov and one in June. This seems to be a new development. But I'm sure my doctor will order and MRI. He's very on top of things. Take care~
Super! Glad to hear it.
Best wishes,
Joyce
when my spine tumor played up i found my arms hurt all time and was very heavy for me to move and i had a limp on one side when i walked and nerve pain like shocks , but i still get them now , i had my tumor between shoulder blade dont know what area that is lol , but i have a few spine tumors , and i get pain and things goin on but they not big enough to take out i been told
My main symptom is tension around the shoulders and neck area. Lots of burning and knotting. I have an area to the left of my spine on my neck that is swollen. Have you ever had swelling at the tumor site? I've been an taking anti-inflamatory for 8 days and the swelling is not gone. I"m due to see the doc again soon so we'll see what he says. Thanks for your reply! I hope your tumors stay small for a long time!
hi yes i had swellin, i had to have tablets for about 4 days befor the op because they said they had to get it down first not that i noticed as it was at back of me but it was puffed up , are you sure its not tension yr sufferin do u know theres a tumor there its very difficute with these tumors cause you never know if its vhl playin up or just genral life strians ,
That's what I'm trying to figure out right now. If it's maybe just from working too much. I'm seeing the doc next week so I'll let you know how it all turns out. Thanks for chatting with me!
Add to the discussion