I have lived with VHL for many years. I lost my left eye. I had extreme pain in that eye nut I am not sure I could say it was directly related to the VHL angiomas in the eye or the side eye complications that they caused. I also had pain after a kidney surgery -- much of this was due to the way things were healing and went away over time. I know everyone is different though.

One thing that I do know.... Pain is never imagined, it is very real to the patient -- what ever the cause. I went through literally hell a few years ago feeling pain in my back and legs. I was told in an indirect way by a couple of doctors that the pain was in my head. Unfortunately I believed it for a while. I later found out that I had a tumor in the spinal cord with an associated cyst. This was diagnosed by a Neurologist who realized that VHL could manifest itself this way and sent me for an MRI. I guess my point is -- never let any one say the pain is not real. Even if it is panic related, it still hurts and I am sure there are things that can be done to assist in that.

As printed in the VHL Family Forum 8:3, September 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory