I have recently been diagnosed with VHL. I have had two surgeries on my spine this year to remove hemangioblastomas. I still have three left on the spine that are assymptomatic and won't be removed unless and until they present problems. I'd like to hear from people in similar situations with still having tumors. I also had a stroke 2 years ago and am wondering if anyone else has had a stroke while being diagnosed with VHL. Intially, they blamed it on the birth control pill (I was 37 at the time), but I can't help but wonder if there is some relationship with VHL. I was relatively healthy at the time of my stroke and the stroke has left me unable to work full time. Luckily, after being at a rehab hospital for a month, I did regain a good bit of what I lost, but not everything. Looking forward to hearing from others.
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Stroke and VHL
- By Michele40
- Posted October 6, 2009 at 9:03 am · 1 reply
- In Finding emotional support
- Shared with the public
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1 reply
- By joyceg98
- Posted October 23, 2009 at 1:09 pm
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Stroke = bleeding in the brain.
It is possible that a stroke might be associated with VHL, but it is also possible that it might be for any of the other reasons strokes occur in the general population.
The most common cause of stroke in VHL is pheochromocytoma, that tumor of the adrenal gland, which causes high blood pressure and can cause damage to the heart, the blood vessels, and even stroke. I would strongly suggest this be investigated, since if you still have an active pheo you are still at increased risk for cardiovascular damage.
Interestingly, the brain tumors of VHL usually do not spontaneously bleed and cause stroke. It is really (thankfully) quite rare for one of these to cause a stroke. Nonetheless this is another area that bears investigation.
Best wishes,
Joyce
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