Has anyone with VM had surgery since their diagnosis?

I have kidney cancer and have to have a partial nephrectomy soon. I am concerned about how this will affect my VM which up to this point has been well controlled with meds for the past year having previously struggled for eleven years untreated. I really, really do not want to go backwards so any advice on how to cope with surgery would be very welcome.

Oh Margaret sorry to hear! That’s especially tough after all the progress you’ve made. Hope it goes well. Stay positive!

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Praying for you Margaret.


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Margaret, sorry to hear. Stay strong. With the meds you should be able to keep a lid on it.

That is the bit that is worrying me, even more than the cancer!!! I hope you are right, fingers crossed. Thank you for your encouraging words.

i hope the surgery goes well. Don’t worry about it triggering the MAV again. hopefully it will be ok. make sure you tell your surgeon and anaesthetist everything you are taking for MAV, meds and supplements etc! good luck.

Thank you, will do, I hope they let me keep taking them.

I hope it goes well for you… May I ask what meds you take?

Thank you. I take 25mg topiramate in two split doses, 12.5mg am and 12.5mg pm together with 10mg nortriptyline pm.

I thought I would post an update to help others facing surgery. The op took twice as long as it should and because I cannot tolerate morphine it took two hours for me to come round as the anaesthetist was worried about pain relief. Apparently they could not get my body temperature above 35 degrees either. Anyway I came through it, am home, pain free pretty quickly and best of all VM IS STILL UNDER CONTROL!!! I was allowed to continue with topiramate and nortriptyline as normal, kept well hydrated and even though I did not eat for a couple of days managed to stay ok. My BP was very very low even for me at 86/43 which gave them a fright but they think that is just my hypersensitivity to drugs.

I now have the worst battle as the gastroenterologist who is supposed to be sorting out my gastroparesis wants me to stop topiramate as she has no idea why I am on it or what VM actually is!!! I found this out two days post op for cancer which was quite enough to deal with. Anyway I summoned courage and energy from somewhere and spoke to her secretary to explain exactly what I was dealing with prior to topiramate and that if it was stopped that would be the end of me. She wanted to stop it because she said it was causing my fainting episodes. No, that is down to SVTs which no one takes seriously enough. I now have to do battle with my GP so he keeps prescribing it for me.

We have to be so blooming tough with this disease.


Well done! When will you know if it was a complete success? Good luck wrt the drugs!

Thank you James. I get the pathology results in six weeks followed by a PET scan I think so the journey has just begun really.

You’ll be fine!

Amazing that use of these drugs is not common knowledge amongst medics. Let us know how you get on on that front!

I wrote to my GP just to clarify things for him as he doesn’t have a clue about VM. I have a phone call booked with him on June 4th but am hoping my letter will prompt him to call me sooner.

Cancer is a doddle in comparison with VM!!! They find it on a scan eventually, whip it out etc but are geared up with a lot of research and knowledge. VM of course is a whole different ballgame as so few medics know the first thing about it and dismiss it as a minor headache to be controlled by paracetamol and mind over matter. They must rename VM. I have watched far too many medics look at me with that face which says what the heck are you making a fuss about


How are you getting on post-surgery Margaret?

Hi James. I now have a different kind of tumour on my other kidney!!! And the kidney that was operated on has developed cysts. My autoimmune disease has ramped up and my liver has been affected as a result so all in all not so great. But VM is doing well so I can cope with all the rest. If I didn’t have the meds to control VM I think I would have curled up in a little ball by now, VM being my biggest challenge by far. Thank you for asking.

Gosh, that’s absolutely crazy ridiculous bad luck … so more surgery?

Will the cysts calm down over time? Was that always a risk with the surgery?

Very glad to hear you’ve calmed the VM beast!!

More surgery is on the cards when the little blighter grows, but that sends me into dialysis territory, yuck!!! Not looking forward to that at all. As for the cysts, they are a consequence of sjogrens syndrome, the autoimmune disease which attacks every little bit of you in the end. I really don’t worry about any of it unless it stops me playing my cello or walking my dog which VM did temporarily, which is why it has been the disease that has to be kept under control. Without those two things in my life I would be very unhappy indeed, with them I can cope with everything so VM just has to b off!!!

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Oh gosh, Margaret, that’s so rubbish. I hope they can find a more conservative way of dealing with that.

Well you are an example of incredible strength. What you’ve had to deal with!!

The very best of luck with your treatment for these things.

Thank you James.

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