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heidi 04-02-2012 08:44 PM

new here, Vm in stomach and diaphragm muscles
I am hoping to find others here with VM to talk to. I have a VM in my abdominal area right side, and it causes me severe pain. I can not work full time, and now have a half time job. Soon I have to quit work completely because of the pain. I have had two sclerotherapy treatments (not with alcohol), and the doctors told me that I donīt need more. But my pain has not gone away, and the doctors tell me that they have not had a patient with as much pain as me, and it seems like they donīt believe me. So I ask all of you who have VM do you have pain? How is your work life? and is there anyone here with a VM in the abdomen area, it seems to be very rare, I canīt find anything about it on the internet. Hope to hear from someone.

Greetings H.

heidi 04-02-2012 08:54 PM

I would like to add, that I feel a little lost. As there is only one doctor here in Denmark who performs sclerotheraphy, so I feel like she has my life (and my pains) in her hands. If she canīt do anything about it, then no one here in Denmark can, then I am left alone with this extreme pain? What to do then? And what if she tells my social worker who has my case that I can work just fine, even if I am almost paralyzed in pain? It has happened before, and I fear it will happen again, and then I wonīt get any financial support from the "danish social system" if I canīt work because of this pain. I have already been sick almost a year now, and in Denmark you are only supported financially the first year when you get sick, and can not work full time. I feel like I have a right to a second doctor opinion, but how can I get that when there is only one doctor here in Denmark who performs sclerotherapy? I am lost. Hope anyone can help me.

dancermom 07-08-2012 05:29 PM

European AVM Survivors
Hi, I suggest you join -- there is a sub-group there for Scandinavian AVM survivors where you can get some practical support for dealing with your health care system. I am sorry your doctors have not understood the pain you are experiencing; scientific articles often fail to convey just how painful VMs can be. Patients are the real authority on that subject, as you know too well. Best wishes!

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