Hello everyone

Thanks for accepting me. I have only recently been told I have AVM ( 2nd Nov 16). I am 46 years old and self employed after recently finishing my time in the Army.
I initially went to the docs with pain and swollen abdominals. I kept going back as the pain was still there and the indigestion tablets did nothing. Eventually I was sent for a CT scan. This showed nothing in my abs but I was informed that there were two ‘masses’ on my right lung. You can imagine what I thought…
After further scans it revealed that it was AVM. Something rare and interesting as the consultant said. I must admit I didnt take much in as I was just so glad I didnt have lung cancer.
That’s about as much as I know at the moment. I believe I am waiting for a referral to Hammersmith Hospital for a consultation with a interventional radiographer!!!
The pain in my abdominals continues to get worse and at times i just get so fed up, it was really great to find this group and be able to speak openly about it.
My hubby is really supportive, but much like myself doesnt know much about the condition. Perhaps we are all RARE and INTERESTING as my consultant said. Hope you all have a good day and am looking forward to ‘meeting/talking’ to you.

you will find a lot of good information and support on this site.

Welcome MandyW you definately have come to the right place to get some support and hear the stories of others who have gone or going through what your going through… God bless!

Thank you Mike and Adrian, There is so much support on this site you’re right. I don’t think I realised the enormity of what I had been told. It’s quite scary!
I received an appointment for an endoscopy to be done on Tuesday so they can have a look whats going on in my gastro tract. Lets hope they can figure it out.
Thanks again for your support, it really is appreciated.

Welcome to our group! First, let’s thank God you don’t have Cancer. While having an AVM is no picnic, it’s not cancer. There are treatments available to help you in this journey. My AVM was in my brain, so I cannot speak to an abdominal AVM. I can speak to the fear and uncertainty that you must feel right now. Know that this group will gladly support and encourage you on your journey to eradication. God Bless.

Thanks for the support Sharon. I have an endoscopy tomorrow to see if i have AVM of the abdominals. Still awaiting a specialist appointment for the two AVMs in my lung. Youre quite right the fear and uncertainty is sometimes overwhelming. but with support from here and gaining an understanding is helping. Everyone seems so brave and with it!!! Thank you again. Mandy

No problem, it was my pleasure… God bless!

Glad no lung cancer. I am not familiar with that hospital; but that does not mean there is a problem. You want to be very specific for your pulmonary (lung) sites. Thoracic might be another word to search here, pubmed and birthmark.org. All the best. Keep us in the loop of your journey, ok?

I have some medical background so I hope you don’t mind a small correction, so you can be precise in your speech. Vascular Radiologipher sounds like a tech highly trained but not a physician. Interventional Radiologist is the MD who performs the procedure. Where are you located?

You make me feel lucky. Mine is only facial, and I’m in excellent health. I am very interested in your case, so keep us updated.

Hi again everyone,

So, i have had my endoscopy, that showed I had a hernia, so that’s being sorted with meds and small changes in diet. I went back to the docs to check on my referral to Hammersmith hospital for the AVMs, only to find no referral had been done!!! I am glad to say though on Saturday a letter arrived confirming that I now have been referred to Drs James Jackson and Claire Shovlin. Anyone got any experience of Hammersmith and these Doctors? Im so glad but nervous at the same time, this site is such a help, you guys are great. Take it easy and have a good day.