Hi my name is Debbie McLean, I’m 58 years old and was diagnosed in 2009. Before that I had a right hemicolectomy, was sent to neurologist, gastroenteritis, gynecologist, etc… even psychologists. Finally my family physician discovered my AVM when he did a vaginal/rectal exam, he felt the pulsation from my bladder. Since then, I have lost count of the surgeries. I have some nerve damage in my right leg and bladder. Several years ago I lost complete bladder control due to nerve damage. They placed an internal bladder stimulated. Last year, I slammed on my brakes to avoid a wreck, it ruptured a large artery and filled my pelvis quickly. It took two surgeries to fix it and the AVM became active again. My AVM is in my pelvis and it take very little to cause problems. I named my AVM Harvey, sounds weird but it help me deal.
Thank you for accepting me. I never knew this group existed. I’m of the only one with this.
Hello and welcome Debbie, so glad you found us, O no you are not alone!! We are all here for each other, I am coming up on 28 yrs post surgery, (left cranial) and recently found this site, yes it is a God send, POSITIVE!! BE STRONG AND CARRY ON, Take care
Debbie,
Welcome. It sounds like Harvey is giving you a tough time. I think it’s a great name… reminds me of a James Stewart film!
You are undoubtedly not alone and we hope you can share and read and feel part of a diverse family, set all around the world. Having an AVM is quite rare, so it’s important that we can gather here to support each other.
I did a bit of information gathering the other day and created a pelvic and uterine AVM group because there seemed to be a number of topics in that space that were perhaps lost in the General discussion so I hope some of that information may be useful.
Very best wishes
Richard
Hi Debbie. Welcome to the group! I read your post with interest because I was unfamiliar with AVM’s in the pelvis or bladder. I am slowly realizing that AVM’s can be anywhere in the body. My 2014 AVM was in my brain/Cerebellum and it affected my walking, balance, coordination and short term memory. Right now, I am doing great! Yes, I have a few deficits, but I’m here and I’m alive! By the way, I named my AVM “MONSTER”, and I have kicked Monster’s ass thus far. Stay positive; pray and be patient. All the best to you.
Sharon D.
I have an AVM in my left occipital lobe. Have gone through major embolusation as I also had a AVF which was attached to the lining of my brain! Lost partial vision after approx 6 months and gave had another MRI scan where it was discover that there is swelling of my brain around the area that the gamma knife was used. Also some permanent damage to some of the brain cells. Decided to stop driving as of the sight problems. The thing I wanted to say is that I also named my AVM - “my little alien”.
Hope you manage to get sorted out. It’s a very long journey isn’t it.
Good luck
Since my first post I have had another 3 surgeries. Still hanging in there.
Be strong Debbie, we are all pulling for you!! Keep us posted, bless you
Debbie,
Blimey! Good for you: keep hanging on!
Richard