Hello, i m new here, but i am desperate, my childhood friend, she is now aged 25 is suffering from a really rare AVM! She needs to be operated, but no one did accept to do it! Her life depends on it! She tried diffrent countries with no luck as doctors told her is to risky and she can die, she can also die any second without the operation! We need the best surgiant we can find… but i don t know were to find it… no one deserve to die despite their age, but this wonderfull girl didn’t even got a chance to feel the life. Any advice would be apreciated. Thank you!
Hi Lorena, and welcome. AVMs are really complex things, regardless of where in the body they are located. There is a variety of options that are used to deal with these. Surgery is certainly one, but there is also embolization, and gamma knife if located in the brain. Another option is to monitor, particularly if the risk of treatment is greater than the risk of not taking action. I had gamma knife for mine, and I know someone who has one in the same brain area, left temporal, and her neurosurgeon recommended the monitor route. There is often a variety of opinions from different doctors on best course so further opinions may be a route, but does appear there has been some. Take Care, John
Hi thank you for your response, the doctors says that she needs embolization and many of them, but in the country she is is not enough equipment for them to do that kind of procedure as the Avm is basically pressing on a huge part of the bain, they say it very risky as she can lose the eye, motion and talking sighs, she is waiting for an answer from a doctor in india, but beacause i am living in uk i hoped that maybe i can get her here to help her.
Do you know about where her AVM is and how big? Sometimes certain treatments are unsuitable, if the AVM is very deep, or if it is close to key parts of the brain. Sometimes, the gamma knife radiation can be used to get at the difficult to reach parts but it also depends on the size of the AVM.
We do have other members here who have inoperable AVMs so if she really isn’t able to have it operated on, there are others here who have the same worries.
Tell us what you know.
Very best wishes,
I would certainly think that there is good expertise in the UK to deal with complex AVMs.
They say it can be done, but they won’t do it because is so rare the gravity she have it, also say that the avm needs to be removed for her to be able to live, she already suffers from paralysis in the right sidebof the body , she cant work , she is not allowed to make any effort as it can brake at any point now.
Yes that is what i belive as well, i know that they are many good neurosurgeons in uk, and also having good equipment, were she lives they are great doctors but the equipment is old and outdated, and is to risky
Is 3.5 cm big
Ok. 3.5cm is “medium” on the Spetzler Martin grading but it may be it is in an “eloquent” area of her brain and/or has deep venous drainage (see the link above) which would be good reasons for it being inoperable / very difficult.
It does sound like getting a second opinion would be a good idea. It is fair to say that if she is in danger from her AVM, as you describe, that flying could be dangerous for her, or it might be ok. But you can get surgical second opinions from a number of US neurology institutes without the need to actually travel there. Doing that is affordable but will only give a high-level assessment, I think. Ill find some links for those as well.
Hi Lorena, if you are looking for a recommendation here in the UK I would absolutely recommend the neuro-radiologist Dr Prem Rangi. He works privately and also for the NHS at the National Hospital of Neurology and Neurosurgery at Queen Square, London.
I also had a very complex, rare and agressive 4cm AVM deeply positioned in my vision centre which was a grade 4. There were two UK wide national meetings to discuss my case and Dr Prem Rangi was the only one to offer to take on preforming the complex embolisation procedure I needed. All specialists agreed embolisation was the best route and the only treatment I was offered. They believed my AVM was at considerably high risk of rupture and couldn’t wait for gamma knife.
This procedure due to the position of my AVM held risks, and as a result I have lost much of my right visual field in both eyes following the surgery. However I know without the procedure, I would likely have suffered a major rupture very soon and the AVM was causing gradual sight loss already. So I have no regrets as this procedure has saved my life. I still must have another treatment for my now much lower risk 1cm AVM but things are less urgent as before.
From looking at the site I have linked, it appears he can give opinions for scans too.
Best of wishes,
Look up Dr. Anil Nanda. He was at UNIVERSITY neurosurgery but he will be leaving for Rutgers in June. He just did my son’s craniotomy.
I hope y’all find a surgeon that can help.
Hello and welcome, I commend your efforts, she I lucky to have you as a friend, some AVM"s are non operable, for various reasons, try barrows neurological institute in phoenix AZ, world renowned and she can do phone consultation, best of luck,
If those docs won’t do it, try Dr. Awad at the University of Chicago Hospital. He does nothing but brain surgeries.
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I heard Sheffield Hospital is one of the best in the world and it is in the U.K.
Thank you a lot
In regards to sheffield - I know sheffield is best for gamma knife in the UK for sure however I haven’t heard anything about their experience in regards to embolization and craniotomy though?