Hello it’s ram 25 M from india ,I recently got to know that my avm is grade 4 and doctors have gave it up anyone please help me with the alternative for my treatment
Thank you
Hi Ram!
Welcome to avmsurvivors though I’m sorry you are in this state. It is good to meet you!
Tell us a bit more about your AVM, other than it being grade 4. From my understanding, being grade 4 doesn’t always stop treatment from being a good idea but it is more often the location of your AVM or possibly the confidence / experience of your surgeon that is meaning that having an operation is not recommended.
One of the things you may wish to do is to get your medical records and make an application to one of the major neurosurgery institutions in the USA to get a remote second opinion. These remote second opinion programmes are very affordable – at around $200 – so could give you a rather independent view from a first class facility as to whether they concur with your doctor, or not.
If treatment elsewhere is indicated, I have to say that treatment in the USA is hugely expensive but it may be that armed with the information, you can find an appropriate centre nearer to home. Or, it is just as possible that the second opinion says that treatment is not recommended. It is true to say that a number of us here have an AVM in such a core, critical place that surgery isn’t recommended other than where it is immediately necessary to save your life: serious side effects would be expected from surgery in some places and it is a matter of only in the gravest danger that such a surgery would be undertaken.
So, tell us a bit more about what you know and I hope we can help.
Very best wishes,
Richard
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Hello my avm is located deep in the basalgangila in the right thalamus doctor recommended that there’s a lot of risk of surgery so they said me to accept the fact and live with this fact
I’m still 25 and suddenly I’m getting to know that anything might happen to mé at any movement
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Ram,
That does explain the situation very much. That deep location and the risk of very real damage to your basic functions is the same reason why others have been given a similar recommendation.
You could still contact the remote second opinion programmes of the US institutions, or seek a second opinion from any good neurosurgery hospital in India but I do think it quite likely you’ll get a similar response.
You are among friends, however.
Have a read through some of the brain stem and cerebellum category. I’m sure you will find some people there in a similar circumstance, though I do feel that over time more doctors are daring to operate in this area. Even if, aged 20-something, an operation isn’t recommended, it could be that techniques have improved in future that may allow a safe operation to be done when you’re 40. Now is not a time to give in.
I hope some of those who haven’t had an operation see your post and are able to offer their view on their situation. You’re not alone.
Very best wishes,
Richard
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My AVM is in the right thalamus grade 3 2.5 cm. They are scheduled to do gamma knife on mine in September. I was told when I was diagnosed, that if they did surgery I would likely be paralyzed on my left side most likely , possibly worse and decided on gamma knife. I don’t know about a grade 4 if gamma knife is an option if available.
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@Rams Hello and welcome to the group so glad you found it. My story started out a bit different. I actually had a CVST Stroke (5 blood clots in my brain and had a massive stroke in 2011 ) one of the areas that got damaged was my basal ganglia and my thalamus - I was 43 - I went into a coma- when I did wake up I was paralyzed on my left side and took me a few months to get my movement back. Then about 6-7 months after my stroke I had developed my avm which is a DAVF on my left side.
I am treated at Stanford.
Like others have said to get another opinion - Here in the USA - Barrow in Arizona is the considered the best and their dr is Dr Michael Lawton they do remote consults and the consults are not expensive.
There was some one on here I think last week talking about a dr in Germany who is really good .
My DAVF is now in a waiting state since they think any more work on it may cause me to get paralyzed again.
Hugs
Angela
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