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AVM Survivors Network

Radiosurgery

After getting diagnosed with a brain AVM a few days before Christmas last year, found out today my 15 year old daughter has been accepted for radiosurgery in Sheffield. We have an appointment early September with the consultant with the procedure in October.

I had Gamma Knife back in November 2016, and the staff in Winnipeg - Canada, made it a very good experience. The bolting of the frame was a little uncomfortable but all in all not bad. At 15 it may be a little scarier than a grizzled older guy like me, but love and support make the difference. Any questions I may be able to answer, fire away. I found out in March of this year following an angio that it was successful and I’m AVM free. The waiting is challenging, but we’re here to lean on for you and your daughter. I have a 15 year old daughter as well so my heart goes out to you as you go through this process…in my case it was far easier being me than one of my children. Take Care, John.

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Thanks for the reply John. It’s great news that you are now AVM free. Congratulations. My daughter will probably have a general anaesthetic so at least she won’t have to be aware of the head brace. It has been over a year of waiting health wise so I am glad that we are finally getting somewhere. I still have unanswered questions. I have only met the neurologist once and I find it difficult to speak to her on the phone as she is foreign so I can’t understand everything that she says. I know that the AVM is on the left side of the splenium but I don’t know how deep it is or what grade. I will ask all this when I go to Sheffield

You are in good hands, the best. Mr Andreas Kemeny, Mr David Forster & Mr Dias (if still @ the Royal Hallamshire Hospital) will take good care of you. I had such a large AVM (left posterior parietal lobe) they initially said it cannot be treated with Stereotactic Radiosurgery. Unfortunately it was too late to arrest the chronic neuropathic facial pain I suffer from to this day. Painless procedure. Good luck. Procedure will take some time to work as it’s radiation. Good results when classic neurosurgery cannot deliver the goods. I was treated in 1996/1997.

Just say you are finding the accent difficult. Might be Swedish where some of these technical breakthroughs were made. I remember my neurosurgeon sending my scans to Sweden for a second opinion.

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Hi wish your daughter all the best. I had my GK 6 years ago. I am built small so I will say make sure they support her neck when she is attached to the machine when they do the GK. The head frame weighs about 11 pounds I believe. It gets heavy and it’s all a lot in one day and I got to think especially when you’re so young. The lack of supporting my neck caused issues to where I have headaches all the time. My AVM is gone!!! If you have any questions or concerns feel free to inbox me. My GK was performed in the USA:
Prayers for your sweet girl!!!
Niyani

Kirsty,

Your daughter is being treated at the right place. I had my SRS at Sheffield a few weeks ago. The team are incredibly friendly and most importantly have more experience than any other center in the U.K., having treated over 7,000 AVMs. My neurosurgeon at Kings (London) recommended I was treated in Sheffield because I have a difficult AVM in a sensitive area. One thing I would say is to be prepared for some headaches, general malaise and discomfort for few weeks after SRS. The literature tends to say a couple of days but my experience was a few weeks of extreme tiredness, some nausea, jaw ache and malaise. I would say this was a combination of the frame, the stress of the last few months but also I think the radiation itself. It’s worth expecting this so that you don’t worry if she feels a little under the weather for a while. Obviously you should contact Sheffield if concerned which I did, and they were very reassuring.
All the best,
Jonny

Thank you everyone for the replies. All the best to you all.
Kirsty