Hello all. We’re just starting our journey and I’d love to hear input and thoughts. We’re in a major city with access to good care, but I’ve personally had other serious health issues and have found community input sometimes more clarifying that than of doctors and statistics alone.
My 8 year-old daughter had a hemorrhage this week and after MRI and angiogram has been diagnosed with a SM grade 4 or a Supp-SM (Lawton Young) Grade 6.
The AVM is 4x4x3 cm, diffuse with deep supply and deep and superficial drainage. It takes up about 70% of her cerebral left hemisphere. There are two aneurysms present.
At this time we are looking to glue the aneurysms and determine if it is operable. We’re told that it’s too large for gammaknife.
My general questions are:
What kind of treatment we should be looking into beyond conventional surgery? Should we dig deeper on gammaknife regardless of the initial opinion?
I read one case of a woman using Proton Beam Therapy, does anyone have experience with this?
Any suggestions related to therapy/recovery post surgery?
We were told to look for an endovacular neurosurgeon, or an interventional radiologist??
Prayers for you mommy. My 9yo son had his Gamma knife last Feb 4. And for MRI this coming August. I believe as our doctor says, some patients have repeat gammaknife especially if the AVM is big. Our son is not a candidate for surgery because the location of the AVM is very deep. And embolization is risky for him.
I know this is difficult journey for us parents better to discuss options, and yes better to have endovascusurgeon, as we did also. He is the one who suggested GammaKnife.
Hi. Yes, these are the specialists within neurosurgery who would do the glueing, a catheter embolization procedure. Given the description you’ve given (especially the deep connections etc) then endovascular treatment seems like the most likely for success (to me, as a patient and an observer, I’m no doctor).
Your daughter’s case sounds most difficult and sounds to me like something that there will be limits to as to what will be appropriate to treat.
Definitely take multiple opinions into account.
While you say you’re in a major city, I’d say get an opinion from one of the major neurosurgery practices in the US. As patients (and especially as parents) we want a fix, but when the doctors are saying she has a complex situation, it is worth getting the very best opinions as to the route to take or not take.
Your case sounds similar to ours. Deep brain and surgery not an option for our 20 year old son. Embolization was done in hospital to stop the bleed. We just recently completed our 2nd Gamma Knife surgery. Our son is doing well. We are waiting to see how the treatments work. I do feel better that we are done with GK. I feel like every day he has a chance to get better. I know what you are feeling as a parent. This is a difficult journey with your child. I would encourage you to use whatever resources that are available to help you through this. Many on this board support you and know what you are going through. I will remember you in my thoughts and prayers.
I am so sorry that you are going through this. My 11 year old son had an AVM rupture in January and we just recently had a craniotomy to remove the AVM at the end of the March. During the whole process, our main contact was the pediatric neurosurgeon, though they coordinated with interventional radiology when needed as there have been many CT scans, MRIs, angiograms, etc. My son’s AVM was small, so we did not need embolization before surgery, but from what I understand, in most cases an embolization is done prior to surgery to make it safer. I’ve also read that embolization can be used to shrink the AVM so that it can be removed down the road. Also, after the initial rupture, given that he was stable and the rupture stopped bleeding on it’s own they did not want to do any surgery immediately so that the brain could heal from the rupture and the blood could be reabsorbed. After a one week stay in the hospital after rupture, he was at an inpatient rehabilitation center for 4 weeks for PT, OT and Speech Therapy due to the deficits caused by the rupture (left hemiparesis). Inpatient rehab was amazing and helped him recover very quickly. He still has some left sided weakness, but is able to walk with a brace and is doing outpatient PT and OT to further advance his recovery. (His left foot is having a hard time getting back online.) He went back to school immediately after rehab and then took a week off for the craniotomy and was back to school.
I agree with Richard that getting a second opinion is a good idea, especially with an AVM as complex as your daughter’s. I got a second opinion from Dr. Smith at Boston Children’s which was helpful. Also, a lot of people on this board recommend Barrows in Arizona for a second opinion as well.
My thoughts are with you and your family during this difficult time. Let me know if there is anything else about our experience that I could share that might help you.
PS - I recently came across the pediatric stroke tool kit from the international alliance for pediatric stroke that might be helpful. It’s not AVM specific but has some helpful resources: Family Tool Kit - International Alliance for Pediatric Stroke
Hi, I am navigating this myself now. My 15yo daughter is having a second embolisation now. When the treatment was explained to us it was presented embolisation as a preferred option, craniotomy second and radiation if needed. My daughter has multiple AVMs so possible our options are different. We are in France and going for a second opinion isn’t really done here. We are at one of the top hospitals for this and have to trust the doctors in their decision making.
You do have to trust your doctors. Embolization did wonders for our son. I pray that all the treatments heal your daughter. One of our doctors told us that AVM treatment is a marathon and not a sprint.
Nor in the UK but the US healthcare market is like buying any service: it very much lies on the shoulders of the patient to decide who they want to engage (within whatever limits there may be in their insurance coverage) so it is always important for US patients in this space to be happy that the team they engage is the best for the job at hand. It’s a very free-market approach to healthcare
I’m so sorry to hear about your daughter’s bleed and I hope she is doing ok.
I can recommend that you contact Dr Renet Chapot in Essen, Germany for an opinion. He is a leading interventional neuro radiologist and he successfully treated my AVM last year after gamma knife failed to work for me. He has developed new techniques for difficult AVMs including the transvenous approach which is still used by relatively few surgeons, and the pressure cooker technique which is now widely adopted for embolisations. He operates from Alfred Krupps in Essen. You can also watch YouTube videos of him lecturing other INR’s around the world on his work. He has treated to my knowledge around 1,500 AVMs of which around half I believe used the TV approach, which must make him one of the most experienced in the world. There may be others like him, but I suspect that he would be the best person for an endovascular opinion on your daughter’s case. If you struggle finding him message me and I’ll put you in touch directly. Also happy to share my experience of the process, just let me know what you need.
I’ll just add that to my knowledge there is at least one foreign country that their goverment health insurance is covering the costs of Dr. Chaopot services (I would expect becuase of the uniqueness of his services that can’t be found in that country and probably in most of not all countries), so it may be worth to check out if your insurance will cover it.
