To all who are in need of another success story… here is one from Switzerland.
In December 2017 our (then 21 year old) son was diagnosed with an AVM after two epileptic seizures. Before that we had no idea. Our son had always seemed healthy, there was nothing out of the ordinary during his childhood and adolescence. The diagnosis was a shock. His AVM was big, > 6cm, Spetzler Martin Grade 4, Spetzler Ponce C, in the right side of his brain reaching from Gyrus frontanlis superior to Gyrus cinguli. The doctors recommended to wait and monitor every year because the risk of a bleeding seemed much lower than that of a treatment. They told our son to go on with his life without worrying too much.
We tried not to worry too much. It was difficult, especially because our son couldn’t get rid of the seizures despite the medication (Lamotrigin, Keppra).
In March 2020 the AVM hemorrhaged. Our son was very lucky that it bled only little, and all bled into the mess of blood vessels of his AVM. He recovered fully within weeks. The doctors recommended a change of strategy: by multiple steps of embolization they would prepare the AVM for craniotomy. They decided to go slow in order to make the procedure as safe as possible and also because of Covid 19 which led to capacity overload at the ICU. So, our son had embolization about every two months from April 2020 to Mai 2021: it meant one week at the hospital for treatment and two weeks at home for recovery. After some embolizations he suffered from headaches and dizziness, especially when driving over bumpy roads. He had seizures or “funny seizure-like feelings” when he started to work too soon after two of the treatments.
On August 9th 2021 our son had his 5th embolization. Two days later he had craniotomy. It was a 10hour+ surgery. We didn’t hear from the doctors for 14 1/2 hours and almost passed out of fear. They had estimated full success at 80 % with the risk of impairment of the left arm and leg. They couldn’t make any prognosis for the epilepsy.
One day post craniotomy the angiogramm showed full obliteration of the AVM. One day later our son was able to move into a chair beside his bed. He was tired but otherwise his old self, AVM free though, what a relief! The next morning he walked to the bathroom, a bit shaky at first and without any problems by the end of the day. He had an epileptic seizure on day 4, a little setback, and recovered well. He had a tiny decrease in strength in his left arm and leg.
Today, August 24th 2021, you wouldn’t be able to tell that he has ever been to the hospital. If it wasn’t for the impressive scar on his head you would never guess. We counted 68 metal clips from ear to ear, but they were removed 10 days post surgery, and the cut is healing nicely. Our son feels really well. He has got some headaches (bearable without medication) and is still easily fatigued. He takes serveral naps a day. He hasn’t located any impairments yet, maybe there is only 95 % strength in his left arm and leg but he only realizes when he concentrates on it, and he hasn’t gone on a longer walk than 200 m. He isn’t sure if he has experienced any changes in his cognitive functions. It’s just too soon to tell, and he has no reason to worry about it for the moment.
In about 12 weeks he will go for an EEG (electroencephalogram) to see how the epilepsy is doing. Until then he has to take an increased dose of medication to make sure he stays seizure-free (Lamotrigin, Briviact).
These are the facts. How I feel about them? I can’t describe in short words. I still think it’s a miracle how well our son is doing. I had read a lot about treatment of AVMs and - despite being a amateur - had an idea what Spetzler Martin Grade 4 meant. I was so very worried about the outcome of the treatment. But I was even more worried when thinking about a future without treatment. And now, it’s done. The AVM is gone. The biggest part of this miracle we owe to the highly skilled doctors and their teams at Universitätsspital Zürich, Switzerland. They have been there for us from the very beginning and never promised anything that they couldn’t keep. Here are their names: Neuroradiologist Dr. Zolt Kulcsar and team, Neurosurgeon Dr. Luca Regli and team. I truly believe that they saved the life of my son by obliterating the risk of a hemorrhage in a unpredictable future. And by doing so they gave him and all of his family a chance to live without worrying too much in the present. We are so grateful to the doctors and to everybody who helped us through this ordeal by providing information or words of encouragement. Thank you, community of AVM survivors!
If you have any questions, don’t hesitate to ask. Das gilt vor allem auch für Deutsch sprechende Menschen. Ich gebe gerne Auskunft über unsere Erfahrungen, wenn ich damit weiterhelfen kann.
stands and applauds with a smile from ear to ear
So uplifting, thank you very much for sharing!
Beautiful, thanks so much for passing along and a great big hello to your son from Canada! John
Hi R
So far, he hasn’t had any more seizures. If this good news is a result of Briviact or of the AVM being gone, I don‘t know. Maybe it’s both?
Our son is doing fine. I hope that one day he will be able to get rid of the anti-seizure meds. It‘s still too soon to tell and too soon to try.
Keppra vs Briviact: our son thinks that Keppra gave him a bit of a bad temper and caused problems with sleep. He feels better with Briviact. But again: Keppra was before surgery when life was much more difficult.
If one has to deal with AVM, epilepsy, anti-seizure meds, side effects of meds and psychological stress it‘s difficult to identify exactly the origin of any problems - even for specialists.
Glad to hear everything worked out and I share a similar story but was 30 when my AVM was first discovered… like your son it was also located on the right hand side and removed via surgery.
It is a long journey but I always state here with confidence that there is light at the end of the tunnel for all of us and to make sure we stay positive at all times… Thank you for sharing your story Im sure there are many here who need to read this… God bless!
Wow! Now that’s a success story for sure!
That story brought a tear to my eye. Let your son know I’m praying for him from America!