It has been just over a year since we found out about Luke’s AVM. On March 3, 2024, Luke fell at home and hit his head on our hardwood floor so hard that he had a brief loss of consciousness. This led to an ER visit at our local Children’s Hospital and a very astute ER provider that noticed something looked abnormal on his otherwise normal CT scan. That provider made sure that Luke received the proper evaluation and we were referred to Neurology. About a month later we had an outpatient MRI that revealed he had a large arteriovenous malformation in the right side of his brain. Our local neurosurgeon then referred us to a phenomenal neurosurgeon at Cincinnati Children’s Hospital where he has been receiving care since June of 2024. We are so lucky to have such a wonderful neurosurgery team at Cincinnati Children’s that has provided exceptional care for Luke. We truly feel like we are in the best hands with his team!!
So far he has had two embolizations that have both been successful and gone very well. Now we are back in Cincinnati for the final phase of Luke’s treatment. For this phase, he will be having another cerebral angiogram and embolization tomorrow morning. Then on Thursday he will have a craniotomy to remove the AVM. The surgery is obviously a very big surgery with risks involved. The decision to have this surgery came after many visits for diagnostic testing and conversations with his team as well as second opinions from other world class institutions. Luke has already been through a lot and has shown so much bravery and resilience. He is truly a warrior and I am so wonderfully proud to be his mom.
Thanks again for the all the support and we ask for prayers and positive thoughts for this next phase to be successful with a positive outcome! God has been faithful and we trust that He will see us through this!!!
Much love, hugs and positive thoughts for you, your son and your family. I know exactly how you are feeling as my son had his craniotomy on Thursday. The thought of brain surgery had terrified me even though it was the right thing to do. When this is done, you’ll feel a weight off you and your son’s shoulders. When the surgeons came out and told us they were done and removed the AVM with no complications I cried with utter relief.
These kids are so resilient and recover so much faster than adults, it’s amazing. My son was released today from the hospital and he’s already back to fighting with his sister, playing video games and making poop jokes. I do not know how we came to be so fortunate but I am so so grateful.
Sending positive thoughts that Luke experiences an uneventful, successful surgery with a quick recovery
Thank you so much for sharing this! I am so glad to hear that your son’s surgery went well and he is doing well! That is wonderful news!!!
This is so incredibly difficult and even though I know we are very fortunate to have found this before a rupture, it has been very difficult to make the decision to do something that may change him for the rest of his life. I long to hear the words that the AVM is gone with no complications.
Definitely in our prayers for another successful embolization and craniotomy on Thursday (tomorrow). I was there in your shoes in January 2024 for my son’s embolization and craniotomy. I know the feeling of being worried but knowing in my heart that it had to get done for his own good. Prayers for your son and family.
Surgery is done and the neurosurgeon was successful in removing Luke’s AVM. The last embolization before his surgery went better than expected. He was finally able to get far enough into the deep feeding artery that he had attempted before and successfully embolize it. Also, while he was in it he found that Luke had 2 flow related aneurysms that had not been previously identified and embolized those as well. We are beyond thankful for this phenomenal team and what they have accomplished for Luke.
Luke is currently still hospitalized and does not seem to have any immediate deficits. He had some left arm weakness but it has improved already and mostly back to normal. They have not tested his peripheral vision yet but so far things are looking good.
He is in a lot of pain and just trying to find the right combination of medication to keep it controlled. He is very hypersensitive to everything now and still not wanting to eat much but hopefully over the next few days those things will improve.
I just wanted to give an update on him and thanks again for the incredible support received here.
Sounds very good. It’s a big op so I hope he gets to a much better place with the pain and then he should be on the road to recovery.
Young people often seem to come through these things very well but if it takes time to get better, I’d say my experience personally from just an embolization (but also from reading people’s stories on here) is that recovery from this stuff is not like breaking an arm. It doesn’t take just six weeks for things to be back to normal and it isn’t necessarily a nice straight step-by-step line. So if he finds it more like two steps forwards and one or two or three back, not to be down about it. The brain is perhaps the most sensitive thing we have and recovery therefore takes its own time. Patience, apparently, is one of the virtues!
I am so glad it went well! He’s a tough little guy! I bet you are so relieved!
My son did not want to eat much either the first couple of days. The morphine caused nausea and vomiting. Once he was weaned off of that, he quickly got back his appetite and felt much better.
I hope Luke feels better soon!
Awesome news on Luke. Not trying to be an informed medical anything. Just to share something you can ask medical team (Neurosurgeon team). My son was in excruciating pain also after Craniotomy. Didn’t want to eat or do his daily required exercise either. Neurosurgeon team decided to perform what is called Epidural Blood Patch procedure. Problem solved in hours and he was so much better. Bring it up at least so they can tell you why its a good or bad idea. But all in all great great news!!!
Thanks for all the encouraging messages and suggestions. It was a so hard to see Luke in so much pain but to see him get through this with minimal issues is such a relief. We finally figured out that he needed to stay on the muscle relaxers a bit longer because he was having muscle spasms in addition to the incisional pain and expected head pain that goes along with this major surgery. They were giving the meds on an as needed basis but once they added the muscle relaxer on as a scheduled med he improved and finally started eating. He was able to be discharged on Tuesday and we will do some outpatient PT/OT but he doesn’t appear to have any lasting deficits.
As far as the plan for the future, he will need to have a repeat angiogram in three months for evaluation of one vessel that showed some slow flow on the repeat angiogram after surgery. This was a vessel that they had been watching and his doctor believed this to be the cause of Luke’s headaches that started after his second embolization. His neurosurgeon said that his AVM was high flow and described it to be like a sump pump recruiting flow from another vessel. He seemed optimistic that it will possibly collapse and close up its own, but if not then Luke will need one dose of radiation to close it and prevent any regrowth. He said that it would be easy to get to and we shouldn’t have any concern for side effects from it. Hopefully it will take care of itself but we will just have to wait and see.
We are so very thankful for these results. Again, thanks for the support and I hope you are all doing well on your journey! I hope that by sharing his experience it can be helpful to someone else on a similar path.
Thank you for this advice and I am glad that the blood patch worked so well for your son. I was starting to get concerned for a CSF leak but fortunately when they started giving the muscle relaxers on a more frequent schedule he improved a lot. It was so hard to see him in so much pain. We are just so thankful to be past this surgery!! Thank you and I hope your son is doing well!! When will he go back to see the results of his radiosurgery treatment?
Relieved is an understatement!! We are just so grateful and happy for this to be behind us with such positive results. I hope your son is still recovering well!! Thank you for your encouragement and support!!
You are absolutely right about the resilience of young people!! Luke is doing so much better and it is hard to believe that he has just been through such a big surgery and doing so well today!!
It was very helpful to think about it as not being a straight line to recovery. The progress seemed to be slow and it was very hard to see him in so much pain. It was such a relief when he finally started eating and his pain was under control. Even so, he would seem to be doing better one day but then would go right back to not eating or wanting to do anything the next. Patience was exactly what was needed to make it through this difficult recovery process. Once he was discharged and we got home he has really progressed. I think being back in a familiar environment has made a huge difference for him. We are in a much better place now and so very thankful for the support from you and this community!!
So carry on being patient, please! It’s great to know he’s out of the biggest rut but there’ll be more to come. It’ll be good to get that one last vessel looked at and even better if it resolves on its own but even if that goes the best way possible, can I say that my own experience of having my blood pressures replumbed in a number of hours, it took a long time for my head to feel ok!
My op was almost exactly 8 years ago: 3rd April. By mid June I was discharged and allowed to drive again. I took my mum to London for the day in August but my resilience was much lower than usual and honestly I think I overdid it. By September, I was better but still felt I could be overdoing it from time to time. In October, I think, I had a strong dizziness that hit me. I can’t remember now whether that was just one day or a few days but it was a setback. I went back to my GP and I stopped driving again.
I was referred back to hospital (six months waiting time again) and had an angiogram and an MRI or two. The results were given to me the following Sep or Oct. Nothing was found but the way my head felt during that year and a half was variable. Generally good but very weird sensations from time to time or day by day or one week from another. I’d agree that noticeably better by Oct 2018 than Oct 2017 but still weird and reflective of the symptoms I’d had pre-op.
I resolved to put it behind me, trust the answer the docs were giving me and that final step of focusing on the future rather than worry about what was apparently past was my final fix. I’d say it was 99% behind me two years post op.
So it may still take a long time for Luke to be comfortable, “back to normal” or at least back towards normal.
He has a different AVM from me, so his experience will be different but I kinda want to caution that there may still be a good distance to go. So I hope you can go through some of that without being thrown by it.
Happy to see this update! I have been following along with your son’s story as we are in a similar boat with my daughter, just a few months behind you! We have completed 2 embolizations so far that have gone really well, parts of her AVM actually closed on their own in between 1st and 2nd embolization.. hopefully that happens with the one your son has left!
She will have her last embolization and craniotomy in late June. Part of me is so ready to just get this over with and the other part of me wants to run away screaming lol I feel confident we’re doing the right thing, it’s just scary. It will actually be her second craniotomy, but she was an infant for the first so it was a lot easier not having to manage her emotions. Now she’s 6 with big feelings and I have to hold it together for both of us
Any advice for the hospital/recovery or things you wish you knew in advance? How long does he have to rest/stay out of school?
I am sorry you are having to go through this again with your daughter. I am sure it was so scary to do it with an infant. I can relate to the feelings of just wanting it be done and also not wanting to do it at all. I felt exactly this way and definitely feel like a huge weight has been lifted now.
Her being older will definitely have some challenges but kids really are amazing and resilient. We have had to deal with his feelings related to the loss of control of some things, especially about having to shave his head. He is at the age where image is everything, so even though we tell him his hair will grow back that doesn’t really help him feel better now. His friends are really into the Jordan brand clothing so I was able to find a cool youth Jordan beanie that he likes. Also, I let him pick out a special shirt to wear that says “Badass brain surgery survivor”. He enjoyed getting to wear it in the hospital, especially since he picked it (even though I tried to discourage that particular shirt lol).
As far as advice for the hospital, not sure if you will be using your local hospital or traveling out of town but for us we were able to get a room at the Ronald Mcdonald House that is across the street from the hospital. We didn’t go there until he was out of the PICU. Once he was on the floor it was nice to have a place to go to shower and just have a moment to recharge. My husband and I would take turns stepping away and it helped me to be able to deal with my emotions and be ready to stay strong for Luke.
For recovery, I wish that I had found an outpatient therapy center and made sure that we had the proper referral form ahead of time. We were given a paper copy of the referral for PT/OT from Cincinnati and I called our local pediatric rehab center before discharge and was told they could accommodate him for outpatient rehab, but here we are a week later and still trying to set it up because they needed a different form filled out. They said this issue has to do with it being an out of state referral, but it is more about making sure the insurance company will pay. Luckily, today his PCP was able to fill out the correct form and he is on the schedule now.
He will likely be able to go back to school on 4/21, so two weeks post op! At first, I didn’t think that would be possible but he really is getting better every day and I think he will do fine. He is still tired often but not really complaining of pain now. I think the biggest issue will be getting him out of bed in the morning.
I hope things continue to go well with your daughter. I know how hard this decision is to make even knowing it is the right one. Hang in there, you are almost there! Let us know if you have any other questions/concerns or just need to vent. This place has some amazing support!
