Hello everyone
My husband is going tomorrow for an embolisation and craniotomy to remove an occipital AVM. He’s been for the last 2 weeks in hospital. He suffered from a very bad sore head all of the sudden and 24 hours after he had a seizure at home. With being covid positive we thought the sore head was because of covid, little we knew it was a brain bleed.
He was diagnosed very quickly and has had minimal side effects. He’s only lost peripheral vision to his left side.
I’m feeling really anxious about tomorrow, very scared. He is only 33 years old and we have 2 children, 5 and 1.
Since I have learned about what an AVM is and searched in this group different people experiences I must say I’m a little more reassured that he will be fine after surgery but still I can’t stop feeling scared.
I very much hope tomorrow goes all well for him and can have him home soon
Welcome! It makes perfect sense to be frightened completely by this sort of wild departure from the road we thought we were travelling. However, I’m glad you’ve done some reading because you’re right: there are plenty of examples of great outcomes out there. The unknown is a much more scary thing than it deserves to be.
I hope you continue to read and encourage yourself and that he has a good day tomorrow. I’ll be thinking of you.
We do have a few brain AVM patients up in Scotland, so I hope you won’t feel that you’re without friends and support.
Very best wishes to both of you for tomorrow. (I think you’ve got the harder time of it tomorrow in some ways! Good luck!)
Hi Richard,
Thank you so much for your message last night, it helped a bit
Surgery today went well and my husband is now in the road to recovery. Apparently he hasn’t suffered any further vision loss and he can communicate well. He is very sore in his head, feeling lots of pressure but it seems this is normal. Hopefully he’ll be doing a bit better tomorrow morning when I see him.
One day less to come home as I tell him every day
I don’t know about a craniotomy but the embolization is challenging enough. I was surprised how gettable-throughable it was but your head is full of glue, full of the solvent from the glue and the contrast material used for the embolization / x-rays, so it isn’t surprising you feel a bit rough. The craniotomy is a massive assault, so (other than first class drugs) you’re not going to feel brill. However, there are lots of people here who have gone through the same, so it must be gettable-throughable, too!!
I’m glad he had a good day.
I hope everything goes nicely from this point. Let us know how he gets on. Sometimes people are out in a few days, even with a craniotomy; sometimes it is much longer. Sometimes progress is made and sometimes you go backwards. Don’t measure progress day by day because it can be quite disappointing.
Hi Naza…
I’m 65 now and when I was 30 yrs old I had a craniotomy for an occipital avm. I have never had any issues…at the time I had a one year old and I can understand you must be very scared…I had no effects after the surgery. At the time they removed my occipital bone and I have no plate…I’m assuming that’s different now…I will pray for your husband and you …please keep us posted or shoot me an email if you want to talk…I’ll give you my #general
Nina
I was 30, married with 2 children aged 7 and 3 when I was diagnosed with an occipital/parietal AVM. I underwent embolisation and craniotomy 22 years ago.
Looking back now I can still remember How frightening the whole experience was but looking it has shaped me. The whole experience changed my perspective on what was important in life.
Your family are in my thoughts and prayers at this time.
Echoing what others have said, really thinking about you and your family. This is an incredibly hard thing to go through! I’m wishing you strength during this time and a smooth initial recovery for your husband. I had what sounds like an almost identical set of circumstances to your husband in Dec 2020. I wasn’t COVID positive, but I had an acute onset hemorrhagic stroke and seizure from a ruptured AVM in my occipital lobe. I also lost peripheral vision and have since had two craniotomies. No embo because my AVM was very small. I am more than happy to answer any and all questions you and your husband have about recovery etc. take care! - Savanna
My thoughts are with you and your husband. I am sending you my best wishes and hope all went well.
My 11 year old daughter had a craniotomy, to remove a large occipital AVM on the 1st of April, at Gt Ormond St. She has the embolisation 2 days prior to that. Similar to your husband, this could have had a huge affect on her vision. She is curretly doing well. It’s not even 3 weeks since surgery and she is already bounding around the garden (still tired which is to be expected). Her neurosergeon and team were fantastic, I am in awe. To say thank you is not enough. Her procedure took 10 hours! Of course it wa scary, but you have to have faith in the team. Think positive!
It’s still a long road for our daughter, both phsically and mentally, but we are so happy with the outcome so far.
I hope all went well with youtr husbands procedure.
Best wishes,
Naomi
I’d just like to add to what @Naomi says and say I’m still thinking about you both.
Remember, don’t measure progress day by day because it is normal for it to go backwards from time to time.
Also, I am sure all of us here recognise that being a carer is more difficult than being the patient. So please be patient, please remember to look after yourself.
Prayers .
I had a craniotomy when I was 19 years old after experiencing seizures from the bleed. Had a few times where I lost the ability to speak, and later was diagnosed after having a massive seizure one night.
35 years later I have no side effects of the surgery and live a normal life of anyone my age. I’ve been lucky, and in a sense my AVM gave me perspective on life, an ability to live in the moment and experience the joys of life with little expectation. Hoping the same experience for you.
I think that it sounds like he is in great shape! With mine, they could not use embolization, and had to go in. It was rear occipital. Believe it or not, some of my peripheral vision returned but not all, despite doctors saying that it doesn’t come back because it’s nerve damage.
You will be fine. Not to overlook one thing though, for my wife it was tough. As a patient I was getting care, so I was seeing progress and development. For her she was facing the unknown and I am sure, feeling very alone. I think that getting support here is a good thing, as well as relying on family and friends.
Good luck,you will be fine. Getting to the hospital is 99% of the battle.
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