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AVM Survivors Network

My son had his embolization and craniotomy 2 days ago


#1

Hi everyone. I posted a few weeks ago about my son who is 16 and had an AVM in his SMA section of frontal lobe. We leaned toward surgery and I am happy to report he had a successful embarkation and craniotomy Tuesday and Wednesday. I need advice though from anyone who has had a craniotomy. My son is only 45 hours out of craniotomy, not even 2 full days. Due to where his AVM was, he is having full weakness on his left side. The vascular neurosurgeon said therecently is some swelling from the surgery that is normal and as it goes down, the movement will return. He was monitored for all brain function and activity through the surgery and everything was fully intact with no.issues. he has had his angiogram which showed complete and total removal.of the avm. He also has had CT scans and they look great…no strokes, all good. I am hating the fact he has this wrakness/ paralysis on the left side. He also is highly drugged from pain meds, on seizure meds for a month, on a blood thinner since can’t move left leg, is still in ICU, and they are tightly mo I toeing his bp. The vascular neurosurgeon said the peak swelling is 2 -3 days out of surgery and the swelling is causing the weakness. They strongly feel.it isn’t permanent. He may need 1 to 2 weeks of inpatient rehabilitation before going home. Have any of you had this type of issue after a craniotomy. I know all cases are different and I know it takes time, I’m just really worried. Please share your encouraging stories with me…thank you! I’m a scared mama :slight_smile:-)


#2

I’m a parent, so all I can say is God Bless! Brain surgery is scary and very serious. I pray everything works out for your son and you. Its not an easy road.:tired_face:


#3

I was hoping to get some feedback as far as other experiences etc. I appreciate the well wishes but saying brain surgery is scary doesn’t help. He had avm that had 2 aneurysms and it was smaller and in an operable spot. We conferred with ucla and ucsf aND they agreed surgery was best because he is 16 and would have had a bleed at some point. Not willing to have him die from that or have a stroke. Avms are more scary than the surgery. It probably saved his life or serious life altering complications.


#4

Lisa,

i am glad to here your sons surgery was a success.

In my case, i had lost my left peripheral vision. At first it was difficult to read since i was unable to see the whole sentence. It took me a few months to regain 90 percent of it back.

Here is another story, at the hospital i met a young lady (20). Who after embolization had to learn how to walk, it took her about 2 weeks of rehab. I still keepin touch with her and she is doing great.

Swelling is a normal thing after surgery, give it some time for the swelling to go down, i have faith that he will get better.

Your doctors know best and it is definitely encouranging that the feel it is the swelling causing the temporary weekness. Stay strong and i will pray for a speady recovery.


#5

Lisa

I can’t offer you my own experience but an embolisation and a craniotomy are pretty major assaults. Any operation results in swelling and 2 days in is very soon post operation. I’ve had a hunt round for stories that might help (you can do this yourself, using the grey search icon, it looks like a magnifying glass) and you have to dig into each story to try to find information.

My conclusion from the survey I’ve just done of a number of stories? There are some really positive stories out there where people were really good 2-3 days post op. But it is much more usual, perhaps, to need to be patient, to be in hospital for a while, to then need to spend some time in rehab, exactly as your doctors have explained.

I can only say that he’s doing really well, having had a major assault on his brain. It really will take time.

Best wishes to you both

Richard


#6

Thank you so much richard…I truly appreciate what you researched and said and I am taking it to heart as it is great advice

Lisa Shanahan


#7

Lisa,
My experience immediately after waking up from craniotomy was that my speach was slurred by the left side of my mouth and I had to eat with a straw and dribbled. My left hand, in particular my last two fingers did not work very well, but it got better after a few days in ICU. I was 34. I am now 36, I only experience issues in left side when I am extremely tired, or if I experience migraine and this is usually at the time of my period.

Immediately after the operation I rested and waited. I tried to distract myself in ICU, I was monitored every 15 minutes for the first 24 hours then every half hour for the next 24 and went through a series of exercises and questions with the nurses. I remember inventing games for myself and listening to a lot of short programmes on my iPod I had pre programmed, short lectures and biography shows and even though I remember being in pain I tried to imagine what the people’s lives were like and how it was to be them. Somehow this really helped and it meant I didn’t mind the nurses or the other patients too much.

The first 48 hours was tough but I talked a lot to my Mum and my partner in my mind and this helped a great deal. It was harder being on the ward- In the UK it is usual to be on a shared ward - all I wanted was quiet and no distractions from sleeping, dreaming and listening to my iPod. I listened to a lot of music too that was a bit droney - more like spoken word poetry over music-but this was deliberate and did the exercises the nurses would make me do at intervals in between their visits to monitor myself. This helped calm me a lot.

Nearly two years on I am still on keppra but basically I am recovered. I had an angiogram 6 months after the operation and this showed complete removal of the AVM and sucessful healing. It is a slow process, but your son is half my age and it is about patience calmness and tenacity. That is the biggest lesson that l learnt from my experience.
Laura


#8

I should add I was in ICU for 3 1/2 days slightly longer than the team treating me anticipated and then on the ward for another 11/12 days it’s a bit of a blur now and I had to sort of re-learn to walk, it is not as extreme as some people have related but as Richard explains the brain had had a massive assault after a craniotomy. I had to spend what seemed like forever mastering the trip from the bed to the bathroom and then later in those days the stairs. It all seemed like incredibly hard work… I hope very much that this helps you both.


#9

Great to hear the success experienced so far and the prognosis, the most difficult part is over. Can’t relay any personal experience as I was a Gamma knife case, but some great info passed along by folks who have been through similar. My prayers are with your son and you and sure look forward to hearing his progress. Take Care!


#10

I’m sorry to go on but I also asked my Mum to get me an eye mask, the kind you get given on flights to black out the light. I also- I know I mentioned my iPod- but it was not my phone. I gave my phone to my Mum whilst I was in ICU to try to digital detox- something about the light of the screen was really aggravating.
I managed for about a week but it was the hospital food that ended this as I am gluten intolerant. I put my pre programmed iPod on shuffle. The eye mask was great because it meant I got complete blackness.
My head was massively bandaged but the nurses let me wear the mask over that and over my eyes. This meant I could at least imagine myself out of the room and it gave my eyes a rest as they were not stimulated by anything. I was conscious in those early stages of how much every single action seemed to take effort and energy. Now I understand more than ever what an extraordinarily adaptable processing organ the brain is. I felt at that time the smallest movement needed it’s equal amount of rest in proportion to the effort it took to do it. When the cardio vascular nurse looking after me came to talk to me we discussed this a little and she told me that my brain as an organ was working to carry out all its regular functions and simultaneously trying to repair. This accounted for the very specific kind of tiredness I felt.


#11

Lisa,
I hope you son is progressing okay.
Your son’s situation touched me because it is exactly my experience - I was just 17 in my final year in high school, when I had a bleed from an AVM in the right-side of my temporal lobe. It happened out of no-where and felt like someone hit me with a baseball bat, (they didn’t btw). I was 15 hrs in surgery and was in a lot of pain for several days afterwards due to a lot of facial bruising, looking like I’d been in a boxing match!
My left side was very weak, particularly my left leg. This took a long time (nearly 10 months), to return to feeling mostly normal, but it did get progressively better with each day. I believe sleep is the great repairer for the brain; when I didn’t get enough sleep, the weakness rebounded a bit, (feeling of muscle tightness and pins and needles), and would go away with good sleeps. For 3-4 years after, if I became over fatigued, I’d get that mild muscle-pulling feeling in my leg. Please don’t be alarmed in anyway, this length of recovery is my experience, others recover much quicker.
My surgery was nearly 38 years ago (1979). I’m grateful for the skill of the surgeon. If your son is on anti-convulsants [the brain doesn’t like being touched] and is told to remain on them for a while by the doctor, make sure your son is ‘religious’ about taking them, even though they may make him feel a bit ‘out-of-it’ for a while.
Keep us up-to-date with his progress and tell him to stay positive, and determined!


#12

I am sorry about your son. I had some trouble moving my left foot initially after surgery, but nothing too severe. I did have severe leg pain following surgery, but it was unrelated. Two months later, I am completely fine. Minor leg ache here and there, but I’ve come a long way. I don’t know what it is about the left leg, but that was me too. Prayers coming your way.


#13

I did not have a craniotomy, I had GammaKnife, however; brain swelling in general tends to happen when it’s manipulated like that. As my swelling went down my motor skills improved. They are not like they used to be, but better than not walking at all!! I hope his situation has improved. :pray:t3:


#14

after the swelling goes down you will have a better idea of his deficits.
It took me 3 months to learn to walk again.
once my swelling went down I started to slowly notice more feeling and movement on my left side.
it has been a year and i would say I have 80% of my sensation and movement back on my left side.
Left periphreal vision is permanetly gone in both eyes.


#15

Lisa,

Reading others’ posts reminded me of you. How is your son getting on?

Very best wishes,

Richard


#16

Thanks for reaching out Richard! He is doing remarkably well! Truly amazing actually. He had his 9 hour craniotomy 4 months ago today and then was paralyzed on the left side for over a week. Since then, he has regained use of his left side learning to walk again, regained all of his fine motor skills through OT , began working out and rebuilding his body, is now throwing in a throwing program for pitchers, was cleared completely by the neurosugeon over a month ago, and should be back on the mound pitching for his high school by end of summer! He still gets a little tired, and dealt with some headaches, but that is much better. He is off all meds and has been for awhile. I truly appreciate you reaching out to me! I hope all is well!

Lisa Shanahan


#17

Lisa,

That is fantastic! It’s really good to hear!

I’m doing OK. I had my embolisation at the beginning of April and half believe I’m sorted but have a remaining dizziness which has been a bit more troublesome this week.

I though of you because of @Hope17 see her post linked below. I think she could do with a bit of encouragement that things can come out well, though as we all know everyone’s AVM is specific to each person.

Really glad to know he’s doing well. As you say, remarkably well.

Very best,

Richard