Hi everyone,
I have been scheduled for a craniotomy. My neurosurgeon presented me with two options: gamma knife or surgery. I chose surgery. I am incredibly nervous but hopeful. My surgery is scheduled for Feb 4 with an embolization the day before and an angiogram the day after. I am curious about your experiences as well as want to know about everyone’s experience as well as how to prepare for this. Thank you.
Caroline
Great to hear Caroline, I had a similar situation presented to me. The recommendation from my neurosurgeon was gamma due to location as he felt more deficits were likely with a craniotomy due to location. I can’t provide much advice based from experience, but if it was me I would be focussing on reasonable allowable exercise, a really healthy diet and as much rest as possible between now and then. I’m a believer in the three, although I can choose to exercise, choose my diet by sure wish I could have a sleep switch! Take Care, John.
Hey Caroline,
In my extended family we’ve had the misfortune of 3 of us requiring a craniotomy for 3 differing conditions, none of us have had the same outcome. Every craniotomy is different. I certainly agree with JD, listen to the advice of your neuro and depending on location and the risks involved, will often depend on the options given.
It sounds to me that your medical team have it all planned out. Sometimes they do a procedure then wait, sometimes months, before doing another procedure, if needed. But it seems your team has the whole process mapped out, that sounds like a holistic, proactive plan and that’s what you want in my opinion. My medicos ‘plan’ (if you can call it a plan’) has been more reactive than proactive ie ‘When something happens we’ll look at it then…’ this has stretched my neurosurgical journey out over years.
How to prepare??? Hmmm, honestly… …I don’t think you can prepare. You can go through it all come out the other side relatively unaffected, but then by the same accord you can out the other side with some life changing effects. Most of us are somewhere in between unaffected and life changing.
My best advice is to be kind to yourself.
Recovery can take time and by time I mean a LONG time.
DO NOT be setting yourself time limits. Your recovery process takes as long as it takes. Somethings may have minimal impact one day, but the following day be a trigger to agony. It truly can be a very fine balancing act some days. For me, some days bright light can be my trigger, some days it can be over exertion, some days it can be diet or fluid and then some days it can be a combination of each and every one of them.
All of your ‘Normal’ limits may change. Neurosurgery is a major assault on the whole body. When your body has reached it’s limits, listen to it. Your body will tell you, but only if you listen. I say this because I didn’t listen. I tried to convince myself I was building stamina by pushing those limits, but I did myself more harm than good, so, don’t be doing that.
We are here if you need to chat.
Merl from the Modsupport Team
Hi Caroline,
I had a similar choice of either gamma knife or crainiotomy. After a bunch of very incompetent neurosurgeons, I finally heard from a neurosurgeon who knew what was best and what he was talking about and chose the crainiotomy. I had an embolization 2 days before my surgery (60% success) and very vaguely remember anything between that and going into the OR. I will not lie since the embolization is done through an angiogram procedure and because you have to be coherent during this, it is not the most pleasant but it is definitely worth the reward considering it helps with your chance of bleeding during the surgery.
Did your avm rupture already?
All I can say is be strong and you will come out on the other side of the surgery with or without deficits. Not all the deficits are permanent so listen to your body and your doctors. Do as much relaxing and family time as you can before you go because for me that was the only thing that kept me going.
I look forward to seeing you post how successful your surgery was!
God bless!
Tara
Caroline,
All the best! The guys have given you great advice: I had just an embolization, so can’t tell you anything about your options. Are you having surgery in Hawaii or at Barrow? I know you got some advice from Barrow.
Very best wishes,
Richard
Hi Merl,
Thank you for the advice. I really need to keep in mind that I need to be kind to myself. Since my first seizure and diagnosis, I have sometimes beaten myself up for how tired I am due to the medications I am on or if I forget something due to the brain fog.
I trust my current medical team. Before them I had only a neurologist that was prescribing supplements for headaches even though they occurred everyday and I couldn’t sleep. In addition he kept things vague and was not straightforward with my avm. My current medical team has explained everything to me, have been straight forward about my various courses of treatment, and have kept an open line of communication with me.
Thank you so much for sharing your experience.
Hi Tara,
I am very lucky that my avm has not ruptured. However, my neurosurgeon and new neurologist are concerned about the sudden onset of my symptoms, it’s size, as well as my gender. In the course of 2 months I had 4 seizures and am now on 1000 mg of Keppra since I kept have breakthrough seizures with the lower doses, as well as day and night long headaches on my left side since the first seizure, one of my headaches were so bad I was convinced it ruptured and was sent to the er. Luckily nothing has happened yet (knock on wood).
Hi Richard,
Due to rise in cases of COVID on the mainland, I decided to do my surgery here. My neurosurgeon has done this procedure successfully in the past, in addition he seems incredibly compassionate to his patients, his medical assistant also has been so wonderful and informative. In my initial meeting with them, they called me ahead of time and told me to write down every single question I had, they didn’t care how small or insignificant it may have appeared to me, and we met for almost an hour. They answered all my questions without mincing words. They were straightforward about the seriousness of my avm and pushed for me to get as many opinions as I can. So I do have confidence in the team out here in Hawaii. I will keep everyone updated on my recovery after the surgery.
Hi JD,
Thank you so much for the advice. My neurosurgeon has warned me that my sleep cycle will definitely be off. My husband and I plan on freezing some healthy meals that I can just reheat in the microwave after I leave the hospital.
Caroline
I don’t have much to share as I only had an embolisation and a few angiograms.
But I wish you the best and can wholeheartedly relate to the constant headaches and sleep issues
Hoping for the very best for you 
Sounds bang on. Switching to a new team sounds like it was the right step. Good luck!
Hi AlwaysCurious
Thank you for the well wishes. I hope you are doing alright!
I cannot tell you just how important all of that is. If you have confidence in the medical team that’s one less thing to be stressing about. They are keeping you informed and you can’t really ask for much else.
Best of luck with it all.
Merl from the Modsupport Team
Hi @CarolineT,
Like you I had surgery in February 2011 after I suffered a bleed in January 2011… I was very nervous but the best advice I can give is that you must try and remain stress free and positive… in todays world modern technology is so advanced and these neuros are doing this type of surgery all the time… keep in mind many others with AVM’s dont have the option to remove so we are fortunate and this is one huge positive you need to take from this… it is a long journey on recovery and does take its toll but rest assured there is light at the end of the tunnel and things will only get better from there… please keep us posted and sending prayers your way… God bless!
I had a craniotomy when I was 16 years old, back in 1973. I am 64 now. I remember being very nervous. Anytime you have surgery it is normal to be nervous. It sounds like you are in good hands. I say that because of the follow up angiogram. The surgeons are checking their work with the angiogram. Try to stay calm and just breathe. People on this site are praying for you and a speedy recovery. Vicki
Easy for me to say but it’s important to stay calm and have a good support network. I had 3 embolizations for a very complex AVM left parietal occipital. Each was spaced apart by about 4 - 6 weeks and there was no gamma knife option at the time 1993. Everything turned out fine so have confidence in your surgeon.
Hi Caroline:
I didn’t have the choices you have when my AVM ruptured. The only option open to me was Gamma Knife Radiation. Not knowing what to expect, I slowly got better & better. The road to recovery for me involved a lot of tears, frustration, stubbornness, pissy attitude, denial and eventually acceptance that things were good … not perfect, but dam good! Be patient with yourself. Be patient with your Brain. It’s hurting too. Recovery from any procedure is going to take time. I wish you all the best and I give my best remedy for moving forward on your AVM journey … P&P (Prayer & Patience).
Sharon D…
Hi Caroline
I think everybody has pretty much said it all, i had a craniotomy for a ruptured AVM in 2017 and subsequently have seizures and all the other things mentioned on here but be positive and very very patient, things do start to improve but only if you let them happen - they cant be rushed!!
Somebody said on here that things are so advanced now and they are so take all the advice from your neuro team abd definitely be KIND to yourself
Prayers and best wishes
Andy
Hi Vicki,
Thank you so much. I hope you are doing well.