My husband is scheduled to have a craniotomy this Friday with Dr. Spetzler for a complex dural AV Fistula. We are praying this will cure him. We've been blessed thus far that his only symptom has been pulsatile tinnitus in his right ear. I've been reading about recovery from craniotomies and possible side effects and am concerned... altho I'm not sure there's an option since he still has cortical venous drainage now, putting him at risk for a bleed.
What has been your experience of what we might expect post surgery? How long does it take to "get back to normal" and is there hope of walking away from this with no adverse side effects like headaches, etc?
After my craniotomy, I just rested for a few weeks. I got a tired fairly easily at first, but mostly I was bored. I had the surgery during summer between my college sophomore and junior years. I decided not to work that summer because I'd be in an out of the hospital. Long story short, I was mostly just bored after surgery and never felt totally shitty. When I finally had something to do, return to school 6 weeks after craniotomy, I did so with full energy and no problems.
I lost my upper left field of vision. I'm not terribly good at racket sports now and probably couldn't get a pilots license or win a skeet shooting contest, but no big deal. Five years later I had a seizure so I now need daily medication. I didn't need any medication before. I never had a head ache even one time.
Good as new + 1 big dent in my dome.
I'm sure it's not the same for everyone, but that was my experience. -Chad
Hi Joy, Your husband has one of the very best surgeons & we'll be cheering for you both as he undergoes this part of the journey!
Since you've been reading other pts. experiences, I'm assuming you understand everyone's recoveries differ...
I've had 4 craniotomies for multiple cavernous malformations (in same 'family' of vascular malformations as AVM). With each of my surgeries, recoveries have varied & generally speaking, the less eloquent locations have been smoother recoveries when compared with deep brain surgery which required neuro rehab & is an ongoing recovery.
Fatigue is common & rest is essential.
Here are excellent questions for your drs. @ http://www.avmsurvivors.org/forum/topics/questions-for-my-neurosurgeon
When you are up to it, pls keep us updated on his progress.
Very best to you & yours!
Hey, I had my craniotmy 5 weeks ago. The first thing i remember thinking is why does this dressing on my head feel so damn heavy. I swear it felt like a ton of books on my head but i figured it was from all the swelling. I experienced some headches, allergic reaction to keppra, muscle weakness on both legs that was caused by the position i was in during my 8 hr surgery which was face down also the steroids they give u to reduce swelling can cause it. I lost periphreal vision in my left side..my avm was also located in the occiptial region. My first two weeks of recovery were the hardest...not being able to see well, legs were weak, i was exhausted, couldnt sleep well, plus i went from being completlty independent to needing my mom to help me shower (fyi buy a shower chair...i fainted the second day being home from standing too long) I was very emotional thinking sxit would never get better but it does! Just need to listen to what your body is telling you. I feel stronger everyday..i even started taking short walks alone. I return to work in June ...12 weeks post sx ..i want to make sure i feel 100% before going back. Being home all the time is extrememly boring but i try to set small goals for the day like "today i will attempt to do light laundry" or "today i will wash my hair" its crazy how we take the smallest things for granted...like taking a shower or walk or ever picking things up. Today i feel good might even visit my godson as long if someone is with me i feel more secure...i need to adapt to my vision loss. I wish ur husband the best of luck... Remember listen, be patient and dont take things personally i remember saying some things to my parents that i didnt mean bc i was so upset and overwhelemd
Joy, as Patti said..your husband's surgeon is on the top of the list in the USA...Every case is different, but you and your husband will be in my thoughts & prayers! All you can do right now, is Stay Strong, Stay Positive AND Keep the Faith! Please keep us informed on his progress!
Wise words! Thanks so much.....This journey keeps reminding me the value in staying present and appreciating what is..... not worrying about what might be. We so appreciate everyone's prayers... we truly believe it has helped us get this far!
Dear wise and courageous survivors: Robin had surgery on Friday but they needed to end it due to blood loss. He's due to have an angiogram today to see if they can do any more embolizations before they attempt further bone cutting and clipping of the fistula later this week. His blood count continues low which is a concern. Your prayers are most appreciated! Did anyone else have "staging" when they went through their craniotomy? Dr. Spetzler states that it's not unusual...... we just pray they can get this thing!
Robin had a 6 hour embolization procedure Monday and another 6+ hour surgery today. Thankkfully, Dr. McDougal was able to embolize a fair amount of vessels cutting down significantly on the volume to the fistula, and Dr. Spetzler was able to clip two large feeders. There's a question of whether they were able to get the whole thing or if there's still one small feeder. He's now in Neuro ICU, still with the endotracheal tube as he was slow to wake up but is responding now; and they will do another angiogram either tomorrow or over the next couple of days to check for remaining vessels.
It is so hard to see him swollen and hooked up to tubes but I know each day will bring greater strength and recovery.
Thank you for your prayers...... I do believe we got our miracle and that the greatest danger to his life is behind us! The staff at Barrow Neurological Institute and St. Josephs are the best!
I could not believe my eyes when I saw your posts. I recently consulted Dr. Spetzler by mail. I am from the Chicago area. I, too, have a dural AV fistula. I have terrible tinnitus, feel pulsation at the right occipital area and have headache in that area, as well. Dr. Spetzler is recommending surgery because due to another medical problem I cannot have embo. I have cortical venous reflux which necessitates that the fistula be taken down.
Please tell me how Robin is and how you are. The last post I saw was after embo. and surgery.
Brittany: God bless you! The cortical venous drainage does make it high risk. Robin had many embolizations and had surgery with craniotomy and resection/ clipping of one part of the fistula in his occipital area that had most of the drainage. He, unfortunately isn't cured, but is now out of danger and all that remains are small vessels, which we're praying the radiation he's had in the past will obliterate before the fistula wants to recruit other vessels. He only had the surgery on Tuesday and it's been a slow recovery. I'm very concerned about his having hallucinations now and some expressive aphasia.... not saying the words he wants to say. Spetzler says that it's to be expected and shouldn't be long term, but it's concerning to us. We think the hallucinations are from sleep deprivation from the ICU and he was moved to a quiet room on a regular floor this evening so I'm praying that he gets a good night's rest.
The good news is that he's out of immediate danger.... we just pray there are no adverse outcomes and the fistula doesn't grow back......
Spetzler is the best in this country........ please don't hesitate to contact me if I can be of any further support..... it's a scary disease and process..... we've been there!!