After effects of AVF craniotomy

I apologize if you get this twice. I sent it as a message to the group but now can’t find it. Was thinking maybe it should be a discussion topic instead so here goes. Learning as I go.

Good morning. I had surgery on July 7th and have been getting increasingly better. Last night I woke up with pain again on the back side of my head and neck. Have any of you experienced this? Had to take a pain pill this morning for the first time since about a week and a half after surgery. Neck feels tight like maybe some swelling. Can’t decide if I should call the doctor. I’m thinking of seeing how today goes. Pain med is kicking in.
I thought I was about over this! Guess not yet. I have a followup dr appointment next Wednesday at Emory with the doctor.
Thanks for any feedback. Bon

Hi Bon,

I would contact your docs about this... better to err on the safe side. BTW... where was your fistula located? I need to get a craniotomy to fix a fistula on top of my head... e.g. superior sagittal sinus.


I left a message earlier so hope they callback so my AVF was in the dura just above the cerebellum jus left of middle.

Good luck with yours. How soon are you going to do it? I was afraid to wait but mine was on of the riskiest.

Hi Bon,

Mine is Type IIb... there is some cortical reflux but not too severe and only two arteries feeding into the sagittal sinus vein. Unfortunately they couldn't treat them this time with Onyx (as they have in the past) just because they are too curvy... so they are going to remove some of the dura matter where the lesion is and then put a patch over so the dura will grow back without the fistula being there.

Right now I am in the process of getting a 2nd opinion just to see if the docs all agree to the same methodology... or approach as to how they are going to treat it. If they are in agreement, then I will get it scheduled and choose which doctor seems to be the most experienced.

I definitely want to get it done this year since I will have met my insurance deductible and it will be free.

How did your surgery go? Were you in a lot of pain afterwards or was it pretty manageable? The biggest questions I have about the whole thing is the recovery... like how soon I can drive a car and stuff like that. I am single and live alone so I might have to hire a nurse's aide for some things like grocery shopping and stuff.


Cricket, I’ve been talking with the nurse who has been discussing with the dr and they said a recurrence of the pain was not abnormal. After all, it’s been just a month. I developed a fever over the last few days, so have been monitoring that. So far today it’s been staying at 99.6. They told me to go to the Emory ER if it went above 100 again. Dr says shouldn’t be running a temp and it could be an infection or less likely viral meningitis.

My surgery went well. It lasted about 5 hours. I was surprised that there wasn’t a lot of pain and the meds helped so that was good. I don’t know about you and your situation but I drove after 2 weeks after I was off pain meds. I was getting around pretty good by the Tim I got home from th hospital. I was in for 4 days, counting the day of surgery and one day in ICU.

Good luck and surely you can get this done quickly due to insurance. I bet that! I just turned 65 so I am on Medicare A and B and a supplemental plan.

Hi Bon,

When you mentioned the neck swelling in your earlier post, that had me concerned.

Most definitely keep an eye on that temp. And if you are still having pain or if gets more severe, I would contact the doctor again...or make a trip to the ER because who knows it could even be a Cerebral Spinal Fluid issue.

Sometimes though sinus issues can give me neck pain -- especially where my neck connects to the back of my head. On the other hand, it could just be a healing thing too. The body can be weird like that... good sometimes and act funny the next.

But definitely keep an eye on it all and err on the side of caution.

Anyway...good luck to you in the healing and everything... and if you want to add me to your friend's list on here, I will happily accept your request. :-)


Well my temp kept up at 100+ so we took a trip to the ER Thursday evening. After a CT sca, blood work and spinal tap they determined I didn’t have meningitis or any other life threatening infection/virus. 10 hours of waiting, testing, waiting, etc.

I have to go to my internist next to have more bloodwork done for any other types of infection going on.

Now I also have a headache from the spinal tap! Neck still feels stiff and hurts some. Hopefully will get this resolved next week!

Thank you. I sent you a friend request.

Hi Bon,

How are you doing now? I hope you are doing better.

Well, long story short, went back to the ER last Thursday, 8/6 after reporting to Drs that I was running fever and taking pain pills again. After 10 hours, blood tests, spinal tap, CT scan I was sent home with just that they had ruled out any life threatening diseases including meningitis and o follow up with my regular dr in 2-3 days. Went to my internist and explained everything to her. She looked at my “wound” and pressed around it. All this pussy stuff started flowing out, so much she had to call for help. So, back to the ER to be admitted. Saw the neurosurgeon who said they would have to do surgery to open up the incision again and wash out all the infection which they did on Wednesday, 8/12, Consults between neurosurgeons and infectious disease Drs revealed I had a staff audio bacteria,which was fortunately the kind that was not resistant to antibiotics. So, it’s Saturday, 8/15, and I’m headed home this afternoon with continued IV antibiotics for 2 more weeks. I’ll have a home health nurse come to the house tomorrow morning to show me how to change out the fluids.with the pump. Going back in 2 weeks for checkup with dr Barrow and to get stitches removed. Geez! This has to be close to getting to the end!

Hi Bon,

Did you have to stay in the hospital again after they re-opened your incision?

Sorry to hear about that. I do hope you get to feeling better soon. Let me know how everything goes. I am getting a 2nd opinion on Wednesday. And after that I am going to get my craniotomy scheduled.


Christina, yes, I stayed in the hospital until yesterday. They cleaned it out and removed that pice of bone and titanium plate. They said that, unlike a leg or arm bone, the skull bone doesn’t reheal, so it was “dead” and a prime area for growing bacteria. They got the antibiotics in and meds in about 2 yesterday afternoon and we left the hospital about 3:30 or so. The nurse is coming this afternoon as the IV bag has to be changed every 24 hours. The alarm on the pump went off twice during th night but somehow I was able to get it restarted. It’s all pre-programmed so it was just a matter of resetting it. So many things to learn about! I see below where autocorrect didn’t like what I typed. I have MRSA, non-resistant, staph aureo bacteria.

Let me know how your second opinion goes. I hope they’re the same so you don’t have to check another dr.

So what did they do with the bone? Replace it with something else?

How are you feeling now?

I guess they threw it out. The dr said we could discuss replacing it in a year or so. The PA said she didn’t think it was necessary based on where it is. It’s at the base of my skull. I have a post op with the surgeon on 9/26 and will find out more. Getting my stitches removed this Friday! Yay!

Feeling pretty good, just tire easily. The nurse said my incision looks good and last week’s blood work showed my white count at 8 mother normal range is 5-10, so that’s good. Going to the infectious disease dr on 9/2 and hoping they can remove this PICC line and I don’t need the IV antibiotics any longer.

How was your second opinion???

Hi Bon,

I am glad to hear you are doing much better. My 2nd opinion went well but it gave me some more questions to ask surgeon #1 about, so this Wednesday I am going to meet with surgeon #1 again and then I am going to make a decision as to which surgeon I am going to use as I'm planning to get the procedure done in mid October.


Hi Bon,

Well I got my craniotomy scheduled for October 19th. So let's hope it goes well. I am going with surgeon #2. He's a neuro-vascular surgeon so he specializes in blood vessel problems of the brain. The other one, Surgeon #1 is just a standard neurosurgeon who has experience in working with fistulas. I really like surgeon #2... he's a super nice guy and he really took the time to answer all my questions. Surgeon #1 was a bit of an ass.

How are you doing? How's the healing coming along? Any problems with your memory, balance, strength or anything?

Sounds like you picked the right surgeon!!! I’m sorry I’m late in responding.

I haven’t had any problems other than getting my strength back. Doing so much better now. Rest when you need to. You’ll know! My legs would feel wobbly and I couldn’t keep my eyes open. So I took a lot of naps. I am now pretty much able to go without naps and am getting back to normal. My incision is completely healed and my strip of hair is coming back. I refer to it as my reverse Mohawk down the center of the back of my head. Lol.