Had AVM removed 9 months ago and am curious about skull peice removal

I have recovered fairly well. doing a lot of things I did before and really just suffer from exhaustion and head aches. One other thing that has me worried is the place that they cut in in the back of my skull to remove the AVM is soft and indented a little. It is soft to the touch and feels like the skull is still gone in that area. I left the hospital and they never said anything about a piece being removed and not replaced. I have since lost my job and dont have ins so I have not gone for a follow up. sometimes the area feels like it is not indented but very smoochy, especially when i sleep and wake up. During the day it is indented enough that it is visible. It has me worried because if i touch it I get a headache feeling and pain in my eyes. I was wondering if anyone else experienced anything similar. Mine was a cerebral AVM. The area is pretty much right where my neck meets my head on the left rear.

Justin, my husband is the AVM survivor, and he mentioned the same thing about the "soft, indented area" after his craniotomy. He did mention it to the neuro doc when he went back to be released for the last time. The doc said that that was where they first started going into the skull, if I remember correctly he called it a burr hole?? His was tender and bothered him for a while but eventually it stopped bothering him and the feeling has come back, as his was "numb" feeling for a while. Where as he still has the dent it does not bother him anymore, hopefully this is what your's is and hopefully it will go away in time. Glad to hear you are doing well!

Blessings!

Marie

Thanks for the response. Good to hear all is well… Makes me feel a little better. I cant wait for my insurance to kick back in so I can go in for a follow up…

My head is still indented and always will be. It was soft and very tender to the touch for quite a while, perhaps a year or so if I remember correctly. It is not as soft and is not nearly as tender as it used to be, although it does hurt if I rub it wrong while I sleep something. Incidentally, it also hurts when the weather is cloudy and it’s going to rain.

I guess what i am wondering is if I should be worried. It is right at the base of my skull where it hit my neck and the section that feels like it is missing is about the size of a golf ball. it didnt really show until after I left the hospital when the swelling went down. If I feel it it feels like it is missing from about a inch behind my ear to the base of the the skull about the size of a golf ball. They remarked alot after the surgery that they had to cut through alot of the muscles in my neck and I am worried that there is nothing between the skin and Brain. I dont think im being paranoid. Just not the same as the other side.

Hello justin, my surgery was 20mths ago and my dead is still indented, just the same as Trish’s. Occassionally, depending on what I do, it will hurt a little, but much better that it used to. I think it just takes time to heal fully. Take care and best wishes, Lesley.

Thanks for the responses.... I feel a little better now 8)

I hope that everyone that reads this recovers as well as i have been if not better!!!!!

I suggest you go for a follow up. Did they remove a piece of your skull? You need to find out more details. Call the doctor and ask what precautions you should take. They will advice ypu over the phone.

hi, justin. i had my avm surgery 10 years ago and the surgery site on my head still feels numb and it also is indented. when i get dehydrated or tired or when it is cold or rainy, it feels sore and feels it is deeper. it is very weird. but i got used to it. when i feel pressure on my eyes or anywhere, i take a rest by lying down, elevating my head with 2 pillows or sit on a recliner. i try to limit my salt intake and make sure my blood pressure is okay. it will take time to get used to the post op area. please see an md for a f/u as soon as you get your insurance taken cared of. life will get better…we are here for you.

thanks !!!

because they removed the musle in that area. Your hair will cover it–you’ll never notice it. Can you walk?

Yes I can walk. I am back to business as usual for the most part. I was thinking it was muscle as well. Its just that if you feel both sides it is very hard like skull on one side and the other right where they cut in is indented and sometimes when i lay down or cough it will puff out and if i touch there it feels really weird and painful. Just scary.

Mine is too. I take it is a craniotomy in the back of your head? My doc wanted to remove it at 2cm on brainstem then waited till it got to be 3.5cmand bleed all summer long in 09 and did craial nerve damage. Everyone walks. Do you have a mess plate scewed in and vertigo. I am having blurry vision got a shunt and am special rehabing 18 months post op,till i rebuild the perfect baest. I will!

PS: I have lost my left hand use for now. This is by far the biggest challange in life so far and I done alot. STROKR LIKE SYMPTOMS STLL WITH ME AND THE DIZZINESS.

I found out that they never replaced the skull piece because of the location of the surgery. As I am glad to be alive, I don't like the looks I get because of the indented area. From the side it is very noticeable and because of my job I cant wear a hat and cant have longer hair. Really not helping my self esteem. Wish there was something I could do. But Ill take life over anything. 8)