What is to be expected

General
1

right after brain surgery?
For those who had surgery to remove avm .....what should i expect? I'm knnow fatigue, headaches and sore throat bc of breathing tube that will be placed during surgery.
Was anyone painful when awaken?
hHow long until u were able to wash your hair?
i know I shouls ask my doctors this but i'd rather get the best answers from ppl who have gone through this.

I live alone and my mom will be around a fews days after my surgery....were u able to care for ur self..like feeding urself, caring for my pets...taking a shower.
of course this all dif i have any defect but im remaining positive ,,so when my surgery goes well will i be able to be alone?

2

Endovascular surgery, or craniotomy? (The recovery time is usually shorter for the first kind.)

3

im having both!

4

The endovascular part is intended to make the craniotomy easier and cleaner, so that should help a lot with your recovery.

I'll leave it up to the people who've been through it to tell you what it's like, but as a spouse of someone with an AVM, I can tell you that doctors tend to expect us to recover MUCH faster than we actually do. So you might be surprised by how weak or fatigued you are at first, or how long it takes you to feel up to doing things again. If you can line up any additional helpers, it could give you an extra cushion in case you need help after your mom goes home. There are websites like caringbridge.org where you can ask your friends to sign up to do things like bring you dinner or check in on you. It isn't everyone's style, but it's there if you like the idea.

5

You'll most likely be kept in hospital up to a week before you go home, if all goes well.

The first few days post operation aren't easy.
It's not so much the pain, as your head is completely numb, but the exhaustion and uncomfortableness. I had sit up straight with a tube in my head the first 24 hours, so it was not a pleasant first night. The tube was then removed and they gradually lowered my back chair. The next night my faced started heating up and I was sweating constantly, it then led to my whole left side of my face swollen. After a couple more days the swelling disappeared and things were better. I was able to get up and freely move around during it all (aside from the first day).

I went home after 7 days. I was able to do everything independently, but of course you should still have a guardian around you for the first while after it. The only issue from then on was serious fatigue, it'll gradually get better but even after 5 years I still suffer from it.

6

Hi there,
I had a craniotomy 2 years ago. The first month I was a 'vegetable' so to speak and struggled with 'room spinning' times as well as naseau and vomiting. Once I started Rehab I did start to get better & stronger in month 2. I must say I had great encouragement around me BUT I know it would have been better if I had known about this website!! Now 2 years later I still find fatigue is part of my day to day BUT I would encourage you. Try and get as healthy as possible - eat well and get exercise it helps with your recovery.
Where abouts is your AVM located?
Talk soon.

7

I had mine 6 months ago, and was kept in hospital for six days. Waking up it felt like the worst hangover I’d ever had, with, and I basically slept for the first couple of days, and was then moved from the critical ward to the ‘normal’ neuro ward.

I had a couple of sessions with a physio, to get me up walking – just up and down the corridor of the ward, as well as a bit of occupational therapy to see if I can go to the bathroom by myself and make a sandwich. At the end of my 6 days I could do all that, and wash myself in the sink and that kind of thing.

And as for the hair – mine is short (I had it cut short just before the operation). I was able to wash it pretty much as soon as I could get home. But I did it with a handheld shower head, avoiding the scar, and using baby shampoo.

8

Hi Nay,
I'd say recovery has a lot to do with the location of surgery, such as less eloquent areas of the brain vs. deep, eloquent.
I've had 4 craniotomies for multiple CM's (same 'family' as AVM's) & recoveries have all been different.
Maybe have mom prepare meals to put away in the freezer for easy meals & a neighbor or friend to help with pet care?
If you have staples for your incision, you'll need to keep them dry until removed, but can wash around them. :)
Best wishes & please keep us posted as you are able.

9

I found it helpful prior to surgery to braid my long hair in 2 braids. While it still gets tangled & knotted, it helps lessen the tangles. :)

10

p.s. Keep in mind as you read the responses that some people had their craniotomy AFTER a bleed. That can make recovery harder. If you're getting treated before a bleed, your case should have a very good chance of being less complicated. No two cases are alike, so try not to get nervous if any "horror stories" show up.

11

Great advice already so I'll just add to it a bit. Yes, hospitals and doctors often think we are ready for release before you feel ready. That's often because of insurance limitations. The fatigue is really difficult the first several weeks especially. I'm almost 3 years out and it's still a struggle. My case is different from yours, I had a bleed so keep that in mind, The pain was pretty bad in the first 2 weeks but managable with medication. I would suspect your pain won't be quite as bad. Once your staples are out you should be able to wash your hair normally. You may be able to be alone but you will probably want someone to be with you, at least for a couple of days. Seriously, the exhaustion is unreal and having someone else with you to help do things will be a big help to you. You need time to heal and recover. Do you have a date yet for the surgery?

12

I seriously wish i could hug each and every one of you..i appreciate everything and grateful for good advice.
My embo is on March 13 and 20 and the BIG day for removal is March 21st.
It seems like fatigue is a big issue does that mean i will actually be able to sleep?? little humor.

I've been super emotinal lately as time is getting close. Like jim said im almost there and hopfully my recovery is a good one.
Well, i guess its time to clean up the apartment and do all i can do before my surgery...i have so much stuff to get rid of..maybe it will help burn some aniexty

13

Gamma Knife (9 years ago) and then craniotomy just 18 days ago. Each person will be different. I spent 5 days in the hospital. First day I really didn't notice much due to the surgery. Second through 5 were somewhat difficult for me because I'm active normally. Sitting in bed with vision problems and not being able to watch TV or anything was a pain. Head was great, no pain or anything. I begged to leave and they let me go home. Felt like I was in jail.

10 days with staples. They will let you wash your hair, just don't over do it or soak it. Watch the drying with a towel and staples!

I didn't have much issue with the breathing tube, little bit of a sore throat but it didn't last long.

I was able to take care of myself after surgery, but wife was around for a week just in case. Make sure someone is with you for a few days if possible, like when taking showers etc. I just take things slowly and am careful when using kitchen appliances and knives and stuff. I have some bad vision problems and left side issues so I've got to be a little careful.

You'll be ok, just play it safe for a bit until you figure out what you're like after the surgery.

gnihcraes searching.

14

I was in hospital for a week after my surgery but took at least 2 months before i felt anywhere near normal in getting up and walking. I was really drugged out for 3 days after surgery so i was imagining things like i was dying and had cancer when i didnt... I think it was about 2 weeks before i was allowed to shampoo my hair. I had alot of pain killers etc but be positive and just take it easy...dont push yourself...God bless

15

Hi Nay,

after surgery, my feeling was mostly uncomfortable, not pain. My head felt numb and "bloated." The sore throat didn't last too long, less than a day. I had my 3rd embo on a Monday, crainotomy on Tuesday and went home on Thursday. I was told to wash my hair. We got a chair for the shower so I could sit. My balance was a little off. We also got a removeable shower head with a very low pressure. I found it best to hold my hand over my head and let the water run over it to be the best. My mom basically helped me for about a week before I showered alone. My staples came out a week later - and it doesn't hurt. I was scared it would hurt, but I didn't feel anything! Take it day by day and let your body adjust and heal...

16

Hi Nay - I think that my deal was a little more extreme so don't expect this - but maybe take bits and pieces - I do think getting an exercise and healthy nutrition routine is important to do before surgery.

I was in a coma for 3 weeks after emergency crani (bleed) - and then I was transferred by an ambulance ride to a rehab. hospital...wait, the fun just begins...I went back for my embo. - did a few MRIs or C-scans - don't remember - after a few weeks at the rehab. hospital, then I was transferred to one nursing home - where I picked up MRSA pneumonia - went to a few hospitals for treatment, but like 4 of the hospitals that my parents took me to (they live in a different state) couldn't find anything. I went back to Henry Ford Hospital where my neurosurgeon wouldn't let me leave until they drained my right lung and recovered...after about a week there, I went back to the rehab. hospital...then after a couple of weeks into another nursing home...then my final "visit" to the rehab. hospital.

After I finally got to go "home", I lived with my parents for a couple of months in an apartment we all rented while they took me to 1 round of outpatient PT, OT, and Speech Therapy. My mom had to cath. me and supervise me in the shower...but, again, this is not the norm.

Regarding washing your hair, the rehab. hospital shaved my head to get the staples out - I'm sure that from my e-crani shave, they had to unevenly shave the area, and I'm sure that my hair was stylin'! It's back now, but I remember using some waterless shampoo - you can spray it in the places you need without rinsing. This might be something helpful to have to avoid any scalp-itch =)

My two cents for advice is to develop an exercise and healthy nutrition routine, learn to sleep through anything-maybe meditation???, an inflatable pillow, and waterless shampoo. I only remember pieces, but I remember that I had to sleep on my back in the hospital - and the back of my head really hurt - but my AVM was in my cerebellum...it took a few to find something to cushion my head...might help to have something like that in advance.

17

Hey...I had my crani 4 months ago, it took about 10 hours. They put my directly from the operation theatre to the ICU where they let wake me up slowly and smooth. I remember my professor standing on my bed asking me to move my hands and arms a.s.o., they put me on steroids and opiates. I had to vomit the first nite, but that was from the anesthesia - i always have to vomit after surgerys. They made a CT scan that nite to make sure everything is allright and I had no bleed. It was all ok. I remember only a few things from the 2 days I was in the ICU..I remember they did some tests to check my vision field and they moved me and let me sit on the bedside and eat. I had no problems with that. Luckily I never head headaches after my crani and no seizures. I was taken to the normal neurostation the second day after crani. i was up to walk then without problems...just abit weird in my head. I didnt have staples - my incision was sewed and they took the marbles off on the 7 day post crani. I slept a lot there at the hospital and even the first months at home. They released my from hospital on the 11 day post crani - could have been earlier, but there were problems with my control angio so they had to repeat it. Till now I am still a bit weirs and exhausted sometimes, but I feel its getting better. The only thing I have left is a 25 % vision field loss on both eyes and some psychological disorders like anxiety and anger, but that already got better during the last months too, a lot of rest helps. And don´t stress urself thinking that u have to do sth or u should be able to sth....everyone needs his time and everyone is different....Take care..XXXX

18

My crani was to clip 2 aneurysms, not for my AVM.

Apparently, I thought everyone was too loud & shushed my mom & my husband after waking. (I'm sound sensitive when I have migraines. Lack of food is a trigger, and it was supper time when I started waking up & actually remembering it.)

My incision started near my right eye, and my right eye was swollen completely shut. I had difficulty opening my mouth & chewing. I don't remember my throat being sore upon waking, but I had very dry chapped & cracked lips.

I was in the hospital from the wee hours of a Wednesday morning until about noon that Saturday. Family fed our dogs for us during that time. When I came home, my husband closed the dogs up in the bedroom so I could get from the car to the house, and into the house and onto the couch. He had to "guard" me to keep them from jumping on me at first. (Three Akitas--smallest is 65 lbs.)

At the time, I had hair past my waist. I french braided it before going to the hospital on the day of surgery. I took it down, brushed it out, and rebraided about 5 days post surgery. A week and a half after surgery, I went to my hairdresser, and she washed it for me. Just going "into town" (5 miles away) & getting my hair washed exhausted me. My husband helped me bathe for the first week or so post surgery.

My mom stayed with me until 2 weeks post surgery when I had my stitches & staple removed. I still wasn't driving yet & had my husband drive me around for another week or so.

The biggest dog show of the year in Houston was 2 weeks post surgery. I borrowed an electric wheelchair to get around the show. Getting my stitches out + going to the dog show wore me out & I spent the next day in bed, but was back at the dog show (in my electric chair for the remaining 3 days of the show.)

Honestly--I spent a LOT of time in bed with an ice pack for the first couple of weeks. Not being able to eat much + surgery kept my head hurting quite a bit. My husband works from home, so I always had someone to help me out,if needed.

Four weeks post surgery, I was dring the 40 miles into Houston to attend dance class. (First time kicked my butt & wore me out!)

19

You have gotten a lot of good advise.
I was with my daughter 24/7. I have only the perspective of a parent of a child who went through angios and craniotomy.
Things I recall that were helpful- she had trouble getting comfortable- the pillows in the hospital are not as soft as you would like. We tried different air filled and gel filled cushions. for her it was particularly tough because she was post angio and craniotomy so she had to lay on her back right on the incision for hours. We got several soft pillows and she had a pillow pet that she lay on as well. We took a soft blanket from home, because the blankets in the hospital are never as cozy as we like.
We had to take the dressing off ourselves at home after a week- it was not easy- it was really stuck on- needed to use alcohol to release the adhesive. ARea of the incision is still (7 months later) sore- get lots of spray conditioner to easy the brushing process... even to the hair that is not shaven.
Maybe get a shower chair (rent) for home in the shower as you will be tired.
When people ask how they can help give them a job. "dinner friday would be nice...come take the dog for a walk each night for me..." people have good intentions and want to help but wont know how. Do not be shy about telling them...or have your parents tell them. my most favorite people were the ones who just showed up or were proactive, but you are entitled to ask for some company...esp plan for people to help out once your mom is not as available. Even just to hang out with you and be there so you don't have to shower alone in the apartment...
Good luck!

20

Some of the things I was thankful for after surgery after going home was there was someone with me pretty much all the time for the first week. I do not think I could have kept all the medication straight that I was to be taking. My family had a chalk board to keep it clear when what was due.
I pretty much stayed in bed or on couch the first week although did take some walks around the block very slowly with someone towards the end of the first week. My biggest problem was becoming overwhelmed with stuff. Seemed there would be to much stimualtion for me to handle. I learned to focus on one thing and not even try to look or listen to everything else that was happening at the same time.

My hair was shoulder length and because of the location (middle cerebral artery) I decided not to cut it. They did a great job just on the side of the head. I wore a scarf to cover the shaved area initially but my longer hair on top covered it up on the most part. They make a hair shampoo package that you can clean your hair with and not do in shower. I believe at ten days or so.. I could do my hair when I showered. Kind of handy to have someone around for that as I could not recall which way to turn the knob to make the water hotter, I couldn't figure it. There wasn't constant confusion it clears fairly soon and with time you learn how to deal.

It's good your mom will be with you but if she could stay for the first week would be better. Had my surgery on a Thursday and home on a Saturday and the next few days were good to have someone there all the time if possible just to keep things straight and you can focus on recovering. I didn't drive anywhere for a few weeks maybe it was a month.

I am glad that I had the surgery. Feel free to ask me anymore questions.