Craniotomy.....the recovery..help?

[Doodles]

Hi all,

I FINALLY had the craniotomy, due to SAH previously Jan 2012 coiled but had moved so they wanted to clip, on the 14th May 2013.{should have been done end of Jan-staffing issues im told}

All went well im told and I was home on the 6th day after horrid staples taken out! Ive had no hair cut, fabulous surgeon!!

So....at home im resting, doing what has to be done cooking and washing...everything just makes me shattered!

Id like anyone to contact me for the after surgery info please any comments will be gratefully accepted.

I was cut left side of head, i get a fair bit of pain and taking meds still 4 times a day is this usual? The left side feels frozen, i cannot move my left eyebrow up, is this normal?

Jaw hurts so I have to be careful as to what I eat as I cannot open my mouth so wide? If all of this is normal when does it go, leave fade out, feel better.....?

As ive read many helpful stories on hear I drink LOADS of water, sleep on 2 v-pillows, this is certainly fabulous for me.

As they let me out of hospital with NO INFO AT ALL and did not tell me anything to expect etc.....but this site is MY ONLY saviour and I will check back on perhaps later tonight or tomorrow for any helpful insights.

Im a super positive lass as ive had to be so anything at all will help.

Im now on SSP so totally upset as regards to money, just had my 1st wage and received less than my niece who works weekends only!!

The eyebrow thing is freaking me out so any advice would be fab!

Thanks muchly my kind and knowing folk!

Doodles

[goldfish.girl]

Hi Doodles,

I haven't been clipped (I was coiled twice) so can't offer any info. But wanted to wish you well with your recovery. It must be a huge relief to have that over with at last.

I'm sure some of the other 'clippers' will be along to offer support on post op recovery soon.

Michelle x

[Daffodil]

Sorry Doodles, another coiled person but I did have surgical recovery post shunt insertion which might be a little similar I think. Masses of staples and blooming horrible head pain.

My head on the side of the op felt very numb for quite a while and in fact is still numb around the scar and my jaw kept locking for a few weeks after My team put this down to the breathing pipe whilst you are under general , your jaw can be placed into a pretty unnatural position during placement apparently. Dainty chewing was the answer as you have already found out. The healing brings with it some strange sensations, tingling and stretching but that is normal so try to take your pain relief and not worry too much.

Well done you. It's so hard to go back when you have come so far and I'm sure that felt awful to be back in hospital and now have this new recvery stage but it's done now which is a very good thing ...so onwards and upwards eh?

Some actual clip experiences and recovery tips will follow I'm sure. sleep tight.

[Gill C]

Hi doodles, I was clipped & for sure the jaw pain is normal as they cut through the muscle to the jaw during surgery. it does ease off. Yawning was painful in the early days so try not to worry about that

As for head pain I used to get a creeping feeling & my scar area was very itchy as it healed. I wanted to take my skull off & just scratch myself to bits! Oh & the staple nearest my ear was always the most sore & itchy too

I didn't get numbness on the right side of my head after surgery but did get numbness after a dental visit which involved taking out a tooth on the right side at the top. The feeling did gradually come back & now my face feels absolutely fine!! I also remember scar tenderness & I still get tender spots on my skull related to the surgery but nothing that paracetamol can't fix. If the pain continues & you need painkillers then its worthwhile contacting your neuro nurse if you have one just to get it checked out & make sure there are no signs of infection or swelling.

There really isn't much info given out when you leave hossie although the Brain & Spine foundation do do a small booklet which talks about sah & the operations that there are. In reality its the odd feelings & up & down emotions which we need the most help with but as we are all so different its not easy to quantify what 'recovery' is for each of us. This is def the best place to get info from so keep on asking questions & we'll do our best to help

Take care hon xx

[Doodles]

Thank you ladies for your very kind and informative replies, I shall indeed await the reply from a clipped person.

But Gill you have indeed helped on a few parts. I do indeed have other stuff going on but I simply mentioned the most challenging.

[lisac]

Hi Doodles, I had a craniotomy about 1 1/2 ago for a SAH. The eyebrow/frozen face is absolutely normal. It will get worse before it gets better. They cut through nerves and muscles and some will die which might cause muscle atrophy which for me caused a slight dip on the outside of my eye. I also noticed that for a long time one eyebrow was higher than the other. That leveled out with time after the skin that was pulled up and stapled relaxed. For me, the constant changes and feelings in the scalp were scary after I got home from the hospital. Luckily, I found this site too and asked a lot of questions. I was also released with no instructions other than to contact them if the incision site looks red or infected. You might notice that as the weather warms up, your scalp will feel tight and that eyebrow will feel like it's

being pulled up. Just remember it's normal and it will get better. Please keep asking questions if you're concerned.

Also, the jaw pain is normal. As someone said, they cut the muscle and it will take some time to heal. For me, it's back to normal.

[Doodles]

Hi Lisac

Thank you so much for your reply, im so glad hearing what you have said about the eyebrow, time for me not to panic, got loads of weird pains, movements etc...but this I know is normal. May I say from your photo you look super fabulous!

The warmer weather is making the itching worse but i will not touch. Im showering with washing hair every day and hope some day the blood etc will leave me.

Shattered im shattered and I know to rest and hope for the best, im hoping to be able to drive again by December, FINGERS CROSSED!!

Anybody else please feel free to comment.

[lisac]

Hi Lisac

Thank you so much for your reply, im so glad hearing what you have said about the eyebrow, time for me not to panic, got loads of weird pains, movements etc...but this I know is normal. May I say from your photo you look super fabulous!

The warmer weather is making the itching worse but i will not touch. Im showering with washing hair every day and hope some day the blood etc will leave me.

Shattered im shattered and I know to rest and hope for the best, im hoping to be able to drive again by December, FINGERS CROSSED!!

Anybody else please feel free to comment.

Hi Doodles, Thank you! It took awhile to get feeling and looking better. Please feel free to msg me if you want to talk more about it. I know the scalp stuff can be rough and scary. After 1 1/2 years, I still get twinges of fear. I was running the other day in warm weather and my scalp tightened up and started giving me weird sensations. Freaked me out because I hadn't felt that feeling all winter. Once I remind myself, it's just my scalp and not my brain, I'm ok.

[cheezo]

Hi doodles. I had mine clipped 4 wks ago tomorrow so its all very new to me too- mine is on the right side and i now have a haircut like phil okey from the 80 s haha. My scar has healed pretty well but is really itchy- the area feels really numb which i hate- my eyebrow is fine but it feels like i have a lump at the hairline which is quite sore- oh and my jaw gets really sore when i chew or yawn omg sooo sore i do hope that goes back to normal

Do you ever feel like your talking about someone else? Im still in shock that i had an sah i wonder if that feeling ever goes

Soooo glad i found this site because like so many others i was given no info when leaving hospital

Lesley xx

[goldfish.girl]

Hi Lesley,

That feeling of shock does go. I didn't find BTG until almost 2 years after my SAH & it was such a relief to realise that I wasn't weird or alone in how I felt. I think it's great that so many people are finding this site so early on. It is a huge help in understanding how you feel is not unusual.

I clearly remember driving home from work 6 months after SAH, having been in denial since the event & sure I was absolutely fine, just a bit tired. I passed the local park, which is always so pretty & from nowhere thought 'oh my god I had a brain heamorhage'. No idea where the thought came from or why 6 months later but I know it left me almost winded & in shock with disbelief at the time.

It's not shocking to me now. It happened, it's over (kind of) and holds no significant shock or horror any more. It's just something I can think about as a past tense happening. I deal now with what it left behind but the SAH itself is a distant memory. It takes time to feel that way but you really will in time.

Michelle

[Doodles]

Hi Lesley

Im similar in time then, have an appointment with a clinical psychologist today {first time leaving home since op} and im not sure what to expect. I did complain in hospital as regards to the care I had with my SAH last year as in no info!!!! My employers now actually think this operation was a cure and ill be all better to back and work full time, ive only been doing 22 hours and quite frankly and shattered. All the problems i suffer from and GP cannot do anything!! Ill post later to update on the visit. My scar is itching and seems to be healing very well, I had no hair removed so my surgeon was fab {I had requested no hair taken} difficult as I now have blood etc stuck in my hair, I shower and wash hair each day.

I cannot seem to do much in the house, ie cleaning etc as I just ger too tired and dont seem to have the get up and go as yet.....resting is the answer!! Im so glad I found this site last year as it HELPS with all aspects of life and recovery.

[cheezo]

Michelle thanks for that- its good to know that in time the event should hopefully take a back seat .

I found the site early on because NO support from hospital after i was discharged- not even a leaflet (they were fabulous when i was in i have to say) i just thought there must surely be something so typed into the computer and found a few forums and this one looked great it has helped me already thank god- i might have gone bonkers otherwise and its only been 4 wks hahahah

Thanks lesley xx

[Doodles]

well.....my visit today...she didnt even know i had surgery, this was referred by my doctor about the SAH in Jan 2012!! She was a lovely lady and explained my anni was on the main artery and im thankful to actually to be alive! She says I need a cognitive test for all the problems ive been left with....all those that are common with us all....language, memory etc.....going to do it next month and that will then at least PROVE to my employers I do have issues and its not simply based on what I LOOK LIKE!!!!

Anybody else done test, or had simlar help etc??

As I feel ive learnt so much from this site, its helped me deal with it emotianally etc and my daughter has kept me going....ive probably taught myself lots of stuff to help me in many ways, due to the time etc....

I did tell her that the care for ourselves that have suffered SAH is POOR, I wasnt give any insight into the things I would suffer from when leaving hospital, they should really just give everyone this site name!!!

Thanks all xx

[goldfish.girl]

Hi Doodles,

I have had enormous help from a neuro psychologist & also did the testing. It is very helpful in highlighting which specific areas are a problem for you but I was told that the testing is best done after a year or so as your brain is still recovering. I can't remember when your SAH was - I think it WAS over a year ago???

After the testing, the focus was on ways to help me work around the problems as much as possible, which again has been really helpful. It's often been really simple things that I hadn't thought of myself. It doesn't make the problems go away but gives you a chance to minimise the effect they have on your day to day life.

It'll be interesting to hear how you get on.

Michelle x

Sorry Doodles, I can see now that your SAH was in Jan 2012. I missed that as I read your post

Edited June 7, 2013 by goldfish.girl

[Doodles]

Hi Michelle

Thanks for your reply, she was a little startled that I had only just had surgery as it wasnt on her notes. So she said to wait till end July for test etc.....she explained a lot and id told her what i thought my probs were, and how i try to deal....but 'abnormal' has been made 'normal' for me now....nothing will make the problems go away but they may help me a little so ill take anything I can!!!

I shall update after test etc....

[goldfish.girl]

That would make sense Doodles as although your SAH was last year, your poor brain has only just gone through another massive trauma with clipping.

Both my coilings were done within 12 weeks of each other & the testing was almost 2 years post SAH.

It's good to have a Dr listening to you & taking action to help. Good luck with the tests & enjoy as much rest as you can until they start

Michelle x