Craniotomy - the unexpected

[jo1970]

Hi Everyone,

I joined this site about 3 months ago and posted my story about my SAH 5 years ago. Since then I developed another anyersm and was waitining for a coiling procedure.

To cut a long story short I ended up having to have an emergency crainiotomy and it has turned my world upside down.

I was not at all prepared to understand the after effects of this operation, as to the pain and how bad I looked for weeks after it, I had it on the 19th September. I still feel really down and am wondering when the pain and sometimes eye swelling will go.

I would really appreciate some advice and sharing some of your events.

Thanks and hope you are all doing well

Jo xx

[donnamarie]

Sorry jo icant help i only had coiling done. but im sure someonewill be along soon take care donna

[Gill C]

Hi Jo, I had clipping but ws very lucky to ahve very little scarring or swelling after the op. I had 38 sples in from the midle of my forehead to my ear & the one by my ear was the most sore, plus the msucle in your jaw healing back was sore too. I don't get scar pain really but I do get an itchy scalp & tickling inside my skull.

If you are having pain from rhe scar itsefl it may be worht hving it checked out to make sure you haven't got an infection. It might help with the swelling/bruising to take arnic tablets as this can help relieve the bruisng faster. I think because of the situation of my anni there wsn't a lot o pushing or pulling to get to it hance the lack of bruising.

Yes the look of the scar & the stplaes is hoeeible, I refused to look in the mirror for ages but it does heal suprsingly fast & now my hair hsa grown back it's hardly visible.

Hang in there hon it does get better ut if you ahve any concersn speak to your GP or neuro nurse

xxx

[jo1970]

thanks for the reply, I have my scar in the same place as yours i had 45 staples. When my family came to visit the said they had no mirrors in their bags and I could tell by their faces I looked awful. When I finally managed to look in one I nearly fainted!!

My jaw has healed nicely its just the top and near to my ear that hurts I got a fringe put in to hide the scar. Did you have any problems with your eye? Some days mine is very squinty.

Thanks

Jo

[Gill C]

my eye was squinty before the op as I had a 3rd nerve plasy, the anni was prssing on the nerves to my eye. I hda no muscle contol of my eyelid & my pupil was very dilated & didn't move with my left eye at all so I had double vision. I can now open my eye & it is beginning to move in some directions but the pupil still doens't repsond to light & is dialted.

If you check out the gallery both Sally & Tina have pics of their stplaes/scars in there. i was too horrifed by my appreance to take a pic of it but now I widh I had taken one just to show other people what it was like!

Edited December 14, 2010 by bagpuss

[jo1970]

yes I wish I had too but was too upset. When my little boy who is 6 saw me he ran away and cried and when he pulled himself together he said "never mind mammy at least you don't need to dress up for halloween!!!!"

I will look at those websites you told me about

Thanks

[JayKay]

Hello there! You poor thing! But don't worry, lots of us here have been through the craniotomy and subsequent pain/swelling etc. I had a huge lump which was a CSF leak on the side of my temple for 6 months but it finally went. I looked like the elephant woman lol. There are pictures on my blog, and you can read my journey here if you like: I know when I first had my SAH and craniotomy it really helped to read the story of an American lady who blogged about hers. That link takes you to every post tagged "the brain thang" lol.

Well, I've now passed the 10 month mark and I'm feeling so much better. For the longest time I didn't feel like there was a light at the end of the tunnel, but don't worry, there IS! I hope you get some peace of mind by chatting to us loons on here. Take care x

[jo1970]

Hi there,

I will definately look at your journey, I have been wanting to come back on here for ages but been too busy feeling sorry for myself but I can honestly say thanks for all the support I feel so much better!!!

Jo x

[Tina]

Hi Jo glad you came back....what a shock for you! Your eye may be sore for quite sometime.

I still get pain around my eye, side of face and forehead. It gets bad if i am tired or if i get cold.

The swelling round my eye and face also took a good 6/9 months to go down. Its very early days for you. Rest up, drink plenty and keep in touch...take care Tina xx

[Janet]

Hi Jo

I had my craniotomy 4 years ago and it will get better slowly with time. I do now always have to wear hats in Winter and on bad days can still get eye pain quite badly but mainly when I overdo things. I have been left with permanent nerve pain from a thought trapped nerve inside my head but the actual scar site is still numb and tingly at times. Thankfully the creaking has stopped I think that was probably the most scarey thing during my early recovery. As some of the others have said if you are at all worried speak to your Doctor or Neurosurgeon.

[Grace]

Hi Jo,

I totally understand about getting an emergency craniotomy. I had mine in Mar 2010. I then had a second (elective) craniotomy in June. After the first craniotomy, my left temple was quite swollen, I got severe itchiness on my scalp, and pain on top of my head. This all basically went away after a few months.

After the second craniotomy, I told people I was ready for Halloween. My right temple was severely swollen, my right eye was swollen almost shut, my right cheek was larger than my left and I had severe red bruises running down my neck. I also got the itchiness and pain. I still have some itchiness and pain, but again, it took a few months to look “normal”.

Now I find that when I first wake up, the top of my head feels “tight” but that tends to go away quickly.

Take good care of yourself and good luck.

Grace

[jo1970]

Hi Tina

Thanks for the reply hope you are well. I partly blame my stressful job for my illness and I am returning in the New Year I am really dreading it. I am only going part time but my scar twitches at the thought!

I have a check up on the 10th Jan so have lots of questions for my nurosurgeon. Well I am off to wrap some presents my partner oh now husband to be (we got engaged a few weeks ago) is out doing my Christmas shopping.

Have a great weekend

Jo xx

[jo1970]

Hi Grace,

What a brave lady!!! I really dont think I could face another one. I feel a lot better since I came off the tramadol medication, it sent me so loopy!!!!

Fingers crossed you are ok now and can dress up for Halloween in future.

Jo x

[kempse]

Congratulations on your engagement Jo!

I hope your return to work is not as bad as you expect - whilst I didn't have a craniotomy I can relate to the twitching in the head when anxious!

All the best,

Sarah

[Tina]

Congratulations Jo on your engagement.....really hope all goes well for your return to work. Take care love Tina xx

[Lin-lin]

Hi Jo,

I did not have a craniotomy, as I had a coiling procedure 12 months ago following my SAH.

After reading your post, I wanted to send you warm wishes, despite not being able to advise you specifically upon your recovery. Your story struck a chord with me and I felt the need to contact you.

I hope your return to work is as comfortable as possible, but ask that you put your health first. Listen to your body, especially the little indicators it gives, like tiredness! We try to override fatigue when recovering from ill health, but it's nature's way of getting us to slow down.

I hope the next few weeks progress well for you.

Lynne xx

[Neil]

Hi Jo,

Glad you popped up - you're certainly among folk who really do understand!

Couple of bits of advice for you:

#1

Getting engaged is FAR more important than going back to work - the former will last you forever, you can always find a better job when you feel ready. Certainly don't let anyone at work push you more than you feel comfortable with.

#2

Yup, you'll have an itchy scalp now and then, but the horrible clicking will go away as your skull heals up (as will your bruises and such) and before you know it, you'll be looking back on all this and thinking much happier thoughts

The worst outward effect I had after my craniotomy (apart from bruising) was that my right eyebrow refused to move. Very odd, but was handy for Roger moore impressions!

It has since started working again though so I guess I'll never be the next James Bond now.

[jo1970]

Hi Sarah

Thanks for that I just need to keep doing the lottery hope your well

Jo x

[jo1970]

Hi there,

Aw thanks for the warm wishes all this has taken its toll on me I can tell you!!! This site has really helped me it honestly has. I hope you are well now and wish you all the best for the future.

Hope to get to know you better

Jo xx

[jo1970]

Thanks Tina have a great Christmas!!!!!!

Jo xx

[jo1970]

Hi

Yes living life is much better than worrying about work!!!!

My eyebrow wont move either, my consultant recomened botox but when I went they wouldn't do it!!!!!!

Hope your well

Jo

[Skippy]

Hi Jo

Welcome back and congratulations.

I had coiling rather than clipping so I can only sympathise with what you're going through. I'm very good friends with Janet on here and she had the clipping, and if Jan's anything to go by, you'll be fine.

As for feeling sorry for yourself? You're allowed to - I think we've all earned the right to on here

Have a lovely Christmas and New Year

[JayKay]

Glad to be of help! Tell you what though, i wish the damn clicking in my skull would stop - it still does it nearly all day, every day - 10 months on!

Keep smiling!!