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Posted

Hi,

I was just wondering if anyone on the forum had/has a lump like mine & how long it took to go down?

After the crainiotomy my wound site immediately filled up with CSF and although it has been drained twice (and tested for infection) it filled up again. My surgeon just said it will go down in time. I am not ashamed of it, it's kind of like a daily reminder that I am a survivor but ...

Does anyone know a rough approximation of the time it will take to go down? I had my SAH on NYE.

Cheers,

Leo xxx

Posted

Hi there Leo I have a lump on the one side but it's where my bone ain't gone in far enough unless it was the other side being put in to far but mine have been here for 5yrs so i guess it will stay like it. Jess.xxx

Sorrt I couldn't be more helpful.

Posted

Hi Leo

I had a crainiotomy and my scar line can feel bumpy and lumpy at times were the bone moves about a bit but no permanent lump as such.

Janet x

Posted

Hi there

I had a new kind of craniotomy style op called SOMIC - basically a keyhole procedure (using a ****** big key!) with a c. 2inch cut and some skull removed, then replaced post clipping. I had this done twice, once post-SAH and I still have a small lump where the stitches were tied off (sept 06) and then again, Oct 07, to clip a second aneurysm - no lump. However i do have a lumpy skull around both scars but mainly number 1, which can change daily - some days very lumpy, others not at all and particularly lumpy after flying. My consultant says he's never heard of this happening before but I am walking, talking proof that it does and quite visibly too! Wouldn't go so far as to say Elephant Woman but definite changes of shape. None of this causes any pain, though, and both scars hidden under a fringe......

Sarah :roll:

Posted

I had a craniotomy. scar runs from in front of my right ear up and over my eyebrow, it is fairly bumpy and lumpy and my skull feels a little battered but doesn't look too bad.

I had 4 large swellings in the first 7 months after the op, these all turned out to be foreign body infections and in each case a large ( 3-4 inch) piece of stitching popped out. I mentioned the first at my initial follow up with the surgeon at 3 months,his initial reaction was a muttered "Oh Sh** , which didn't do much to inspire confidence :wink: however all turned out okay in the end. Indeed once the last stitch surfaced the scar settled down and has been no trouble since.

Posted

Hi Everyone,

Sorry for the delay in replying but I have been a bit too tired this week to turn the computer on as I had my first venture out into the local High Street - funny how I'd never noticed how loud everything was before!

Thank you so much for your information regarding the bumps and lumps we all seem to have. it's good to know that I am not alone even though the causes cited by the various suregons seem so varied.

You are all an inspiration to me!

With love and hugs,

Leo xxxx

  • 2 weeks later...
Posted

Hiya,

Thanks for all of your replies once more. My GP wrote to my neurosurgeon and this prompted him to telephone me last week to set up an appointment with me out of clinic times, on the ward. He now wants me to have a CT scan to find out if I have a small hole in my skull which may be the cause of the lump. If the hole is there and is still open I will have to have another operation to seal it up. If it has already healed then my lump can be drained again - possibly third time lucky!

But it is thanks to all of you who replied to my posting that I realised that my lump whislt not exactly rare, was uncommon and that is why I raised the issue with my GP.

Thanks again,

Leo xxx

Posted

Hi Leo

My scar is a bit lumpy, but I have a metal plate and srews there also, so could be why it feels strange. I am lucky because it is from the top of my right side of my head, finishing in front of the bottom of my ear. My hair covers most of it.

I am glad you have an appointment to check this out, hope it will all be sorted for you.

I remember when I first went out, it is a very weird feeling, I still cant hold the phone to my ear for long, use loud speaker!

Things can only get better :D

Take care

Tinaxx

Posted

Thanks Tina, I too believe that things can only get better. My scar is mostly in my hairline too. I can brush my hair over it but then it looks like I am trying to be fashionably seductive ... in the garden! :lol:

Posted

Hi Leo

Nothing wrong with that!! :D Roll on summer, the sunshine always makes things better, and might be able to get in the garden without being rained, hail stoned, or thunder stormed on :lol:

Take care

Tinaxx

  • 3 weeks later...
Posted

Hi Leo

How are things? Have you had your appointment yet? Really hope you do not have to have another operation, will keep my fingers crossed!

Take care

LoveTinaxx

  • 2 weeks later...
Posted

Hi Tina,

Sorry it has taken me so long to reply but this week wasn't a good one. Tiredness & stress led to my headaches getting much worse than they have been for weeks.

I went to the hospital to see my consultant but he didn't see me - I was seen by his registrar - his junior. The hospital has lost my file (my Dad's went AWOL once for 6 months but they finally located it) but my scans were on computer. He said the scans didn't show my skull or the second aneyurism because it wasn't the right scan. He then asked my mum if the swelling looked OK to her and she said she thought it had gone down. The truth is I have put on so much weight my family cannot really be impartial judges of that. The registrar then said "Mum's know best" and said they would see me in 6 months time. I was really mad. I want a new scan but have to manage the situation with tact and charm. But if I was well and running at 100% brain function I wouldn't have left the hospital without an answer. As it was I just jind of retreated into myself (stupid, stupid) and allowed myself to be fobbed off.

That evening I looked my surgeon up on the internet, found his email address and darfted him a letter cataloging my concerns. I didn't send it until the next morning after ringing the hospital to make sure I had the correct email address.

The result of my email has been many phonecalls between myself and two neurosurgery secretaries. One of them even asked me how the swelling under my eye is! The constant strain of trying to get a sensible answer plus a death in the family last week & my own fathers ill health (cancer) have really wiped me out and I haven't been very smiley this weekend. The secretary told me to phone back on Wednesday after the Bank Holiday. But I feel I am fast running out of fight. Maybe it'll come back once everything settles down but for now I can hardly think straight. It has taken me three days to type this.

Hope you are having a lovely weeknd & that my grim experience hasn't made you feel down,

Love Leo x

PS: I suppose the only good thing to come out of this is that I have finally acknowledged that none of my clothes fit and that I need to join a gym!

Posted

Hi Leo I hope you get some sense out of someone soon the registrr who saw me was an idiot aswell he said right then we will see you next yr I said you won't and that was the last I saw of him did go back to show the neurosurgeon my baby though. Hope you get answers soon. Jess.xxx

Posted

Hi Leo

I am so sorry you have had to go through all of that!!! When you are not feeling well, and worried,plus the worry of your Dad and everything else. I really hope they find your notes and they get there act together, what a b....y nightmare. No wonder you have not been very smilely recently. Make sure you dont get fobbed off, write down everything you want to ask and take it with you, hopefully you will get to see your surgeon!!!

Take care, look after yourself and try not to get too down, easy to say I know,keep on the case and hope you get some answers. Stay strong. Bless you.

Keep in touch.

Love Tinaxx

P.S. if it is any concellation[spelling?] I have put on a stone and having trouble with my clothes too. I know it gets you down, but worry about getting well, then about the weight later. Also my GP still has not received my notes from my surgeon, and it has been nearly 6months, and at least 2 chase ups that i know of!! The system stinks! Hope your headaches get better very soon, try not to stress yourself, take care.

Posted

Thanks Tina and Karen, I hadn't heard about that website but will be sure to look it up.

My family probably think I am spending too much time finding stuff out about SAH & after effects but I LOVE THIS WEBSITE for all of the information and experience sharing. It definately feels like I am no longer alone.

You are angels,

Thank you so much.

PS: Does anyone else get rather emotional at the drop of a hat??

Posted

Leo,

I will pm you tomorrow. Take care matey. Yes I cry at everything! Stephen told his wife how much he loved her at the weekend on here and i cried loads at that!! I promise I will pm tomorrow, had 2 glasses of wine tonight so am too tired too type properly!

Love and hugs

Laura

xx

Posted
Leo,

I will pm you tomorrow. Take care matey. Yes I cry at everything! Stephen told his wife how much he loved her at the weekend on here and i cried loads at that!! I promise I will pm tomorrow, had 2 glasses of wine tonight so am too tired too type properly!

Love and hugs

Laura

xx

I've had a bit Laura...it helps sometimes. Take care...

Phil

xxx

Posted

Thanks for all of your messages of support. It has been a real help to know that patient notes are lost on what seems to be a fairly regular basis (not good but I no longer see it as a personal slight!) & that I am not alone in thinking that outpatient appointments are sometimes less than satisfactory for the patient. Who are those 12 year olds pretending to be registrars?? :lol:

I am now due to see my neurosurgeon on Monday afternoon and will write a list of my questions down so I do not forget anything.

Have a great weekend everyone,

L xxx

Posted

Hi Leonie

I hope all goes well on Monday for you, and that you have a great weekend :)

Take care

Love Tinaxx

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