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This is my first post so grateful for any responses. I had craniectomy/cranioplasty three ago - 27/4/18 to remove large lump on frontal skull ( behind hairline not forehead) and suspected meningioma of brain) the mengingioma lab results were given to me Friday (benign) the skull results are still awaited (due to size of lump and the tests required on bone) saw my consultant happy with scar and my fluid had drained completely a week or so earlier.
On Saturday morning 19/4/18 I awoke to find my head full of fluid again and my scalp visibly moving ( I can feel it move too) as I moved (visible to family) I stayed upright for 7/8 hours and it seemed to drain. I then had a nap in a slightly elevated position for 90 mins and it returned. It is now 2am the next day (20th) I can barely sleep for concern but I have felt my head, which had drained at 11pm and it has filled again. I have taken a video for my surgeon but as this has just started can anyone tell me is the normal? Should I be concerned? My googling has returned EFC - extradural fluid collection and CSF Leakage but don’t know what to do
I had a craniotomy for meningioma 3 years ago. I remember the flap on my skull feeling very ‘spongy ‘ to the touch and was also concerned. I’m not it sure it was as much as you described though. It lasted for a couple of weeks at least. I would go and get it checked out as it’s such a scary time and you need some reassurance.
Yes you have described exactly my experience for the first 8-10 days or so then all normal to the point I could see the slight font and my consultant commented on Friday 18/4/18 all good!
The sponginess has now occurred on two recurrent nights and one afternoon nap and if I then sit upright for 6-7 hours it seems to drain away. I will call the hospital. Thank you for reply it is really appreciated
Did the hospital give you a number to call if there were any issues? If not I'd agree that you need to get this checked out as soon as possible. Googling however tempting often just causes more anxiety.
Thank you Trudy
Yes I am calling the hospital now. Thank you so much for replying
I am back again to the forum no further forward and still every night the fluid comes and drains in the day. It is really now getting me down... the hospital tell me if not gone in 6 weeks then contact us... they state wound in dura possibly! They do advise what the alternatives to possibly are and now I am going backwards physiologically with what looks like a large growth the span of my scalp which moves in waves when I walk and makes me feel very uncomfortable when in public... it is really dragging me down and I so want to know ... it will last for X weeks or we will do Y to solve it... but I just cannot get an answer
Thanks for reading
Well week 11 after intraosseous meningioma debulking and cranioplasty and still massive fluid collection under my scalp every morning which takes the whole day to drain.
i am very very keen to hear from anyone who has experienced anything remotely similar. PLEASE!
i am very new to this site as I have only just been diagnosed with a Intraosseous meningioma which is in my Petrous apex which is an area behind my ear. I have struggled to find my information about this kind of tumour or anybody else who has one. I am awaiting a CT scan and to see the neurologist in two weeks to find out what plan he has for me and I have so many questions to ask him as I was informed by a letter never having met him.
i wondered if you mind sharing your experiences and what you have been told about this rare kind of meningioma? NHS choices, Macmillan and the Brain tumour charity don’t have any information on their site and I am trying not to Dr google stuff on the internet.
i hope you are feeling well and recovering from your surgery.
i was diagnosed with an intraosseous meningioma last January although the tumour invaded the whole of the top of my skull therefore I had a full craniotomy and cranioplasty. It took me around 10 weeks to feel normalish... and I have since had two scans on the tumour that has completely blocked my Sagittal vein.
The remaining tumour has not changed in 6 months - yee ha- but I do still have problem with fluid leaking through a wound in my brain lining.
It is a traumatic experience especially for your family as the closer I got to surgery the more I respected being in the hands of a brilliant truly brilliant surgeon.... and what will be will be set in. It has changed my attitude to life and an experience which I have grown with. The surgery is not painful and the pain afterwards is around the wound but they do amazing things with fantastic pain control. My tumour was benign as they said 90% are and that was a massive relief... I hope your journey is similar. You are in the extreme worry and self organisation stage and I was in this for three months, I managed by getting organised ... my family my business my world all in order... just in case , because I did not want my family to be burdened.... all unnecessary in the end but I am still pleased I did it... I wish with all my heart the same outcome for you...
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