Headaches acrylic plate cerebral fluid

Hello

I am new to this forum, I come from the UK where I was told to live with my headaches and that there aren't any headache doctors. I was given paracetemol and codiene but know about rebound headaches and tried to take as few painkillers as possible.  Life goes on and I had to work, so managed until I got home, then crashed out. I had a good boss who let me use my holidays for sick and we had an arrangement where if I went to work and really couldn't cope, I could go home.

I have lived in France now for the last 16 months and the doctor here has put me on Topomax. I believe that my headaches are directly related to an acrylic plate I had inserted into my parietal bone when I was 10 years old. The sinuses were amputated and after the operation my forehead swelled up with cerebral fluid this went away after some time but ocassionally comes back.  The illness was a mystery at the time but my bone was wasting away, at first I was told that my bones hadn't knitted together from being a baby but the 'soft spot' got bigger.  I get constant headaches and have kept a diary and there doesn't appear to be a trigger. The top of my head is numb and sometimes pulsates. Sometimes I wake up with the fluid

on my forehead but my uk doctor told me that it was impossible to get fluid on you forehead!

I have tried propanolol but it didn't help and other painkillers which don't touch my headaches.

I also have a high platelet count which baffled the doctors but I found could be related to the disease that I had.  I finally got a copy of my notes from the doctors and it points to that I had unifocal Hystiocytosis.  I have had CT and MRI but they are normal 'for me' the doctor wouldn't elaborate.  I had eye tests at the insistence of my doctor and they are not the cause of my headaches.

The numbness is constant but the topomax has made it worse, I get difference types of headaches, some over my left or right eye, some on my forehead and some vascular from the base of my skull which radiate all over my head.

The first time I got the vascular one I thought that I really was going to die.  I still think that each time but, I've had them for so long now 40 years that I know I am not.

My UK doctors made me feel like a fraud and a nuisance.

My father rang me the other day and was alarmed as I seemed so far away and wanted to bring me home.  Since taking Topomax I have wet the bed a few times, I usually get up at 4am to urinate, but my brain wasn't telling me to wake up.  Topomax doesn't seem to suit me.

My painkillers at least send me to sleep, they don't kill my brain and slow me down.

I don't know what to do now.  I had worked up to 100mg but dropped to 50mg when I started just sitting staring into space.

Sorry for going on.

Any suggestions please?

Lynn

 

Hi Ann
Thank you for responding.
I know I really need to get of this drug and will be seeing the doctor soon. Since coming to France I have been trying to learn the language and have had some success but the headaches dominate the amount of time I can spend on doing anything. So here, there is a language barrier also. I am here with my partner and he loves it here but only speaks english and will not drive far, nor will he allow me to attempt to drive. I really don't know how I got into this. I have 'managed' to 'live with it' now I think I am going crazy. I don't want any more drugs that affect me in such a way.
Kind Regards
Lynn

Thanks again for your reply.

I had my operation in 1966.
My Plate makes creaking noises. My Partner has said he can hear it creaking whilst I am asleep. I sometimes think it is 'shifting' if you know what I mean.

Me and my Mum are petite 150cm tall and my Mum has a bad temper which is the only reason that I got the operation. We are from Yorkshire in UK and are working class and the pompous Doctor insisted that he was right. Under sufference they did a biopsy but found no evidence of any problems. My mum was having none of this and told them to to do another biopsy and said that she wasn't moving until they agreed. They agreed and a second biopsy was done. Shortly afterwards we received a telegram they needed to operate quickly!
I am not like my mum in temperament and give in, I have a daughter aged 25 and I know I would stick up for her but, I can't confront people and I feel intimidated by 'specialists'.

I am 51 years old and feel fortunate to be alive and am but a small pinprick in this world. But shouldn't I be entitled to quality of life. I used to read a lot and do needlework and really enjoyed it but at present I can't do any of it.

I can't imagine your suffering with the harvesting of the bone and having to go through what you have gone through.

My plate is methacrylate and I can not find the information relating to brittlenesss in the human body. I would like to know more and wonder if you could point me in the right direction on the internet maybe so that I could read up more.
What I have found horrifies me that the temperature of it gets very high and can lead to death of cells and tissues when applied. My hair follicles changed shape and some of my hair grows like african hair thick and wiry whilst the rest of it is fine and wavy.

I saw some students as the hospital that I attented was a teaching hospital and they were guessing that my body could be rejecting the plate or that there were maybe some damaged nerves or, maybe my (amputated) sinus were inflamed or maybe I should see a shrink! Really!
The original notes have been lost by the hospital and all I have is the notes from my general practitioner.

I do sincerely thank you for your input and wish I was as tenacious as you have been
Kind regards
Lynn

Thank you, I have found this to be helpful. Sometimes it is a problem because the searches on the internet pick up on the one thing you don't want it to.

I am interested that you are in class, I have always been 'greedy for knowledge' and I surprised myself by gaining a Certificate in Accountancy at aged 38. You are obviously very busy studying and I marvel at it that you have been through so much and are still studying.

I have recently done a cold turkey off Topamax and been ill and bedridden for hours at a time because of it but I wanted my brain back. I am going to refuse any other narcotic type drugs.

My approach to further 'my case' is to take a note out of your book and stand firm and positive, armed with as much knowledge as I can possibly glean from articles such as the one in your link. I have in the past written to neurosurgeons but, they always want a referral from my local doctor but I will find one that will take an interest in my case. It's just a case of perserverance.

You have made me feel that there is an end in sight to all of this. My partner has always insisted that it was stress or tension.....but I have always known that it was my plate...somehow you just know!

Thank you

Lynn

I have been thinking about my theories about how I felt when my plate was broke. I need to do some research brfore I post them. My last operation was in 1995, but the pain was severe and calmed down around 2002. I am loaded down with work I will post more later

Keep in touch

Nobody believed me eather!!!, and still - to this day disregard the fact my headaces still exist!!!

Hi

I have just noticed your post.

After suffering for years with headaches, I've just had a really bad bout. 2 days in bed one day not another two days in bed one day not, today in bed what will tomorrow bring. I'm beginning to think my partner thinks I make it up. Just lately I have taken loads of painkillers but they don't work only send me to sleep.  When I wake up they are still there.  Tried to come off them due to rebound effect but I need some relief from the pain. My quality of life is poor due to the headaches and I feel a nuisance or a hypochondriac or attention seeker?

I bought a book (expensive) which describes the brittleness etc of methacrylate but my partner says I shouldn't believe everything I read!  It is a professional neurosurgical book called Calvarial and Dural reconstruction.  I live in France now and the Doctor I see here wrote to a neurosugeon who says there is no problem with methacrylate. I am going to show him the book (but he is french and the book is in English) I am still trying to find someone who believes me or other documentation to back myself up.  Most researches are over a shorter time span than 20 years and report good prognosis.

I have thought of writing to 'cracked skull's surgeon just for verification alone. I don't have the address though.

I think the Doctor in France thinks I am a nut.

I do emphasise with you, can't your Doctor find out the materials used for your 'plastic plate'.

Kind regards

Lynn

Hi

Thanks for responding and letting me know how you are getting along.  I am pleased for you that you do not have siezures and I hope the massage comes out all right for you - if you can find a source.   I too prefer to be in the shadows so to speak and I am quite shy.  I stopped making an issue out of my headaches and seeing my neurosurgeon when I was told to see a shrink!  Privately I will never give up on seeking an answer.  I don't want to be cut open again but I want to know why I get the headaches and the cerebral fluid...that's all really.  I don't get migraines and would have had more sympathy from my place of work if I had rung in sick with a migraine but I couldn't lie. My headaches aren't the classical Cluster type or anything else that I have read up on about headaches, but I do have different types in different areas.  Some I can get through the day on avoiding painkillers but others floor me and I HAVE to have something. OTC medications don't touch my headaches at all.  I tried some a few weeks ago and had to suffer until the time had elapsed when I could take the Prescribed drugs. 

I have tried acupuncture but that is a long term thing and was expensive ... I had no pain relief from it and when I get the headaches I want relief yesterday .. if you see what I mean....I have tried self massage and relaxation techniques but to no avail.  The doctor put me on Topomax but it didn't agree with me and I was worried about the long term effects on my brain.  I am prescribed a high dose of paracodol which has not been proved to have an effect on headaches and is susceptible to the rebound effects...but they send me to sleep. Propanolol had no effect on the preventative side.  Yesterday I had a good day and felt energetic and took no painkillers.  Today I have been bad again but took no painkillers but feel terrible.

Funnily, I had a CAT Scan a number of years ago and the junior neurosurgeon told me I had no front to my skull and no sinuses (they were amputated) and that he had to operate immediately and put in an acrylic plate but would confer with the actual surgeon, who just said that if they open me up they could do more damage than good?  To me that indicates that the plate is invisible on CAT Scans.  They can see a few pockets of air (which is gas within the plate actually) and the edges of the bone around the plate but my original records were lost by the hospital and CAT Scans hadn't been invented at the time.  My plate is 40 years old, it creaks and makes noises but I feel no movement and am scared to even try to move it .. I know I am not going to die because of it.. but I still want answers...one day I will get some!

I do hope you are ok and if you find anything out will you please post.

Kind regards

Lynn

Hi

Hope you are ok!

Thank you for your post.  I will write to him for verification, I hope you don't mind.  My French doctor wrote to the French Neurosurgeon who says that there are no problems with methacrylate! So, my partner is happy!

Kind regards

Lynn

Hi,

Thank you for your reply...I know you are busy but did know that you occasionally checked in, so it was just a matter of time.

I have had it confirmed that I had LCH as a child and I am in touch with a UK LCH specialist who is waiting for me to arrive in the UK (I am visiting quite soon)

I also emailed everything ie emails from LCH specialists, emails from Dr. Adamson - I scanned in the part in the book regarding acrylic and sent my doctors notes to the Head Neurosurgeon in Newcastle UK who is also waiting for me to arrive in the UK.

I am 52 and have had the acrylic for 41 years. I am in bed most days with headaches - I haven't gone on to narcotics but I try NOT to go to bed but it knocks me down eventually.

Your words have inspired me, you have helped me a great deal.  My partner said "What if you go through all this and don't end up any better".

This is the reason that I tried to contact you and it certainly seems to be worth it for you, I have no doubts now.

I am glad that you got your life back and hope it works for me too.

Thank you for your contact details - I will keep in touch.

Best wishes

Lynn