Headaches acrylic plate cerebral fluid

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ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/8/2008 1:14 PM (GMT -7)   
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
 
 

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 1/8/2008 4:47 PM (GMT -7)   
Hi Lynn,

Welcome to Healing Well. Sorry to hear that you have gone through all this pain for so long. Your Doctors in UK are completely nuts they obviously have no idea. Where ever you are now you need to see a Neurologist who is a Headache Specialist to help you find the best way forward as Topamax is obvioulsy not suiting you!!!! It didn't suit me either!!!

It has taken 30 plus years for me to be properly diagnosed so hang in there and get yourself referred to the Headache Specialist!!!! Please let me know how you get on.

take care

Ann
Co-Moderator of the Migraine/Headache Forum


ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/9/2008 3:04 AM (GMT -7)   
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

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/10/2008 11:16 AM (GMT -7)   
Thank you so much for this information, my specialist also told me that acrylic would outlast bone. I know that the acrylic doesn't show up on scans and always wondered how they knew that everything was 'ok for me'. I went to see my specialist about the fluid and I left in tears, as I have done many times after seeing the doctor. It is so frustrating.

Did you also have trouble with Cerebral fluid?

Was your acrylic plate replaced?

Sorry for bombarding you but I have never spoken to anyone else with an acrylic plate in their skull before now.

Kind regards

Lynn

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/11/2008 12:54 PM (GMT -7)   
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

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/12/2008 4:58 AM (GMT -7)   
Thanks again for your reply.
 
In the UK it is like a the health service is like a secret service and patients don't get to see their film - I had to fight to get my records from the local doctor! How I could get the film I just don't know, even so I live in France at the moment!
 
I had one CT scan and when I went for the results the 'trainee' told me that I had no covering on part of my skull and no sinuses and that I needed an acrylic plate....what?, I already have one!   Then he told me to wait for my specialist who said everything is normal 'we did a good job'.
 
A few years later another CT scan noted a few pockets of air within the acrylic flap!
 
Could you please help me to find the documentation regarding the reaction of acrylic in the human body, then I could maybe use this to back myself up, and give myself the confidence to stick up for myself.
 
Kind regards
 
Lynn

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/13/2008 12:54 PM (GMT -7)   
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

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/14/2008 3:38 AM (GMT -7)   
Thank you for your reply, I too have always tried to keep off the medication, but my partner tells me to give in take a pill and go to bed. When I was working I couldn't do that and I HAD to manage. I am not working at the moment. I know I was risking it going cold turkey but, I figured that I couldn't feel any worse the headaches were getting worse, not better, and I am glad that I did it because I can feel that I am coming back to me. I am more resolute now, more positive and it is mainly due to the information I have received from your husband.

Kind regards

Lynn

CrackedSkull
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/17/2008 7:00 PM (GMT -7)   
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

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/18/2008 12:49 PM (GMT -7)   
I realise that you are very busy and thank you for replying.
 
My partner has always tended to self diagnose me as having stress and tension and doesn't believe that it is my plate.
Having no real history of how my operation was done, with cold cured or heat cured acrylic, I don't know how I am going to convince him.  I had an enormous bone defect and it was filled with methacrylate.  I can feel fingerprints and have 'edges' around part of the site which are painful to touch or lay on.  I don't play around with it as I think that there are trapped nerves.  Behind my hairline my head is bumpy and the last neurosurgeon said it is a fixed plate.  My partner said they will have used a mould but I can't see how they would have had the time and why would they say it was 'filled' with methacrylate. After my operation I had a plaster cast on my head which looked like a crash helmet with a chinstrap.  My forehead had a very big swelling for months afterwards, there is a photograph of me with it plainly visible.  I am worried that no-one will take me seriously but I am researching and trying to find out the methods of 1966. In 1967 wire mesh was introduced to try and strengthen the methacrylate.  Methacrylate is used on the injured soldiers in Iraq even today.
 
Still researching!
 
Kind regards
 
Lynn

CrackedSkull
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/22/2008 11:15 PM (GMT -7)   
Nobody believed me eather!!!, and still - to this day disregard the fact my headaces still exist!!!

research_babe
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/28/2008 8:58 PM (GMT -7)   
Oh, my goodness!  Around 1990/91, when I was 14 years old, I had a bone turmor removed that was replaced with a "plastic" plate (that's what they called it). The tumor was in the left frontal skull plate near my hairline and about the size of a quarter (smaller than both of you, I guess, but never-the-less...) I remember being told to take it easy until it had cured- not to jump out of a plane or go horseback riding or play contact sports because there was a danger of it cracking and splintering all over my brain and causing permanent damage if I was struck there.  Well, I didn't have any incidents with it for a very long time- years, I'm sure, so I figured everything with it was okay.  However, I suffered from occassional classic migraines since I was about 21.  Now I am 31 and just recently started having different but in a way, more severe episodes which were diagnosed as acephaligc migraines (or migraines without the headache).  My symptoms are varied but usually start with a rush of dizziness followed by total or partial paralysis, slurred speech, ataxia (muscle coordination trouble), numbness, and other "stuff" like that.  I asked the neuro if all this could be related to my skull plate but he brushed me off (like everything else, he didn't listen- very similiar experiences with the medical profession like what you two have had with the ego crap and all).  He wanted to put me on Topamax but I refused because I just wasn't comfortable taking the drugs with all the side effects.  (Even when I do have a painful headache, I take Advil liquigels as a last resort.)  So that was pretty much the end of my relationship with the neurologist.  If I didn't want his drugs, he couldn't do anything to help me.  So, I'm been trying to figure this out on my own.  Is it pysiological or maybe hormonal or yeah- phsychosomatic!  My FAVORITE!  I went to the ER once when all this first started and they tried to tell me it was a pseudo seizure.  I just love getting labeled as a looney!  If I had thought of it, I would have demanded a different doctor right on the spot for a second opinion but I gave in thinking this is what I had to live with and just wrote them off emotionally, I tried not to let it get to me.  I knew no one could help me there if that's the best they could come up with.  Anywho-  I have no idea about cerebral fluid or what not but I'm really interested in what you guys were saying about the acrylic becoming brittle and I wonder if this is also what's happening in my case.  I have no idea how to find out what my plate is made of or if this could be the cause of these unusual migraines.  I'm really wondering now if this could be related.  How would you know?  Who would you go to see (or maybe a better question is how do you find someone worth seeing) or what would you have performed to check out the condition of an old skull plate? 
 
I too have never run into anyone with a plate in their head.  It's refreshing to find someone who knows what I've been feeling about it all this time.
 
 

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 3/30/2008 12:18 PM (GMT -7)   
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

research_babe
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 3/31/2008 1:18 PM (GMT -7)   
Thanks for your response, Lynn.  I'm sorry to hear about all your trouble.
 
I did finally contact the neurosurgeon who did my surgery when I was 14.  For whatever it's worth, he took a CAT scan of the area and said that the plate is somewhat visible using that method.  He was satisfied with the results and told me that the plate is NOT the problem.  He thought I was having "minor motor seizures" and reprimanded me strictly for not getting on drugs and getting them under control.  I went to an epileptologist at his recommendation.  She felt, after hearing about the episodes in detail, that they are most likely migraines- probably hemiplegic and said she wouldn't feel comfortable treating me for seizures.  Truthfully, I was hoping they weren't seizures and I felt like I dodged a bullet.  I don't really know if I can rely on the CAT scan thing based on what cracked skull had to say and the text book he pointed out... but I guess I'm giving up on that for now.  Although a part of me still wonders about it, it's not like my plate is moving or paining me in any way... I don't have a sense that it's broken so I'm just going to trust that it's okay for the time being. 
 
The really incredible part of all this is that recently I found that I will come out of the symptoms of an episode if I push up on this certain spot on my neck at the base of my skull.  This has been an amazing "find" if you will.  I don't really understand it but I'm starting to wonder if all those people who said that migraines are based in a muscle tension problem don't have more truth than I gave them credit for.
 
So, right now, I'm working on taking a saliva based, month long hormone test to see if they might be contributing to the migraines as I've suspected.  I'm also looking for a doctor who could adjust my C1/C2 area and hopefully take a more serious look at the muscles, maybe do trigger point therapy or something for that area.  I need to look into whether or not my insurance would cover any kind of medical massage as a treatment.
 
I've had my share of feeling like or being accussed of being hypochondriac or attention seeking but frankly, it's not in my nature.  I'm much more comfortable being behind the scenes, in the background.  My personality seeks to draw attention away from myself, not towards it.  I think that attention seeking is what they label anyone who doesn't accept the status quo.  If you stick up for yourself, you're trying to get attention.  If you ask a difficult question or actually know something, you're labeled as a difficult patient.  It's a load of "fill in the blank".
 
Hey, if you find anything out, will you post back here and let me know?  I wish you well as you seek to become well. 
 
Blessings ~
 

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 4/1/2008 11:05 AM (GMT -7)   

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


CrackedSkull
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 4/12/2008 7:38 PM (GMT -7)   

I will get Adamson address for you

I having trouble keeping up with you guys (Now That there is three of us) because I have 6 classes this semester

 

 

I think this is Him, I have not seen him since 1990, I will verify tomorrow

http://www.spineuniverse.com/mdpage.php?doctorid=1121

http://www.carolinaneurosurgery.com/physicians/adamson.html

  Yes I do believe this is him

Post Edited (CrackedSkull) : 4/12/2008 11:45:06 PM (GMT-6)


ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 4/13/2008 2:00 AM (GMT -7)   

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


ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 8/5/2008 9:30 AM (GMT -7)   
Hi
 
Just thought I would update you.  I have managed to contact Dr Adamson and he replied by email, confirming the he has seen some problems with Acrylic.
 
This is really for Cracked Skull if you are out there.
 
 
Dr. Adamson had some suggestions for surgery similar to yours and I wonder if it was worth it for you and are your headaches less in frequency and intensity.
 
Thank you for the contact details. At least I have it in writing from Dr. Adamson and maybe won't be seem as neurotic.
 
Kinds regards
 
Lynn

ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 10/9/2008 11:19 AM (GMT -7)   

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

 

 


ginnylynn
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 3/19/2009 10:32 PM (GMT -7)   

Hi Cracked Skull

Thanks for stopping by.

I have had no success finding a neurosurgeon yet...I saw one in England and he did not even bother to look at my research, said he could see my plate and it was cosmetically very good (But he could SEE it...to me he shouldn't be able to see it). He did not listen to me...when i mentioned that I get fluid on my forhead he said "what fluid - what is it" (How should I know).  He said forget american doctors they will do an operation at the drop of a hat, they are in it for the money. I explained that Dr. Adamson had given me his advice and money was never mentioned...Dr. Adamson didn't even need to pass the time of day with me....but he did....he read my email and gve me an opinion for free.

I was told to "get on with my life".

I told him about the pain and my quality of life and he said "I'm a neurosurgeon, I don't deal with pain - see your GP"

There was no point talking to him I mentioned brittlenes in acrylic and he said. " oh that is very rare".  I saw him in January, 09 and he has not written to my GP yet and he should have.

I did not cry in front of him and tried to hold my own but he was so intimidating.

Once outside the hospital gates I broke down and cried my eyes out. I travelled from France to the UK to see a total piece of ****

I asked my GP to refer me to another Neurosurgeon in the UK and she said she couldn't due to funding....I said I will Pay. In the meantime she has given me amitryptyline to "try".

My daughter lives with a Neurosurgical Nurse who has recommended a Neurosurgeon - I am awaiting an appointment.

Again thanks for stopping by

I will keep you updated from time to time

 

Lynn

 

 

 

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