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.
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
Yes I do believe this is him
Post Edited (CrackedSkull) : 4/12/2008 11:45:06 PM (GMT-6)
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!
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.
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