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  1. Replies
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    Hi David I get the feeling that you are in...

    Hi David
    I get the feeling that you are in exactly the same boat as me, fighting to even get the tests done, and make sure they are the right ones. According to Dr S and Linda Gray CT myelogram is...
  2. At the end of the line, no where left to go, no fight left

    I thought I would update in a new thread.
    I havent heard back from the Exceptional Treatments Panel as yet but I do believe that they will have denied my going to the states. My GP also agrees and...
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    After such a long battle laura I am so pleased...

    After such a long battle laura I am so pleased you got further surgery to fix the leak. I really hope that you can do exactly as you are told and avoid the high pressure completely. The last thing...
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    The doc in Harley Street permenantly...

    The doc in Harley Street permenantly removes/cortarizes (cant spell it) the nerves that are temporarily numbed by the botox. He didnt mention any others such as the back of the head, he deals with...
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    Hi I also have had botox just above my eyebrows...

    Hi
    I also have had botox just above my eyebrows three each side. the relief for my eyes was incredible!! Lasted about 4/5 months. The main headaches, from top of forehead round skull and neck was...
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    I totally agree with you that stand up MRIs are...

    I totally agree with you that stand up MRIs are the most logical way to get accurate results. At least you have those machines in the states. In the UK, there is ONE, at the Stand up MRI centre,...
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    Robbysmom, When you say some leaks form cysts, do...

    Robbysmom, When you say some leaks form cysts, do you mean like buldges where the csf drops to? When I spoke with Mr. Chopra he explained just that, said that it could be that there is a cyst that...
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    Hi Lisa I also had radio cysternogram at...

    Hi Lisa
    I also had radio cysternogram at frenchay, over 24 hours after being on 10 days bed rest so showed no leak. Mr richardson was the guy that came to my bedside and said nothing can be done. ...
  9. Thank you Lisa, I would love to talk to you, i...

    Thank you Lisa, I would love to talk to you, i read your other post and I feel so bad for you. I have so much information gathered now regarding the UK hospitals, system, failings, facilities now. ...
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    Hi Lisa Where did you get the diagnosis? What...

    Hi Lisa
    Where did you get the diagnosis? What diagnostic tools did they use?
    Pretty unbelievable that the neuros secretary doesnt even know of you!
    How is your life now? How do you cope?
    I...
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    Oh my gosh, you poor poor thing. I really feel...

    Oh my gosh, you poor poor thing. I really feel for you, you must be desperate, lonely, and so low. I really hope that you will manage to keep working, sometimes the distraction can help, but if you...
  12. Dr Gray..published/informative articles relating to spinal leaks..For my appeal.

    Hi
    Does anyone know of any detailed articles or publications that Dr Gray has done explaining in detail her specific imaging techniques and how/why they are more advanced than in other centres for...
  13. I have spoken to my GP today who is so amazing...

    I have spoken to my GP today who is so amazing and has already written, signed and sent the appeal letter! he is going to ask if he can attend with me but doubts he will be allowed.
    In the mean...
  14. Hi Marianne As soon as I received the email from...

    Hi Marianne
    As soon as I received the email from Dr Weatherby I immediately emailed Linda, she has been so helpful and instrumental in even getting to the referral board! She has been in constant...
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    Thats a really good review. Thank you for sharing...

    Thats a really good review. Thank you for sharing it
  16. Refused permission for referral to Dr Gray by NHS in uk.

    I have been refused permission by the 'exceptional treatments committee' to be referred under the National Health Service to see Dr Gray. I am distraight. No one in the UK will do anything, they...
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    Bless you! So much to go thru bit if having the...

    Bless you! So much to go thru bit if having the saline gave u high pressure headache then that is a positive diagnosis for csf leak/low pressure isn't it? So have they said what the plan is now?...
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    Good because u have to think of u and fight for...

    Good because u have to think of u and fight for u!
    Which a and e did you go to?
  19. Can prolonged lower spinal CSF leaks cause pain to increase in lower back and legs?

    My original surgery in 2007 was for a slipped disc L5/S1. When I had my huge fast leaks after the surgeries I suffered terrible constant cramps in my back stomach and legs during the leaks for days...
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    I totally agree with Jeanne, You definately...

    I totally agree with Jeanne, You definately aren't wasting resources!! You are sick, you know you are sick and it is not your fault that the people that should know what is the matter, dont. At...
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    I really look forward to hearing the results...

    I really look forward to hearing the results Marianne. Personally my worst position is sitting, then going from sitting to standing, shame they cant do MRI's of that. All my mri's have come back...
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    That is exactly what I believe too. Laying down...

    That is exactly what I believe too. Laying down as we all know improves our symptoms, so therefore surely improves the pressure. Just a waste of time, money and also unnecessarily causing pain as...
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    CBT is Congnitive Behavioural Therepy. Used a...

    CBT is Congnitive Behavioural Therepy. Used a lot in Post Traumatic Stress disorder which I was diagnosed with after my one and only failed blood patch. the neuro couldnt even get the needle...
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    Hi marianne I saw a counsellor for 15 months 4...

    Hi marianne
    I saw a counsellor for 15 months 4 hours a week! she was amazing, saved my life. That is why I now know that my physcological issues are not the cause of my headaches. I use a lot of...
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    Hi Wow ICU??? The thing is that if they want...

    Hi
    Wow ICU??? The thing is that if they want accurate readings, espcially upon getting up, sitting etc how can they then say the readings are accurate if you are laying down the whole time? It...
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    Hi Marianne I had ICP bolt pressure monitoring...

    Hi Marianne
    I had ICP bolt pressure monitoring done last october/november. They placed mine just behind the line of the forehead on the right hand side of a centre parting in the hair.
    they shaved...
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    Hi peglegs So you have already been with UCLH so...

    Hi peglegs
    So you have already been with UCLH so thats a start I guess.
    I have posted my story on leaker roll call thread. I was on the old Brain Talk page and that was shut down so I thought it...
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    Sticky: Roll Call started on old BT format. Worked well and very helpful. Start again??

    Hi,

    I Thought it might be a good idea to bring over the roll call started by Concerned Gal on the old format. As she said then it is really helpful to have an official roll call (brief summary of...
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    Thats really good news! They are moving on with...

    Thats really good news! They are moving on with you! Good luck, will keep my fingers crossed for you.
    ***x
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    Brilliant! Thanks a lot, Ill go through and...

    Brilliant! Thanks a lot, Ill go through and message them. Hope they wont mind :)
  31. Replies
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    oopps meant to say EDS...sorry

    oopps meant to say EDS...sorry
  32. Replies
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    Heres the facebook link .....

    Heres the facebook link .. http://www.facebook.com/#!/groups/31002608753/
    You also seem to have so much going on!! Im glad you have found a GP that listens to you and were able to change.
    I can...
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    Hi Lou I started with Dr Matharu (very abrupt)...

    Hi Lou
    I started with Dr Matharu (very abrupt) in 2009, (yeah long wait to see him, and between visits) had various tests including POTs testing, (negatie) caffeine (no change) hypermobility (no)...
  34. Ive got an iphone too but to be honest the...

    Ive got an iphone too but to be honest the writing is too small for me to use come the end of the day, better in the morning tho. My vision deteriorates during the day. Would love an ipad tho but...
  35. You are so right it would be great to hear from...

    You are so right it would be great to hear from more healed and sealed people, their stories, how they got fixed, and how their lives have been transformed!
    so you have a diagnosed leak but an...
  36. Hi Lumbarlady

    It is good to hear that Dr Gray does the patching at the same time as the myelogram, one less needle lol. to be honest though I would go through whatever is necessary to get a diagnosis and care...
  37. Ive never had a myelogram so wouldnt know what...

    Ive never had a myelogram so wouldnt know what they are like either! I would take any short term pain to get rid of this life.
    I had an opening pressure which was normal too but I had been on bed...
  38. Replies
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    Hi Lou/peglegs When is your appointment in...

    Hi Lou/peglegs
    When is your appointment in London for?
    How are your symptoms at the moment? Im glad to see that your headaches have gone. I really hope it continues.
    Im feeling pretty ill at the...
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    Any UK leakers out there?

    Hi
    I was wondering if there are any UK leakers, past or present on here that would like to talk to other UK leakers, both healed and sealed, new leakers and those, like me, struggling to get a...
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    Hi Peglegs, I was wondering if you are going to...

    Hi Peglegs, I was wondering if you are going to the National at Queens Square? I was under them for a year (Dr Matharu) So if thats the case I can tell you quite a bit about how they work etc.
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    I too am fighting to get referral to see Dr Gray...

    I too am fighting to get referral to see Dr Gray or Dr Schievink. I need to go through the Execeptional Treatments Committee of the National Health Service in the UK:
    Also I needed a consultant to...
  42. Hi I too have had a nuclear cysternography test...

    Hi
    I too have had a nuclear cysternography test twice. The first one was over 3 days and started showing up the leak after 2 days. The second one was over 1 day and didnt show a leak so hae...
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    Im so pleased you finally have a diagnosis!!...

    Im so pleased you finally have a diagnosis!! Where did you get it from?
    Where abouts are you? Can you get to see Dr Schievink?
    Im still fighting for my diagnosis, have been told the same as you,...
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