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Thread: They found the leak

  1. #1

    Default They found the leak

    its now confirmed I am a confirmed Leaker only taken nearly 5 years to get here. I been told its rebound headache, migraine, etc and even been told that they could not see how it possibly could be a leak and even there is nothing that can be done and sometimes people just suffer with headaches. but guess what IM NOT MAD I ACTUALLLY HAVE A CSF LEAK!!! report says:-Sagittal T1 and T2 weighted sequences have been acquired through the thoracic spine along with similar sequences in the axial plane and a coronal STIR sequence. These show a cystic collection on the right at T7 which is extradural and does not have the appearances of a Tarlov cyst. It does, however, apparently contain csf and it has irregular borders suggesting that this is indeed the site of a csf leak. The high signal on the STIR sequence extends some distance into the exit foramen and also down the right side of the cord to the level of T8.

    Whats next guys?? Neurologist is hunting for an experienced surgeon who is Willing to take this on!!!

    Regards Lisa

    for info they found this with radion cisternogram followed by a thoracic MRI to pin point the leak.

  2. #2

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    I am happy for you Lisa (even though it does sound odd to be happy for a leak diagnosis ... but you knew it was a leak!) Would be great if a directed blood patch is all you need!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  3. #3
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    Thank goodness you have a definitive diagnosis! If you have read this site for awhile, you will realize we ALL were questioned by our physicians (and ourselves!) for a very long time before the truth was found! So sorry to hear it took you 5 years.
    I am glad your neurologist is on board, and searching for you --- good luck, and hopefully a blood patch will fix you right up!
    Best wishes,
    Marianne

  4. #4
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    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, migraines, some people just have headaches etc. I know I dont. Still I keep on fighting and am so lucky to have Dr Linda Gray onboard.
    Hoping to get a referral through the british National Health Service to go to the States. Long process but then Ive been waiting 4 years so should be used to it by now. Good luck with your continued path Lisa
    Sarah

  5. #5

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    sorry only just read the last few post hav'nt checked in braintalk for a while. Turns out I have misinturpreted my scan result, although it says my leak does not have the appearance of a Tarlov cyst and does appear to indeed be the site of a leak. It actually turns out that I do have a cyst or cysts? blood patch wont fix this. I am now awaiting an appointment with a neuro surgeon to see if there is anything which can be done. Been waiting for a month so phoned neuro secretary. she has not even heard of me!!!! .......................... Here we go again.. At this moment in time apart from now knowing I have a cyst I do not know if it is one or more, if it is treatable, or if I will get worse, Aparentely with the complication of my venous malformation it is something which is extremely rare and they have not come across before. NICE I would think that narrows the chance of them being able to do something. I am now going to stick my head back into the bucket of sand and stay there. I have no words to describe how I feel. Hope some of you guys get better luck than me. X Lisa

  6. #6
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    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 really feel for you, because I am in exactly the same situation.
    do you have a counsellor? I felt the need to call mine again last week and started seeing her again today. She has truly kept me alive, quite literally.
    I had a meeting with the appeals board yesterday against the decision that was made by the Exeptional Treatments Panel not to refer me to the US: so I have gathered all the information I can find available in the UK to prove that the UK just cannot do what they can in the states.
    I now have to wait to see if the appeals board insist the Exceptional Treatments Panel re-evaluate my application, If they still refuse, then I have no where to go either.
    I have written to 9 neurosurgeons privately in the UK, only 2 said they would be prepared to see me! Thats saying something I think.
    Anyway I am with you all the way, anything I can do to help, or just be a sounding board, please please feel free to contact me either through here or on the fb csf leak page.
    xx Sarah

  7. #7

    Default how they found the leak

    Hi, they found the leak with a radon cisternogram, was done at Frenchay in Bristol. Im not very up with all the terminology but basically ,injected radio active dye into my spine and then took pictures over 2 days. had to lye still quite along time, the results did give them something to go on, it showed an area where isotope was collecting, they then did a targeted MRI on the area. this confirmed a leak/cyst. Ive not actually seen anyone since I got this report, I got my GP to print it off for me. My neurologist has passed me over to a neuro surgeon to see if they can help but everything is very much in the air. any e.mails to my neurologist says she has not heard anything back from Frenchay regarding a neuro appointment.
    This has been going on far too long and really think I am starting to lose the plot, I have been seeing a councillor and I am really struggling with everything, work ,kids, home it all get too much. My headaches I sort of control by avoiding nearly everything only doing things in moderation and avoiding everything that agrivates the head. my back condition is detoriating as well, the venous malformation is basically deformed veins which is spreading, this causes swelling and pain which gets worse with any activity much like the headaches. Im just starting to read about"mindfullness which has been recommended to me" which may help many of us that are stuck with a long term condition, I will let you know if I get any benefit from it. x Lisa

  8. #8
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    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.
    I found out today that my appeal against the decision of the exceptional treatments committee was successful and they have now been sent more information to re valuate my application. In the mean time, I went to a private neurosurgeon in cardiff, Mr, chopra, who is very clear i have a leak. was amazingly sympathetic and positive, and didnt even charge me the 200 quid I was told I would have to pay. he has said he is going to write to a Mr. Alistair Casey of the National at queens square, as he is the ONLY neuro spinal surgeon in the country (in fact the position was created for him), and apparently the only place in the entire UK to get all treatments and diagnostic tests under one roof.
    Trouble is I have been discharged from a different neuro at the national with my perfectly diagnosed migraines, NOT.
    So I dont know whats going to happen but I do know I cant do this much more, I feel so so so ill. I just want them to take me into hospital and let me rest for a while if nothing else. I am 4 years now and not looking like getting any further for some time yet. but I may pay to go privately to see this Mr Casey.
    I think you need to go back to frenchay and insist on a ct myelogram. they do them there as I found out on my last lot of research the other day. im going to my gp to ask for him to get me one if possible, they also do them at exeter. they are the best diagnostic tool apparently. Definately write to all concerned formally complaining about the delays, and get onto PALS, they really are brilliant at moving things on.
    I have decided that if my next exceptional treatments panel meeting tomorrow fails i will go to the newspapers. Mr. Chopra was horrified that I have been completely dropped and abandoned with no one for me. Blinding neurosurgeon. Really knows his stuff.
    I am glad you are seeing a counsellor. I NEED mine and she is amazingly supportive, I see her 4 hours a week in my home.
    My back condition is also deteriorating tremendously, but somehow I feel if I could lose the headache then i can cope with my back and legs limitations.
    Stay strong Lisa, somehow, because that is all we have, we have no one to help us through this except ourselves. I dont even get a cuddle any more. This is the most lonliest place I have been in my life. Im thinking of you lots ***

  9. #9

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    Hi Lisa ... I wish the process was simpler for you! Seems like you are at least chipping away at the leak issue. I hope you hear from a neurologist or nsg soon with a plan of action. I think I read (from a Dr. S patient here) that some leaks from cysts may end up needing a surgical repair ... but would be nice to try a patch at the correct level first. good luck!!!
    (Good luck to you too Hemi ... glad your appeal worked)
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  10. #10
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    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 is draining the fluid downwards which is why changes of posititions and especially sitting and going from sitting to standing, causes such horrendous pain, he said it is like all the fluid drops down into the cyst, like a balloon. when we lie down it regulates which is why the ICP bolt can show normal readings and slow drops upon change of position.
    Im guessing that if that is the case, then the only option would be surgery as you cant patch a cyst I wouldnt have thought???
    Mr. Chopra also said that there were issues in the flow of my csf because on the radionucleartide cisternography showed no movement or dispertion of the dye from my head even after 72 hours yet from the spinal area the dye disipated and gathered round the kidney area. I thought that csf is dispersed and reabsorbed and regenerated at the head level so that is where you would expect to see the most rapid disappearance of the dye. HOpe this makes sense lol.
    Anyway I would prefer to just have a leak rather than a cyst because the thought of surgery terrifies me, but then the thought of carrying on living like this terrifies me more.
    I will find out next week if the meeting was successful. it is being held this morning, they will write to my gp on monday and I have an appointment on wednesday. gonna be a long wait.
    Mr. Chopra said that his fear of my actually getting to the states on the NHS is that there are so many 'package deals' in the states, they do their thing, send you on your way and then the NHS has to pick up the pieces. I can see that he has a point, because if I come to Dr Gray, she does the necessary diagnostic tests, patching, and I go home, all the way back to the UK; who do I have to call on if I hae problems, or am not healed, or need more patching etc, so now I have started to think that perhaps it would only work if I were to actually live or have an extended visit to the USA. That of course is not in my financial remit. So definately CONFUSED.COM

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