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Thread: Cisternogram & Myelogram- Any success finding your leak with these tests?

  1. #11

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    I am so sorry they could not locate the leak site. Were any of your pledgets positive? Did they check your spinal fluid pressure? Did they try to use overpressure to try and force the leak?

    It is nice that your doctors support your efforts to locate this. I hope Dr. S sees something no one else has.

    Thia

  2. #12

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    Thanks Thia I'm not sure if any pledgets were positive. I'll get the report shortly. When I asked the neuroradiologist what my opening pressure was after the myelogram, he replied, "I didn't know that I needed to check it" He said I can tell you that it wasn't high. A missed opportunity. I think it should be standard protocol for anyone with a leak. They did not add anything to increase pressure. My docs are very supportive. They admit they don't see leaks very often. Guess it isn't as common as we think...
    Last edited by Lumbarlady; 10-09-2011 at 03:18 PM.

  3. #13
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    Lumbarlady & Leaking ---

    I thought I was crazy, as I am experiencing a constant stiff neck, and pain in my upper back along with these crazy headache. Thanks for posting that. I guess it comes as a package deal with a leak!

    I also have had multiple BPs (7), with no relief, and am tired of having this situation control my life. There is only so much lying down I can do and still function with a family to raise.

    We need to get a celebrity on board, who has experienced this condition - then maybe research would be done to help all of us on this site! George Clooney actually had a CSF leak, and was repaired by Dr. Schievink several years ago with excellent results. I volunteer to personally approach him, if everyone wants to contribute for my plane fare to Italy!!!! I'll make the sacrifice...

    I did send all my records/films to Dr. S for review last summer, and he called personally to say he felt he could help me. I was very tempted to fly immediately to California, (since his hands touched George), but came to my senses when my neuro noted that his being a neurosurgeon would probably result in surgery. We decided I would consult Dr. Gray at Duke, a neuroradiologist, to get a more definitive diagnosis first.

    Tomorrow I will see a Pediatric Neurosurgeon on Long Island - recommended by a very reputable neurosurgeon in NY that I saw last month. This doctor specializes in spinal leaks, and I feel he will be gentle and empathetic, since he deals with little ones on a daily basis. I count my blessing when I think of babies and children having to cope with these symptoms!

    Question --- How can the doctors get a valid reading on opening pressure when we are usually lying prone a good period of time prior to the procedure? Mine was normal at 14 1/2, yet 3 significant leaks showed on the myelogram. Does anyone have an answer from their doctor on this? Also --- what is a pledget? With all my procedures, this was never mentioned.

    As usual, I get validation from each entry, so I thank each and every one who is on this site, and wish all success in their progress toward full recovery.

    Best,
    Marianne

  4. #14

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    Dear Marianne,

    This condition is literally sucking the life out of all of us. My neurologist referred me to Dr. Schievink and I am happy to report that I heard from him today via email. I am gathering up all of my imaging from three different hospitals and sending them to him for review. I have explained my symptoms and he has agreed to take me on. Although he is a surgeon, he is supposed to be excellent at diagnosing and finding leaks. I don't know if my leak is cranial or spinal yet- I know that it is slow because of my symptoms. I feel it is cranial based on the one-sided salty nare drip. If I have to fly across the country to get healed, that is what I need to do. I've lost 6 months of my life so far and I am not much fun to be around. My family is extremely frustrated as well so I need to take control of this. I have two boys that I need to be present for. I try to hide my pain, but it isn't always easy when they catch you laying down all the time!

    Let us know how your appointment goes on Long Island. The good news is that you have located your leaks- Very good question about opening pressure. They should probably take it while we are sitting up. Pledgets are little pieces of cotton on a string. I can email you a picture if you want to see them. It is for cranial leaks. They are inserted way up in your nose and left there for 24 hours or so. Very uncomfortable to say the least.

  5. #15
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    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 'migraines' NOT
    I am hoping that if I get to see Dr Gray she will do all the tests anew and ideally together like you hae had done Lumbarlady.
    Marianne, I was also surprised to see that you were asked to get up straight away. I am currently fighting to get seen my Dr Gray through the British National Health Service's Exceptional Treatments Committee because no one in the UK will do anything more for me. I have spoken to a lot of people that have been seen by Dr Gray and every single one has praised her to the hilt and I have such faith in her. I am nervous though. I did not realise that blood patches were so painful. She has programmed up to 9 for me but Im scared silly to be honest. Having read a few comments on here where people say that they really hurt, I dont know what to think.
    in 2008 I was seen in Barcelona by a second neuro (after fighting to get a second opinion due to neglect from first surgeon) who said he thought I had a leak and would do a blood patch. It was the most horrific and traumatic experience I have been through and has taken me 15 months of very intense counselling to get over it. I was in the OR for 1 and a half hours with a gown on but that had fallen down so essentially naked and sitting on the side of the bed upright with no sedation with the neuro stabbing away at my back. He didnt manage to get the needle through because of the scar tissue but had written his report before doing the process as he was away the next day. He apparently was only going to insert 5mls anyway. So it has taken me a long time to be able to even consider more 'stuff happening from behind' as I put it and now, reading here, Im scared again. Not that Im anywhere near getting anyone to do anything as there is no way I can afford to pay to go to see Dr Gray privately. (we have put our house on the market so if it sells then we could pay)
    Anyway I hope so much that you find a way out of your dead end and that everyone gets the help that we rightfully deserve. We all want pain free lives, and living with this head is completely unacceptable. My partner is supportive although exhausted. There seems to be nothing else in my life except fighting to get help for my head. I too have said I would row across the ocean from UK to USA single handed to get the help I need. I want a life, I want to laugh (even laughing hurts) Lets hope we all get there!!

  6. #16
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    Hi everyone ---
    As usual, when I read these comments I feel blessed that I'm able to function better than most. And I have avoided those pledgets - they sound horrible! Always look for the positive!!
    Hemyinspain --- I wish they had better medical care where you are. Hopefully soon you can find help. Just an FYI -- perhaps it depends on who does the blood patches, but I've had 7 (by 2 different physicians), and they were totally tolerable and done without any anesthesia. It was just like an intense pressure on my back, and a bit of pain on insertion of the needles. Certainly not pleasant, but nothing like the myelograms.

    With regard to the opening pressure reading --- I asked the neurosurgeon today, and he remarked that it was a very good question, and yes, that could result in a different reading if lying down prior to the LP. Perhaps someone else reading this can question their physician and see what is said. It's crazy how we have to become so educated on this condition -- at least we can support each other in our quest for relief.

    Good luck -- thinking of you all.
    Best - Marianne

  7. #17
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    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 rest for days before that. As it was normaly they decided to take out 20cm3 and send me home. I collapsed with such a severe headache the likes of which I hadnt had since my botched surgeries.
    Also my two cysternographys were completely different, the one that showed a leak was over three days and between scans i was mobile, moving around, upright, driving, etc where as the second one was done over 24 hours and I had been on bed rest for well over a week before hand.
    Over the last month I have deteriorated tremendously. I feel so so ill and really do not know where to turn. Can just hope I get the referral to Dr Gray.
    Good luck everyone ***

  8. #18

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    Hi Hemyinspain,
    I know how you feel and it is so discouraging, lonely and debilitating this situation is. I am so sorry and pray that you can see one of the leak specialists. I am surprised to read that you have not yet had a myelogram, but when you get to see a specialist like Dr. Gray, I'm sure she will do a myelogram to identify the leak sites and patch you at the same time. I found that the slower they insert the blood during a patch, the more tolerable it is. Just tell them to go slowly. It is amazing how desperate we all are. After all, who wants needles in their spine and to go through these difficult tests? I am optimistic for you. I think it is important to move around with slow leaks and hydrate during these specialized exams. I was only imaged one day with my myelogram and 24 hours with my cisternogram and I know the leak was low by the severity of my headache and neck pain. I am only able to be upright for a hour or two at the most this week and feel like I am declining as well. It is impossible to carry on with normal life. When I try to do normal things like grocery shop, pick up the kids, make dinner, the next day I am literally down for the count. So for those of us walking around with low spinal fluid pressure, we really need to be horizontal as much as we can. Not easy to do when you have responsibilities and others need you. Hang in there. Thank goodness we have each other.

  9. #19
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    Default 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 plan. The thing is that I worry that perhaps the tests wont show a leak, then what??? I dont want a leak but I dont want a negative result either because that means I really am stuck with this. And that is something I really cannot contemplate!
    Did your myelgram and cysternography show u have a leak?
    I have been trying to collate all my hospital information this morning. seems my family doctor's secretary is away so have written directly to the NHS. I have taken to doing very little in the last couple of days but just cannot lay in bed all day long so once Im up then the headache starts to get so much worse as per normal no matter how long I lay down for, the minute Im upright off we go again. Will stick it out for a few more days but I think that if we dont go out, or see people or do something productive then that is also damaging for our mental health and mine is very precarious at the moment. Definately sinking deeper. The sun is shining but im shut in the house watching crap on the television. So vicious circle really. Just watching the various sites on CSF leaks waiting for someone to say something which may give me more to research.
    Ive not heard back from anyone that Ive written to regarding my referral so pretty frustrating, every day seeming longer and longer. Still all is not lost quite yet I guess.
    Thanks for answering me
    Sarah

  10. #20

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    I completely agree with trying to get out a little- very fragile emotional state-just can't overdue it. Although my tests have been inconclusive, my neurologist is 110% certain I am leaking. Have all the classic symptoms. I had exploratory sinus surgery and when I woke up was devastated to find out that they could not locate the leak. I've read that these tests could be negative during one test and later positive especially with intermittent leaks. It all depends on the timing of it. My brain MRI showed meningeal enhancement and my pressure was on the low side after 3 days of a hospital stay. I am getting by with the support of my friends and family and holding onto pain-free moments when I lie down. We are all in this together and will get eventually get the help we need. I often wonder how many people who were on this board are now healed and don't post or go on because they no longer really need the support. It would be comforting to hear from those people!

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