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Thread: New member wisdom needed

  1. #11

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    Hi Mairanne
    I agree with your advice about medicine .A friend who has been on medicne his whole life gave me this advice just take the least amount you need to. but you have to do what you need to to survive. no bp just opening pressure. general practoneer thinks spinal leak strong possibility, neurolgist says just maybe and the radiologist probably thinks it doubtful because he only wanted to do the opening pressure. I assume because only talked to the nurse. since my opening pressure was 16 I assume he will not want to pursue csf leak further so i will have to pray and see what to do. because if the neurologist is not of the same page as you it does one little good.
    i did ask for them to test the fluid since "they were there" and once they found the order from neurologist they did. Tech said they were tesing for "many things. I guess it will be what it will be. I see a neurologist in the same office tommarow and will get the results, need to talk about some pain medication also cause when pain is not so bad there is still little joys in life. though I gather from diagnosised csf leakers only bp are the true treatment option I am undiagnosid and in pain. I will look up priocet and feriocet and as the commercial says talk to the doctor. saw alot of suffering at the hospital and saw the how important it is to reach out to others who are suffering it does one good oneself somehow. thanks for reaching out marianne

    God Bless

    David

  2. #12
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
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    Alberta Canada, with a Beatiful view of the Rockies
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    46

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    Your not going to like what I say or well you may like it.... to me it doesn't read like a csf leak. for one the salty fluid is like water unless mixed with mucus. I've been leaking since 1993. What tests were done on your pituitary? I am panhypopituitary and know them well. Was there any plaques or bleeds? Are your headaches positional? Is there any throbbing etc? Sorry I'm trying to understand. When you had your MRI did the Dr.'s say anything about your Ventricles... Yes I have a ton wrong in my head and I am hydrocephalus as well as of the last 6 or 7 years... you almost sound like your "pressure feeling could be normal pressure hydrocephalus". Look it up and you may see some similarities... sorry I hope you get your answer and I pray it's not a leak!

    I'm a cranial leaker and my story is a long one in the archives... I've had 16 brain surgeries, I have a vp shunt that has been replaced around 8 times ( sorry I have a hard time keeping track) The second to last time it was replaced my NS said... " there was a lot of scar tissue in the ventricle so I really had to reef on it" Not something you want to hear... well three weeks later I was stumbling around, repeating my self, sick to my stomach etc... well I was flown air ambulance to Calgary where the NS on call said to me I always had hydrocephalus... I asure you I didn't. I have had several bi frontal craniotomies and a few craniofacial craniotomies the last one being 15.5 hrs long... That is why I pray your not leaking... This all started after a tumor removal and I sneezed filling up 1 and 1/3 hospital juice cups full of csf.. I have never felt pain like that ever! If I could have sunk further into the mattress I would have... good luck....
    Last edited by dagaz; 09-13-2011 at 12:29 AM.
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  3. #13
    Community Member
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    Nov 2009
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    Long Island, NY
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    Quote Originally Posted by judah View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Mairanne
    I agree with your advice about medicine .A friend who has been on medicne his whole life gave me this advice just take the least amount you need to. but you have to do what you need to to survive. no bp just opening pressure. general practoneer thinks spinal leak strong possibility, neurolgist says just maybe and the radiologist probably thinks it doubtful because he only wanted to do the opening pressure. I assume because only talked to the nurse. since my opening pressure was 16 I assume he will not want to pursue csf leak further so i will have to pray and see what to do. because if the neurologist is not of the same page as you it does one little good.
    i did ask for them to test the fluid since "they were there" and once they found the order from neurologist they did. Tech said they were tesing for "many things. I guess it will be what it will be. I see a neurologist in the same office tommarow and will get the results, need to talk about some pain medication also cause when pain is not so bad there is still little joys in life. though I gather from diagnosised csf leakers only bp are the true treatment option I am undiagnosid and in pain. I will look up priocet and feriocet and as the commercial says talk to the doctor. saw alot of suffering at the hospital and saw the how important it is to reach out to others who are suffering it does one good oneself somehow. thanks for reaching out marianne

    God Bless

    David
    David ---- Sorry I haven't been on the site for awhile. Life got in the way! But I would be interested in how you did at the neurologist in early Sept.
    Hoping you are experiencing some relief now ---
    Best,
    Marianne

  4. #14

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    Hi paradice 15 thankyou for responding. Been just trying to tough out the pain as best as I can. After the opening pressure reading of 16 (the radiologist did not want to do a flouroscopy) my neuro cancelled my appointment and his colleague told me the pain was not that bad. Waited for the month vacation for the neoro to come back and something must of happened because he is on medical leave. Have no neurologist at present. Pretty discourged so the best option for me is the mayo clinic because i am lucky enough to have it just a couple hours away. I have to go through the general medicne before I can see a headache specialist I am going to try to press for a myleogram and a cisternogram. Again to those who have been through more testing than me would these the test I should request? Physicians can be tough to deal with and this might be my only shot at the mayo clinic so i just need to put it Gods hands but at the same time I want to rule out spinal leak by being assertive and get the correct test and not be dismissed as we all know is a huge obstacle. My symptoms have been changing however from being mainly orthostatic nature the first two years (laying down helps less and less) to alot more nerve pain and burning on left side of head and face and jaw eye and ear, numbness in foot and hand, crushing headache about 6 hours a day with the rest of the day being medium. Kinda like when one hits ones funny bone. alot of confusion and heart issues when pain gets intense Again marianne or others mylenogram and cisternogram are the test to push for. If anyone has been down to mayo clinic in rochester any advice i m scheduled for mid december. Thankyou

    David

  5. #15
    Community Member
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    Mar 2011
    Location
    UK/Spain
    Posts
    43

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    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 definately the way to go, and if there is a leak then Linda said that is the way to see it. She also said to me that if the pressure is already low she could infuse artificial CSF when doing the myelogram to force the leak so to speak therefore identifing it precisely. Anyway, from all the information I have gathered, and my god Ive gathered a lot, cisternographies are not reliable enough. But certainly got to be better than no testing I guess.
    I have read good things about the Mayo clinic but I couldnt advise any way. I guess at least you are getting a shot at it.
    I too am finding that laqying down helps less and less unless it is for very long periods such as 14 hours or more. I have found that the less I move the better I am, so instead of getting up a few times to visit bathroom, get coffee, stir the dinner, pick up the parrot, etc I have started saying no, and not doing anything at all. Then I have slightly less headache.
    I have also found my back and leg pains hurting much more recently, like nerves down the legs and in lower back. Im thinking that could be csf leak irritation, or it could be scar tissue from the many surgeries. I dont know, but I guess given my situation I will not find out any time soon.
    I too have chest pains, started about 18 months ago, have gotton worse as time has gone on to the point where with lots of dodgy ECGs they did an angiogram as they were sure they would have to put a shunt in. Nothing, no reason why I am having chest pains each day, the worse my head is the worse my chest pains are. Certainly not food or drink orientated. But of course the doctors want to say it is stomach reflux! Yeah yeah, whatever.
    I so hope you do not have a leak, but if you do, do not give up the fight. Im still fighting each day, some days no fight left, like now, but other times I see the light come on a bit stronger again. Ill be thinking of you. Good luck

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