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Old 03-22-2010, 05:45 AM #11
dankgrl13 dankgrl13 is offline
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I, too, am in the tri-state area and suffer with csf leak. Finding a neurologist here to listen is like finding a needle in hay stack. I think I have seen 50. The headache center at montefiore in the bronx is good.
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Old 05-10-2010, 03:39 PM #12
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Default CSF Leak

I have been diagnoised with , first a pituitary macroadenoma and ICHP and then a CSF leak. I have been to 2 of the most well respected university hospital systems in the state, only to have doctors disagree. I had a radioactive cisternogram (lumbar puncture and all) that came back "dramatically abnormal" which prompted a call from my neurologist to get to this surgeon at this big university hospital asap, but Do Not Fly. He made all of the arrangements and off we go. They told us to expect to stay 7 to 10 days for the surgery, spent time explaining it to us, etc. The whole family took off work, many were flying in from all over the states. My husband and I infromed our employers that we were on our way to have this surgery and that I needed about 3 weeks off for recovery and all. No problems there. We have the first appointment with an ENT who was supposed to admit me to the hospital. Let's call him Dr. I'm Smarter Than Anyone Else In The World. He took my cisternogram and said "this is garbage" these test are not any good. He then looked up my nose for a minute and said "I do see a glistening fluid, but can't tell where it's coming from". He then said he wanted to do a 10 slice CT with contrast and went on to explain that I would have an IV, etc., and that this would take about 30 minutes. Went in for the CT, no contrast, done in five minutes. I asked the tech about it and she said "Dr. I am Smarter Than Anyone In The World, didn't order contrast. Ok, whatever the smartest doctor on earth wants. We were then ushered back into his office and he said, the CT was negative. You don't have a leak. Relief right? He then sends me over to the Neurosurgeon about the pituitary issue. Now I must say, you have never met "arrogant" like this kid. He say's why are you here? I said, Dr. I am Smarter Than Anyone In The World told me I had to see you, he said "what for"? I stupidly assumed that they exchange information or something. I said well, I don't know, he's the one who sent me over here. So Dr. Arrogant calls Dr. Smater and and Dr. Smarter tells Dr. Arrogant about my pituitary tumor. So he say's, exact words..So, alll I have to say is that when Dr. Smarter repairs this leak I will snip out the tumor. I won't look at any films, I'll just take Dr. Smarter's word, we work together all the time. We are just stunned, what happened here? My husband then said, wait, we know nothing, and I now need some answers, my wife is sick and we are paying you guys alot of money to take care of her. Dr. Arrogant said, you aren't paying me anything, the University pays me. You cannot win with a physician that gets paid no matter what they do or do not do. So, we call home and tell the local physicians what happened and they sent us to a neurologist at "big university hospital" who actually called Dr. Smarter and said, "I think your wrong". Well, that did not go over very well and they argued, then a 3rd doc got in on the argument, saying this is a low pressure headache caused by a csf leak. Finally, the neurologist said, I am sending you to another university hospital and made the referral. He was not going to fight the infamous Dr. Smarter who is 2o years his junior. I still have a leak, I still have a headache, I still feel like you know what and I still have not received care.I talked to Dr. Smarter and he said, I did not see a leak on the CT with contrast and I said "you didn't do any contrast" and he actually said, YES I DID. I said I think I would know if I had and IV Doc. His nurse later called to tell me that I was correct, but the results were still the same.
The doctor I really like told me that when things like this happen that you will often get very poor medical care because doctors don't like to be wrong. So when another physician calls about history, they will not paint you in a favorable light, just FYI. To make it more interesting, I was the Marketing Director for a large hospital system. Now I know what the patients were saying to me when they said they didn't think their doctors were listening to them THEY WERN'T. I have actually been involved in conversations with physicians about patients that they were treating. Terribly unfair in retrospect, wish I would have know then what I know now.I remember one lady came to the ER with chest pains and the doctor called her a frequent flyer in need of a case of Prozac (long time ago) and discharged her, she died on way to her car of a massive heart attack. I am just saying to all, you are in charge of your health care. Do not be afraid to fight the fight it takes to get yourself well. I am not an aggressive or abrasive person and have been very meek to this point, but now I will fight, I want my life back.. Anyone else had a similiar experience?
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Old 05-14-2010, 12:20 AM #13
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I have been diagnosed with CSF leak had blood patch which did not work. Cysternogram could not find leak. they now want to treat with drugs Is there anything else out there to be done?
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Old 05-30-2010, 09:22 AM #14
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Default Diagnosis of CSF leak

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Originally Posted by doctorslie View Post
I have been diagnoised with , first a pituitary macroadenoma and ICHP and then a CSF leak. I have been to 2 of the most well respected university hospital systems in the state, only to have doctors disagree. I had a radioactive cisternogram (lumbar puncture and all) that came back "dramatically abnormal" which prompted a call from my neurologist to get to this surgeon at this big university hospital asap, but Do Not Fly. He made all of the arrangements and off we go. They told us to expect to stay 7 to 10 days for the surgery, spent time explaining it to us, etc. The whole family took off work, many were flying in from all over the states. My husband and I infromed our employers that we were on our way to have this surgery and that I needed about 3 weeks off for recovery and all. No problems there. We have the first appointment with an ENT who was supposed to admit me to the hospital. Let's call him Dr. I'm Smarter Than Anyone Else In The World. He took my cisternogram and said "this is garbage" these test are not any good. He then looked up my nose for a minute and said "I do see a glistening fluid, but can't tell where it's coming from". He then said he wanted to do a 10 slice CT with contrast and went on to explain that I would have an IV, etc., and that this would take about 30 minutes. Went in for the CT, no contrast, done in five minutes. I asked the tech about it and she said "Dr. I am Smarter Than Anyone In The World, didn't order contrast. Ok, whatever the smartest doctor on earth wants. We were then ushered back into his office and he said, the CT was negative. You don't have a leak. Relief right? He then sends me over to the Neurosurgeon about the pituitary issue. Now I must say, you have never met "arrogant" like this kid. He say's why are you here? I said, Dr. I am Smarter Than Anyone In The World told me I had to see you, he said "what for"? I stupidly assumed that they exchange information or something. I said well, I don't know, he's the one who sent me over here. So Dr. Arrogant calls Dr. Smater and and Dr. Smarter tells Dr. Arrogant about my pituitary tumor. So he say's, exact words..So, alll I have to say is that when Dr. Smarter repairs this leak I will snip out the tumor. I won't look at any films, I'll just take Dr. Smarter's word, we work together all the time. We are just stunned, what happened here? My husband then said, wait, we know nothing, and I now need some answers, my wife is sick and we are paying you guys alot of money to take care of her. Dr. Arrogant said, you aren't paying me anything, the University pays me. You cannot win with a physician that gets paid no matter what they do or do not do. So, we call home and tell the local physicians what happened and they sent us to a neurologist at "big university hospital" who actually called Dr. Smarter and said, "I think your wrong". Well, that did not go over very well and they argued, then a 3rd doc got in on the argument, saying this is a low pressure headache caused by a csf leak. Finally, the neurologist said, I am sending you to another university hospital and made the referral. He was not going to fight the infamous Dr. Smarter who is 2o years his junior. I still have a leak, I still have a headache, I still feel like you know what and I still have not received care.I talked to Dr. Smarter and he said, I did not see a leak on the CT with contrast and I said "you didn't do any contrast" and he actually said, YES I DID. I said I think I would know if I had and IV Doc. His nurse later called to tell me that I was correct, but the results were still the same.
The doctor I really like told me that when things like this happen that you will often get very poor medical care because doctors don't like to be wrong. So when another physician calls about history, they will not paint you in a favorable light, just FYI. To make it more interesting, I was the Marketing Director for a large hospital system. Now I know what the patients were saying to me when they said they didn't think their doctors were listening to them THEY WERN'T. I have actually been involved in conversations with physicians about patients that they were treating. Terribly unfair in retrospect, wish I would have know then what I know now.I remember one lady came to the ER with chest pains and the doctor called her a frequent flyer in need of a case of Prozac (long time ago) and discharged her, she died on way to her car of a massive heart attack. I am just saying to all, you are in charge of your health care. Do not be afraid to fight the fight it takes to get yourself well. I am not an aggressive or abrasive person and have been very meek to this point, but now I will fight, I want my life back.. Anyone else had a similiar experience?
Well I just had to reply to your posting as it is such a wonderful summary (and very funny by the way) of the ridiculous situation we find ourselves in trying to get a CSF leak fixed. I thought these sort of doctors (Dr Smarter and Dr Arrogant) were only found over here in the UK, where they are to be found in plentiful supply! I'm clearly very wrong. It took me nearly 2 years of going round and round in circles with arrogant consultants before I finally went over to USA and got my diagnosis for a cranial CSF leak back in July 2009. I had it repaired in America, and hoped my troubles were over, but no, another leak was still present, and yet more scanning etc. was done without showing it up. I had a 2nd craniotomy at the end of Feb 2010 (back in America) and some thinned dura was repaired, but still a leak persisted. I've just had a CT scan, which showed up bone defects but no definite leak site, and I'm going to try MR Cisternography very soon in a desperate bid to find this wretched leak. Even the consultant in America is now beginning to doubt I have a leak, but I am absolutely sure of it. The one repaired in 2009 was 'gushing through' and once you've had a leak you know the symptoms without a doubt - why, oh why, can't the doctors just listen and believe?
If the MR Cisternography doesn't show the site, I simply don't know what to do next - most of the fluid (and there's lots of it) goes down back of my throat, and so extremely hard to collect a nasal sample for testing.
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Old 06-18-2010, 09:02 PM #15
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Hi dankgrl13,
Who was your doctor at UCSF?
What part of your spine did you have CSF leak? lower back, cervical?
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Old 09-09-2010, 10:01 PM #16
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Default 7 years?

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It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.
I got a spontaneous leak in April, and had 3 blood patches to repair it. I have been feeling better (for the most part), but a recent MRI showed that I still have fluid pooling in my T2-T6 region. We don't know if it just hasn't reabsorbed, or if there is still a leak. Seems weird that I'm not having the killer headaches anymore if I am still leaking. Tell me more about your situation. 7 years? How have you known? How have you felt? Thanks!
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Old 09-18-2010, 03:44 PM #17
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Default Name of Dr. at UCSF

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Hi dankgrl13,
Who was your doctor at UCSF?
What part of your spine did you have CSF leak? lower back, cervical?
Dankgirl 13, I live in Bay Area and have been wanting to go to UCSF for a second opinion of what has happened to me. PLEASE let us know the anm,e of your doctor. I had sinus surgery at Kaiser Oakland last March and it turned into a nightmare. A month after the surgery, liquid just stating pouring from my nose. The H&N surgeon insisted I had no problem and "just to wait". Well, I happen to be a professional wind instrument musician with a family and the leak has put me out of business! The H&N surgeon insisted that I just had a "runny nose" and sent me to Allergy. They placed me on allergy shots, inhalers and antihistimes. What a JOKE! The leak got worse. I insisted on a beta transferin test which took 1 month! The test came back positive for fluid. Again I was told to "wait". No explanantion at all. In August the H&N surgeon finally had me undergo CT scan and MRI scan as well as a radioactive tracer test including sticking 6 HORRIBLE collection plugs the size of clothespins up my nose for 24 hours. The plugs made me sneeze convulsively from the time they were in and by the time I came back to the hospital the next day, I went in to shock and was thrashing around like a fish on the gurney. The the vomiting started. 2 days prior to this test I was rushed to the ER with a 104F. We thought menengitis had set in. In total, I had 3 lumbar punctures that still feel like they happened yesterday. The Nuclear test found 3 leaks in my upper sinus and the scan showed a thinned area likely the source of the leak. My doctor NEVER discussed the findings with me and I had to find an intern willing to speak with me. He was good and explained everything to me. However, he doesn't see patients. My doctor is 72 years old is head of the depatment and from my family's point of view, simply cares less about his patients especially one he likely injured. He seems to be to avoiding me. Here's the REAL intereting part: the plugs apparently moved mucosa over the leaks and the leaks stopped! It's been a month and half w/no leaks, but the pressure behind the leak loacation is very uncomfortable and the lumbar punctures didn't help. I've been to so mant Dr. appointments, that I may eventually be dismissed from my day job because of the constant disruptions. Anyone else have a sinus surgery story?
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Old 01-30-2011, 07:27 AM #18
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My friend just got a csf leak. She has had one blood patch proceedure. That was about two weeks ago. Her eyes have been crossed for two weeks also. I have found alot of people with csf leaks, but nobody seems to have the eyes crossing problem. Is there anyone who has had this problem with their csf leak? I'm just wondering if her eyes have a chance of going back to normal.
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Old 02-10-2011, 04:47 PM #19
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I had a spontaneous csf leak for 6 weeks and also developed a 6th nerve palsy. It will improve in a max of 6 months. Have her see a neuro-opthomologist for monitoring and script for prism glasses.
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Old 03-07-2011, 10:11 AM #20
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Originally Posted by dankgrl13 View Post
It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.
Anyone know anything about being pregnant with CSF leaks... I have had them in the past and they seemed to go away as long as I drink alot of fluid and caffiene. I'm scared they will come back with weight gain. I am 28 and started getting the headaches at 26.
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