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spontaneous CSF leak

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Unread 11-13-2011, 04:02 PM   #31
5thGenTexan
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I haven't yet been diagnosed, but from what I read about the symptons, it's possible. I visited a Nose,Ear & Throat guy last summer, but stopped going as the next thing he wanted to do was a spinal tap. I sluffed it off as no big deal; I'll just put up with the daily headache/earache.....but it continues and I am concerned whenever I read what can happen. So, I am making another appointment and continuing down the road to find out what's happening.

I went to him because I have had recurring (almost daily) earaches in my left ear (headache too) and they occur in the afternoon. This has been going on for over 2 years now. In his office, he put a tube down my nose to look at things and when he pulled it out all this fluid came out with it. Lots of it. He said that's not normal and began to suspect a possible CSF at that time. I occassionalt have a pretty good sudden drip after bending over, although it's not daily. He sent me over for an MRI of the brain and it showed no problems/leaks. Next he wanted to move to the spinal area with a spinal tap, but that sounds serious to me and I elected to put it off.

I am 66 years old and I am afraid of these tests. I guess I'm also afraid to find out what it is. But I am thinking I should start up again and see him once more. I'm hoping he'll try some easier and less invasive things first. That's what I will push for. I wanted to touch base with others to see how it went in the beginning for them. How did you go about getting a diagnosis? What test were done first? What test finally confirmed it?

Any info would be greatly appreciated.
Thanks,
5thGenTexan
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Unread 11-15-2011, 11:37 AM   #32
NewToBlog
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Originally Posted by 5thGenTexan View Post
. I wanted to touch base with others to see how it went in the beginning for them. How did you go about getting a diagnosis? What test were done first? What test finally confirmed it?

Any info would be greatly appreciated.
Thanks,
5thGenTexan
I was diagnosed after they did MRI with contrast. MRI without contrast didn't show the leak.
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Unread 12-12-2011, 08:02 AM   #33
pupp
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Originally Posted by micrazy View Post
Thx Sue... I have had the mri but no leak showed and the bed rest is not working for me either so I am afraid the dr might not do the blood patch since there is not obvious sign it is a leak other than every morning the pressure is less than the night before. He is still treating me for migraines... 2 diff meds. This is soooo frustrating, annoying and at times most painful. But thanks for giving me a silver lining. 6mths ~sighs~ but yet done! thx xDD
Amitriptyline gave me a bit of pain relief to make it easier to battle for some sort of treatment. My neurologist told me to forget any other meds as they won't work.
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Unread 12-18-2011, 03:22 PM   #34
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Kemaxwel... I had an MRI with contrast to try to find any leaks. They put gadolinium into my bloodstream via my arm. Since then I have read and heard that the contrast needs to be put into the spinal area / dura. Did you have a CT or MRI myleogram? And what was used for the contrast / where was it injected?
Really want to get to the bottom of this as I have been ill since this struck 01/04/11 but I'm having to push for help every step of the way. Any advice / experience is welcomed!
pupp
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Unread 12-24-2011, 09:07 AM   #35
swtmisstry
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First, I want to say thank you all for sharing your stories on here. I have been dealing with a leak for almost 16 years now. What I would have given for a site like this when I was first having difficulty. I was 17 years old when I first began having symptoms of a CSF leak. It took 5 years for the original diagnosis and another 5 years and 2 surgeries to finally repair the leak. I have had numerous CTs/MRIs and finally the myleogram was the tool that showed the the location of the leak. They were not able to see the extent of the leak until the myleogram. I'm not sure what medium they used for contrast (its been 6 years since the procedure). It was injected in the lower spine and then they tilted me (head down) so the contrast could travel through the spine and brain. I ended up with a secondary leak from having the myleogram. They treated that one with a couple of blood patches. The nice thing is that since they now know the location of the leak, I only have to have an MRI(with contrast) to monitor the leak and any changes to the area. The fight for treatment of this condition never ends. I belong to an HMO and every time I have symptoms I have to see an ENT in my "home" area to get a referral to "my team." Every time I see a new ENT they want to go through all of their own theories before giving me a my referral even though I tell them what my situation is. Once they finally look at my record to see the history (usually takes me getting angry and making my headaches worse), it takes several weeks for the referral to come through. Then I have to wait for an appointment with my neurosurgeon/ENT team which takes another 1-2 months. Fortunately, "my team" (a neurosurgeon and an ENT specialist) are only a 2 hour drive away and are definitely lifesavers.
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Unread 12-30-2011, 05:04 AM   #36
pupp
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Thanks for the myleogram examples.

My neurologist & his consultant anaesthetist have been very reluctant to make any more holes in my dura since I don't seem to be healing on my own from the suspected sponaneous leak.

I totally understand why he thinks it's counter intuitive to stick needles in me and possibly make it worse but I feel that after 8 months of not healing on my own we may have to crack eggs to make an omlett.

My thinking is that if they find the site of the leak they can try a blood patch there and also where they go in for the myleogram. If they don't find the leak then, if needed, they can still do a patch at the myleogram site to mend that & i'm no worse off than now.

I know that having a blood patch isn't a breeze but if it's what I need to get some relief then, knowing the risks, I would opt for it at this stage.

If there are any other tests, procedures or advice out there I'd be so thankful to hear about them!

Here's to 2012 x pupp
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Unread 01-19-2012, 11:32 PM   #37
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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?
I absolutely love your assessments but what really made me smile, no laugh was the Mr. Perfect Doctor anaolgies. This is so true. I am experieicing the exact issues. My PCP just prescribes meds to mask the issues after thinking it was ear infection, allergies, sinus probs...etc. So I take chronic pain meds and he sent me to a pain specialist. This doctor performed a spinal injection which magnified the symptoms 10-fold and then added some.
BUT, after teeling him the ER doctor said it may be a leak, he got an appt for a neuro which takes 3mos to get into for the next week! AWESOME DUDE...but he said it wasn't a leak in the same sentence!
So, I totally AGREE! Doctors don't like to be wrong and heaven help you if you suggest a diagnosis like I did. BUT...like you said...this is my body...so when I go into this neurosurgeon on Tues...I am taking this list of symptoms a mile long!
I will take NO PRISONERS! I am tired of suffering! I am sick of these self-righteous know-it-alls! I am the same kind of person...very meek and mild and VERY GOOD at hiding my pain and suffering. BUT...no more MS. NICE PATIENT!.....
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Unread 03-21-2012, 07:39 PM   #38
pmary
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I stumbled upon this site yesterday 2/18/09 while looking for more information on a great dr. I just saw at Cedars-Sinai in Los Angeles. Dr. Schievink is wonderful as I just got back from LA 1 1/2 wks ago after he attempted to repair a CSF leak on me. It sounds like you would be a great candidate for him. He is very easy to get in to see as he seems to work his patients in very quickly. He is extremely busy but his whole goal seems to be getting those with a CSF leak repaired.
How long did it take for your symptoms to go away? I had a seond BP with Dr. S a month ago. I do not have headaches now but still cannot walk far without feeling aggravation in my head and still have numbness, nausea, chills with lowered temperature and some draining feeling by my left ear. My symptoms are worse in the morning as I believe I may leak a little at night but then build fluid during the day. Any answers you can give me would be appreciated.

Thanks,

Mary
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Unread 04-06-2012, 08:56 AM   #39
Munchkinsdad
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Hi all!
I'm new here and just happened on this site and thread. I've had a constant severe headache for 4 months straight now. Not only that but dizziness, nausea, blurred vision, high bp, irratic heart beat, numbness in extremeties. It just came on suddenly after dinner in December.
So far, no one has figured out whats wrong. They thought I had a Chiari Malformation as my brain had sunk, but it wasn't low enough for surgery. Others said my symptoms were from diabetes. We've looked into rare poisonings such as manganese, black mold, lupas...all of wich carry the same symptoms. I know diabetes is a progressive killer but at the time I was pretty healthy, physically active in my job and played racquetball 10-12 hrs a week. Since this dehibilitating pain and other junk, I've become a useless waste. Just recently I had to go to er with possible stroke symptoms (numbness on right side of body). The ringing in my ears is extremely loud and quite often I will get a stabbing pain down the side of my head and then my ear would close up and ring like hitting a tuning fork. And to date i now get burning needles in my arms and face, diarea, loss of memory, dizziness, hallucinations and lack of appetite.
Im not one to take medication, hate it in fact, so I had been dealing with the pain and symptoms medication free until recently because the doc said to at least try to relieve the pain so that they can diagnose the real problem.
Well after a dozen different pain medications that didn't work, the last anitriptolene or whatever it's called, I went to neurologist and she came up with csf leak. I've had 5 MRIs, 2 CAT scans and lumbar puncture previously which showed opening pressure of 5.
So this week I have to get 2 more MRIs with contrast to see if there are any leaks in my spine. If that doesn't show they will inject some neuclear junk in my spine to find the leaks, if any.
I wake up with this and go to bed with it. Social life is worst than before because I can't deal with all the chaos and distractions.
Anyway, the symptoms seem to fit. I haven't tried to lay down yet to see if it lessons the pain but if I remember after hitting the "submit reply" button I will check it out...
Thanks for reading this and I may be glad I found this site!
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Unread 06-01-2012, 12:37 PM   #40
*denise
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Smirk Spontaneous CSF Leak

I am new to this forum and looking for solutions. I was diagnosed in Jan 12 w CSF leak. Have been hospitalized 4 times w 4 blood patches & have had numerous tests to locate leak(s) & determine next steps. Currently on extended med leave as can not sit up for long periods of time w out head feeling empty, build up of pressure & fluid leaks from my nose. I am trying to learn if anyone has come across self help measures that have worked for them? I am eating better, taking calcium & fish oil & will start a water aerobics class next week. I have read that yoga strengthens your inner core which is your spinal cord. I don't think I am quite ready for that so will see how water aerobics works to perhaps stimulate the production of CSF. My neurosurgeon here characterizes this condition as very frustrating for the patient as well as the doctor trying to treat them. He tells me it will be a long slow recovery. I am just trying to stay out of the hospital. In addition to self help strategies I would be interested to learn if there are any other medical treatments beside blood patches and infusions that have worked or anything new happening. I look forward to hearing your responses. Thank you.
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