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Old 03-23-2011, 07:48 PM   #21
venusny31
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Thumbs up csf leak of unknown cause

For the past 5 years I have been seeing doctor after doctor including an ENT group for continued progressive hearing loss. I also had a few dizzy spells in July 2010. Every doctor kept telling me I had allergies and to take various allergy medications. When it got to the point of not being able to hear at all I went back to the ENT looking to get a hearing aide. He did a myringotomy and then when the fluid was found to be clear suspected a possible CSF leak. He sent me for a CT scan and then an MRI. It turned out that I had leaks on both sides of my skull. Refered me to an ENT surgeon who then pointed me to a Nerosurgeon. This was all within a weeks time. The rush was on because now I had two ear drums with CSF leaking out of them and a greater chance of meningitis. My Nerosurgeon (who by the way is one of the best doctors in the world as far as I am concerned), acted quickly to put in a VP shunt. Opening the shunt up allowed my ear drums to heal within a few days. Thinking that the leak is a sympton of something else (possible spontainious leak, possible intercrainal hypertention). After trying to adjust the VP shunt over the course of several weeks we finally found a sufficent setting but it was still not improving my hearing. Two weeks ago my doctor decided to repair the right side of my head. The leaking looked worse on the right side and apparently the right side of the brain has a little better chance of risk issues since the left side has more function. Well all I can say it is it has been two weeks. Had my stiches removed today. Feel pretty good. It looks like the right side and left side are improving with less leaking. My hearing has improved in both ears slightly. Right side has been repaired with a crainiotomy and fat layering. The left side seems to controlled by the shunt. Both my husband and I are hopeful that this may be the end of the 5 year ordeal. It is very frustrating if you do not have a surgeon who is willing to listen and care. I for one had the best around. I highly suggest Albany Medical Center in Albany NY. Their nero science department is OUTSTANDING. I can not say enough about the quick reponse and the level of care that they provided me. I am not sure what the future holds but I know who will be treating me for it. There is no other place I would ever go. Thank you Albany Med and Doctor D.
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Old 04-25-2011, 08:08 PM   #22
bbo02
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Default Seeking Advice for Spontaneous CSF Leak

I saw this post, and I would really like any advice you can give on how to treat a spontaneous CSF leak. It took about 1.5 months to figure out what what going on with me, but a neurologist finally did an MRI of my spine and a spinal tap and found that I had a leak, but they couldn't see where it was. I have had two blood patches in 3 week, and although I feel a bit better, I'm not back to my old self yet. Is there anything else I can do or advise my doctor to do? He is having me take caffeine, drink lots of fluids, and rest. What are some other options. I am a 27 year old active female, and I really just want my life back.


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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.
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Old 08-07-2011, 11:13 AM   #23
venusny31
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Default

Quote:
Originally Posted by bbo02 View Post
I saw this post, and I would really like any advice you can give on how to treat a spontaneous CSF leak. It took about 1.5 months to figure out what what going on with me, but a neurologist finally did an MRI of my spine and a spinal tap and found that I had a leak, but they couldn't see where it was. I have had two blood patches in 3 week, and although I feel a bit better, I'm not back to my old self yet. Is there anything else I can do or advise my doctor to do? He is having me take caffeine, drink lots of fluids, and rest. What are some other options. I am a 27 year old active female, and I really just want my life back.
I went through various doctors till I was dianosed and finally found one who would be willing to help me and not just tell me to take 2 asprin etc. You may need to seek out a doctor who has delt with this before. I have not had a blood patch but I heard you may need many of them before it actually works. I have had my leaks repaired but now I think I have another one. My nerosurgeon is planning on sending me for a nuclear cystigram which supposidly helps locate the leak as well as determing for sure you have one. Good luck.
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Old 08-21-2011, 06:49 PM   #24
venusny31
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Default more on csf leaks

Well thought I would throw out and update to everyone. Been suffering with low pressure headaches for several weeks now and slowly getting worse by the day. Also ringing in the ears and slow nose drip. Last Thursday got so bad went to the hosptial ER and you guessed it. Another leak has appeared and this one must be operated on to get my life back. I can not stay out of bed for more than 20 min at any time. Get my leak repaired this Wed and hopefully it will not start up again. this makes 4 surgeries on my head in less than a year.

this condition sucks.
Ill keep you posted.
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Old 09-23-2011, 06:33 PM   #25
micrazy
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Default Possible CSF Leak and terrified...

Well not diagnosed but dr suspects I have a leak... He has me on bed rest, caffeine and steroids & lots of water but there are good days and bad days and seems the bad days are becoming more numerous. Still have to wait a few weeks till I find out what his next step is cuz he also has me on anti-seizure meds for migraines. No way I have a migraine. Tell me anyone you know that suffers migraines that majority of the time can feel better when laying down and gets worse while upright?

After some research I was anxious and excited to take that next step and be over this but now I after reading this forum I am scared!

venusny31 how many times you had leaks and what causes them or at least the first one?

Everything I read online said most epidural blood patches gave immediate relief but occasionally a few more would need to be administered. Someone show me there is a silver lining and something to look forward to please?

Also... I have recently last 5 days had diarrhea and the nausea has gotten alot worse that I have to take meds now, is that normal? I had read that nausea and vomiting are but hadn't heard about diarrhea... on the good side, since this started, Aug 2nd, I have lost 21lbs hehe... just 20 more to go to target weight hehe guess that is a silver lining!
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Old 09-26-2011, 01:17 AM   #26
sueh
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Default Hope after spontaneous csf leak

I had a spontaneous CSF leak 9 years ago. I was one of the lucky ones that got diagnosed right away but they were unsure how to treat it. Long story short, Get the MRI to confirm diagnosis. Skip the cisternagram, a useless test in most cases, never did show where my leak was and was VERY painful! Bed rest didn't work either and resulted in horrible ringing in my ears. Go for the blood patch. I needed two of them but it did the trick. It took a good 6 months to really feel myself again but I am fine now and never had another reoccurance.
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Old 09-26-2011, 01:14 PM   #27
micrazy
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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
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Old 10-04-2011, 12:50 PM   #28
Kemaxwel
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Default Spontaneous Spinal Fluid Leaks

I first experience a spontaneous spinal fluid leak about 8 years ago. That one was fixed and everything was OK for two years and then I started having symptoms again. Each one has had a different set of symptoms, it's been a crazy adventure. The very first one as soon as I would sit up I would have excruciating headaches and they would go away if I laid back down. The first doc I saw tried to tell me I had a Chiari's Malformation but I had one symptom and this one symptom did not appear on the Chiari's list of symptoms. At this time I was in high school so my parents insisted I be transferred to a better hospital. I was transferred to Duke and the doc that saw me immediately said spinal fluid leak! I just waited it out taking caffeine pills and the headaches went away in about a month.

I had one again about a year and a half later but before I could make it to the doctor to have it patched I was in a car accident and during the time I was laying low from that it fixed itself. Everything was all peachy for 5 years then one afternoon I have a headache, these headaches were all too familiar and I held an experiment and made a trip to starbucks and drank a beverage with an extra espresso shot and away the headache went. I made an appointment with my neurosurgeon and he sent me to a radiologist who dealt with the leaks a lot. She did a patch with we thought was successful.

About a month later I started having major back pain, it was bad. I went to see someone at a Back Institute and an orthopedist who specialized in scoliosis correction to make sure nothing was wrong with the hardware I had from a previous scoliosis correction. Nothing was wrong and nothing worked to make the pain go away and during this time my left hand had just about completely stopped working. I had a scan of my neck and there was a big pocket of fluid and at this point the orthopedist said this was a neurological problem and sent me to my neurosurgeon. I was then sent back to the radiologist and she did a milogram to find the leaks, she found one really big leak, this time she used the glue instead of my blood. Everything seemed peachy for 2 weeks and the back pain came back, this time I had the radiologist info so I didn't have to go to my neurosurgeon I could just call her.

I went in to see her and she said the leak she repaired 2 weeks before may have been masking other ones so we did another milogram and low and behold I had 9, yes 9 leaks. She patched those, I had an allergic reaction to the glue (which is somewhat common after the first time it's used on you because it's not matched to your blood type, it doesn't have to be) and so far everything has been good.

I have a connective tissue disorder called Marfan Syndrome and lucky me your dura has the same problem as your connective tissue, it can't hold it's form as good as a normal person. I have been doing some research and trying to find ways to prevent the leaks, this is not something I want to deal with every 1 to 2 years or more frequently than that.

Has anyone found anything in regards to prevention? Are there supplements that can help your Dura?

Also, a few of you have commented on how uncomfortable the test is to locate them, I have had milograms to test my pressure and find mine, I don't think anyone has mentioned that. I would not say they are overly uncomfortable. I really don't feel any of it, the worst part is the burning from the numbing medicine and every time that I've had one so far when they take it out it hits a nerve and I kick my right leg unintentionally. Which is more amusing than anything.
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Old 10-17-2011, 11:27 AM   #29
NewToBlog
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Confused Dura healing questions

I had CSF leak after a surgery last year: had a schwannoma (tumor) on my nerve inside the spinal cord. The leak started three days after the surgery, all the standard symptoms, the headache went away about two days later. I didn't know CSF was still leaking. Two days ago they had to open my back again, take all the fluid out, patch the dura.
Now I am afraid of everything: lifting a mug of tea, pulling a heavy comforter, putting on a heavy jacket....
This morning I woke up with the familiar ringing in the ears. It might have started leaking again. I have a couple of questions:
Coffee - I read it helps to slow and stop the leak. Is that true? Or does it help with the headache?
Should I be lying on my back? Or is any horizontal position good? On a side, for example.
I heard enzymes (wobenzym or vitalzym) help healing fast. Did anyone try them?
Thank you!!!
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Old 10-22-2011, 05:59 AM   #30
tessme
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What a saga, but sounds so familiar. Apathy and arrogance must be universal in the medical system. It is ironic how uncaring the caring profession can be. I agree with you : one can't be meek, but it takes some stamina to find your way around the system.
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