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Old 02-21-2013, 02:53 PM   #1
baby_diver
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Default Post CSF leak support/question

Hello all

I'm reposting my intro below - hope that's ok. Was directed to this subgroup.

I've been trying to research post treatment support for people who've suffered from CSF (cerebrospinal fluid) leaks. Happy to talk to anyone but I'm based in Reading, UK.

I got hit with the symptoms back on 30th November 2011 and although was treated swiftly initially (go NHS! ) including CTs, MRIs, failed 7 attempts at lumbur puncture by a junior doctor, they performed a blood patch which initially worked and then failed after a few days. When the symptoms re-occured they tried to say it was migraine; luckily I 'was seen swiftly privately' instead, and got treatment but the fluid levels took a while to regulate and the whole experience meant I was off work for 3 months, back full time after 4 months.

I guess I was just wondering if anyone has struggled with the after-effects as well of this feeling of not being believed/CSF leaks in general, or whether you've been pain free and they've left you alone.

There's just NO information out there on post blood patch/CSF leak long term effects, etc.. have you found your leaks came back? This was a one off for me so far, I have a small child, and the thought of one day waking up with "THAT pain" again frightens me quite frankly...

Thank you for any insight or thoughts you may have - really appreciate any input.
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Old 02-25-2013, 06:29 PM   #2
MsJulie
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Hello, I had a spontaneous CSF leak that started one night in April 2012 and progressed until June. Excruciating pain and vomiting caused me to go the emergency room 3 times, once by ambulance. Intracranial hypotension was diagnosed after an MRI and a blood patch was done June 11th. They told me to take it easy for 1 day then resume my normal schedule, which I did. Two weeks later it failed and a second blood patch was done June 26th. This time they told me to lay completely flat for 7 days following the procedure. I was taking no chances on being in pain like that ever again so I withdrew from school for a term, stayed home and took it easy. By late August my head was feeling less like wood and I could walk up and down the stairs. I returned to school August 27th and have been perfect ever since, 5 months. I do take it easy physically, and I would not do ANYTHING that might contribute to me ever having another leak. I, like you, really wanted to read about people who got better, which is why I took the time to write to you. Take care and I wish you the best!
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mullein (07-12-2016)
Old 03-03-2013, 11:43 PM   #3
wojo
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Confused How to collect fluid from ear to test for CSF?

I'm a 70 year-old female in relatively good health. About 1 1/2 yrs. ago I had ear infections that didn't go away with repeated treatments with antibiotics. The ENT placed a tube in my right ear. After that my right ear leaked large amounts of fluid during the night--so much that it soaked my hair and left huge spots on my pillow. After a few weeks, the ENT sucked fluid from my ear, but did not test it.

The spots on the pillow had what appeared to be a halo around them. After a month of continued leaking (which diminished somewhat over time), the ENT sent me to my neurologist who saw the tell-tale salt-looking granules in my ear. (I have a small 1/2-inch left front lobe meningioma which has been stable for years.) I have stage 3 kidney disease, so he did not want to give me an MRI with dye, so he just ordered a plain MRI which was negative. The drainage diminished over time and after a few months, the ENT removed the tube.
I continued to feel a fullness in my head. I became very sick in Dec. 2013 with acute sinus infection and fluid in my ear. After three rounds of antibiotics and two rounds of steriods, the ENT placed a tube in my right ear around the middle of February and he sucked out some fluid at that time. Immediately my ear started draining onto my pillow each night and appears worse when I have been very active during the day. I went back to the ENT a few days ago and he didn't see any fluid, but it continues to drain at night.

I generally have a bad headache when I sit up each morning. There is very little drainage during the day, but my ear constantly feels wet. Can the doctors (or me) swab the fluid in the morning and test it that way to see if it's CSF? Or what other tests short of having a spinal tap would reveal if I do have a CSF leak? Also, could the doctor have slipped when he placed the first tube and cut the lining holding the CSF? Any help anyone/advice as to my next step would be greatly appreciated. I also have the extreme fatigue, and have begun experiencing blurry vision (had eye test in Nov and all was well), and occasional dizziness when walking. I really need to know what my next step should be.
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Old 05-15-2013, 07:02 PM   #4
Berthabutt
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Quote:
Originally Posted by baby_diver View Post
Hello all

I'm reposting my intro below - hope that's ok. Was directed to this subgroup.

I've been trying to research post treatment support for people who've suffered from CSF (cerebrospinal fluid) leaks. Happy to talk to anyone but I'm based in Reading, UK.

I got hit with the symptoms back on 30th November 2011 and although was treated swiftly initially (go NHS! ) including CTs, MRIs, failed 7 attempts at lumbur puncture by a junior doctor, they performed a blood patch which initially worked and then failed after a few days. When the symptoms re-occured they tried to say it was migraine; luckily I 'was seen swiftly privately' instead, and got treatment but the fluid levels took a while to regulate and the whole experience meant I was off work for 3 months, back full time after 4 months.

I guess I was just wondering if anyone has struggled with the after-effects as well of this feeling of not being believed/CSF leaks in general, or whether you've been pain free and they've left you alone.

There's just NO information out there on post blood patch/CSF leak long term effects, etc.. have you found your leaks came back? This was a one off for me so far, I have a small child, and the thought of one day waking up with "THAT pain" again frightens me quite frankly...

Thank you for any insight or thoughts you may have - really appreciate any input.
I have had several leaks and several surgical repairs. After each surgery I was so much better, but then I started feeling bad, no nightmare headaches though, more fatigue, weakness, difficulty thinking, and then another leak was found. My last surgery was 5/19/12. Knock on wood. I have done well. Only very occasional headaches. Dr. Schievink at Cedars Sinai is a great neurosurgeon. He specialized in CSF leaks.

I did not have a blood patch because I had heard they had a low success rate. I wanted fixed for good. But it doesn't always happen that way. Still I consider myself very lucky. This last surgery, I took it easy to make sure I healed. I don't over do anything especially lifting.

Hope, Health, and Happiness,
Berthabutt
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Old 05-19-2013, 07:17 PM   #5
audyb1
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Default not just you

Quote:
Originally Posted by baby_diver View Post
Hello all

I'm reposting my intro below - hope that's ok. Was directed to this subgroup.

I've been trying to research post treatment support for people who've suffered from CSF (cerebrospinal fluid) leaks. Happy to talk to anyone but I'm based in Reading, UK.

I got hit with the symptoms back on 30th November 2011 and although was treated swiftly initially (go NHS! ) including CTs, MRIs, failed 7 attempts at lumbur puncture by a junior doctor, they performed a blood patch which initially worked and then failed after a few days. When the symptoms re-occured they tried to say it was migraine; luckily I 'was seen swiftly privately' instead, and got treatment but the fluid levels took a while to regulate and the whole experience meant I was off work for 3 months, back full time after 4 months.

I guess I was just wondering if anyone has struggled with the after-effects as well of this feeling of not being believed/CSF leaks in general, or whether you've been pain free and they've left you alone.

There's just NO information out there on post blood patch/CSF leak long term effects, etc.. have you found your leaks came back? This was a one off for me so far, I have a small child, and the thought of one day waking up with "THAT pain" again frightens me quite frankly...

Thank you for any insight or thoughts you may have - really appreciate any input.
Ya, AUD here. New Mexico USA.
I have been leaking for 10 months since the epidural in child birth. I have endured 5 blood patches. My primary doesn't even know what a dural repair is and thinks a CSF leak is "impossible". The doc that did my myleogram said he saw a leak in the room and that I was very low on fluid but his report said the opposite. A neurosurgeon in Lubbock TX viewed the disk and said he saw 2 leaks and a possible 3rd but that he didn't work on leaks, his report was "patient says she has orthostatic headaches, possible CSF leak". I just saw another Neurosurgeon in Dallas TX that I paid for myself and he lied about looking at the disk, gave me a COMPLETELY FALSE report stating that he checked me up and down(he never touched me), said my eyes were reactive to light(not a flashlight in the room), pulled a blood pressure and pulse out of the air, said I was weepy, too well groomed to be suffering any real problems, that my pain is a 5 on a scale of 1-10(which I was never asked) and wrote that my pain at times interferes with my house work( a knock on my being a homemaker I guess). The patient advocates on the base who I asked for help getting my doc to refer me to neuros told me I was too upset and asked "what was really going on?" insinuating that I'm faking headaches, vomiting, blackouts, interscalpular pain, kidney pain, heart palpitations, neck pain and lumbar pain because my husband is deployed. My mother-in-law keeps telling me its just migraines....I think CSF leak is a bad word in the medical field. You are not the only one who feels unbelievable. Good luck to you, AUD
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PamelaJune (08-23-2014)
Old 09-29-2013, 01:33 AM   #6
shocked-n-tx
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Default cfs leak

I took an electric shock to the ear while transcribing minutes using a transcribing machine. At first just a little tender around the ear..but the passion, swelling, fullness, parasite in my pressure head. 30 days later I'm well on my way on an 8 year journey to find relief from my suffering.

Most Dr.'s blew me off when they didn't "see" anything wrong when they looked in Mr ear. . 8 yrs., 14 ENT's later ifound results from a neurologist st the bum center who sent me over too a nerve specialist..3 nerve block solved pain but no one can figure out whst is causing fluid draining from my behind ear, and down the back of my throat. the increased cranial pressure and discount possible csf leak...i think they are wrong

most Dr.s don't know any thing about csff leaks get offended if you question them how do you get past that
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PamelaJune (08-23-2014)
Old 10-11-2013, 11:21 AM   #7
Princessamiss
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Default Csf leak

Audy, I also live in NM. Did you ever find a dr. Here, or did you go elsewhere?
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Old 10-26-2013, 10:11 PM   #8
Ccozeck
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Help CSF leak

Hi I'm a 29 old woman that was recently diagnosed with a CSF leak. I've been on bed rest for four weeks. I've gone to several dr appointments and they have ran multiple tests and still can NOT find the leak. I have dizziness, a throbbing headache when I stand up, irritability, insomnia, and fatigue. Has anyone else experienced the dr's not being able to find the possible leak? Any reply would be appreciated. I've felt very alone in this journey. So glad I found this site.
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Old 04-10-2014, 11:33 AM   #9
Tinkertoo
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Quote:
Originally Posted by baby_diver View Post
Hello all

I'm reposting my intro below - hope that's ok. Was directed to this subgroup.

I've been trying to research post treatment support for people who've suffered from CSF (cerebrospinal fluid) leaks. Happy to talk to anyone but I'm based in Reading, UK.

I got hit with the symptoms back on 30th November 2011 and although was treated swiftly initially (go NHS! ) including CTs, MRIs, failed 7 attempts at lumbur puncture by a junior doctor, they performed a blood patch which initially worked and then failed after a few days. When the symptoms re-occured they tried to say it was migraine; luckily I 'was seen swiftly privately' instead, and got treatment but the fluid levels took a while to regulate and the whole experience meant I was off work for 3 months, back full time after 4 months.

I guess I was just wondering if anyone has struggled with the after-effects as well of this feeling of not being believed/CSF leaks in general, or whether you've been pain free and they've left you alone.

There's just NO information out there on post blood patch/CSF leak long term effects, etc.. have you found your leaks came back? This was a one off for me so far, I have a small child, and the thought of one day waking up with "THAT pain" again frightens me quite frankly...

Thank you for any insight or thoughts you may have - really appreciate any input.
Hi Baby Diver
I was very interested in your message. I had a lumbar puncture and leak in 2011 following a car accident. I was left in a really bad way following the leak but wasn't given a patch. The headaches subsided but I am however continuing to get strong heart palpitations three years on. These seem to be directly linked to how hydrated I am - hence my interest in a possible ongoing leak.
If I don't drink about 4 litres of water a day I'll get the palpitations at night and if I drink any more than 3 glasses of wine they'll come on very strong. The palpitations give me insomnia. I've been back to the hospital and been checked out my multiple consultants relating to cardiology but they haven't found any cause.
If you have any updates to your enquiries I'd be very grateful if you could share.
Thanks!
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Old 08-20-2014, 10:43 PM   #10
shannonhb
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Default Not alone...csf leaks

I've had my fair share of experience with csf leaks. Started having the headaches in November (along with the vomiting, etc.). One neurologist tried telling me it was migraines from being a woman and eating chocolate. I was discouraged for some time and figured the migraines would just go away. Time passed and they got worse. Even my high pain threshold couldn't handle it by the end. I couldn't be upright without vomiting. One day I started losing my hearing and that ultimately got me moving to find out what truly was going on. Two ER visits later I was hospitalized to figure it out. Ultimately the chief cardiologist on my team figured it out based on my symptoms and my elevated heart rate when I was upright. They did an mri and found the telltale signs. They did two blind bloodpatches but the symptoms returned within days if not hours...I knew as soon as they put me upright that it didn't work. I had a myelogram to determine where the leaks are and they measured how low the pressure was and the doctor said it was the lowest he'd ever seen. They did a third blood patch where the leaks were located and it improved a bit but again the symptoms were slowly returning. I was then told to consult a neurosurgeon at an educational institution.

Long story short in total I had those three initial blood patches that didn't work and had complications including hearing loss problems and tinnitus, as well as vision loss problems. I then had two fibrin glue injections and three more blood patches, all of which failed. I then had invasive spinal surgery where they did two dural patches and put in a temporary drain while I was completely immobile and on flat bedrest for five days while hospitalized.

The symptoms have greatly improved. I think there's still a leak since the hearing and vision loss are still there and a "lighter" headache. But the neurosurgeon I'm working with in Chicago is experienced with csf leaks and says he won't be satisfied without having his patients back at 100%.

Has anyone else had a dual patch? And what talked / was it successful?
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