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07-01-2011, 10:29 AM
LeakingnHissinginPotomac
New Community Member Join Date: Jul 2011
Posts: 23

CSF Leak and Tinnitus
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I am new to this site. I have had severe headaches (relieved when horizontal) and horrible tinnitus (hissing, buzzing sounds) for about 6 months. After a number of MRIs (brain and spine), which showed indirect evidence of low pressure from CSF leak and spinal abnormality, my neurologist put me on a bed rest. I completed 12 days. No positive results. Then my neurologist referred me to a neurosurgeon. I had a CT Myelogram showing a CSF leak in thoracic section of spine. A few days ago I had my first blood patch with 10 cc's followed by two days in bed. No positive results. I will be meeting with neurosurgeon next week to discuss next step. It may be another blood patch with more blood. I have read about fibrin glue patch getting better results and am wondering why this isn't used earlier, instead of a second blood patch. Comments? Also, are there any others out there who suffer from raging tinnitus related to to the headaches? There are times when the top of my head feels like an electrified field and I don't know if this is from the tinnitus, the CSF leak or the combination.

LeakingnHissinginPotomac

#2
07-03-2011, 04:35 PM
LauraL840
Distinguished Community Member Join Date: Apr 2007
Location: NC, USA
Posts: 2,132


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IF you can travel, or have someone who can drive you, you should consider contacting DR. Linda Gray-Leithe (Dr. Gray) at Duke in Durham, NC.

She is a neuroradiologist and specializes in treating spinal level leaks and can very possibly be of help to you!
__________________
Laura

Better is one day in your courts than a thousand elsewhere...

#3
07-05-2011, 04:48 PM
xtcds1
Community Member Join Date: Aug 2010
Location: British Columbia, Canada
Posts: 45

Tinnitus
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Tinnitus has been a big component of my CSF leak. At 1st it was a low frequency rumble (like a helicopter) with thearing loss. Once the leak was fixed it became a high frequency squeal (like a tea kettle) and the hearing returned.

My leak has now sealed and the headaches are gone but the tinnitus remains. It's a difficult problem to solve. Nothing makes it go away but stress, worry etc will make it worse so I try hard to control that. My thought is my post leak symptoms are very similar to a post-concussion syndrome. I've found graded exercise, good sleep and mental challenges have helped more than anything. I still believe time will heal me, just more time than I ever wanted to spend.

Good luck, I hope your leak gets sealed quickly.

#4
07-06-2011, 02:46 PM
LeakyLaurainwv
Distinguished Community Member Join Date: May 2009
Posts: 122


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I did a blood patch x 2 followed by fibrin glue. None helped but the surgery in LA did for 2 years. Not sure if I am leaking again now, but praying I am not! I saw schievink in LA. So glad I went. 2 years without the headache is $ well spent! You can find more of my story in old posts, but I hope they figure u out soon.

#5
07-07-2011, 10:27 AM
LeakingnHissinginPotomac
New Community Member Join Date: Jul 2011
Posts: 23

CSF Leak and Tinnitus
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To LauraL840, xtcds1 and LeakyLaurainwv,
Thank you for your responses. I have read some posts, but many, many more to go.

I am going to have a second blood patch procedure in the next 10 days or so. This one is to be a double with higher volume.

My primary goal is to get my CSF leak sealed and no more headaches. But I have to say that I thought and was hoping that once the leak is sealed, that the tinnitus would go away. The articles I have read indicate that tinnitus is commonly associated with Intracranial Hypotension and CSF leaks. So I thought, once the main problem is fixed, the other gets fixed.

To xtcds1, it is wonderful that your leak is sealed and your headaches are gone. I am sorry that your tinnitus remains. At times, my tinnitus is horrible. The hissing is so loud. Also buzzing, like live electrical wires. And as I said in my first post, there are times when the top of my head feels like an electrified field and I don't know if this is from the tinnitus, the CSF leak or the combination. Caffeine seems to help the headaches to a limited extent but it seems to increase the tinnitus. I did become a member of the American Tinnitus Association and found some helpful info on the web. But for now, dealing with the tinnitus is secondary to dealing with the headaches and the CSF leak.

Thanks again to all for your helpful information and support.

LeakingnHissinginPotomac

7-7-11

#6
07-07-2011, 03:26 PM
xtcds1
Community Member Join Date: Aug 2010
Location: British Columbia, Canada
Posts: 45


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I know exactly what you mean about the tinnitus "feeling" being worse than the sound itself. It is a bit like a dental drill: the sound is bothersome but it's that high frequency vibration and feeling that is the worst.

Wish I had an answer. Tinnitus is so common but poorly understood and treated. The best thing I've found is to try and just forget about it! The various therapies all seem to focus on getting you to NOT focus on the tinnitus. Easy to say, hard to do! Let me know if you found any tricks

You mention that your brain MRI showed evidence of a leak. Was it brain sag? meningeal enhancement?

#7
07-07-2011, 06:41 PM
LeakingnHissinginPotomac
New Community Member Join Date: Jul 2011
Posts: 23

CSF Leak and Tinnitus
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Regarding the tinnitus, your description of high frequency vibration really captures one of the sensations. The other primary sensation is the hissing, like steam coming out of a pipe or radiator.

I have not found any magic wand or tricks for the tinnitus. We have a fan in the ceiling of the bedroom and in a couple of other rooms of the house. The background hum of the fan helps. I saw a YouTube clip where a tinnitus sufferer turned on three fans before going to sleep and the whirring of the fans helped him. There are music CDs of rain falling and waterfalls etc. that are supposed to help but I haven't tried them (yet). I am told that there are some hearing aids that are supposed to alleviate the tinnitus. You probably know all this and more.

The CSF leak was shown on the CT Myelogram. I had two brain MRIs (one in January, the other in April). The radiologists who read them did not see any evidence of low pressure. In May my neurologist at that time and his radiologist saw some evidence of enhancement. My neurologist ordered a spinal MRI, which then showed an abnormality of the spinal cord in the thoracic area (which the docs now think is likely unrelated to the CSF leak). After a bed rest period, which didn't fix my HAs, my neurologist referred me to a neurosurgeon, who ordered a CT Myelo, which was performed by a neuroradiologist. My understanding is that my CSF leak is a slow leak. None of the doctors has said anything about brain sag.

Question: I have seen "DH" in some posts. What does this refer to?

LeakingnHissinginPotomac

7-7-11

#8
07-07-2011, 09:38 PM
xtcds1
Community Member Join Date: Aug 2010
Location: British Columbia, Canada
Posts: 45

Wow!
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Our tinnitus descriptions seem to be identical. I too have this hissing sound like a tea kettle.

Are you still bothered by the headaches? Are they still positional (ie better lying down)?

#9
07-07-2011, 11:24 PM
LeakingnHissinginPotomac
New Community Member Join Date: Jul 2011
Posts: 23


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Are you still bothered by the headaches? Yes. Very much.

Are they still positional (ie better lying down)? Yes but the tinnitus is not better when I am horizontal. And sometimes it is hard for me to distinguish between sensations in my head - - is this headache pain or tinnitus buzzing and vibrations?

For a short time I was doing physical therapy because the neurologist I went to at the time thought I might have "cervicogenic headaches." The therapist had me do an exercise with a ball (about 6" in diameter, not fully inflated) placed between the crown of my head and the wall. First the forehead, then one side, then the other side, then, the back. In a particular position, I could get the tinnitus to decrease significantly for a few seconds while I held the position. It was strange but the quiet for a few seconds was wonderful.

LeakingnHissinginPotomac

#10
07-08-2011, 09:57 AM
Robbysmom5
Distinguished Community Member Join Date: Aug 2008
Location: NY
Posts: 556


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Quote:
Originally Posted by LeakingnHissinginPotomac
Question: I have seen "DH" in some posts. What does this refer to?
Dear Husband

Good luck with your second patch. I hope it seals you for good!
__________________
Jeanne
Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009) Robby's Leak Story

07-09-2011, 09:18 AM
LeakingnHissinginPotomac
New Community Member Join Date: Jul 2011
Posts: 23

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Thank you. The advice, information and support are much appreciated. I feel that I have a new group of good friends.

LeakingnHissinginPotomac