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I had a csf leak from a microdiskectomy that went unrepaired…

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I had a csf leak...
I had a csf leak from a microdiskectomy that went unrepaired for 14 mos. Despite the repair, I continue to have an audible clicking and popping sound from my head when I change from horizontal to vertical or apply any type of vasalva (video 1). This same sound occurs at random but typically after quick elevation changes or extreme exertion (video 2). My biggest problem is the daily headaches and stiff neck. I have placed two videos online to show you. 1. https://youtu.be/zEirwHwir5Q and 2. https://youtu.be/zEirwHwir5Q. There was some thought this might be sinus related so I had sinuplasty 8 weeks ago. It did not change the problem. I have taken 3 rounds of methylprednisone, 12 months of gabapentin and venlafexin, continuous nasal sprays and steroids. Nothing has helped. Your thoughts are greatly appreciated.
Submitted: 3 years ago.Category: Neurology
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Customer reply replied 3 years ago
Most recently, the Drs. believe this is some type of myoclonus as a result of the initial discectomy
Customer reply replied 3 years ago
They don't feel that the muscles of the middle ear are large enough to generate such loud audible sounds and are pointing at other muscles that are connected to the skull, hence, the headaches. I still am not certain that this is not spinal fluid related somehow. Pressure or other.
Customer reply replied 3 years ago
I am not sure if I mentioned. But my hearing is impacted as well.
Answered in 17 minutes by:
6/16/2015
Neurologist: DrRussMd, Board Certified MD replied 3 years ago
DrRussMd
DrRussMd, Board Certified MD
Category: Neurology
Satisfied Customers: 65,673
Experience: Internal medicine doctor, diagnose and treat neurology patients, many years
Verified
Hello
What type of physical therapy have you had through all of this.
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Customer reply replied 3 years ago
I had physical therapy while I had a leak, majority of it was stretching and tenz unit. Since the repair, I have had multiple sessions of acupuncture (10 sessions), 6 months of 3 days per week visiting a PT/Chiropractor. Most of the therapy is stretching neck muscles, pinpoint adjustments using a spring loaded pistol-type tool of the vertibrae, and vibration plate therapy. I have also had a few sessions of cognitive therapy to build awareness and control thoughts due to the pain. Thanks for the question.
Neurologist: DrRussMd, Board Certified MD replied 3 years ago
what about an MRI of the cervical spine recently
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Customer reply replied 3 years ago
As you know, after the repair in March 2013, I continued to have issues. 12 months following the repair in March 2014, I had another surgery to confirm the leak was repaired. It was, they did not find a leak. At that time, they did a full spine CT and did not see any leaks. That was the last scan I had. I have not had a recent MRI. Last week, an Otoneurologist put in an order for an MRI of the skull base. He wants to rule out the pteragoid muscle as a cause. I have not had the MRI scheduled yet.
Neurologist: DrRussMd, Board Certified MD replied 3 years ago
OK
I don't see anything definite on your videos....
What are you trying to show?
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Customer reply replied 3 years ago
The videos are to show the frequency and volume of the audible sounds emanating from my head. The first video is to show that I can recreate the sounds by moving from a horizontal to vertical position and back.(I am dropping my head off of the bed and then sitting back up) The second video is to show that the sounds are also being generated at random (without provocation) and in a rhythmic type pattern. (After about 12 seconds you can hear the rhythm of the clicks). I have another video of the back of my mouth that shows the palate is stationary during the clicking that I did not put up. (some Drs initially thought it was palatal myoclonus).
Neurologist: DrRussMd, Board Certified MD replied 3 years ago
I'll opt out for another expert to help you
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Customer reply replied 3 years ago
I am sorry. Thanks for trying.
Neurologist: Dr. D. Love, Doctor replied 3 years ago
Dr. D. Love
Dr. D. Love, Doctor
Category: Neurology
Satisfied Customers: 19,850
Experience: Family Physician for 10 years; Hospital Medical Director for 10 years.
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The other expert has opted out.
Obviously, if a doctor examining you cannot localize and identify the source of these clicks, it is unlikely that a doctor can identify the source via a video.
It appears that you placed the camera/microphone in a specific location to best capture the sound, and the location of the microphone certainly is consistent with the sound coming from the face, and the fact that the doctors have been thinking about the sinuses or facial or chewing muscles. It would be unusual for clicks from these locations to be related to cervical disease. These muscles are served by cranial nerves, so are not affected by cervical disease. The muscles along the back of the head, under the scalp are served by nerves that arise from the cervical spine, but the apparent location of these clicks is far from the muscles on the back of the head.
If it is now thought that the sinuses have been fully addressed, then it would be appropriate to concentrate on the muscles, as that would be the primary remaining structures in this locations.
If th MRI does not clarify the source of the symptoms, another option that may be able to help identify the source would be to consider serial nerve blocks. For example, it many ease symptoms related to the pterygoid muscle to perform a block of the nerve that serves the pterygoid muscle, a branch of the mandibular nerve. These blocks are primarily done for relief of symptoms once it is clearly related to a problem in the distribution of the nerve, but if other methods have failed, this may be an option. If necessary, other blocks can be considered at different locations to identify whether the clicks are coming from the distribution of that nerve.
The other option to consider, if not already done, would be consideration of consultation at a major medical center with a strong national reputation, such as the Mayo Clinic. Doctors that these medical centers have more experience in the evaluation and management of unusual disease processes, and also may be developing new techniques or technology that is not available in most facilities but may be able to help in the diagnosis in your case.
If I can provide any clarification, please let me know.
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Customer reply replied 3 years ago
Thank you dr love. The serial nerve blocks are a new idea. One thought was an emg of the ptyerigoid muscle. They have done an emg on the tongue and facial muscles. All came back normal. Believe it or not, i have seen dr. Barrs, dr bansburg both ents at mayo. I guess i need to go back to neurology.
One question, since this all started with the csf leak. Is there any chance this could be related to a low/high pressure and the sound is actually being caused by movement of the brain and/or other structures. Possibly cranial pockets being filled and/or empties. Another thought was that the eustachean tubes are reacting to low/high csf pressure against the inner ear. The tubes are opening and closing to attempt to regulate the pressure? Your thoughts are greatly appreciated.
Customer reply replied 3 years ago
None of the physicians, dr barrs, dr bansberg, dr halker/mayo headache specialist, dr slattery ent/house clinic los angeles, dr michael robb/otoneurologist phoenix, dr strategouleas/ ent tucson have ever seen anything like this. As you see my efforts of late have been ent related.
Customer reply replied 3 years ago
I mention the csf because the first test everyone has done to identify a leak was a tilt table. Very similar to what i am doing in video 1.
Neurologist: Dr. D. Love, Doctor replied 3 years ago
It would not be likely that this would be due to movement of the brain from altered fluid around the brain. I have never heard of this cause this type of sound. And the brain is a soft structure with no contractility, so would not have a clicking sound when striking a solid structure nor have any type of rhythmic phenomena that could generate sound in a rhythmic pattern. Muscles can spasm or have other abnormal contractions, such as the myoclonus that has been discussed, but there is no similar structure or action in the brain that can occur.
The Eustachian tubes can cause clicking, but if the clicks were due to the opening and closing of the Eustachian tubes, then that would usually be identified by the ENT doctor, assuming that it occurred or was reproducible in the office. In addition, the middle ear pressure that is regulated by the Eustachian tubes is not significantly affected by changes in CSF pressure. CSF pressure could theoretically affect the inner ear, but the Eustachian tube communicates with the middle ear.
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Customer reply replied 3 years ago
Thank you for your insight. I have read some journals that indicate objective tinnitus due to csf but it is typically a pulsating sound/heartbeat. Onward i go.
Neurologist: Dr. D. Love, Doctor replied 3 years ago
It also is typically not audible if a video were made of the patient. It is due to pressure waves following the blood vessels that pass close to the inner ear.
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