Issues Since 2009 — Ear Fullness, Fluttering — Video

Hello Tinnitus Talk - (sorry for long post)

Video of my ear fluttering/whooshing here:

Eardrum fluttering

I would like to share my long journey and compare notes. It's started out as a chronic annoyance back in 2009. I know the exact time and situation it happened. I fell into a pool face first (and yes it did have water) and heard a popping sound that was in the back of my throat. I also felt a tingling feeling in my throat the moment my face/head hit impact. That moment change my life forever. I shrugged it off and at the time didn’t think anything of it but knew something was wrong with my body. 2-3 hours later, I had water a feeling/sensation in my right ear. 1-2 days later, fullness feeling in my right ear. 2-3 months later noise issues appeared. All in my right ear. Thunder or whooshing sounds later followed. Hearing distortion, scratching, or buzzing sounds occur, especially during high pitched noises like vacuuming or at a sports game. Over the next couple of years neck pain, lower back pain, tail bone pain. etc. etc.

I've seen two top Otolaryngologists around the US, Douglas Mattox at Emory in Atlanta, GA and Dennis Poe in Boston, MA. Both of which don't know why my ear always has the "fullness" feeling. All hearing tests are normal except a neuro-otologist found Unilateral Vestibular Hypofunction in my right ear which lead no where.

My issue appears to be posture and muscle spams related which I've developed at a young age of 13 (1996) when I was on computers 10+ hours a day playing video games. I also had braces at the age of 8 (1991) and in pictures I noticed my facial structure is different. My right eye socket is lower than my left after the braces. I'm also right handed and later found out this could play a role in my issues. Through out high school and college I was on the computer most of the time. Fast forward to age of 25 (2008) my lower right first molar (tooth #30) was fractured. After poor dental work, by crappy dentist named Elisabeth Baertlein, the tooth became infected and I needed a root canal. During this time I unknowingly had bruxism and started the process of changing my bite which led to TMJ issues. A year later I had the pool incident in 2009.

My symptoms include the following:
Ear fullness in my right ear all the time. Always consistent. dick’s Hall Pike test with my head to the right caused even greater pressure and felt my eardrum fluttering without noise.
Most of the time when I swallow my right ears pop. Six different ENT’s have ruled out ETD including Douglas Mattox and Dennis Poe. My right ear just sometimes “Pops” out of the blue. Not moving my head, neck or any muscles in my throat.
Thunder or whooshing sounds when noise is present. The louder the worse. The noise can generate it most of the time but not all the time. I can replicate the thunder and or whooshing sound if I close both my eyes real tight. It also happens when in the shower and water is hitting my face with my eyes closed. Putting eye drops in my right eye can also replicate.
I believe my right tensor tympani goes into spasm along with my stapedius. This results in fluttering of my right tympanic membrane. This was caught on video by Dennis Poe in Boston, MA as well as seen by two other ENT’s. In April 2018 I purchased a digital microscope and captured this footage as well. This is also followed by a whooshing sound when the noise stops.
Sometimes noise affects hearing. Distortion, scratching, or buzzing sounds occur, especially during high pitched noises like vacuuming or at a sports game.
Pulsatile tinnitus in my right ear. It’s consistent but I can increase the sound of the tinnitus when I turn my head to the right and back, put pressure on my mandible on the right side and push left, and press on my fistula behind my right ear.
Right eyelid can twitch. This doesn’t happen very often but I caught it on video.
When I bend over to pick something up it feels as there is something loose or moving around in my inner ear.
Dizziness and balance issues. This is a sub complaint and was diagnosed with Unilateral Vestibular Hypofunction with significant asymmetry at 36% in the right ear. I have compensated these symptoms well, but they are still present.
C-1 C-2 Rotation – May have an effect on these symptoms. I can feel my atlas budging in the back of my throat on the right side.
PT states my cervical spine is in left lateral flexion and my occiput is rotating in a direction opposite normal osteokinematics as we note that the atlas (which should be rotating right) is rotating left while the axis appears to be rotating right. Almost a coupled movement of the atlas and O, with the axis going rightward. That represents an abnormal coupling. Normal coupling during left mid cervical lateral flexion is for the O to go left Atlas right and Axis left.
Mid-cerv lateral flexion L5 R 0 after tooth #30 removed. Nerve Blocks in bilateral greater occipital and superficial cervical plexus only increased this a little. 15L R5. Might have vagus nerve relative to C-1 but possible other cranial nerves in my visual-vestibular system.
Sore upper neck, SCM and upper right shoulder. Cervical rear headaches in the lower part of my head. More pain on the back right of my next towards the upper cervical area. I hear crackling sounds in the back of my head and neck.
Irritability, difficulty concentrating, depression as unable to find the root cause and resolve the issue. This may also be considered brain fog.
Unexplained benign enlarged Lymph nodes. I’m currently seeking an answer with a rheumatologist. Next lymph node is going to the Mayo clinic.
Tailbone pain, Sharp pain when getting up from a car or a bar stool. diagnosis with coccydynia.
When squatting to standing I feel extremely light headed. This also increases the Pulsatile tinnitus in my right ear.
Right little finger, wrist and elbow numbness.

Chronological order of my history:

Age 8 (1991) Braces - Right eye socket is lower than left.
Age 13 (1996) Poor Posture, forward head posture started with computers. Was later put on Fluoxetine SSRI which I took daily until the Age of 29. I was heavily involved with computer video games 8-14 hours a day and night.
Age 19 (2002) I start to show signs of arm pain from using the computer too much. Right hand and pinky were numb and in pain.
Age 21 (2004) Start to have lower back pain. Unknowingly Degenerative disc from forward head and poor posture.
Age 24 (2007) Notice my bite was changing and unknowingly started bruxism / sleep apnea.
Age 25 (2008) Tooth #30 was fractured from bruxism. Unknowingly started have TMJ.
Age 25 (2008) After Tooth #30 was fractured, crown and root canal. It was infected.
Age 25 (2008) Surgery - Right arm lymph node appeared and was removed and benign.
Age 26 (2009) My car wreck in a pool. After my face hit the water I heard a popping cracking sound from what I recall was in the back of my throat. I shrugged it off and at the time didn’t think anything of it. 2-3 hours later water feeling. 1-2 days later, fullness feeling in my right ear. 2-3 months later noise issues appeared. All in my right ear. Thunder or whooshing sounds. hearing. Distortion, scratching, or buzzing sounds occur, especially during high pitched noises like vacuuming or at a sports game. I thought I was having an ear issue with my right ear.
Age 27 (2010) The ear issues became chronic enough that I went to my first ENT. Stated deviated septum and stated my Eustachian tube was not properly draining.
Age 28 (2011) Tooth #31 fractured from bruxism (probably sleep apnea as well).
Age 28 (2011) Other symptoms started to appear like right side jaw pain, heart burn, ringing in the ear.
Age 29 (2012) Surgery - Second ENT – Septoplasty. After symptoms didn’t improve with my ear the ENT suggested it might be TMJ.
Age 29 (2012) Surgery - MRI confirmed TMJ issues with my right joint. Had Arthrocentesis and Arthroscopy. capillaries and adhesions had been removed from my right TMJ. Symptoms did not improve. Maxi facial stated it’s a Eustachian tube problem.
Age 29 (2012) Surgery - Second Lymph node removed from left armpit and benign. I stop fluoxetine.
Age 30 (2013) Botox was injected into my masseter and temporalis muscles. No improvement with symptoms
Age 30 (2013) Other symptoms started to appear. Started to have neck pain along with the ear issues, jaw pain and heart burn.
Age 31 (2014) Surgery - Third Lymph node removed from left armpit and groin area. This was benign. Oncologist can’t explain why but enlarge lymph nodes are all over my body were confirmed by a CT scan.
Age 32 (2015) First neuromuscular dentist, bite therapy. Notice pain in neck decreased but later returned a couple weeks later as my body didn’t adapt well to the splint. Ear symptoms did not improve. Referred my back to an ENT.
Age 32 (2015) ENT stated – Enlarged adenoids and tonsils. Diagnosed with MRSA. sleep apnea test confirmed sleep apnea.
Age 33 (2016) Surgery - ENT Performed UPPP – Noticed shortly after my surgery in the recovery room my symptoms got worse ear fullness, tinnitus, which we later found out was pulsatile tinnitus.
Age 33 (2016) ENT determined I was having tensor tympani muscle spasms in my right ear as he saw my right ear drum flutter with sound. A second MRI ordered which was benign.
Age 33 (2016) I went to an Upper Cervical Chiropractor. Stated c1/c2 and spine was way out of alignment. Possible ALAR injury by looking at the MRI. After the upper adjustments were made to get me in alignment I started to have lower back pain all the time. Whereas before it was only every couple of weeks. Also, cervical rear headaches in the lower part of my head started to appear as another symptom. More pain on the back right of my head next towards the upper cervical area. I hear crackling sounds in the back of my head and neck.
Age 33 (2016) Douglas Mattox couldn’t determine fullness. Told me not to cut the tensor tympani muscle.
Age 33 (2016) Jose Garcia-Corrada - We found that the tinnitus when my head is back and to the right is actually Pulsatile tinnitus. However, he did point out my dens is slightly off on the midline and couldn’t explain why. Also, I could have vascular occlusion. My lumber spine also has a loss of disk height a slight curvage. I have slight pain in my lower back that happens while sitting or standing still. He diagnosed me with mild degenerative disk. He consulted my MRI to neurology and they couldn’t find anything. Garcia-Corrada referred me back to the ENT.
Age 34 (2017) Phone consultation with Regenexx (Stem cells) – Dr. Schultz informed me they see a lot of patients with ear issues that have cervical problems. I never followed up with stems cells.
Age 34 (2017) Dennis Poe in Boston, MA - All of my Pterygoid muscles are really full. Dr. Poe believes my Median and laterally pterygoid is what’s causing the ear fullness. Believes it’s muscle spasms. CT scan of orbits.
Age 34 (2017) Postural Restoration Institute and TMJ neuromuscular dentistry – Second splint therapy. Determined that I’m a unique case because It appears that my cervical spine is in left lateral flexion and my occiput is rotating in a direction opposite normal osteokinematics as we note that the atlas (which should be rotating right) is rotating left while the axis appears to be rotating right. Almost a coupled movement of the atlas and O, with the axis going rightward. That represents an abnormal coupling. Normal coupling during left mid cervical lateral flexion is for the O to go left Atlas right and Axis left. After a year of physical therapy they are in agreement my issues with my ear are muscular and driving by my spine.
Age 34 (2017) Tailbone pain started first appear. I now have sharp pain when getting up from a car or a bar stool. diagnosis with coccydynia.
Age 34 (2017) Noticed thunder sounds when water hits my face. When I put eye drops in my right eye I can duplicate the thunder/whooshing sounds in my ear. This is my tensor tympani going into spams. Also right eye lid twitches from time to time.
Age 34 (2017) Tooth #30 had bone loss and had to be removed. A couple days after the tooth was removed I have severe neck pain along with Mid-cerv lateral flexion L5 R 0. Nerve Blocks in bilateral greater occipital and superficial cervical plexus only increased this a little. 15L R5. Might have vagus nerve relative to C-1 but possible other cranial nerves in my visual-vestibular system.
Age 35 (2018) Jaffar Kahn - I’ve never actually met Dr. Jaffar Khan but worked his assistant Robert D Welch and Lisa Gillig. They have diagnosed me with Unilateral Vestibular Hypofunction in my right ear. I had the following tests completed: Dick’s hall, vHIT, Tympanogram, Basic Vestibular test, BPPV. Results show significant asymmetry at 36% in the right ear. One thing that is not on the report is the Dick’s Hall Pike test with my head to the right. I felt a greater pressure in my ear and felt as if my ear drum was vibrating w/o any noise. I informed Robert Welch this and he didn’t make a note of this in his report. Lisa Gillig on March 13th 2018. Lisa informed me any issues with my balance and dizziness as compensated to the other ear. There is nothing else her or Dr. Jaffar Khan can do in regards to my other systems and recommended I go back to Douglas Mattox.
Age 35 (2018) Surgery - Fourth Lymph node removed from my body. This time my right arm pit. Rheumatologist sent this node to the mayo clinic. Came back benign. Another CT scan showed they’re still all over my body. Rheumatologist doesn’t know why. After the surgery, like the previous surgery back in 2016 with the UPPP, I noticed shortly after in the recovery room that my symptoms got worse - ear fullness, pulsatile tinnitus and ear fluttering. This is probably from the breathing tube rubbing on my muscles, nerve, or c-spine.
Age 35 (2018) Dr. Nancy Newman Determined my right pupil is some times larger than my left pupil. This is common for about 20% of the world’s population. We tested for Horner syndrome and an in-depth eye exam which were negative. The main point of the visit was to determine why my ear flutters when putting eye drops in my right eye as well as why my right eye sometimes feels heavy along with the lower eye lid twitching.
Age 35 (2018) Gerald (Rusty) E Rodts ruled out any cervical spine issues with C1/C2 by confirming with the MRI.

Once again sorry for my long post.

My next steps are to visit John Carey at John Hopkins in July - Otolaryngology, I've been in contact with the Pulsitile Tinnitus clinic in UCSF and they're interested in my case. I have a MRA, and MRI with contrast on a 3T machine on June 9th. I've also have an appointment with
Kenneth C. Liu at Penn State in September who specializing in open vascular and endovascular neurosurgery in the veins to see if that leads any where with my Pulsitile Tinnitus.

Any other recommendations would be appreciated.

 

Hey I have all the same symptoms and health problems as you. Have you had any success figuring out what is wrong?

Any information would be a great help. Thanks.