My surgery is coming up in 5 days......hurrah!
Question for the group:
My ears are a mess......plugged, ringing, loss of hearing, unless I do the "plug my nose and slightly blow", then I can hear great!!! They are a Eustachian Tube Wreck......yet, when every MD looks in there, they all say ....."They look perfect" Grrrrrrrr
After being diagnosed with MAV for years, I have taken every migraine med possible with no positive effects. Then we saw my scan.......which has led me here.
Now, if I yawn REALLY wide and try to extend the yawn........my ears will temporarily open up and I can hear better for a while.
My complete non-medical opinion on this is that I am dealing with an anatomical issue in my head.......i.e. this tusk that may be compressing on the cochlear nerve???
I have no other explanation......but does this make sense to anyone? Could this "thing" growing in me cause all of these ear issues that I continue to deal with?
I have EXACT same thing. Docs don't see anything, but they do get a negative pressure reading on it when they test the eardrum. One ENT ear specialist/surgeon offered to put tubes in my ear, like kids get. I don't want that, though. I think it has to be fixable from the source.
I don't think this is separate from your ES. I'm not sure if it's a nerve, or just a physical squashing of the canal by the 'tusk' :)
My rt ear got worse on 10/19. It is now plugged ALL the time on one side. I feels exactly like I went swimming, and tilted my head and let the water in. And like that water stayed in. I can pop it with a yawn or valsalva, but this is really painful on that ear if I do that, and it closes right back up, anyway. The other ear is more on and off, and not anywhere as bad.
How did you fly to SFO with your eustachian issue? I have free travel and ironically, I cannot fly because of the eustachian issue. (trust me, I'd be on a beach in Hawaii if I could!) I know it will hurt like heck, and I have no desire to rupture an eardrum.
Shaw made a recent post about their surgery helping their eustachian issue on page 3 of that 'ENT Cancelled surgery' post.
I just called Samji's office and am waiting for a call back. (My guy in Denver isn't covered by insurance and not sure I'll get an exception). I'm afraid to fly there with my ears. It's no short drive, either.
I really am looking forward to your results-- they are coming soon!
Tee.....When I fly (which is just occasional conferences for my work and visiting hospitals with my consulting firm), I do the valsalva very lightly as to not damage my ear drum. I probably do it 100x during a flight.......ugh. Then, my ENT physician will look inside both of them and say......."They look perfect" I secretly want to punch him in the nose.........grrrrr
What you say makes sense about this "growth" in that region that may be squashing the cochlear nerve or compressing on ear drum. I just do not know.
You are a wealth of knowledge and I appreciate all of your comments back to me! Your free heart transplant still stands!
I am down to days now.....Yay! We are just going to stay in a suite at a hotel so we can eat in if we want. Also, there is a pool and hot tub outside if I feel so inclined. We just got our first snow of the year today in Spokane........ugh. :o(
Thanks for everything and I will keep you posted!!!
I have always had to valsalva a bunch of times, even when I thought I was normal. Before any of this.
Now I have to push the air so hard to get it to open that I risk it opening very suddenly with a lot of pressure, and getting pain with that. I can't do those 100 little gentle valsalvas like you are doing....like I used to also do, for years and years. Dang. I'm glad you can still fly and keep up with it.
How about an eardrum transplant haha! Might need that at some point! Wait--- I thought we were getting steak? haha
I was in pure disbelief when the doc didn't see fluid in my ear. I can't say I wanted to punch him lol, but I wondered if he looked hard enough or maybe it was way down in there or somehow it was just hard to see. I remember being told in 2001 that I had negative pressure in my eustachians. I wish I had some images back then to see if the styloids were a factor. I have a feeling they were. I think back and don't believe my symptoms were quite as sudden as I claim. I just had no idea they were symptoms.
You really are down to days; I can't believe it went so fast! Good plan on the suite; you never know how you'll feel, I guess. I hope you feel well enough to eat in and get to use the pool and hot tub. It's just an outpatient surgery with him, right?
We were supposed to get snow today; I put on my cozy fuzzy boots and big fat coat.....and....the clouds cleared and the sun came out against a bright blue sky...! lol No snow! Not one flake! So there I was for the rest of the day, sweating like a boss. :/
Keep updating, I really appreciate it! Thank you!
Just an outpatient........2 hour surgery. I was scheduled at 8:30, but got bumped to 10:30 am. We just wanted extra space and to be able to relax , thus the suite at the hotel. Not like I am going to be partying, but it will be nice to not be confined for 5 days!!! I will keep you posted......always attached to my I-phone / MAC ......so reports will be coming in !!!!!! Cautiously optimistic is how I would gauge my feelings right now.
Let's hope cautiously optimistic turns in to actually having a reason to party after the surgery!
Kind of amazing to think that if this surgery fixes it, all that stood between you and a normal life is two hours???
@ Tee......I have thought about what you said quite a bit: "Kind of amazing to think that if this surgery fixes it, all that stood between you and a normal life is two hours??"
I don't really know what to say. Part of me would be angry for "losing" so many enjoyable years of my life.........but I guess in the end, that is in the past. To feel normal again, I would absolutely be thrilled!!!
The countdown is officially on and we shall see what happens. I am going to make sure I have a list of questions that my wife can ask him post op since I will still be stoned.
"did he see it compressing on anything?"
was it irritating nerves......or was it no where near a nerve?".......etc
Trying to stay upbeat and positive, but I have been let down so many times that I am keeping my guard up and not getting too excited. Expecting neutral results........anything better and it will be PARTY time :o)
I am sooooo in this same boat!!! I can't tell you how many times I asked them to look in my ears. Positive I had a raging ear infection or tons of fluid in there!! Only to have them say........ Nope all clear!! ARGHHHHH!!!
What you both are saying makes total sense too me.
LOL!! I actually asked Dr. Samji to check my left ear yesterday during my post op appt. He said looks great and that what I am feeling is because of the swelling and because the nerves are not awake yet. Feels so strange. He said it would be at least another month to really notice a difference. There is hope!! It has been crackling off and on and sounds like it is trying to pop. I feel like it wants to.
I asked him if he could see what was being pressed on while he was doing the procedure. He it would be hard to say because of the position they had to put my head and neck in to be able to see and to keep it off of my carotid artery to remove that sucker safely. (he told me pre op that it was already compressing the carotid while turning my head)
I asked him theoretically...... He said that it was very thick and that I also had a big lymph node that had to be removed and was biopsied...... Came back benign! Thank God! So between the two I had a lot of pressure on the nerves!!
This actually hit me like a ton of bricks....... My Dad died of non-hodgkins lymphoma. Not saying ES causes lymphoma. Just one of my health fears due to my celiac disease.
I have to wonder how these "tusks" could keep the lymph nodes from draining properly as well? Which could also contribute to feeling like crap!!
Bottom line........ he said I really needed to have this done!! Any left over doubts I had were gone for sure in that moment!!
Yes!! Get excited!! I am still very hopeful!! :)
For me, I have always had congested sinuses all my life. Having to go get antibiotics 4-5 times per year. Of course medrol dose pack that makes me “roid rage”
I was diagnosed with Ménière’s disease about 5 years ago by ENT. The same ENT told me I had Ménière’s disease knew I had pain for over 5 years. When I was diagnosed with Eagle’s syndrome recently, I saw ENT for follow up for my son’s postop care on tonsillectomy. She was acting like I was crazy and there was no way I could have ES. “Cause the pain and symptoms are coming from your spinal nerves. Plus, ES is rare and you cannot have elongated styloids on both sides”. I am so mad and cannot get over her arrogance!! Nobody but a TMJ dentist is checking for it!!
HELL-O Houston, we have a problem!!!
It is great to hear that you are still in positive spirits!!!
So........you are about 1 1/2 weeks out from surgery now.
Have you seen any changes (for better or worse) since your surgery? Have you had any changes with the infamous "ear dysfunction mystery"?
Looking forward to hearing how you are doing and why, in fact, you are so excited and hopeful??? Are you feeling different or are you just going off of what Samji said he saw and what he did?
thanks my friend!!! Looking forward to hearing from you and hoping things are well !!!
I was told I must have Meniere's disease too! However came up as inconclusive on the VNG testing. The only part that came up positive for nystagmus (bouncing- eye movement) was when they asked me to shake my head side to side as if to say no. I told them I couldn't do it. It always made me dizzy. They did it for me........... Ding Ding Ding.......We have a winner!!!! My eyes were bouncing all over the place.
The "tusks" must have been pressing on the nerves and triggered it.......right?! Time will tell!!
BPPV and migraine associated vertigo. Crystal (calcium deposit) possibly loose. You name it!! I feel like I have heard it. My sinuses have always been a wreck too.
As far as after surgery (day 10) ...... I am still swollen and the left ear is still plugged but the pressure feels different. I am not sure if it is because I am still numb or what.
I can say that I am breathing better out of the left side. Noticed that right after surgery.......Not quite sure why..... but happy about it!
I am still very excited/ hopeful as to what he said/saw and because the pressure seems to be getting less. Once the swelling goes down I hope the pressure will be gone for good!! :)
Two of my previous diagnoses were Meniere's Disease and MAV. :(
Good luck Todd! I will be awaiting your updates.
Hello all I too have had terrible Headaches for 20 years and the earaches started a couple years after that! Went to the ER the first time the Earache was so bad the pain radiated all down my neck! My ear actually cracked& popped when I yawned! Turns out I did have a slight infection in the ear canal. Got a combo antibiotic + cortisone ear drop. Return to ENT Clinic for follow up. So the ear drops worked like a charm. It was the the (Solumedrol), that calmed things down. Stopped the drops. The earaches came back. As a Nurse, when bones are being rubbed together it causes inflammation! Which inflames nerves that send pain signals to your brain. That’s why anti-Inflamatories are so helpful!. I went to an Ear specialist, who told me there is nothing wrong with my ears and it’s the nerve recovering pain signals. Great news! I have the tinnitus and my ears block up all the time! I can’t yawn very wide or I’m in great pain! We have a structural problem therefore we don’t have Vascular type Headaches. We have Tension Headaches! Pure and simple! I’m taking muscle relaxers and return to my NSAIDS after December. As that should be my time up from my cervical spinal fusion. I still must wait for any more surgery until next June! I’m going a little nuts! Tension headaches, tinitits, and these earaches, too much pain!!! Had a melt down today! It just gets to be too much pain and all I got right now is ES Tylenol and muscle relaxers! It doesn’t even come close to handling this pain! I need a hug!
Lailei, I also have nystagmus. It started the very day I got the vertigo for the first time. BPPV for me, too. I hope that ear unplugs!!! I hate the recovery part...lol I wish you came right out of the gate all improved. This swelling crap is really cramping the results that we all want to hear about! hehe :)
Hello, Cougs! I am an audiologist w/ES and I can tell you with no doubt that the pressure is not on your vestibulocochlear (VIII cranial nerve). Your ES is more likely causing inflammation of the nasopharynx which will in turn cause Eustachia tube dysfunction, and hence the "plugged" feeling. The trick would be to relieve the inflammation in the nasopharynx to get relief. Let me know how it goes.