Superior Canal Dehiscence

General
1

Hello fellow Eagles friends :slight_smile: I hope this discussion finds everyone well!

I have had two follow up appointments with Dr. Forrest in Columbus, OH since my extraoral surgery on August 8th. All is super well, there were no complications, no surprises and the surgery was a complete success! I cannot begin to express how it feels to be Eagles free, have total blood circulation to the brain and have no impingement on the cranial nerves! The first month and a half after surgery my energy levels flew off the charts and I didnā€™t know what to do with myself!!! Untilā€¦I smacked into the wall. I hit it so hard it felt as if Iā€™d never recover.

I found myself isolating from all that I loved. I lost my energy, my lust for life. I dropped off this site here, never left my room, barely ate and physically I felt like dying. My ā€œheadacheā€ was back, full force and the fatigue and tinnitus was worse than ever.

I scheduled another appointment with my surgeon and the night before the appointment I sat down with the god of my understanding and asked for guidance. Praying that ā€œI get out of the wayā€ as I sit down with pen and paper as I write down my symptoms. 1. My own voice in my head vibrates. When I whisper, I sound like Iā€™m yelling 2. When Iā€™m reading in a quiet room I can hear my eyeballs moving back and forth like someone filing her nails on an emery board 3. When Iā€™m jogging or even when Iā€™m walking I feel like I have to do it gingerly because in my head I sound like a herd of elephants 4. When I blink my eyes it sounds like a rocket taking off 5. I have tinnitus in both ears but I really want to cut my right ear off like Van Gogh

I had a list of 18 things but Dr. Forrest said, ā€œStop right there! Why didnā€™t you tell me this before?ā€ Ironically I thought all of this was unimportant and irrelevant because I had been telling primary care physicians and neurologists this for years and it had been dismissed. Dr. Forrest is an ENT and also, ironically, I had been in 2 other Columbus area ENT offices in the last 3 years and vocalized the same symptoms and had been blown off. He immediately said, ā€œAmy, we need to do some testing on your ears!ā€

Well friends, here I am a couple of weeks later with a diagnosis of Superior Canal Dehiscence. It occurs in approximately 2% of the population. Iā€™m wondering what the likelihood of that 2% has had Eagles also? Or if there are any stats on that, or if Iā€™m just over thinking lol! Believe me yā€™all, Iā€™m not complaining fo real :wink: Iā€™m absolutely filled with gratitude to finally, once and for all, to have ALL of the pieces fit and have the riddles answered :))))

Iā€™m looking at another surgery in 2014, wow. Does anyone have any information or experience with this condition?

2

The other day I noticed I can hear my eyes moving back and forthā€¦.whoa that's weird you wrote that! I don't have the other issues you describe, though! But the eye thing is spot on. I don't always hear it- like right now I don't. Not sure why sometimes I can, though? I will read up on this!

3

Hi AmyBlue,

I am sooooo sorry you had to go through this but happy that you found the answers!!

I have some questions......

Would you mind putting up the rest of your list of 18 if possible? (I just read up on this and noticed some similarities of symptoms)

I had surgery just over a month ago and I realize some of the symptoms I am still having are due to swelling and nerves needing to calm down.

Do you have nystagmus?

Do you have dizzy spells or vertigo? If so do you find it gets triggered by sound, vibration or lighting?

Example.......I went for a walk (was so excited to be able to finally do so.... more energy) ..... A Chinook went overhead and my vision was instantly off and with it my balance. (before surgery I would have been in full spins) As soon as the helicopter was out of earshot (and sight) it improved. I also have a really hard time in the car (motion).

Thank you for sharing this info! I am definitely keeping this on the back burner.

I am keeping you in my prayers and hope that you get relief soon :)

Take care,

Sheila

4

Hi - so excited to see your post. Any blue did you have vascular eagle syndrome? I have vascular Eagles and the styloids were causing 95% stenosis of IJV.
I am wondering if I have SCDS. What I think happens is that the backup of blood in brain causes Intracranial hypertension which erodes the bone between the brain and inner ear thus exposing the semicircular canal.
My symptoms are not as bad as yours but I can hear my heart beat. Some noises cause dizziness and I have nystagmus.

5

The one thing I can think of that would erode bone would be a fungal infection that got in the ear and/or sinuses. Another might be acidosisā€¦not sure I'm thinking correctly on that one or whether it's possibleā€¦read a long time ago about leaching minerals from bone to counteract acidity.

6

Wow yā€™all!! Thanks sooooo much for all of your quick responses :slight_smile: Iā€™m on the move now for the holiday! So when I can have access to a laptop and pen and paper so I can make some notes Iā€™ll post a more detailed post and get real ā€˜nitty grittyā€™!

Yes, I do have massive vertigo and nausea, migraines with aura and nystagmus. I have Classic Eagles. Sounds, smells and certain sights can trigger dizzy (vertigo) spells. But what really sets it off is the change in weather. My SCDS symptoms have all but multiplied since my Eagles surgery for some reason. Iā€™ll know more about the onset of the ear disease after I meet with Dr. Forrest! My guess is itā€™s congenital and itā€™s just gotten worse since I had a severe sinus infection and mono when I was 21 in 1991. Weā€™ll see, more will be revealed!!!

Iā€™ll talk to you guys later!!!

Amy

7

You sound like a really strong person! Stay that way and youā€™ll come out on top! You have a great positive attitude! I think thats whats got me thru all my diseases! One diagnosis after another! But Iā€™m alive and still breathing. So im very thankful!
Take care!:slight_smile:

8

I had bilateral SCDS. First surgery in Nov 2012, second in June 2013. They said the surgeries were successful. However, some symptoms have returned, along with new ones and ones which had been just beneath the surface. Now, I am going to have surgery for Eagles. I wonder if they go hand in glove. It remains to be seen how I respond to the styloidectomy. Just my right side seems to have the symptoms. Even tho my left ear still feels plugged from the SCDS surgery (like I have water in my ear); that hole was big and took a lot more to repair. As long as I don't talk or listen to anything which creates a vibrating noise (cell phone, vehicles, etc.). It is not just my ear, but my head which vibrates and hurts. If I push against my left ear canal, I don't have as much problem. I was hoping to have a few years of normal life, but I think I am just here for the drs. to practice on and tell me how special I am... These are only a couple of the dozens of problems I have dealt with. Good luck, go for the surgeries, no matter what anybody else tells you....

9

Ladygw:
Thank you so much for sharing your experience and hope!
At this point in the game I am willing to try anything! I found out this past week that the ear surgeon cannot do the ear surgery and the Eagles in one surgery because of the way the styloid grew. It is segmented and too dangerous to remove from the mastoid approach. Had the right styloid been in one piece like my left one was, it would have been a possibility.

I too wonder if Eagles and SCDS go hand in glove. Iā€™ve always had symptoms of both but the SCDS definitely worsened after my Eagles surgery in August of '13. The 2 symptoms that were even more pronounced were the autophony and hearing my eyeballs move and blink. When I told my Eagles surgeon these symptoms he said, ā€œAmy, why didnā€™t you tell me this before??!!!ā€ I told him that I have been reporting this and complaining about this for YEARS and other doctors have either a. Looked at me like I was crazy or b. Dismissed it quickly because they had no clue what I was talking about! He had me at a top notch ear institute within days getting my temporal bones scanned!

Iā€™m not looking for a Miracle cure or a total disappearance because I donā€™t think thatā€™s realistic. All Iā€™d like to have is a reduction of symptoms. Honestly Iā€™d be very happy with that! Because let me tell you, after I had the Eagles surgery on the left side, it literally felt like I had a ton of bricks taken off of the left side of my head and neck. I feel circulation and oxygen exchange happening like Iā€™ve never felt, ever!

Please keep me posted on your Eagles progress!!

10

AmyBlue,

Thank you for your upbeat message. I am almost afraid to think that I might have relief. I know I cried after my SCDS surgeries. Even tho I am still healing from them I am 80percent better. Pretty good for an old lady I even drove over the mts. to Seattle and didn't have a melt down or get altitude sickness..

11

Thank you :) That gives me hope, so much hope!!! Did you ever experience extreme autophony? That is one of my biggest problems. My own speaking voice in my head is so loud at times that I can't even speak, or whisper. I haven't been able to do voice overs and I used to sing in bands and I haven't been able to sing professionally in years. It has been so upsetting to not be able to perform. And I've stopped doing voice overs because I can't speak in a full voice because it's literally painful to speak diaphragmatically for long periods. And I can relate with the travelling in altitudes.

12

ALL of the known symptoms for SCDS were on my plate. I honestly do not know how I stayed sane; I was fast approaching suicide or a total melt down.

The autophony was weird. It changed and could go from terrible to tolerable. Everyone would comment on how weak my voice was or how odd it sounded. That was because I could not just talk; I used to be a radio dispatcher for city PD, 9-1-1, etc., and my voice was one that people liked- that changed dramatically in the past ten years. AT times, I would have 'bubbles' in my ears/throat and I was talking through water. Like my voice was going out my ears. Constantly popping my throat, shaking my ear, 'snorting', shaking my ear, head, etc. The sad thing is, my dad had these same symptoms and he became hermit-like.

The energy it took to control everything and not fall apart was tremendous.

It is interesting how some of the symptoms of SCDS and Eagles overlap. Once I found out about these conditions, I also began to believe they were connected.

I also wonder why some people will develop calcified cartilage and others don't. Maybe this goes along with my weirdness when it comes to how fast my body seals around an injury. I have keep years of notes on what my body has done to itself. Sometimes I felt like an alien. Your mind does strange things when it has detached itself from the body in order to survive. Gotta write a book.

13

Wow, I keep learning so many new things, but so sorry that you are suffering. It would be nice not to ever have these things to learn about. I hope you both get much better.

14

Thanks Emma.

Just seems like there is so much to learn. At least we now have the benefit of the internet. Before, I used to go to libraries for research, both public and at the hospitals. I can't imagine doing it now at my age, I am plumb wore out. But, you do what you gotta do.

15

According to research from Johns Hopkins, SCDS is congenital, an insufficient thickness in the development of the bone. What I have to wonder is how so many patients on this site with ES, which is rare (4% of population) ALSO have SCDS which is rare (2% population). Is that just some random coincidence???

16

Wow, again, I wish there was someone in the medical field who would check on this. Was there a specific page you went to with this info? Sometimes I get lost in the shuffle. I am particularly interested in the "insufficient thickness in the dev. of the bone".

17

Ladygw,

I provided a link for John's Hopkins. Very short article but there may be references that will help you on your quest. http://www.hopkinsmedicine.org/otolaryngology/research/vestibular/recent_findings.html

18

Thank you.

19

I am an audiologist. In general, the patients I diagnose with SCDH are MISERABLE! I wish you all the best of luck in getting effective treatement!!

20



Ladygw said:

ALL of the known symptoms for SCDS were on my plate. I honestly do not know how I stayed sane; I was fast approaching suicide or a total melt down.

The autophony was weird. It changed and could go from terrible to tolerable. Everyone would comment on how weak my voice was or how odd it sounded. That was because I could not just talk; I used to be a radio dispatcher for city PD, 9-1-1, etc., and my voice was one that people liked- that changed dramatically in the past ten years. AT times, I would have 'bubbles' in my ears/throat and I was talking through water. Like my voice was going out my ears. Constantly popping my throat, shaking my ear, 'snorting', shaking my ear, head, etc. The sad thing is, my dad had these same symptoms and he became hermit-like.

The energy it took to control everything and not fall apart was tremendous.

It is interesting how some of the symptoms of SCDS and Eagles overlap. Once I found out about these conditions, I also began to believe they were connected.

I also wonder why some people will develop calcified cartilage and others don't. Maybe this goes along with my weirdness when it comes to how fast my body seals around an injury. I have keep years of notes on what my body has done to itself. Sometimes I felt like an alien. Your mind does strange things when it has detached itself from the body in order to survive. Gotta write a book.