I’ve been feeling a little remiss in not having posted a full follow-up to my Facebook post about my MF (middle fossa craniotomy) surgery last month. I feel the need to offer a bit of a progress report, having just passed 5-weeks post-surgery, considering all the thoughtful concern everyone expressed, and to maybe shed some light on the experience for others who may be dealing with Superior Semicircular Canal Dehiscence.
My recovery has been steady and, according to my Doctor, predictable. Hearing is gradually returning to my left ear as the fluid and blood (from what they tell me) dries up. There continues to be dizziness with fast side to side movements, such as turning over in bed, or getting out of bed or standing up too quickly or raising my head when reaching up to put something in a high cabinet for instance.
Since I woke up from the procedure, there has been a constant buzz/whoosh in the operated ear which occasionally turns into a ringing. When I relax it seems to abate – thankfully! I am praying this is a post-op phenomenon and not a permanent new symptom.
I have only recently (last couple weeks) begun test-driving fully using my voice and singing full-out, but it seems that the autophony, my most troublesome and steadily worsening symptom, is mostly resolved. To be truthful, I have been hesitant to really test it; I know that seems sort of crazy given how maddening this has been over the last few years. I have been nervous that a loud volume might disrupt the healing, or pop the plug! (Some people do experience onset of original symptoms after a loud noise.) I guess it is also because I am afraid of of finding out that the surgery, after all, did not work.
However, I have been slowly trying it out more and more: vocal warmups with students, singing and goofing around with the girls, and even recording a vocal track for a client I am arranging/producing a song for. Fingers-crossed, it seems pretty good. Of course, though, its hard to tell, what with the left ear still being somewhat “clogged” and full-feeling, which can also cause that sensation of hearing one’s self too loudly…So whether this symptom will be fully resolved or not remains to be seen, but I remain hopeful!
Same with the dizziness – I do experience it in general, as is normal post-op as I mentioned; but it does not appear to be triggered by the singing/vocalizing. Again, I have been treading lightly. Fingers still crossed… Someone posted a question in the SCDS Facebook group today about how long these sensations (ear clogged, ringing, dizziness) last for others who’ve had the surgery, and the responses were anywhere from 8 weeks to 6 months (and beyond).
Other post-op phenomena: still hard to open jaw wide enough to eat a sandwich, and there is still a bit of pain when I attempt it. The skull on that side still feels a tad numb, but that is slowly going away. The scar of the incision itself is healing steadily and beautifully – none of the reported oozing or itchiness at any point post-op. And I wish I had taken pics of the stitches and of the scar after their removal. Seemed like the work of a quilter or a master tailor! Really, really neat. And the scar runs perfectly below my hairline, completely and totally concealed. Very little hair had to be shaved. The most significant and noticeable effect is the bit of bangs Phil accidentally cut short when removing my bandage for me…
I am eager to finally return to yoga, hopefully by the end of this week but most likely with significant modification to avoid too sudden posture changes (to avoid that dizziness I mentioned with head position changes). I also need to stop indulging in all the goodies and sweets people are treating us to, and to add in some more exercise. Although the prospect of walking in this weather is not appealing (today is snowy-freezing rain…)
I have so much more compassion than ever before for those with chronic illnesses or conditions. There are so many little ways in which one is affected, that others can’t see or guess at, and it can cause a feeling of disconnection or for some, I imagine, despair. I am truly lucky in that so many with this diagnosis have far worse manifestations than I have experienced. Some report constant dizziness and falling. Some say they can no longer comfortably sit and read a book. Some experience near constant nausea. I am also extremely lucky that I had access to the amazing medical care I received at Mass Eye and Ear. I am really glad I took advantage of it, despite my initial hesitancy and anxiety about the surgery.
One other complicating factor: my Doctor confirmed that there is also a smaller dehiscence on my right side, so after the surgical repair of my left side, I could end up experiencing symptoms on my right side that had been masked by the worse side/ear. He also reported that during surgery the temporal bone on my left side exhibited the “swiss cheese effect,” being so full of holes as to present possible future symptoms. The surgical team used a bit of my skull bone to patch the holes along that area as best they could.
Thanks again for following along on this journey which started way back when (are you still reading? Wow!) and for all the well-wishes along the way. For those of you also diagnosed with SCD, feel free to leave a comment or question here or feel free to message me through
my Facebook page. Here’s hoping I will get back to some other pursuits – maybe some new songs? – very soon. See you in the New Year! Looking forward to performing a set (with my daughter Emilia!) at the the Me & Thee Coffeehouse in Marblehead in January. Maybe see you there?
Wow, what a difficult issue to deal with, yet how brave to be pro-active. I am a singer and guitarist, and I cannot imagine how hearing, sound, and balance could effect me. I have had two heart surgeries and as I get older, which is a desirable thing. .., I can tell my eyes and other body parts are not as strong, but so far, I’ve been lucky, and can do most of what i wish. There is no greater blessing than to be healthy and do what one wishes. I hope all of your health returns, and that you will be able to do as you wish, and dream to do, while in this body on the road of life we two share! God bless and keep you improving to wholeness and health. Sincerely, Your friend on this road of life, Michael Sutter <3 Love is all there is <3
So happy you’re healing and moving forward, my friend! If think you’re brave and remarkable. Love you and sending good thoughts and smiley memories. Always. xo
It sounds like you are progressing as hoped. I wish you all the best with with your recovery. You are a strong woman and I predict and am hoping for great progress for you!!
Barbara,
Thanks for this wonderful blog. I could relate to so much if it. I had my first SCD surgery in Baltimore in 2005. My right ear was successfully repaired after I suffered 6 years of horrible symptoms, 3 surgeries by well intended surgeons trying to help, and more occurrences of misdiagnosis and referrals to someone else the. I can even remember.
At the time of my surgery I was diagnosed with a near dehiscence on the left. 10 blissful years of normalcy ended when a. Ery loud noise exposure opened up my left side. It was devastating to say the least. The symptoms are worse this time. But the good news is that I know exactly where to go for help. I am in the midst of planning my second surgery. The noise exposure occurred at work and Work Comp is covering medical costs, but there are countless complications and hoops to jump through with this process.
I surely feel isolated, as I can not tolerate being in a noisy or busy environment. I have jumping and tilting of my vision tilts exterior noise and with every word I speak due to severe Autophony. I am hopeful surgery will help correct this as well as all of my other symptoms. In the meantime I am off work due to symptoms and life feels strange to say the least.
I can also relate to your music. I am a singer and I play guitar at our church. I write original songs as well. 🙂 I remember feeling exactly as you do after my first surgery. I put off “testing” through big singing for a long time. Weeks and weeks. Then one day (my husband vividly remembers this) I let my voice lo
So sorry- the above got away from me before I finished and corrected spelling errors 🙁
Sooooo…I let my voice loose in the car and I started to cry. 🙂 And I mean happy tears. The Autophony was gone. I couldn’t believe the difference!! 🙂
So I am hoping the same for you. And try not to be fearful. I am going through second side issues now, and I am going to make it. It will all be ok.
Isn’t it amazing how SCD affects our compassion level? Blessings come out of our most difficult trials. Seeds of triumph hide in every adversity.
Blessings to you as you continue to heal, resume life as normal, and find new adventures to enjoy. 🙂
So sorry- the above got away from me before I finished and corrected spelling errors 🙁
Sooooo…I let my voice loose in the car and I started to cry. 🙂 And I mean happy tears. The Autophony was gone. I couldn’t believe the difference!! 🙂
So I am hoping the same for you. And try not to be fearful. I am going through second side issues now, and I am going to make it. It will all be ok.
Isn’t it amazing how SCD affects our compassion level? Blessings come out of our most difficult trials. Seeds of triumph hide in every adversity.
Blessings to you as you continue to heal, resume life as normal, and find new adventures to enjoy. 🙂
I’m so happy your recovery is coming along so well! Once you do start to sing for real would you post a video on the SCDS site or email it to me? I would love to hear it! Getting back into real life is awesome!! Have a great day and thanks for sharing 🙂
hi Barbara just read the account of your ear troubles and surgery. So sorry you had to go through this but here’s hoping that your recovery continues to progress positively. My thoughts are with you.
Tom
Thanks for the update sweet friend. Always sending you lots of love and good, healing light and energy. Xoxo
great news Barb!
Wow.i was diagnosed with sscd a few months ago. .just had surgery 2 weeks ago .trying to figure out if it worked, still have ringing in my head and bad headaches, just hope that my symptoms are from the surgery and not still the sscd. .guess I need more time before I know gorgeous sure,tired of not feeling good
Barbara I forgot to wish you a complete recovery you’re article hit so close to home, I feel a lot better after reading it ,all the best to you ,
My thoughts are with you on your quest to regain your inspiring
voice.From the first time I heard you sing at The Cape Cod Folk
Festival somewhere back in the 90’s,to the colorful harmonies
you sang on my studio album “Do You Like the Rain?”it was always impressive.
Best Regards,
Stan Sullivan
Thank you Stan! I appreciate your support and good words. Hope you are still writing and singing and moving people. bk
Thank you John! I hope you are feeling even better now, post surgery. I know the buzzing/ringing lasted quite awhile after my surgery…
I appreciate your comments and wish you well. bk
How are your symptoms now?
I’ve been told I have the same issue and am really nervous about thr surgery. Thanks. Linda
I had my scsd surgery 11/5/15,doing good ,except alot of tightness in my head and rt eye ,CT showed that the plate has separated ,can’t fix it yet to soon,it’s causing me alot of discomfort.
Had trans-mastoid job done 6 days ago (canal occlusion). Can walk with a stick now, and potter about the house without one, but still quite dizzy.
Loud tinnitus is pretty much all I hear in the affected ear so far. There’s maybe 25% hearing there, but in a loud environment, I’m screwed (or even when the kettle is on and someone is talking to me, I can’t hear them).
Sharp, stabbing pains persist, plus the feeling that the ear is completely stopped up (same as you describe: blood pooled in middle ear).
I’m finding it near impossible to focus on anything more than 10 feet away, still, but have lots of horrible exercises from the physio team to help with all that!
Like yourself, I’m a singer, which is why I had no option but to get the repair done: when you make yourself dizzy by singing (and I quite literally shudder to remember how it felt to hum!), you have no choice in the matter. I am likewise afraid to sing out, though, for the very reasons you describe – and because the little quiet singing I’ve done sounds appalling! I’ve no idea how it sounds to anyone else, but that’s a secondary concern just at the moment…
Hi Barbara,
I am four weeks post-op. I had right side Dehiscense surgery at Mass Eye and Ear with Dr. Lee. I can’t say enough good things about him, his team and the hospital. It helps to know I am having the same post op symptoms you are. There have been instances where I’ve been nervous that the hole has opened. The one thing I wonder is if you’re feeling is that if you lightly tap around your incision do you at one area hear the noise in your head a hollow sound? A sound that sounds almost like if you were to tap on a drum? I’m thinking this still healing the healing stage and things haven’t solidified.
I am getting ready to do the surgery in 3 weeks. Nervous, but hopeful. The fullness and dizziness keep getting worse but the most troublesome symptom is the autophony. i am not able to speak up…
I have a question though. my doctor told me i will need a surgery for every side. and the surgery is to block the superior canal. won’t blocking the canal on both sides make me feel dizzy all my life? how will my body compensate for the loss of the superior canal functionality? am i better off to ask the doctor to resurface vs plug the hole in my ear??
my doctor is very uncooperative and takes very little time to explain things. so here i am asking you. please let me know what you think.
my question is did your doctor plug or resurface the hole?
do you still feel dizzy?
my email is ramez.sabra@gmail.com
as this thing have been going on for 4 years now. i have lost most of my social life. I can use a friend. even a pen pal one only.
Thank you for your blog about SSCD post operation. I live in the UK and had surgery in my left ear almost 3 weeks ago now. I have exactly the same symptoms as you had, dizziness, heavy head, ear feeling full, noise and own voice loud in that ear and also the movement of my head sounds and if I touch my ear….so loud!! In your case when did the ear feel clear and when has your dizziness stopped and how long did that go on for? I do know everyone heals differently but it is interesting to know from someone who has had the same procedure. Thank you again. Oh and I am also musical – I teach piano privately and play in church so this has also ceased at present! ?
Hope you are recovering well, Nikki! I am so sorry to have been out of touch with my website and have missed all these comments…
So sorry Ramez:( I have been out of touch with website so I am just seeing this now. I had the hole plugged, not resurfaced. Dizziness is mostly gone (only a little worse when I’m in typically dizzy-making circumstances, like getting up too fast or going on a spinny carnival ride!) wishing you the best… Feel free to email barbarakessler@me.com
How are things now?
How are you now, Susan? Sorry to be so out of touch with my website. Interestingly I never noticed that hollow sound/sensation but now that you mention it tapping the incision are I do notice that…
Peter I hope you are well-mended now – again, I apologize to all for being out of touch with website… Not sure if you will be notified of my reply! Good luck returning to singing. I am happy to report all is well for me:)
Sorry to hear Patty – have things improved? Thx for your comment -bk
I am doing very well and do not regret the surgery – i completely understand your nervousness Linda! Hope you are well and sorry for late reply
Note to all: this is Barbara. I lost my login info so I am commenting as “Admin” under my husbands email…! If you care to contact me with any future questions, I am at barbarakessler@me.com
All the best!!
BK 6-19-16
I got stuck in again two weeks after surgery. No time to waste! I sounded awful still, but only, I’m told, to myself. I have started in recent weeks to feel dizzy from time to time when looking up, or when lying on that side, but it only seems to come on when I’m exhausted, and affects my daily life not at all. I’m thrilled with the outcome!
Hey.
Around 3 or 4 years ago (25 or 26 years old) I was attending school for audio engineering technologies. Music has always been my biggest passion. I wanted nothing more then to be a musician/producer. Thats all I ever wanted to be and I was good at it until I got my first ever sinus infection and it was a really horrible case that took weeks to get rid of. At the time I couldn’t afford to see a doctor nor did I have the time. Well it plugged my nose up something fierce so when I sneezed it blew back the air into my ears. It did something to me. Sounds were muffled, I could hear myself talk like I had a finger in my right ear and also whenever I talked, listened to music, or heard any loud noises, my vision shook and i got dizzy/vertigo. I figured it would stop after the sinus infection subsided. Needless to say it didn’t. I had it for a few more months and it was affecting my school projects and assignments. I went to the doctors at the university of wisconsin and they found out I had superior canal dehissence. I told the doctor I can’t afford surgery and he told me he would still perform the operation to repair it even if I didn’t have insurance because it was affecting my quality of life but the bill would be hefty. But he said he could get me scheduled and have me sign the paperwork that day if I wanted. I told him that I needed a day or two to think about it because it is a lot of money. A couple days later I decided to do it. Called the doctor and he said it was too late, that he talked to the board and they recommended he didn’t perform the surgery due to me not having insurance. So since then, I have failed my schooling for audio engineering. I’ve attempted to keep producing but have given up on it because I can’t balance the audio properly and music that I used to love listening to for pleasure and artists’ music that I used to love mixing now causes me to lose my balance and I couldn’t stay focused. I fell into a deep depression since I now can’t pursue the career that I dreamed of. I found that one thing that some people search their whole life for. Something you love doing that could also be your job. It’s all gone now. Now I’m a hard labor roofer breaking my body and risking my life to do and I hate it. I lost the love of my life due to my depression and I’ll never get her back. Not to mention the symptoms are driving me nuts! Suicide is something that often crosses my mind now and I feel like soon I will pull the trigger.. What do I do? Where can I go? I just want to be happy and pursue my dream job. Somebody please help me. My email is srgreenejr@gmail.com please help me. Please!
Hi Nicki
I live in UK also , and need to get my SSCD fixed. Could you please tell me where you had the operation done ?
I’ve had my problem for 23 years , and managed it ok , until it worsened recently.
So glad to hear your success story.
My email is kedmunds@fastmail.com
Thanks
Kelvin
Scheduled for my first sscd surgery in December.
Suffered with the pulsating noise for a long time. Autophony and dizziness has drastically changed my life. I used to hike in the mountains along with strength training. When I attempt that now the noise iny head gets so loud I have to stop. Can someone tell me what is the first thing you experience after surgery.Because of my age my awesome Dr. will not be performing a crainiotomy but will be going in to the superior canal behind my ear. If this has happened to anyone I would appreciate knowing how you improved after surgery.
Wondering if there are any updates to the discussions here as my ENT has diagnosed SSCD in my left ear. I would like to go in to surgery (or not) with all the information I can get. Thank you!