SCDS is superior canal dehiscence syndrome, a condition of the inner ear. Typical symptoms are autophony (hearing your own voice in your head), dizziness, and balance problems.
I’m sitting in the Same-Day Surgery waiting room, writing this.
We got up at 4 am and got to the hospital right after 5:30 am. They sent us upstairs, to the Same-Day Surgery area, and took us both back. Todd was impressed that he was taken to a real room with a door that closes to get into his gown. When he had knee surgery, all he got was a bed behind a curtain. The volunteer put on his stockings, marked the right side of his head so Dr. Gianoli would know which side to cut, and asked him if he had brought a vein, which, apparently, he hadn’t.
Then a man took us to the surgical prep area. At least six people talked to Todd (two anesthesiologists, a couple of nurses, Dr. Gianoli, and the man who wheeled Todd), and all of them asked him his name and birth date. Several of them asked what he was having done and on which side—I guess that’s standard procedure since that man in Florida got the wrong leg cut off.
Eventually the anesthesiologist got into a vein in his right arm, and the female nurse wearing a coat (because it’s so cold in this hospital—I was warned about it) gave him some happy drugs. About that time Todd remarked that maybe I should leave because I didn’t look like I was enjoying myself. I figured I would stay until someone told me to leave, and I was standing against the wall with my arms crossed to keep out of the way. There wasn’t a lot of room in this cordoned-off area. Also, I didn’t know you were supposed to enjoy yourself in the surgical prep area. Maybe I should dance a jig?
Most of the staff in this hospital are white. There are some black people to greet you, and the man who took Todd from the dressing room to the surgical prep area was black. That was about it. I also noticed that since the 1960s, there has been one female chief of staff of this hospital.
A family across the waiting room stand holding hands, saying a prayer. I wonder if they’re the family of a little girl I saw when I was leaving the surgical prep area.
I left Todd right before 7 am, and he didn’t go into surgery until 8:15 am or so. The volunteer in the Same-Day Surgery waiting room called surgery to check on why it was taking so long, but when surgery called back and I talked to them, they didn’t give any explanation, and I didn’t ask.
The waiting room is almost empty now. Only one family is left—the praying family disappeared.
***
Now I’m sitting in another, much smaller waiting room, and a man named Mr. J is telling me all about his life. He said he was an airplane mechanic in World War II and traveled all over the Pacific repairing airplanes for 4 years. Then he came back and attended Southeastern Louisiana University and met his wife there. They’ve been married 61 years, he is 87 years old, and she is 82 years old. Oddly enough, she was having surgery on her ears to get tubes put in (the first procedure Todd ever had to correct his ear problems).
Mr. J’s age makes me feel better about my father being 82.
This man seemed more active and articulate than my father (who is no slouch as a talker), but it may have been his manner. He said he was a professor at SLU and also trained many of the techs in this hospital in the physics of x-rays. He likes to be busy.
Dr. Gianoli came in and told me about the surgery right there in the room, instead of taking me out in the hall. After asking me if I was bothered by blood, he showed me a picture of the surgical site. He said that when he got into Todd’s head, he discovered that he needed to resurface a larger area than he had thought. He said the brain was actually adhering to the malleus (hammer) and that he had to pull it away and cover that area with a piece of bone (taken from Todd’s skull? I forgot to ask). He then covered the superior canal (the thinning of bone there was the original reason for the surgery) with another piece of bone and sealed off that whole area.
Also, Todd’s intracranial pressure was at 28, when it should have been below 20. Dr. G. said they got it down and that that may prevent the left ear from going bad (Todd has mild symptoms in that ear, but they don’t show up on the tests he took Tuesday and Wednesday).
When I got done talking to Dr. G, Mr. J asked me about him. He said he was impressed by him. I gave him Dr. G’s name and location, but I forgot that I could have looked him up online and given this man his phone number.
***
It’s 7 pm, and I’m in the ICU waiting room now. Everyone else in here is with someone, and I feel lonely.
I’ve seen Todd three times today, and he’s getting more lucid as time goes on.
I didn’t see him the first time until about noon, and then I felt bad because the ICU nurse had called me, but I didn’t hear the phone, and so she had to call me again half an hour later.
When I saw him at 2, he had eaten some lunch. When I went in to see him around 5, he was sleepy and said the steroids had almost made him throw up. You don’t want patients to throw up after this surgery, because the force of vomiting could dislodge the newly implanted bone. Todd said the nurse said she would give him the steroids much more slowly the next time.
I hung around until 6 in the hopes that I could be there when she gave him the steroids, but she didn’t show up. I crept out and managed to leave without waking up Todd.
I saw Mr. J again. He said that during his wife’s surgery, the doctors had discovered that a benign tumor had recurred in her ear (“choleastoma” was the word he used, I think), and he said he knew that her ear problems were too painful to be caused by a fluid imbalance.
I had my laptop on my lap the whole time, and finally he asked me what people like me would do without our laptops. “Have a less stiff neck,” I replied.
Mr. J is a singularly distinctive character, a welcome diversion from a continuing nightmare.
He was a very interesting fellow. I could have kept talking to him for a while. Though I did get the impression he was fond of having his own way. 🙂
I have recently been diagnosed with the same problem and trying to get in with an ENT is disheartening to say the least. Waiting over a month just to see him and then the day of the appt, it was canceled due to inclemate weather and the reschedule is in weeks….Looking around for another doc. The pressure in my right ear is almost unbearable at times…Imbalance…feeling like I am on a ship…Difficulty focusing on anything. Incoordination….It’s terrible…
Was there a long wait before the surgery?
THANK YOU FOR TAKING THE TIME TO LISTEN AND REPLY
Joan, I’m sorry you’re having so much trouble. Todd didn’t have a long wait for the surgery, but then, he was doing it out of network. You should try scdssupport.org or email Todd at todd404@gmail.com
Just reading your blog – interesting and also glad to read about other peoples experience with SCDS. I was just diagnosed with bilateral SCDS. Worse in the left. I was in the hospital with violent vomiting due to vertigo. I couldn’t walk due to balance. How did your husband do post-op? Did the symptoms resolve? Anyway, thanks for all the info that you posted!
Paul
Paul,
my husband never had much vertigo or any balance problems, so he didn’t need to recover much in those ways after his surgery. However, some people have had a hard time in the first few weeks but have improved over time.