And the 70's hits keep rolling.
I started hearing swishy noises last night (like most of the patients that have my surgery but I never heard it). This morning I tried the dial tone test (maxxed the volume and put it to my bad ear) and I thought I heard something. Then, I put on my ipod (just on my bad ear) and blasted what was ever on there--- in this case, Earth Wind and Fire (great for long runs). And I could just make out "Sing a song" (for those not familiar with 70's soul--- I suggest you go download some right now). It's still only .5% hearing but at least now it's actual sounds and not just scratching or electronic Frampton-esque noises in my head. Anyway, very positive news.
I'm looking forward to the point I can actually run and hear out of both ears. Because right now-- all I can do is slowly walk, although it's getting better each day.
Susan
Monday, June 30, 2008
Saturday, June 28, 2008
Good Vibrations
Hi, this is Susan (my second post) and I am trying to keep up with the 70's music theme here. I now can scratch above and below my ear (where my hairline is) and I can "hear" the vibrations inside my head. Still nothing coming through my ear canal but I am picking up the vibrations from the scratching.
The reason this is a big deal is that the hearing test that I had at the hospital tested my hearing via my ear canal and the vibrations on the bone below my ear and both showed no activity at all. And now my personal version of the vibrations on the bone test (I am scratching the same area the technician was testing) is definitely showing activity!
I didn't go into just how depressing my hearing test was before but it was quite distressing. I was prepared for no activity thru my ear canal but I was not prepared at all for no activity at the base of my ear on the skull (bone) with the vibrations since this would by pass my stuffiness. When I asked the tech what he thought I should do next (I meant--- should I take the results right away to the surgeon? get a more sensitive test? etc) he said, "Well there's been wonderful progress in hearing implants and blah, blah, blah". I didn't hear the rest because I stopped him right away and said, "I'm talking about this minute. What should I do right now?" I think he realized the he was premature with the implant remark.
Anyway, although my care at UPMC in general was excellent, the follow up that day when the hearing tests revealed zero activity was poor. My surgeon had gone out of town and the only person, other than the implant pushing hearing tech, that I could talk to was a nurse practioner who told me that I should wait THREE MONTHS before expecting even a .01% improvement in my hearing or stuffiness. She then said, "Well, you can hear a dial tone in the bad ear, right?" I was very close to giving her permanent hearing loss in one of her ears by yelling, "Have you heard nothing I've been saying? I can hear absolutely nothing in this ear!!!"
Back to more positive stuff. I am picking up the scratching vibrations above/below my ear and I felt this morning like a heard something squishy. Marty looked in my ear and said there's a lot of wax and something quasi wet (not much), so I'm hoping that made the noise.
I know this is a tad gross. But it's very positive stuff because I thought I heard this squishy thing first and then Marty confirmed it by checking in there (the other ear is completely clear). I'll keep you posted.
Love,
Susan
The reason this is a big deal is that the hearing test that I had at the hospital tested my hearing via my ear canal and the vibrations on the bone below my ear and both showed no activity at all. And now my personal version of the vibrations on the bone test (I am scratching the same area the technician was testing) is definitely showing activity!
I didn't go into just how depressing my hearing test was before but it was quite distressing. I was prepared for no activity thru my ear canal but I was not prepared at all for no activity at the base of my ear on the skull (bone) with the vibrations since this would by pass my stuffiness. When I asked the tech what he thought I should do next (I meant--- should I take the results right away to the surgeon? get a more sensitive test? etc) he said, "Well there's been wonderful progress in hearing implants and blah, blah, blah". I didn't hear the rest because I stopped him right away and said, "I'm talking about this minute. What should I do right now?" I think he realized the he was premature with the implant remark.
Anyway, although my care at UPMC in general was excellent, the follow up that day when the hearing tests revealed zero activity was poor. My surgeon had gone out of town and the only person, other than the implant pushing hearing tech, that I could talk to was a nurse practioner who told me that I should wait THREE MONTHS before expecting even a .01% improvement in my hearing or stuffiness. She then said, "Well, you can hear a dial tone in the bad ear, right?" I was very close to giving her permanent hearing loss in one of her ears by yelling, "Have you heard nothing I've been saying? I can hear absolutely nothing in this ear!!!"
Back to more positive stuff. I am picking up the scratching vibrations above/below my ear and I felt this morning like a heard something squishy. Marty looked in my ear and said there's a lot of wax and something quasi wet (not much), so I'm hoping that made the noise.
I know this is a tad gross. But it's very positive stuff because I thought I heard this squishy thing first and then Marty confirmed it by checking in there (the other ear is completely clear). I'll keep you posted.
Love,
Susan
Friday, June 27, 2008
Peter Frampton
Susan just called and says that she feels like something might be going on with her right ear. She said that when she covers her good (left) ear, she feels like she can hear the first mouth harp note from Peter Frampton's "Do you Feel" Not exactly hearing, but anything is good.
She can recreate the sound/sensation by covering her good ear.
(Mom and Dad--you can ask one of the kids about Peter Frampton.)
She can recreate the sound/sensation by covering her good ear.
(Mom and Dad--you can ask one of the kids about Peter Frampton.)
Dr. Kassam
One of the things most disappointing for Susan was that when she went in to get her sutures out and her hearing tested, the surgeon, Dr. Kassam wasn't there for her to talk to about her hearing. She had to leave Pittsburgh with no hearing in her right ear and no interaction with Kassam since she woke up from the surgery.
Last night, Susan got Lois, Dr. Kassam's assistant, to set up a phone meeting with Kassam for Tuesday. Then she wrote a long email to Lois with a list of questions about her hearing. I told Susan that I had seen Kassam's email address on the UPMC website and that she might as well put him on the email as well. So she did and sent the email.
Ten minutes later Kassam called Susan's cell phone from an airport somewhere to talk to her. He said he was really sorry that he had to leave before her follow-up appointment. He swears that the nerve was working when they closed her up. He says that he went to her hospital bed the next morning and covered her left ear and spoke to her and she responded. Susan remembers this, but she remembers that she couldn't hear him with her right ear.
He said that he would personally do a follow-up audiogram with her at the end of July.
He is optimistic about her hearing.
Last night, Susan got Lois, Dr. Kassam's assistant, to set up a phone meeting with Kassam for Tuesday. Then she wrote a long email to Lois with a list of questions about her hearing. I told Susan that I had seen Kassam's email address on the UPMC website and that she might as well put him on the email as well. So she did and sent the email.
Ten minutes later Kassam called Susan's cell phone from an airport somewhere to talk to her. He said he was really sorry that he had to leave before her follow-up appointment. He swears that the nerve was working when they closed her up. He says that he went to her hospital bed the next morning and covered her left ear and spoke to her and she responded. Susan remembers this, but she remembers that she couldn't hear him with her right ear.
He said that he would personally do a follow-up audiogram with her at the end of July.
He is optimistic about her hearing.
Wednesday, June 25, 2008
First post from Susan
Hey everyone--this is Susan. I just got home half an hour ago. I am sitting on our deck drinking vitamin water watching the sunset. Marty is my typist.
I'm incredibly touched by all the comments on the blog postings. While Marty has told me in general about them, this is the first time I have actually seen them all.
Here's the good news. I feel and look ten years younger. I have to do a double-take when I look in the mirror because I am not used to seeing myself smile without effort. Also, I lost a couple of pounds from barfing so I am now a slim size 6. I do not recommend this diet.
In addition to looking better than I ever have, I was the envy of all the women at the family house where I was recuperating because they all told me how wonderful it was (FYI--This is Marty--I'm just typing here) to have a husband that cared and loved me so much and was so good looking too. Now granted, the average age there was 71.5 but nobody realized it more than I did.
The bad news. I still have vertigo. Currently there is no hearing in my right ear. And I feel like an idiot because I was clueless as to how much time it would take for me to recover from this. While my goal was to start work tomorrow (I can't believe I wrote an email prior to surgery to my producer, Margaret, saying I might not make it in until tomorrow afternoon) my revised goal is to start July 7th from home and ease back into the office.
Once again I really appreciate all the comments and support and I will be posting about my progress over the next two weeks.
Love, Susan
I'm incredibly touched by all the comments on the blog postings. While Marty has told me in general about them, this is the first time I have actually seen them all.
Here's the good news. I feel and look ten years younger. I have to do a double-take when I look in the mirror because I am not used to seeing myself smile without effort. Also, I lost a couple of pounds from barfing so I am now a slim size 6. I do not recommend this diet.
In addition to looking better than I ever have, I was the envy of all the women at the family house where I was recuperating because they all told me how wonderful it was (FYI--This is Marty--I'm just typing here) to have a husband that cared and loved me so much and was so good looking too. Now granted, the average age there was 71.5 but nobody realized it more than I did.
The bad news. I still have vertigo. Currently there is no hearing in my right ear. And I feel like an idiot because I was clueless as to how much time it would take for me to recover from this. While my goal was to start work tomorrow (I can't believe I wrote an email prior to surgery to my producer, Margaret, saying I might not make it in until tomorrow afternoon) my revised goal is to start July 7th from home and ease back into the office.
Once again I really appreciate all the comments and support and I will be posting about my progress over the next two weeks.
Love, Susan
Susan's feeling better
I just spoke to Susan again and she sounded much better and more optimistic. Any of you who really know her know that she doesn't stay down for long.
She should be home (in Baltimore) around 6:30 tonight.
She should be home (in Baltimore) around 6:30 tonight.
Susan's hearing
Susan had her hearing test today.
She knew that she wouldn't be able to hear, but they did some sort of vibrational test that she should have heard through the wax. She heard nothing and they said that indicates that there's no response from the nerve in her right ear. She's devastated.
They say that 6% of people have hearing loss after this surgery and that in two percent of people it's permanent.
We can only hope that the nerve will repair itself.
She knew that she wouldn't be able to hear, but they did some sort of vibrational test that she should have heard through the wax. She heard nothing and they said that indicates that there's no response from the nerve in her right ear. She's devastated.
They say that 6% of people have hearing loss after this surgery and that in two percent of people it's permanent.
We can only hope that the nerve will repair itself.
Tuesday, June 24, 2008
Wax; Work; 4th of July
I am back in Baltimore. Susan called me on my drive back to Baltimore and said she finally got in touch with Lois, the nurse at Dr. Kassam's office. Lois told her that the reason that she feels like there is blockage in her ear is that during the surgery they filled her ear canal and the opening to her sinuses with wax to prevent any spinal fluid from leaking into either of those. The wax will take up to 6 weeks to go away. I assume that means be absorbed by the body.
I think she is still supposed to hear muffled sound through her right ear, but she still doesn't hear anything.
Another thing they failed to mention to her is that they don't recommend someone with this surgery return to work for six weeks. Susan was planning to work for a half day on Thursday and a full day on Friday--just over a week after the surgery. Fortunately, she realizes she can't do this.
Usually this surgery is done to someone in their seventies and we think they usually aren't concerned about returning to work because they are retired. Kassam (or his staff) failed to mention this fact.
So, even though they will send her home, she is not supposed to do much of anything for a while. We've decided that this means that she can't go to Chicago. Unless there is dramatic improvement, I will cancel my flight and stay here with her and take care of her.
I think she is still supposed to hear muffled sound through her right ear, but she still doesn't hear anything.
Another thing they failed to mention to her is that they don't recommend someone with this surgery return to work for six weeks. Susan was planning to work for a half day on Thursday and a full day on Friday--just over a week after the surgery. Fortunately, she realizes she can't do this.
Usually this surgery is done to someone in their seventies and we think they usually aren't concerned about returning to work because they are retired. Kassam (or his staff) failed to mention this fact.
So, even though they will send her home, she is not supposed to do much of anything for a while. We've decided that this means that she can't go to Chicago. Unless there is dramatic improvement, I will cancel my flight and stay here with her and take care of her.
Sunday, June 22, 2008
Of course I stayed tonight
I decided to stay tonight and will be leaving tomorrow morning. I will try to update the blog with the results of Susan's follow-up appointment on Wednesday.
Susan is much better, but she's realizing that she won't be able to do as much as soon as she had thought she would be able to. She's already canceled her business trip to Chicago on June 29th. She doesn't even like riding in the car because of nausea, so I can't imagine her getting on a plane. I was going to go with her to Chicago on the 29th and stay for the whole week while she was going to go back to Baltimore on June 30th and then rejoin me in Chicago on July 3rd. I think I'm still going for the week, but we'll see. She is still planning to come to Chicago on the 3rd.
Susan still can't hear out of her right ear, but we've been doing research and it takes some people more time than others for their hearing to return. We've been helping her do neck exercises where she moves her head and keeps her eyes focused on a stationary target and eye exercises where she keeps her head still and moves her eyes from one object to another.
When she moves her head down she hears ringing. Hopefully that's a good sign.
Thanks to everyone for all of your support.
Moving her eyes:
Neck exercises:
Sunday afternoon in Shadyside
We just got back from a walk in a little Georgetownesque shopping area (Walnut Street in Shadyside) and Susan tried on some clothes and even bought a shirt and sweater. We had lunch and she ate two pieces of pizza and french onion soup. So her appetite is back and everything seems to be getting back to normal. We also went to the grocery store and she was pretty worn out by the end. Susan and her mom are both asleep right now.
The only thing now is that none of her hearing has returned to her right ear. She feels a lot of fluid pressure which we were told to expect and that may be the only reason. It is supposed to take a while for the fluid to clear up, but it would be nice to have a sign that it is coming back at all.
I can't imagine leaving her now.
The only thing now is that none of her hearing has returned to her right ear. She feels a lot of fluid pressure which we were told to expect and that may be the only reason. It is supposed to take a while for the fluid to clear up, but it would be nice to have a sign that it is coming back at all.
I can't imagine leaving her now.
Saturday, June 21, 2008
Schedule
Susan is in room 502 at the family house. She will be here until Wednesday afternoon (6/25) at the minimum. I will probably leave tomorrow and get back to work. Her mom will drive her home on Wednesday if all goes well.
Susan is home; Photos
Well, not home really, but out of the hospital. We left the hospital around 11:30 am. They discharged her with prescriptions and directions of things for us to look out for. The main thing we want to avoid is a Cerebrospinal Fluid (CSF) Leak. The dura, which is the covering of the brain is like saran wrap and they sew it and glue it at the end of the surgery, but occasionally it leaks and you have to go back and they do a spinal tap and put in a lumbar drain. We have to look for any swelling or ballooning at the incision site.
Her voice sounds a little higher. She says it's because she can't hear out of her right ear. This is not permanent. It's a result of swelling and fluid from the surgery.
Here are some recent pictures from yesterday and today at the hospital:
Susan's Incision:
Finally Feeling Better:
Her voice sounds a little higher. She says it's because she can't hear out of her right ear. This is not permanent. It's a result of swelling and fluid from the surgery.
Here are some recent pictures from yesterday and today at the hospital:
Susan's Incision:
Incision Closeup:
Finally Feeling Better:
Mom and Susan:
Let's get out of here!
The $75,000 smile: 
Discharge day 1
When I got back to the hospital last night, after being gone only 2 hours, Susan was in bed resting because she had just gotten back from two long walks with Joy! We stayed with her until the nurse checked in on her at around 10pm. We went back to the house and I fell asleep almost immediately before I could update the blog.
It's 7:54am and we're getting ready to go over to the hospital now. She's going to be discharged today at 11.
It's 7:54am and we're getting ready to go over to the hospital now. She's going to be discharged today at 11.
Friday, June 20, 2008
Friday Night
Susan has definitely turned a corner. After PT she has been forcing herself to get up and eat and drink a little. We've been able to talk about the surgery and some of the things she's missed. She has sat in the chair instead of the bed for short periods of time. She still has to crawl back into bed to let nausea pass, but it's definitely getting better.
Susan's mom Joy arrived at 4:30. Susan was really happy to see her. Joy is at the hospital right now while I am back at the house to neaten up the place and take a shower since I never went home last night. I'm heading back soon and Joy and I will leave Susan alone overnight.
Flowers arrived from Mom and Dad Marren and she was very touched.
The address of the apartment where Susan will be after they discharge her (possibly tomorrow!) is the following:
Family House
5245 Centre Avenue
Pittsburgh, PA 15232
Susan's mom Joy arrived at 4:30. Susan was really happy to see her. Joy is at the hospital right now while I am back at the house to neaten up the place and take a shower since I never went home last night. I'm heading back soon and Joy and I will leave Susan alone overnight.
Flowers arrived from Mom and Dad Marren and she was very touched.
The address of the apartment where Susan will be after they discharge her (possibly tomorrow!) is the following:
Family House
5245 Centre Avenue
Pittsburgh, PA 15232
Physical Therapy
Susan just went to physical therapy. They took her by wheelchair. She was wearing an eye cover which has been helping her from being nauseous. While she was working with one therapist, another whispered to me that I should encourage her not to wear the eye cover, to keep the blinds open, to keep the TV on and to sit in the chair instead of bed while she is eating. When we got back from the PT Susan almost got sick before she got out of the wheelchair, but she didn't. She had to rest for a little while with the eye patch on, but now the blinds are open and the TV is on. She is watching Law & Order. She was just able to get up and walk to the bathroom and back by herself.
Vertigo scale
Okay--Susan got up and to the bathroom and back to the bed without throwing up. She had a little bit of yogurt. She's back in bed but slowly (very slowly) seems to be recovering from the vertigo.
According to her, on a scale of 1-10 the vertigo was an 11 the end of the day of surgery. It was a 5 last night, went down to 2 this morning, back up to 4, and now it's a 3.
According to this scale, I'd say it was 33 when she first got out of surgery.
(It's 12:57. For some reason the blog puts the wrong time on the posts and I have to manually change the post times. It seems to be early by around 3 hours and 13 minutes--it's not a time zone thing. Weird.)
According to her, on a scale of 1-10 the vertigo was an 11 the end of the day of surgery. It was a 5 last night, went down to 2 this morning, back up to 4, and now it's a 3.
According to this scale, I'd say it was 33 when she first got out of surgery.
(It's 12:57. For some reason the blog puts the wrong time on the posts and I have to manually change the post times. It seems to be early by around 3 hours and 13 minutes--it's not a time zone thing. Weird.)
Back in bed
The docs have really been stressing that Susan has to get up today and she's wants to, but she's still experiencing vertigo. She finally got up (slowly) from the bed and walked (with help) to the bathroom in the room. She got dizzy on the way back and I got her back in bed. Shortly after getting back in bed she threw up everything that she had eaten today: applesauce and water. They reattached her IV and she's asleep right now.
Her mom, Joy is coming later today from Fairfax.
Her mom, Joy is coming later today from Fairfax.
Friday morning
I stayed overnight in the hospital with Susan. She is still in bed. She still has vertigo. They finally explained to us today that the sensation of not moving while the room is spinning is vertigo. I thought it had something to do with heights. The neurosurgeon said that it may be a result of the "manipulation" of the 8th nerve during the surgery. They eventually gave her an anti-vertigo medicine and she's eaten and drunk a little bit.
Thursday, June 19, 2008
Susan's New Room
Susan just got moved to a new room: D822. It's a private room on a much quieter floor. She was able to scooch herself off of the bed onto the gurney and back onto the new bed. It doesn't sound like much but it was Olympian. Up to now she hasn't gotten out of bed or even sat up on her own yet.
Oh, yeah--she had brain surgery yesterday.
She's sleeping right now on her stomach which is the first time she's been off her back or side. Somebody just woke her up and she said "wow, I was out." It's the first really deep sleep she's had.
She's asleep again. Everything is peaceful.
Oh, yeah--she had brain surgery yesterday.
She's sleeping right now on her stomach which is the first time she's been off her back or side. Somebody just woke her up and she said "wow, I was out." It's the first really deep sleep she's had.
She's asleep again. Everything is peaceful.
Susan's roommate
This morning, in the kitchen, I ran into the relatives of Susan's roommate in 519G. As I thought, she had the same surgery as Susan did except that her blood vessel was impinging on the 5th cranial nerve instead of the 7th. The 5th nerve is the chief nerve of sensation for the face. Instead of twitching, this woman had shooting pains in her face for three years. She couldn't go outside in the winter because the cold air caused incredible pain. Her relatives had to do everything for her.
Kassam performed the surgery. Like Susan, her symptoms are gone and she appears to be completely cured.
Kassam performed the surgery. Like Susan, her symptoms are gone and she appears to be completely cured.
Thanks for the cards and flowers!
Flowers arrived in Susan's room from Jeff and Erica (and Carter and Cassandra) yesterday an hour or so after she got into the room. They almost got there before she did. At the time, she wasn't able to appreciate them (or see them, for that matter).
When I came in this morning there were more flowers. There were beautiful flowers from Wendy and a huge bouquet from the Creative Department at Advertising.com.
Just a few minutes ago someone knocked on the door and said there was mail (so "retro" as Susan would say) for Susan Kim. He delivered two funny cards from Jeff and Erica.
I have read all of the cards to Susan and she is very touched.
When I came in this morning there were more flowers. There were beautiful flowers from Wendy and a huge bouquet from the Creative Department at Advertising.com.
Just a few minutes ago someone knocked on the door and said there was mail (so "retro" as Susan would say) for Susan Kim. He delivered two funny cards from Jeff and Erica.
I have read all of the cards to Susan and she is very touched.
Morning after Surgery
I got to the hospital this morning and talked to Susan's nurse Brit before I went into her room. She said Susan had had a rough night and had thrown up several times. She had encouraged Susan to move her head and her arms and legs to prevent blood clots. She also told her that she might be at risk of pneumonia if she didn't start moving. They managed to get her to move enough to change her bedclothes for the first time since surgery.
Because the nausea was still pretty bad they started her on a steroid to take any possible pressure off of her brain (a common complication). Brit also told me that they might schedule a spinal tap if she didn't improve. We had read that this happens in 15% of patients. At this point, Brit said that Susan had started to respond better and she wondered if Susan was doing better without me there and she might act more needy if I was in the room.
I went into the room and Susan was in the exact same position as when I left her, but her bedclothes and towels were clean. She smiled and looked at me. I talked to her for a little bit and I noticed that she was definitely better. She can open her eyes for 5 or 10 seconds at a time and we talked for a few minutes. She could do neither last night without the world spinning.
She said she thought the steroids were working. I said good and you should keep moving your head and arms and legs because they are starting to talk about giving you a spinal tap. The next time the nurse came in and suggested Susan change her position, she agreed and completely rolled over on her side. The nurse actually had to tell her to slow down.
Since then she's had gingerale without getting sick. She's been much more responsive.
Because the nausea was still pretty bad they started her on a steroid to take any possible pressure off of her brain (a common complication). Brit also told me that they might schedule a spinal tap if she didn't improve. We had read that this happens in 15% of patients. At this point, Brit said that Susan had started to respond better and she wondered if Susan was doing better without me there and she might act more needy if I was in the room.
I went into the room and Susan was in the exact same position as when I left her, but her bedclothes and towels were clean. She smiled and looked at me. I talked to her for a little bit and I noticed that she was definitely better. She can open her eyes for 5 or 10 seconds at a time and we talked for a few minutes. She could do neither last night without the world spinning.
She said she thought the steroids were working. I said good and you should keep moving your head and arms and legs because they are starting to talk about giving you a spinal tap. The next time the nurse came in and suggested Susan change her position, she agreed and completely rolled over on her side. The nurse actually had to tell her to slow down.
Since then she's had gingerale without getting sick. She's been much more responsive.
Surgery Day Wrap-up
Susan continued to be nauseous the rest of the day. At 8:30 Susan's nurse Brit briefed the over-night nurse Cindy. I asked Cindy to evaluate Susan while she was awake so she wouldn't have to wake her again. I made sure she knew everything about her continuing nausea and she promised to continue the meds overnight. I left the hospital at 9pm when the visiting hours were over 15 1/2 hours after we got there.
She was resting with her eyes closed, not moving at all with an ice pack on top of her head.
She was resting with her eyes closed, not moving at all with an ice pack on top of her head.
Wednesday, June 18, 2008
Random thoughts as Susan sleeps
Susan has a teflon sponge in her brain stem.
She has a titanium mesh with titanium screws covering a quarter-sized hole in her skull.
She has no facial spasms whatsoever.
She has a titanium mesh with titanium screws covering a quarter-sized hole in her skull.
She has no facial spasms whatsoever.
Post-Op
Susan is in UPMC Presbuterian room G 519-1 for the night. It is a surgery step-down room (something between the ICU and a patient room) where they will monitor her for the night. She'll probably be moved to a regular patient room tomorrow if she is feeling better.
She came up on a gurney and was not moving at all when I first saw her. Transferring her from the gurney to the bed was not something I would not like to witness again in my lifetime. She did not react well. She's REALLY nauseous as a result of the surgery.
They gave her medicine for nausea and she 's mostly asleep right now. When she is awake, the room is spinning and she feels like throwing up.
The nausea seems to be getting better slowly. She is asking for coke on ice which is a good sign.
I am sitting in the room with her.
The nurses are very nice.
She came up on a gurney and was not moving at all when I first saw her. Transferring her from the gurney to the bed was not something I would not like to witness again in my lifetime. She did not react well. She's REALLY nauseous as a result of the surgery.
They gave her medicine for nausea and she 's mostly asleep right now. When she is awake, the room is spinning and she feels like throwing up.
The nausea seems to be getting better slowly. She is asking for coke on ice which is a good sign.
I am sitting in the room with her.
The nurses are very nice.
Susan's hearing nerve is OK
When we met with Dr Kassam before the surgery, he told us that during the operation, while they monitor the 8th cranial nerve (auditory) it is typical that they will hit the nerve during the operation and it will lose some of its capacity (hopefully temporarily) because it is right on top of the 7th nerve. The rule is that they can hit it 3 times before they have to stop the operation to protect the hearing. In fact, this is one of the major advantages of Kassam's surgery.
At the end of Susan's surgery, however, he said the 8th nerve "went out" completely without any warning. Because the 7th nerve had already been decompressed and they were at the end of the operation, they didn't have to stop. He said we'd have to wait and see whether her hearing recovered.
While I was outside talking on the phone to Susan's mom and her sister Wendy (there's no signal in the building because of the MRI machines or lead or something), Doctor Kassam came by the nurse's station in the waiting room and asked the nurses to tell me that her auditory nerve has completely recovered. They called my cell phone to let me know.
When I got back to the waiting room, the nurse said "he doesn't usually come in here to talk to us."
I'm sorry I missed him, but what a relief.
At the end of Susan's surgery, however, he said the 8th nerve "went out" completely without any warning. Because the 7th nerve had already been decompressed and they were at the end of the operation, they didn't have to stop. He said we'd have to wait and see whether her hearing recovered.
While I was outside talking on the phone to Susan's mom and her sister Wendy (there's no signal in the building because of the MRI machines or lead or something), Doctor Kassam came by the nurse's station in the waiting room and asked the nurses to tell me that her auditory nerve has completely recovered. They called my cell phone to let me know.
When I got back to the waiting room, the nurse said "he doesn't usually come in here to talk to us."
I'm sorry I missed him, but what a relief.
Surgery Completed
10:50. I was surprised (and concerned) because the OR called only an hour into the surgery, but it turned out that the decompression was complete. I met with Dr. Kassam and he said the decompression went very quickly. There was one large and one small blood vessel "thumping" on the nerve. After the decompression, they tested the facial nerves and there was no spasm. He said the results correlate with the 93% of successful HFS surgeries. However, there may be a complication with her hearing.
They're still closing her incision. I can see her in 2 hours.
They're still closing her incision. I can see her in 2 hours.
Surgery Day - Part 1
I slept for about 2 hours. Susan got about 6.
I got Susan up at 5am and we got to UPMC at 5:30. I was with Susan in the Surgical Waiting Area until about 7:30 when they kicked me out. They have actually been incredibly kind. They let her take her ipod into the pre-op holding area and listen to it until she was under. The nurse then found me in the waiting area and returned the ipod.
I am in the surgical family waiting room now. It's very comfortable with various waiting areas with TVs and Wifi internet. There is a large flat screen monitor that tells us the stage of the surgery. It's 9:15am and according to the screen, Susan is in the OR but surgery hasn't started yet.
I got Susan up at 5am and we got to UPMC at 5:30. I was with Susan in the Surgical Waiting Area until about 7:30 when they kicked me out. They have actually been incredibly kind. They let her take her ipod into the pre-op holding area and listen to it until she was under. The nurse then found me in the waiting area and returned the ipod.
I am in the surgical family waiting room now. It's very comfortable with various waiting areas with TVs and Wifi internet. There is a large flat screen monitor that tells us the stage of the surgery. It's 9:15am and according to the screen, Susan is in the OR but surgery hasn't started yet.
Tuesday, June 17, 2008
Day One at UPMC
As some of you have heard, Susan is going into surgery tomorrow to correct her hemifacial spasms. She has lived with facial spasms on the right side of her face for about six years (yes--for about as long as she has known me--draw your own conclusions). The spasms have gradually grown over the years which we found out is typical of her condition. When we got married in 2004, they were so infrequent that they were not noticeable. Today she can't have a conversation without facial spasms closing her right eye.
Susan initially diagnosed herself. She went on Google and figured out what she had. Hemifacial spasms (HFS) are caused by a blood vessel impinging on the seventh cranial nerve in the brain stem. Two years ago, at the advice of a neurologist in Baltimore, she tried to control the spasms with Botox. This we found out today is typical, though it is not recommended because it causes further facial nerve issues. It stopped the spasms temporarily, but also froze her face unevenly. She stopped after 3 or 4 treatments about 9 months ago.
To make a very long story short, tomorrow (Wednesday) Dr. Amin Kassam is going to perform surgery to find the nerve and the offending blood vessel, and insert a Teflon sponge in between the two. Dr. Kassam is the Director of the Minimally Invasive endoNeurosurgery Center at the University of Pittsburgh and the Chairman of the Department of Neurological Surgery. He has pioneered a technique where they use a microscope and an endoscope to see what they are doing without having to resect the brain. They monitor her hearing and optical nerves at the same time so they know immediately if they are affecting them. (Elsewhere, they do this surgery without the cameras and without nerve monitoring and occasionally patients lose their hearing.) Either way, as Dr. Kassam said today, it is surgery in the dark recesses of the brain and is not without risk.
Here is a description of the surgery Dr Kassam has pioneered: http://www.neurosurgery.pitt.edu/minc/cranialnerve/disorders/hemifacial_spasm.html
Susan went through a battery of tests today including electrical stimulation of the facial nerves, hearing tests, vision tests, EKG, an anesthesiology consultation, blood typing (she hates needles), and chest x-rays.
We learned today that the nerve is the size of a strand of spaghetti (angel hair pasta, actually) and connects the facial muscles around the eye, cheek and mouth to the brain stem. The blood vessel is fraying the sheath around the nerve causing the nerve to fire repeatedly even though the brain is not sending a signal. It also short-circuits the nerve. One of the tests today demonstrated that an electrical signal applied directly to a muscle near her mouth also caused the muscle near her eye to spasm even though there is no link between the two because it was jumping across the nerve at the point of impingement. The stimulation was through needles, which you can see from the photo she enjoyed.
I will take Susan in at 5:30am tomorrow and the surgery will be at 8am. The surgery will be approximately 2 hours plus post-op, so you may not see this until after the surgery has started.
I will update you all on how it goes after the surgery.
Marty
Susan initially diagnosed herself. She went on Google and figured out what she had. Hemifacial spasms (HFS) are caused by a blood vessel impinging on the seventh cranial nerve in the brain stem. Two years ago, at the advice of a neurologist in Baltimore, she tried to control the spasms with Botox. This we found out today is typical, though it is not recommended because it causes further facial nerve issues. It stopped the spasms temporarily, but also froze her face unevenly. She stopped after 3 or 4 treatments about 9 months ago.
To make a very long story short, tomorrow (Wednesday) Dr. Amin Kassam is going to perform surgery to find the nerve and the offending blood vessel, and insert a Teflon sponge in between the two. Dr. Kassam is the Director of the Minimally Invasive endoNeurosurgery Center at the University of Pittsburgh and the Chairman of the Department of Neurological Surgery. He has pioneered a technique where they use a microscope and an endoscope to see what they are doing without having to resect the brain. They monitor her hearing and optical nerves at the same time so they know immediately if they are affecting them. (Elsewhere, they do this surgery without the cameras and without nerve monitoring and occasionally patients lose their hearing.) Either way, as Dr. Kassam said today, it is surgery in the dark recesses of the brain and is not without risk.
Here is a description of the surgery Dr Kassam has pioneered: http://www.neurosurgery.pitt.edu/minc/cranialnerve/disorders/hemifacial_spasm.html
Susan went through a battery of tests today including electrical stimulation of the facial nerves, hearing tests, vision tests, EKG, an anesthesiology consultation, blood typing (she hates needles), and chest x-rays.
We learned today that the nerve is the size of a strand of spaghetti (angel hair pasta, actually) and connects the facial muscles around the eye, cheek and mouth to the brain stem. The blood vessel is fraying the sheath around the nerve causing the nerve to fire repeatedly even though the brain is not sending a signal. It also short-circuits the nerve. One of the tests today demonstrated that an electrical signal applied directly to a muscle near her mouth also caused the muscle near her eye to spasm even though there is no link between the two because it was jumping across the nerve at the point of impingement. The stimulation was through needles, which you can see from the photo she enjoyed.
I will take Susan in at 5:30am tomorrow and the surgery will be at 8am. The surgery will be approximately 2 hours plus post-op, so you may not see this until after the surgery has started.
I will update you all on how it goes after the surgery.
Marty
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