Because I sent out the blog URL to some people on my Christmas card list, I am updating it. For those that are just hearing the news about my brain surgery (and complications) I am sure you are thinking, WTF?!
I know, me too. Before the surgery, I thought it would be nothing. Not exactly a day a the spa, but I thought since I spent 9 months getting the absolute best surgeon in the world (not an exaggeration) for this procedure, I would be fine. It ended up not so fine. With all the complications, I really didn't have it in me to notify everyone afterwards what happened.
Anyway, how am I now? I am better but not great. My hearing on my right side has plateaued to "profoundly deaf". That means I can hear a jet engine if it's 1 centimeter from my ear but not much else. Once again, I am being extremely literal. That's what the hearing specialist said.
My balance/vertigo is improving. Even though I have no balance on my right side, the brain is plastic enough that with enough physical therapy, it will adjust so I am pretty functional. This means about 80% balance. I'm getting there but not there yet.
Now compared to other people of my advanced age-- I'm doing swell--- even if they didn't have botched brain surgery. (yes, it's botched-- by my definition if you are left deaf on one side and have no balance, are always feeling slightly nauseated, and do not have the same athletic ability, and this only happens when a nerve is completely damaged, it's botched. ) Everything is relative. Compared to the average person, I look/act/run fine. And you would never know anything was wrong unless you noticed I always have to turn my head so I can hear you on my left side. So most people think the surgery went great and I'm completely back to normal. But they are wrong. Compared to my old self-- it stinks. My hand eye coordination for tennis is not the same, running always leaves me woozy, and just walking in a straight line without a lot of thought is difficult. And forget ice skating. Plus, I have zero hearing depth perception. Everything sounds like it's on my left side and stereo sounds like a beat up AM transitor radio.
The main reason I seem to be physically normal is because I was at the top 1% and now I'm stuck in the middle. I'm saying this here because in person, it's just a pain in the butt to explain to everyone I meet that just because it's convenient for you to think I am 100%, I am functioning at a much lower level and I do not want to be told that I am wrong to say otherwise. Unless you lost your hearing, balance and hand/eye coordination, do not tell me that everything is fine.
That being said, I am ultimately glad that I got the surgery. The twitch in my eye was starting to affect my whole face and moving down my neck. I could never do more than a Mona Lisa smile in pictures and it was getting worse. I sometimes couldn't read my eye twitched so much.
My holiday message--- appreciate the health you do have.
Susan
Wednesday, December 24, 2008
Tuesday, July 29, 2008
Plateau, babies, binary systems
All-
So while I was thrilled to get some slight hearing (dial tones close up, loud music on one head phone)-- I was frustrated that I was not improving. Stuck on a plateau. I went to see Dr. Kassam and an Ear Nose Throat specialist (Dr. Hirsch). The news--- mostly likely: this is all I am going to get. Dr. Kassam thinks the nerve is dead. I said how is it dead if I can hear something? Isn't nerve working kinda like being pregnant? You either are or you aren't? I can't believe he started to discuss that there can be an in between for pregnancies. I cut him off before he started telling me about ectopic pregnancies or something else and got him back on topic. I asked, "Well, isn't it like the binary number system? You either are a ZERO or a ONE? He said basically yes-- and I seem to have a very low functioning nerve-- so there is hope it could make something of itself--- but that this would probably not happen.
Anyway, not great news.
My plans are to continue to get this fluid out of my head (I am now taking diuretics for this), a lot which is hanging around my right ear. And then to also start physical therapy with a PT who specializes in vertigo. Which I still have. Usually this is caused by a tramatized 8th nerve (not a dead one) I'm also going to see another ENT who can explain why I can hear a few things--- but the nerve is being treated as it's dead
Anyway, if this is the best it gets--- I'm still overall glad about the results. That being said, I'm going to be (very) cautiously optimistic and assume some of this fluid building on my right side is part of the reason my nerve is nervous and not at its healthy best.
I'll keep you posted on this crazy soap opera.
So while I was thrilled to get some slight hearing (dial tones close up, loud music on one head phone)-- I was frustrated that I was not improving. Stuck on a plateau. I went to see Dr. Kassam and an Ear Nose Throat specialist (Dr. Hirsch). The news--- mostly likely: this is all I am going to get. Dr. Kassam thinks the nerve is dead. I said how is it dead if I can hear something? Isn't nerve working kinda like being pregnant? You either are or you aren't? I can't believe he started to discuss that there can be an in between for pregnancies. I cut him off before he started telling me about ectopic pregnancies or something else and got him back on topic. I asked, "Well, isn't it like the binary number system? You either are a ZERO or a ONE? He said basically yes-- and I seem to have a very low functioning nerve-- so there is hope it could make something of itself--- but that this would probably not happen.
Anyway, not great news.
My plans are to continue to get this fluid out of my head (I am now taking diuretics for this), a lot which is hanging around my right ear. And then to also start physical therapy with a PT who specializes in vertigo. Which I still have. Usually this is caused by a tramatized 8th nerve (not a dead one) I'm also going to see another ENT who can explain why I can hear a few things--- but the nerve is being treated as it's dead
Anyway, if this is the best it gets--- I'm still overall glad about the results. That being said, I'm going to be (very) cautiously optimistic and assume some of this fluid building on my right side is part of the reason my nerve is nervous and not at its healthy best.
I'll keep you posted on this crazy soap opera.
Monday, July 14, 2008
All-
So due to technical difficulties, it took a while to get the CT scan results. And then due to timing difficulties, it took me a while to update. Good news is that the CT scan revealed nothing abnormal, just a bunch of fluid still in my head. My hearing is still about 10% and I continue to have vertigo but no more headaches.
I'm used to going at warp speed so this glacially slow improvement is frustrating. That being said, every day I am so glad that I have my smile back completely.
Susan
So due to technical difficulties, it took a while to get the CT scan results. And then due to timing difficulties, it took me a while to update. Good news is that the CT scan revealed nothing abnormal, just a bunch of fluid still in my head. My hearing is still about 10% and I continue to have vertigo but no more headaches.
I'm used to going at warp speed so this glacially slow improvement is frustrating. That being said, every day I am so glad that I have my smile back completely.
Susan
Tuesday, July 8, 2008
Feeling much better/quasi scan results
On a scale of 1-10--- 10 being the worst--my headache over the weekend/monday was an 11 (said with a mock British accent, like in the movie Spinal Tap.) Anyway, this morning it was much better--- about 6. And after a slightly higher than recommended dosage of Excedrin, plus a Coke and a bowl of cereal-- it was a 3, so I felt good enough to go into work around 11 am.
It was nice to be back at the office and I got a ton of stuff done. I discovered you can blow off any meeting or phone call simply by saying, "I'm recovering from brain surgery, I can't make it." I've been talking regularly to someone who also went thru this (we met thru a website on this surgery) and she said she had this done over a year ago and continues to use the excuse.
As for the results. The CT scan place puts them online so doctors can see them. Guess who decided to update their servers this morning so no one can see them? Anyway, normally, I'd go nuts over this but I didn't because 1. I'm not supposed to do anything to raise my blood pressure. 2 Since nothing is coming out of my nose/ears/incision-- I know this isn't a spinal fluid leak causing the problem. 3. I'm feeling much better and have been working on my own pain relief cocktail that involves Coca-cola (the cure to everything) that is helping.
Before people lecture me about drugs, let me say that I was told to take caffeine to reduce my headaches. And, despite being offered prescriptions for percacet (sp?), codeine, and other drugs that could get me boocoo bucks on the streets of Baltimore, I can't take any of those. You see, besides the nice legs that I inherited from my mother, I also inherited her tendency to get nauseated by taking any pain relief stronger than aspirin. And I have had enough barfing for more than one lifetime.
Will keep you posted on what the surgeon says about the CT scan results.
It was nice to be back at the office and I got a ton of stuff done. I discovered you can blow off any meeting or phone call simply by saying, "I'm recovering from brain surgery, I can't make it." I've been talking regularly to someone who also went thru this (we met thru a website on this surgery) and she said she had this done over a year ago and continues to use the excuse.
As for the results. The CT scan place puts them online so doctors can see them. Guess who decided to update their servers this morning so no one can see them? Anyway, normally, I'd go nuts over this but I didn't because 1. I'm not supposed to do anything to raise my blood pressure. 2 Since nothing is coming out of my nose/ears/incision-- I know this isn't a spinal fluid leak causing the problem. 3. I'm feeling much better and have been working on my own pain relief cocktail that involves Coca-cola (the cure to everything) that is helping.
Before people lecture me about drugs, let me say that I was told to take caffeine to reduce my headaches. And, despite being offered prescriptions for percacet (sp?), codeine, and other drugs that could get me boocoo bucks on the streets of Baltimore, I can't take any of those. You see, besides the nice legs that I inherited from my mother, I also inherited her tendency to get nauseated by taking any pain relief stronger than aspirin. And I have had enough barfing for more than one lifetime.
Will keep you posted on what the surgeon says about the CT scan results.
Monday, July 7, 2008
Slight setback
For those of you still reading the surgery saga, I had a bit of a setback this weekend. After non-stop improvement including more hearing in my ear, I suddenly got the worst headache. Just moving my eyeballs made my head feel like it was exploding. While headaches are common right after brain surgery, it was disturbing for me because I had no headaches at all for 3 weeks. In fact, I've never had a headache in my life up until now. (and was a bit ticked this ruined a perfect record). So I contacted my surgeon who I figured would say it's normal. Instead, he said it's not normal at all and instructed me to immediately get a CT scan. Ack.
So Marty took me in and then it at first seemed to be a mini deja vu all over again from my last hospital visit. They asked me if I was allergic to seafood. I said I get violently ill from scallops due to the high iodine content. Then they explained--- well, we're injecting you with an iodine dye solution. Nice? I asked for a barf can. They explained they ionized the iodine so it shouldn't cause the barf effect. Then, in front of Marty, they told me to sign a release form explaining that this dye could cause many additional side effects aside from just nausea including a heart attack. As he stewed in the waiting room he almost busted in the door and said-- Stop, it's not worth it.
Fortunately, I did not barf or have a heart attack. I'm waiting for my surgeon or his partner to explain the results. The good news, while my headaches are still horrible, they are better than before.
Hopefully, this soap opera ends soon.
Susan
So Marty took me in and then it at first seemed to be a mini deja vu all over again from my last hospital visit. They asked me if I was allergic to seafood. I said I get violently ill from scallops due to the high iodine content. Then they explained--- well, we're injecting you with an iodine dye solution. Nice? I asked for a barf can. They explained they ionized the iodine so it shouldn't cause the barf effect. Then, in front of Marty, they told me to sign a release form explaining that this dye could cause many additional side effects aside from just nausea including a heart attack. As he stewed in the waiting room he almost busted in the door and said-- Stop, it's not worth it.
Fortunately, I did not barf or have a heart attack. I'm waiting for my surgeon or his partner to explain the results. The good news, while my headaches are still horrible, they are better than before.
Hopefully, this soap opera ends soon.
Susan
Monday, June 30, 2008
Dial Tones, Earth Wind and Fire
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
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
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
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