ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: sweetpea on February 09, 2009, 11:16:12 am
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Hi Everyone,
I've been a lurker since my boyfriend was diagnosed right at Christmas time. He has a 3.1cm tumor on his right side. After visiting with several neurosurgeons here in the Dallas and Houston area, he has elected to have surgery at the House Clinic on Feb 12 with Dr Slattery and Dr Schwartz.
This forum has been a tremendous to help to us both. It's mind boggling to be going through this, but it's been reassuring to read posts from those who have already traveled this journey. Is there anything more I can do to reassure him that all will be okay? I honestly can't comprehen what he is going through and feeling, but just want him to know that he is in great hands.
We've been reading posts on what to bring to the hospital along with how he will be after the surgery. This has been such a great resource to us both along with how kind and supportive everyone here is.
Thanks for letting me talk. The reality of what is about to happen is finally sinking in.
Kate
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Hi Kate.
My thoughts and prayers are with you, your boyfriend and your families.
Please send an update when you can.
Sincerely,
Sue
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Kate;
I had translab on Jan 16th, 2009. My tumor was just a little smaller, it was on my right side. I was scared of what I would be like after surgery. My surgery was done by Dr. kartush at Michigan Ear Institue, my other recommendation (from a friend who is an ear, nose and throat Doctor.) was House, so feel confident in your boyfriend's selection.
My recommendation would be to try and get him back to normal in the hospital asap, meaning comfortable clothes that he likes to wear, versus that stuff they give you at the hospital, that made me feel like myself. Take capstick, my lips got very dry. Also, I set goals for myself which most wrote off as unoptainable, except for me (ie; return to work by "x' date, walk outside by 'x' date, etc). I told myself I'd be out of the hospital in three days, and I was!
I was very lucky, my surgery was about six hours with excellent results; No facial or eye issues, no headaches. Of course my earing is lost, but honestly, it's not that big of a deal, so long as my good ear remains that way! I went back to work (desk job) after two and a half weeks, drove in two weeks and was bored at home after two weeks. There is fatique, but nothing horrible. This past Friday, I went downhill skiing, three weeks to the day from my surgery-granted that's my sport and I've been doing it since I was eight (now 39 years old), but just to be out there with out any real problems, my Doctor friend and I ski together, he couldn't believe it either!
My point being is everyone is different, he has a great doctor, just go into this with a positive outlook, and with a little luck in surgery things won't be so bad. He'll do great! Any questions contact me.
Bryan
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Katie,
Welcome out of the "lurker" status.. I can certainly appreciate the fears that you and he are probably experiencing. I had a retrosigmoid surgery about 1 month after diagnosis for a 3cm AN. All of that sound familar? If it's helpful, read my blog (address below). It takes you through the entire journey from my perspective from just before diagnosis until now. The road can be smooth or it can be bumpy, but my account is based purely through my eyes. Hopefully it will bring comfort to each of you that with time, things will be okay. Now, 9 months later, I am back to an active lifestye again.. I work, drive, camp, etc.. Aside from my bada$$ scar that I like to show off with my short haircut, you'd never know what I went through..
Welcome to the forum.. Lean on the rest of us who've been there when you need it.. Ask questions, etc.. Overall, be assured that all will be okay. It may just take some time to get to that point.
Regards,
Brian
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Hi Kate~
I am also from Texas - I had surgery in Houston 13 years ago when I was 25 - there was no Forum, nothing like this sharing of information so I didn't know about House then. I guess some would say I had some bumps in the road, but I think I have a great life now. If you would like to chat (either on the internet or phone) just PM me!! You can see my blog (address below) and see that I have a VERY happy, active life 13 years later!!
K
PS Did you put the date on the calendar??
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Hi, Kate! Glad you posted! I had surgery (translab) at House/St. Vincents 3 months ago. You guys will be very pleased with the care you receive out there. If either of you have any questions about what to expect while in LA, feel free to PM me...or ask here. I, or any one of the numerous House patients here, will be glad to help.
Best of luck - please keep us updated when you can,
Cindy
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Hi, Kate,
I had the translab procedure at House in January 2008. Your boyfriend will be in wonderful hands and I think you'll both be quite happy with the attention, care, and compassion he'll receive. It was an amazing experience from start to finish, and while this is not something that anyone would wish to go through, you're going through it in excellent surroundings. Best wishes as his surgery date approaches.
Catherine (JerseyGirl 2)
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Hello Kate - and welcome. Thanks for posting. I'm glad we were able to (unconsciously) coax you out of your lurker position, which could get uncomfortable, after awhile. :D Seriously, I'm pleased to learn that the forums have been helpful to you and your boyfriend and I trust they'll continue to be useful as he approaches his surgery date on Thursday (2/12/09).
As you know, the House Ear Clinic is renowned for their AN-removal expertise. Although no doctor can absolutely guarantee a perfect outcome to delicate AN removal surgery, your boyfriend is certainly in experienced hands. That being the case, his reading about other AN surgical patient's positive outcomes is probably the best way to reassure him. I'm one of those success stories.
I underwent both surgery (retrosigmoid approach) as well as (planned) follow-up radiation (FSR) and enjoyed a rapid, full recovery with only SSD as a residual. For what it's worth, I was 63 years old at the time. In good health, yes, but no athlete or even especially health-conscious - and I did fine. Of course I had a highly experienced neurosurgeon, just as your boyfriend does. Lots of prayers for me, too.
Granted, your boyfriend has to be realistic and understand that, yes, he could have some post-surgical complications but most are temporary or correctable. Frankly, until that happens, and we'll pray it won't, he needs to try to put aside his useless and unproductive fears, not focus on 'what if' and keep a positive attitude. Well, it worked for me. :)
Jim
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Hi Kate and welcome,
Although the AN experience can be a scary one, I'm sure your boyfriend will be in good hands on the 12th. Many of our group have had surgery at HEI and say the docs and staff there are wonderful. Please keep us posted on your boyfriend's progress.
Sending good vibes to both of you,
Wendy
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Hi, Katie -
best of luck to your boyfriend on the 12th.
Please let us know how his surgery and recovery turn out.
Jan
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Kate:
Glad you decided to stop lurking and join in. I to was a lurker. There is so much love and support on this site. I will keep your boyfriend in my prayers. I have translab surgery on February 18th at HEI. Maybe i'll see you and your boyfriend. I am sure he will be walking arond by then and doing great.
blevitt: Your story is truely amazing. I love hearing such great comeback stories. It's awesome how well you are doing. Keep up the good work but don't push too hard. You really have given me high hopes of getting to the other side without facial paralysis. Thanks for sharing.
Sonja
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Thank you, everyone for your kind words and reassurance! I will keep y'all updated on the surgery.
Sonja- I am sure we will see you at some point. Best wishes with your surgery!
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Hi y'all:
Well so far so good. Matt came out of surgery yesterday evening after 9 long hours. The tumor was rather large...a little bit smaller than a tennis ball. And it was harder than they had anticipated. They had to leave a little behind, to preserve the facial nerve. But the nerve was responding to just a mininal testing. So that was exciting to hear. His smile was great last night when I went in to visit with him. He wasn't in much pain, just his elbows were hurting from being so stiff the entire time.
I am on my way to see him for a little and then grab some breakfast. These past two days have been the most exhausting days of my life, but behing here for him has meant the world. I will be glad when he will have his own room.
We are more than likely staying here at the Marriott downtown once he gets out. We stayed here before the surgery, and he is wanting to stay here afterwards. So I am waiting to see when he will be released before I make any bookings.
The surgeons, nurses and staff here have been absolutely wonderful. They updated us periodically throughout the surgery and Dr Slattery came out when it was over to give us the details along with his anestigologist. Matt's mom gave each of them a hug! They were just so nice.
Anyway, I will be on my way here shortly to go see him. Thank you all for your thoughts and prayers!
Kate
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Kate,
I'm so happy to hear the good news about Matt. I'm really glad that he's doing so well considering his tumor was large. He really is in very good hands with the House/St. Vincent's team. And I'm sure the Marriott will be a great place for Matt to recover - especially with the room service!
Thanks for the update!
Nancy L
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Kate:
Congratulations to your boyfriend, Matt, on his successful AN removal surgery. Kudos to you, too, on your concern and caring for him as you stayed close to him through the entire ordeal. Please try to stay in touch so we'll know how Matt is progressing.
Jim
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Kate,
Great news about Matt! Thanks for the update! As Steve likes to say, the first 3 days don't count.. There will be lots of rest in both your futures. Give him our best. You're definitely in good hands at House. Keep us updated on his progress.
Regards,
Brian
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Matt came out of icu last night. He had a rough night... Didn't feel well, irritated, restless, couldn't sleep. He isn't the same person as normal. I understand how major of surgery he had Friday. Is it normal to be this restless and sorta mean? He has been the same today. They finally gave him ambien to get him to sleep.
He is eating really well and able to get up and use the restroom to pee.
I know it's been almost 48 hours. I am hoping by the next 24 hours he will feel better. He is hating life right now and I am clueless with how to help.
Any thoughts?
Thanks again. Yall are a big help.
Kate
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Hi Kate,
It is not unusual for surgery patients to be grumpy as they recover. Sometimes it can last for several weeks. They may seem ungrateful for all the attention and care they are receiving, but it passes. It may be due to all the anesthesia and drugs, or due to a feeling of being powerless to "fix" everything right away. If he is doing well physically, just put up with Matt's mood. He will show his appreciation for you soon enough. Just not on Valentine's Day. :)
Steve
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Hi Kate,
The first few days, at least, are very rough and many patients can to be rather grumpy. I sometimes had awful headaches for the first couple of weeks and it can (short term) bring out the worst in some of us. He needs to be patient with himself in his recovery and your patience is the best gift you can give him right now --- hopefully things will get better for everyone soon.
Best wishes,
Wendy
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Kate -
grumpiness can be part of the post op routine. There are lots of reasons for it. From personal experience, here are just a few.
You're totally out of your element - AN surgery is MAJOR surgery and as much as the doctor has stressed this pre op, hearing about it just isn't the same as experiencing it firsthand.
You are in the hospital which means that it's hard to get to sleep because you can't get comfortable and it's hard to stay asleep because medical personnel wake you up at all hours to make sure you are okay.
The fatigue is incredible - much more consuming than I expected - and it seems like even the smallest tasks requires a nap.
I also found it extremely frustrating that while I was willing to do things I normally did, physically I just couldn't. It takes time - and lots of patience - to get back to normal. And oftentimes normal is now different due to balance issues, hearing issues, etc.
It's a great sign that your boyfriend is eating well - especially since hospital food usually isn't the greatest - and it's another great sign that he's getting up to use the bathroom. These may seem like small milestones, but they are actually quite huge in the scope of things.
I think a lot of his grumpiness will leave him when he's discharged from the hospital, but it may resurface as he tries to reach more recovery milestones.
Give him our best - and try to find some time to get some rest yourself. It will help you deal with his grumpiness and you'll be less apt to become grumpy yourself.
Jan
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Kate:
I'm sorry that Matt is having a bit of a rough time and that he is transmitting that to you with his newly-grumpy persona. According to my wife, I was the same way, post-op. In fact, she's confided to me that at one point, she asked the neurosurgeon if the fact that he moved my brainstem ("just a tiny bit") could be a factor in my grumpy, hyper-impatient demeanor. He said "maybe". Fortunately (for my marriage), my grumpy attitude eventually faded and my usual charming personality asserted itself, once again. ;)
Jan ('leapyrtwins') hit on many of the probable causes for Matt's newly-grumpy behavior. The fatigue, the total disruption of his normal routine, the inconvenience of being hospitalized and tolerating the many indignities and unwanted intrusions on your sleep and the loss of control can bring out the worst in us. It did for me, and I'm usually the epitome of sweet reasonableness. O.K., maybe that's a slight exaggeration, but although by nature an impatient person, immediately post-op (with an excellent outcome, too) I was definitely rivaling Oscar The Grouch for being misanthropic. As I've noted, that passed (it took quite a few weeks, in my case) and I trust it will pass, even sooner, for Matt. :)
Jim
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I can only echo much of what has been posted here. I know I was difficult to say the least for a while. One of the key features being that anything effort simply exhausted me, I took more naps in the first 90 days then anytime in my life. I was 3-4 months before naps and my usual awake/bedtimes were restored. I can also say that it does change you somewhat, plus dealing with other issues such as balance and SSD, all effect your disposition.
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Two days in ICU at St Vincents made me grumpy too. I really wanted to get out of there.
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Hi y'all:
Sorry for the delay in posting. Matt was discharged last Monday only to have a small setback of a cerebral spinal fluid leak that put him back into surgery last Wednesday. He got discharged again this past Saturday and is doing much better. His moods are better now that he is not on the steroids nor pain meds. With having to fix the leak, they went back into his ear to fill the whole and also had to take more fat out of his ab area. Both incisions hurt worst than the original surgery. He gets his stitches removed tomorrow (Friday) which allows us to fly home to Dallas on Saturday. YAY! This has been a short, but somehow long journey these past few weeks.
His energy is actually fairly good. We made our way down to Long Beach for a few days to get out of the LA scene. Too many cars honking at my Dallas driving. The scenery here is awesome. He doesn't have as much pain anymore, but he is curious about his "out of it" feeling. He had it before the surgery, but now it's about 10x's worse, he says. Like a 'high' type feeling. Did any of y'all experience this? And how long did it last?
Thanks again for y'all's support and comments. It makes his feeings and my feelings more normal!
kate
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Hi, Kate - and thanks for the update on Matt.
I'm pleased to learn that things are improving and Matt is now out of the hospital and recovering. Although the Los Angeles area has it's charms (I lived there for 2 years, decades ago), I'm sure both you and Matt will be happy to return home to Dallas. Those CSF leaks are notoriously common and while the incisions in Matt's abdomen must have been uncomfortable, with the stitches out, he'll heal and, one hopes, this will all fade into a rapidly-retreating memory before long.
The 'out of it' feeling is common, post-op. I had it, too, and I had a complication-free surgery. I think it's a combination of anesthesia 'hangover', being in bed (inactivity) for days and, of course, the fact that our skull was opened up, (sometimes) our cerebellum moved (mine was) and the overall disassociation from normal life that being hospitalized and anesthetized can induce. My best advice, based on my experience, is that this will pass. Matt will need rest (lots of naps) but he should try to be as active, within reason, as possible. This will help re-acclimate him to normalcy, as long as he doesn't get too impatient and overdo it. I'm sure you'll be a big help to him, but don't try to 'mother' him as he 'll likely resent that. My loving wife was just a bit too solicitous when I came home from the hospital, following my surgery. Frankly, I was anxious to get back to my normal life and resented - what I wrongly considered - her 'over-attentiveness'. Fortunately, I was able to return to normalcy fairly quickly and within a few months, my usual sanguine disposition returned. We're still married. :) I think that you and Matt will also get through this just fine.
Jim
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Thanks, y'all. He's still having issues with a leak from his incision. He is at UT Southwestern meeting with a surgeon (who actually did his fellowship at House) right now because his incision started leaking. Friday he had his stitches removed, a leak was discovered that night and back to hospital Saturday morning. And now this a few days later.
I hope they can get this leak under control without another surgery. I feel bad for him!
He is pretty active and while he likes me to do things for him, he is doing a lot of things himself, within reason. He's not lifting/pushing anything. He just hates the idea of sitting around now doing much.
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Hi, Kate:
Please accept our appreciation for your updates on Matt. We can all sympathize with your boyfriend going through the hassle of an incision leak and share your hope that this latest bump in the road to his recovery will be easily surmounted and Matt can continue to heal and recover. I can understand his aversion to 'sitting around'. I'm a lot older than Matt but I hate that, too. I can only imagine how frustrating it would be for a young man. I'm sure your help and encouragement are providing solace for your guy. Keep it up - and keep looking ahead. This will pass. :)
Jim
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Hey Jim,
They admitted him last night and put in a lumbar drain in his spinal cord. He'll be in the hospital about a week now. I am hoping they can get this issue under control. I'd hate for him to have surgery again with a shunt installed.
Thanks for the encouragement! In the spectrum of things, this is a small bump, but it seems like a mountain right now. I feel for him.
Thanks!
Kate
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Kate,
Bummer about going back in for a lumbar drain.. You're right that this is but a temporary bump in the road. The drain should help relieve the pressure of CSF and allow where it's leaking to heal. You both are in our thoughts during this time. Keep strong. He'll get through this and so will you.
Regards,
Brian
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Hi kate...i will respond to your email later on today, ive been a busy bee this weekend...but i wanted to ask, how is Matt doing? Any news?