ANA Discussion Forum
General Category => AN Issues => Topic started by: NL on August 11, 2008, 06:01:01 pm
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Hello All,
I have been wanting to get on the forum and post since I got home Sunday from my retro at House/St. Vincent's on Wednesday, August 6th, but I have not yet refined the post-op skill of timing activities between nap attacks. (Though I knew to expect it thanks to the forum!)
I just want to say thank you to everyone for prayers, good thougths, and support! I also want to say thank you everyone who has ever written ANYTHING on this forum...the wealth of knowledge available by people sharing their research and experiences is amazing, and is what has led me to all the right decisions (and doctors) since my diagnosis in October 2007.
I went into surgery feeling so relaxed and confident in my choice, and with great relief at finally "handing over" this burden I'd been carrying to my trusted doctors. Someone asked as me as I was being moved from the pre-op waiting area up to the OR floor if I had been given any drugs to calm me down like valium. I hadn't, I just felt such a calm, serene sense of being at the right place at the right time. (Which I would not have felt had I done the surgery when I discovered the tumor!)
After a 4 1/2 hour retrosigmoid surgery to remove my approximately 2 cm tumor, I opened my eyes and immediately heard Dr. Stefan (the internist) tell me the tumor was out. I asked if I was already in ICU, which I was. Feeling my face move and not in any pain, I was actually elated at how good I felt. I found it hard to believe that the operation had already taken place (after all it seemed I had only closed my eyes for ten minutes), but I could see the clock on the wall and knew that it was over.
The anesthesiologist later told me that I had actually woken up a few minutes before my first recollection, and had been repeating, "Is it over? I can't believe it!" like a broken record.
Even through the first stretch of ICU, I remember thinking that the most bothersome thing was being uncomfortable because you are hooked up to so many gadgets, and INCREDIBLY thirsty! But thanks to those who'd been down this road, I knew soon there'd be ice chips on the way! Even though it seemed like an awfully long time before they arrived, I was aware that having them too soon causes severe nausea. And the only nausea I recall was about the same feeling as having a strong cup of coffee on an empty stomach, it wasn't bad at all. I wasn't dizzy and I could focus my eyes, and I was so thankful lying there that I had this mental "checklist" of items to go through and assess from all I learned on this forum.
I can honestly say that the only true surprises to this whole experience was that I did so well. And again, knowing all the possible reactions to surgery made me really appreciate how well I felt. When the physical therapist came by to walk me on Friday, he said I was fine and that I didn't need to see him again, just to keep walking with family members - I was surpised but very happily. I had learned from someone on the forum that doing balance exercises in the weeks prior to surgery had helped her - I did them right up until pre-op in my hospital gown. (And it was very liberating to feel that maybe for the first time in my life, I honestly did not care what anyone might think looking at me!)
Hearing wise, there is not much going on in the AN ear - I know that my hearing nerve was stretched fairly thin by the tumor, even though the nerve is intact. But maybe things will improve with time - and if not, I am so happy with my results that at the moment I really don't care. I know (thanks again forum members) of great experiences with BAHA and Transear if I need them.
So for the time being I'm eating, sleeping, and watching the Olympics...life could be a whole lot worse.
Thanks so much to David and Kathleen (six days after her translab!) for spending time with me the day before my surgery and your wonderful reassurances - I took them with me on Wednesday. Thanks also to Lainie and Jean for your great support. And of course, thanks to my wonderful and talented surgical team of Dr. Rick Friedman and Dr. Marc Schwartz.
Congratulations also to Sue L on her successful retro on the morning of 8/6!
This is a wonderful group, and I'll stay in touch.
All the best,
Nancy L
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Congratulations Nancy L.-- you sound great! Heal well.
All best,
Marci
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Congartz Nancy,
My tumor is also 2cm, Is good to hear that your fighting journey is finaly over ( at least almost over).....For myself.I am still in a super worring stage, I don't know where to go for surgery, haven't decided who will be my doctor, and i am even worrying about the cost of the treatment........I wish things will get better and better....
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Hi Nancy,
It sounds like you also had a wonderful surgical outcome -- I am so happy for you! My surgery was a few days before yours but at Mt. Sinai in NYC. I am very grateful to my doctors who obviously did a wonderful job. My hearing in my AN ear couldn't be saved and was basically gone before my surgery but I have had a great outcome in every other way too. I plan to have the surgery for BAHA as soon as possible and look forward to being able to hear well again. I wish you an uneventful and quick recovery. Remember to listen to your body, it will tell you what you need to do. For now, rest and let yourself be pampered/
Wishing you all good things,
Wendy
Hi Bunny.
Welcome to this forum. I'm sorry to know that the fact that you have an AN is what brought you here, but you came to the right place. We are all here to help and support one another and I'm sure you will find this forum a wonderful source of information and comfort. If I can help in any way, plese PM me.
Wendy
P.S. Mamcy - Sorry for the hijack
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Welcome back, postie Nancy. Sounds like you did great. Now take some more naps.
Steve
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Nancy,
Great to see you back! Wellness wishes and a speedy recovery to you! Onward and upward!
Phyl
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Hi, Nancy:
Your post makes my day! I'm so pleased that you're willing and able to get on the computer and post here. :)
Frankly, with only a few minor differences, your surgery experience mirrors mine. Successful - with no real complications, a relatively brief hospital stay and so on. I'm also glad to learn that this site/forums were such a great help to you.
Enjoy the rest - and the Olympics. Isn't Michael Phelps awesome? The Men's Gymnastic team also were amazing, all things considered.
Have a smooth and rapid recovery, Nancy. :)
Jim
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So glad to hear from you and that everything went so well!
Get your rest - it's great that you have the Olympics to watch in your recovery time.
Stay in touch to let us know that you are continuing to do well,
Cindy
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bravo Nancy L,
you did it!! your post sounds like the whole process was a fairy tale with a happy ending! :D
now is time for full recovery - slow and smooth!
Best,
Hrissy
P.S. what is your favorite team on the Olympics?
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Nancy L
Glad you're home and resting. This forum is amazing! It also helped prepare me for the many risks and possible outcomes post-surgery. It helps give the healing process a good jump-start.
I look forward to updates on your progress.
Syl
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Awesome, Nancy. Just awesome. I am so glad we could all be there for you (that's what this is all about) and I am so glad things turned out the way they did. And it was a thrill for me to meet you and Kathleen. I've never met any ANers before. BTW, I don't know if you heard, Kathleen was sent home the next day -- didn't even have to do an R&R in Dana Point. Ill write to you soon. Enjoy the Olympics -- I sure am.
David
PS Please do thank Greg for the call.
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Nancy-
I've been away for a couple of days, so was thrilled to see your post when I got home this evening! It is SO good to hear of all the successful surgeries lately - makes me feel good just reading about it! I hope that your recovery continues to go smoothly and that you feel better with each day that passes.
hugs and warmest wishes,
Debbi
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Hi Everyone,
Thanks for all your replies and warm wishes.
It feels great to be able to participate in this forum as a "postie." I spent so much of the last 8 months or so obsessed with reading, researching, and basically wearing out the search function - and I can now appreciate the forum in a whole, new (and relaxed) way. Having people to share the experience of recovery with is such a blessing. So here's a quick update.
I always appreciated the concept of mind over body, but I'm realizing my body seems to have the final say right now. The first few days at home were fairly uneventful. I even managed to take a slow walk to the end of the block with Greg ready to go for the car if I needed a ride back.
Then yesterday I became completely humbled by the power of fatigue. I had a very short "to-do" list of making 2 calls and sending 2 emails - I never made it that far. My cousin came by to visit for a couple of hours, and though all we did was talk, when he left I had to go to bed for the rest of the day.
So I'll continue to comply with my body's demands, but just wanted to check in and say hello and thanks.
Nancy L
Bunny - You've found a good place to begin your AN journey with people who will be here to help you through. If you haven't already contacted the Acoustic Neuroma Association for their patient info packets, that's also a great place to start.
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Hi Nancy-
Oh how well I remember those first few encounters with fatigue! I remember thinking before surgery - how bad can it be? And then I got to experience it! I am happy to tell you, though, that it does get better. In the meantime, take lots of naps and don't try to be a hero - when you're tired, just say so and go to right to bed! ;D
Hugs,
Debbi
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Visiting with people can be exhausting. I don't know why just sitting around talking takes so much energy but it does. I have my husband on the 20 minute plan. After 20 minutes he tells people that they have to leave so I can nap! Nancy, it's great that you were already out for a walk. Keep it up and be good to yourself.
Marci
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Marci - that's so funny! We did the same thing. I had Mom and Dad with me for about 4 weeks after surgery and between them and Willie, they made sure my visitors left in fairly short order! I found personal visits much more taxing that phone conversations - not really sure why.
Debbi
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Nancy
I am so very happy for you and so very glad you are at home on to the next phase of recovery. It sounds like everything went according to plan and could not have been any better for you. I was anxiously following the immediate posts and was always relieved to hear good news. Now it is even better to hear directly from you!
Like you, I found that how prepared I was before the surgery was a huge part of my mental strength and success. I owe that to all of those who went before me, shared their stories and prepared me for what everything would be like. It made me happy to meet with you and David the day before your surgery in Los Angeles so you could "see" what a 6 day postie looked like. It was fun, and as you saw with me, I just hit the wall and needed to go lay down at Seton Hall.
I continue to just listen to my body and recharge. I take daily walks with family and friends to increase my strength and relax my mind. I lay around and read, relax and do puzzles. I am not going back to work until early September so I can enjoy the last dog days of summer with my three children. Enjoy your recovery and let us know how the hearing resolves. I will definitely do the BAHA down the road because the "test" I did at House was great and when the audiologist turned off the device, I felt like she took something from me.
Rest, relax and recover. All the best,
Kathleen
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Hi All,
I'm back to check in and say hello.
Debbi & Marci - thanks for the reassurances that I'm not the only one who needs a nap after people come over. Even if I'm feeling 100% when they're here, as soon as they're out the door, the fatigue hits! Good to know it will get better, too.
Kathleen - so good to hear that you're doing well and listening to your body. And I'm so glad you're going to get the extra time to spend with your children, too!
I really want to keep up with my posting for a couple of reasons. First, I felt like I went into my surgery with such a "gift of knowledge" from this forum that I want in any way I can to pay it back. And secondly, I know that however insignificant any aspect of my recovery may seem to me, it may be useful knowlegde to someone else.
I've also been anxious to get on and post in the last week because I remember myself always awaiting updates to see how people were doing after any kind of treatment. I remember making my own mental list of post-treatment issues that would come up, and questioning myself as to how I would feel and deal with each of them should the same apply to me. It was all very helpful, but the story that comes to mind this week is the "kitchen floor nap."
Someone posted that he had gone to make a sandwich and was hit by an overpowering wave of post-op fatigue. It was so intense that all he could do was lay down on the kitchen floor before he feel fast asleep. Recalling that story made me feel completely normal last week as I sat down and curled up on the hallway carpet - on my way to some destination that was just too far away!
My energy level really came up a notch one week after surgery. I remember waking up with a feeling of renewal that I was already at the one-week mark, and felt energized enough to make my own breakfast for the first time. That in turn, gave me the psychological boost of not having to be as dependent on others. (I really found it a difficult transition from being "cared for" in the hospital, to having to ask my already tired out loved ones for help at home.)
I'm also sure the post-op steroids made it harder to listen to my body, making me think I had more energy when I was up and around. Unlike "normal" life, when one's body has a clue that energy reserves are low - the post-op bursts of energy were almost always followed by an unannounced and abrupt crash...or "kitchen floor nap."
But I really do feel better everyday - just like you all said I would. :) Today is my 11th day post-op, and I felt so good this morning that I went for a walk around the neighborhood by myself (though with the cell phone in case I had to call for a ride back!). I've learned to pace myself with naps throughout the day before I'm on the floor. (And I'm learning to tell all those well-meaning visitors to give a call back next week.)
I did go back last Friday to have the stitches taken out, but since I still have some swelling at the bottom of the incision, the doctor (not my regular doc, who was on vacation) decided it would be OK to leave them in a few more days. I was a little worried about them getting healed into the skin, but he said they're nylon and should slip right out. By the time I go back to my doc on Wendesday to have them out, it will have been 2 weeks since surgery. Just wondering if anyone else has had their stitches in that long and how they came out.
The soreness in my neck muscles has gone away, and I can sleep comfortably. I can turn my head almost completely to both sides, though it still feels a little tight, but that's expected with the retro.
I think I have very diminished hearing on the AN side, but it's hard to tell at this point. (I can't hear a dial tone, but seem to hear the tones from pressing the buttons.) But I'm hopeful to hear of some who've had hearing return after retro, so we'll see.
And now I think I'm really ready for my next nap.
Take care , everyone,
Nancy
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Just wondering if anyone else has had their stitches in that long and how they came out.
Nancy - I didn't have them in a long time, but the swelling near the bottom is just now about gone (3 months post op!). I was on a diruretic to bring it down some until I had an allergic reaction to it (that landed me in the hospital for a spinal tap and 4 days in the hospital). But, except near the very begining (and when I had the reaction), I never had any symtoms along with it. My doctor wasn't too concerned unless a) I had more symtoms or b) started leaking elsewhere too. He told me it was probably CSF trapped under the skin and wouldl probably clear up soon. Little did I know it would take about 3 months, but it's almost gone.
Stitches were removed in the office by the neurotologist. I think he just cut and pulled them out. It was painless (except the one that got stuck a little). I would expect the same even if you leave them in there a little longer. Truth be told, I think mine should have stayed a little longer. I didn't get the swelling until after they were out.
I'm glad you're doing well. Take your time and frequent naps. I remember the days of sleeping almost all day (it seemed) as well as at night. Aww...those were the days. ;)
Brian
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Hi Nancy,
You sound so good, and right on target. I think you're pretty brave to walk by yourself; I can't quite get myself to do that, but I'm working on it. Strange that I feel strong enough to run a little while I walk but emotionally still need the company. I love the "kitchen floor nap" story!
At almost 4 weeks I'm starting to feel like myself but today is definitely a bad day--woke up with a headache (on both sides) no energy, etc. I think I pushed too hard over the weekend and am paying for it now. It was, however, worth it. ;D
My stitches came out after one week but the incision is still pretty swollen. I am massaging it daily and using scar butter but didn't start that until week two, when the doctor gave me the go ahead.
All best,
Marci
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Nancy,
You seem to be coming along really well. You're already walking by yourself and the soreness on your neck muscles has gone away. That's something I'm still dealing with 2 months post-op. The headaches, which stem from the neck, aren't so bad and I dont get them as often anymore. So I'm hoping that since your neck muscles are healing, you don't have so much trouble with headaches.
Take care,
Syl
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Nancy:
Thanks for your consideration in posting your informative and encouraging update. I enjoyed reading of your steady progress. I agree with everyone before me that has stated how well you seem to be doing in your recovery. Walking outside is great 'therapy'. I did a lot of it, post-op, as a way of regaining my balance - and it worked! Pacing yourself is critical and i didn't always do so but I strongly advise newly post-op AN patients to do so and heed what their body is trying to tell them (slow down!) :)
Looking forward to reading more on your steady progress toward full recovery and normalcy, Nancy.
Jim
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Nancy,
Very glad you are posting already! What a successful outcome you've had! Congratulations to your surgeon's and nurses who did their very best for you. I remember the fatigue all to well and was in awe of what the brain does. We do so little, but are fatigued so much! Happy recovery to you! Walk, walk, and turn your head too while doing this (with help at first).
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Hi All,
I'm back with a little update.
Brian & Marci - Thanks for the info on the stitches/incision. My swelling went down the day after I posted and the stitches were removed last Tuesday. It felt great, like an itch that I've had finally being scratched!
I did have one bad day that set me back just a little, but it was a learning experience and will better prepare me for the rest of my recovery. I do fully appreciate the fact that I am having a very easy and smooth recovery, and that a "bad" day for me doesn't even compare to what many have to deal with on a daily basis. But as I've mentioned in other posts, I received so much information by following other people's recoveries that I really feel compelled to share any information that someone else may benefit from down the line. In my case, one "not so great" 24 hour period taught me:
1. Even though I'm feeling good, I have to be careful not to let myself do too much of anything...even reading.
2. That my post-op body may not respond in the same way to my pre-op meds - in my case Maxalt for migraines.
3. The importance of a great medical team and of keeping them informed of any questionable post-op issues.
That's the "Reader's Digest" version. If you're interested in more details, here's what happened:
I felt good on Monday, and spent the day reading, watching TV, on the computer a little, and napping. In the early evening took a walk that was probably a little too long for how I was feeling, but I wanted to "make-up" for some missed walks. We ordered in "take-out" food for dinner, which in retrospect had a really high sodium content and may have also contributed to the killer migraine that was on its way.
I felt the headache coming on as I went to bed and took some Tylenol. Woke up with more pain about 2 AM and took some Vicodin. Woke up with a full on migraine at 6 AM and took my "always reliable" Maxalt.
Let me just say that headaches were the one post-op issue that I was very concerned about, since I did have a history (though not in the months preceding surgery) of migraines. I'd really been paying attention to how my head felt, and up until this point had absolutely no post-op headache, nausea, dizziness or balance issues.
By 7 AM my "always reliable" Maxalt had done nothing for the pain - this was the first time ever that it did not work for me! As migraine sufferers know, once the pain gets to a certain point, there's almost no way to avoid the nausea and vomiting. By 8 AM I was throwing up with such force (sorry for the graphic image!) that I was afraid of doing harm to my nicely healing head. I checked in with my internist (Dr. Stefan) and he said to let him know if it kept up. I even tried another Maxalt but couldn't keep anything down. By 2 PM it had happened repeatedly, and the doc said to have someone bring me in to his office.
He did a quick neurological test and said everything looked good, but wanted me to go for a CT scan to be sure. He noticed that my stitches were still in (I was coming back the next day to have them removed) and called downstairs to Dr. Friedman to see if he could take them out while I was there. I went down to Dr. Friedman and he removed them, saying my incision was healing fine. When I expressed concern that this headache might be the first of many, he said he really felt that this was a one time thing and they wouldn't be a problem in the long run. (I'm hoping the same!)
I went back up to Dr. Stefan's with one brief stop in the restroom where I got sick again. Walking back into Dr. Stefan's empty waiting room, I told the receptionist I had just thrown up again and plopped into a chair. She repeated this to Dr. Stefan, and within 15 seconds he was sitting in the waiting room with me with his resident in tow. I have to say I have NEVER received that much atetntion from any medical professional in my life - I once again felt (as I had with my surgery) as though I had put myself in the right hands.
He still wanted to do the CT scan, but as it was 4 PM by now, he thought it would be a good idea to admit me to the hospital overnight for observation where they could do the CT and also give me IV meds for the headache, nausea, and dehydration. I'm normally never eager to go the the hospital, but I felt so miserable and unable to help myself that it sounded like a welcomed relief.
To take the edge of my splitting headache, he gave me a nasal spray application of Imitrex. I had read about this drug in the headache section of the forum, and was surprised at how fast and effectively it worked. It turns out Dr. Stefan is quite the expert on headache pain, and this drug will now replace Maxalt for me in my headache arsenal.
It was after 5 PM by the time I got checked in and taken up to the 6th floor, and I was surprised to see Dr. Stefan awaiting my arrival at the nurses station. He had stayed past his regular office hours to make sure I was settled in and pain/nausea-free before he left for the day. He let me know he'd be back first thing in the morning with my CT results and to make sure I was OK before releasing me. I can't express how much I appreciated having him on my medical team.
I had a restful and pain-free night and went home after lunch. When Dr. Stefan came to visit that morning, he told me the CT was normal. He must have spent at least twenty minutes explaining how different migraine meds (triptans) work in the brain to help pain. He also told me which over-the-counter meds would work on my kind of headaches, which ones would not (the one I was taking), and why. He also felt that what brought my headache on was the amount of time I was using my eyes and that I should spend more time resting them.
So when I felt a mild headache coming on last night while responding to emails, I took an Aleve (one of the OTC meds that does help) and was happy to have it stop the pain and not have to take anything else.
I'm now going to take the doctor's advice and get off the computer before my eyes get tired, but I just wanted to share this "learning experience" while it was fresh in my mind.
Wishing all the other posties speedy recoveries, and wishing everyone else a great day!
All the best,
Nancy
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Nancy,
Kudos to Dr. Stefan! I'm not at all surprised by his prompt and attentive response to your problems -- he and all the other House personnel are beyond amazing, and I will never forget the wonderful care I had there. Best wishes as you continue your recovery.
JerseyGirl2
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Nancy:
Thanks for the update. That was quite an experience and clearly none too pleasant but I'm glad it's all over now (but probably not as glad as you are). Your doctor (Stefen) was certainly responsive to your distress - I'm impressed. I think you know enough to slow down and 'take it easy' from this point on. The dreaded migraine headache incident aside, your recovery seems to be going relatively well. I hope it continues and I look forward to reading more about it in the days and weeks ahead. :)
Jim
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Hi Nancy
I am so sorry to hear you were going through all this. I haven't been checking posts much this week and I thought you were well on your way to a fast recovery. But you are absolutely right, Dr Stefan rocks. He is the most thorough internist I have ever had. And he knows his stuff. I feel that between Dr Stefan and Dr Roberts (opthamologist) I was nursed back as good as I can be at this point. They were two great guys.
I'll write soon. Hope you feel better.
David
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Hi Nancy,
Sorry to hear about your headache and overnite stay back at the hospital, but how great that you received such prompt and good care from your doctor! As a migraine sufferer also, I was quite interested to read about your experience. It is good to know that my "normal" migraine med may not do the trick on a post-treatment migraine. Thanks for sharing with us and I truly hope you will now be pain free.
Thanks again for your PM earlier this week! Take care and keep us posted,
Cindy
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HI Nancy-
So sorry to hear that you had a very rough day. Hopefully it will be the only one you have like that. You were very wise to stay in close touch with your doctors and extra kudos to Dr. S for his wonderful and caring attention. It's great to know that you are in excellent medical hands, isn't it? I think that most of us on the this forum feel that way about our treatement teams - and it is very reassuring!
Take it easy - you will be surprised at how much better you feel from week to week, but it is still a long recovery and you will thank yourself for listening to the messages your body tries to send you. A lesson I am still learning! :)
Be well, and get lots of rest.
Debbi
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Hi Nancy,
Sorry to hear about your awful experience with migranes. It sounds like you've been through he@#*. Your doctor sounds absolutely wonderful. It's great to hear there are so many truly caring physicians out there -- people like us need the kind of care that they provide. It makes the whole experience so much easier. In the past I've had doctors who have been good and some who have been not so good, but no has ever compared to my neurotologist and it sounds like your doctor is very much the same. I think we have been truly blessed to find them. Take care of yourself and rest often. I hope your headaches and migranes don't give you as much trouble in the future.
Wishing you a much smoother and speedy recovery,
Wendy
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Well okay then, now you are really a postie! ;)
Steve
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Hi Everyone,
Thanks so much for all of your replies and continued postive thoughts!
I'm happy to report that my recovery seems to be back on track. I really think the "bad day" I had last week was just that - one bad day. Maybe it was just my body letting me know it will now react differently to meds, or just clearly defining to me the limits of my activities!
I have to say that because I'd been doing so well, I was a little hestant to post the set-back. But once again, I felt that it's the combined value of ALL experiences, good and not so good, that makes this forum such an incomparable resource for all ANers. (Cindy - just knowing that I gave you a possible "heads-up" on your migraine med made it worth posting!)
Having my stitches removed after being in for almost 2 weeks made a world of difference! I realized that the "tightness" I felt in my neck at the bottom of the incision was from the stitches pulling tight where there had been a slight swelling (the reason they kept them in a little longer than usual). It wasn't painful, just tight. As soon as they were removed, I could roll my head around and turn my head from side to side freely - and it felt great.
I was also able to go back to the firmer and thinner "cervical neck pillow" that I always used pre-surgery. It's so much easier for me to sleep through the night when my head and neck feel properly "aligned." (Just a note to others prone to headaches - I started using this pillow about a year before surgery, and it completely stopped the "early-morning" headaches I used to get!)
The biggest boost I got was the "hair improvement." For two weeks I had to apply antibiotic ointment to the incision twice a day, so after shampooing I'd just tie up my extremely curly (unmanageable!) hair into a one-sided frizzy ponytail. Now I could lose that look and actually wash AND style my hair! I've finally started to look and feel like someone I haven't seen in two weeks.
The doc said I could start driving as soon as I could turn my head from side to side and back up without feeling dizzy, and at this point I'd be able to do both. But even though I'd be "medically" OK to drive, I'd be very afraid that as soon as I arrived at my destination, I'd have to curl up in the back seat and take a nap. So for now I'll just be happy to take a walk or two through the neighborhood, and I'll just save that tank of gas for another week!
Wishing everyone the best with their recoveries, follow-up results, and decision-making!
Hope you're all having a great weekend,
Nancy
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Hey Nancy- always good to read your progress reports! Glad your bad day was just that - one bad day. We all get them, but that doesn't make them any easier.
Glad you got the stitches out - that's a big step in recovery. I took my first spin in the car (up and down the block) at about 2 weeks, and then didn't drive again for at least 10 days. Even though I was "medically" okay to drive, I just didn't feel up to it. As you said, I was concerned that I'd get somewhere and be too tired to drive home. You'll know when you are ready - no need to rush it.
Hope your recovery continues to go well, Nancy.
Debbi
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Hi Nancy -
Glad to hear you're feeling better and finally got your stitches out. I didn't have any external stitches, but for some reason, still can't turn my head very far to the left -- guess I'll have to ask the doc about that. Anyway, getting back to you -- I'm very happy for you that your recovery seems to be back on track and hopefully the rest of your recovery will be uneventful. You will know when you are ready to drive. I went for a short drive at about three weeks and loved the sense of freedom it gave me but decided I will only drive when I really need to until I can turn my head more. You'll know when you're ready to drive and see for yourself how exhilerating it feels to be behind the wheel again!
Best wishes
Wendy
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I just read your recent post and sounds like you are healing just fine. Glad you found your headache issues are easily dealt with and I hope they go away for good! What is the name of your cervical pillow, this sounds interesting?! Wishing you great health and quick recovery doing what you were able to do b.s. (before surgery)!
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Hi All,
Today marks three weeks since surgery, and I have to say that the last few days have been my best so far. The first week home I felt like I had the sleeping pattern of a newborn, the second week was more like that of a toddler's, and yesterday I only needed one extended nap - so it feels like a little progress on the fatigue front.
Debbi and Wendy - You made me realize that I don't have to have a real destination just to take a drive! I wanted to do something new (at least new as a postie) to celebrate the three-week mark, so after reading your posts, I took a drive around the neighborhood (accompanied - I'm not ready to fly solo yet) at a nice leisurely pace. Total distance travelled - 1 1/2 miles...baby steps! Thanks for the idea of just taking it out for a mini-spin.
Karen - The pillow I use is made by Tempur-Pedic. I picked it up at Bed, Bath, & Beyond, but here is the T-P website so you can see what they look like. The one I use is the "neck pillow" in the second row. They come in two sizes depending on your height, so they'll fit properly under your neck. I find it's especially useful if you're a "side" sleeper.
http://www.tempurpedic.com/pillows/
http://
I go back to the doctor tomorrow to see if there's any real sound coming in on the AN side, or just what I "think" I'm hearing. Either way I'll hang tough for a while to see if anything changes in the next few months. If not, I'm prepared to go BAHA! (I heard they even have connections for MP3 players - anyone familiar with that?)
So thanks for your support, as always.
Hope everyone else is doing well!
Nancy
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Nancy-
So glad you are continuing to feel a little better each week! The recovery isn't fast enough to suit most of us, but it pays to remember that each day bring some new, although small, step towards the "new" you! Thanks for continuing to post with updates - it is so good to read about other's journeys.
Debbi, cheering you on from NJ
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Hi Everyone,
I don't have much of an update - but that's better than another setback!
The doctor says to wait another week before resuming "normal" activites, but didn't specifically mention exercise. I've been afraid of overdoing it again and have been taking it pretty easy, but I'm looking forward to getting back to my pre-surgery workout - mostly hiking and Pilates. I'd been "in training" for the surgery beforehand - and that was a great motivator - so now I'll just train for getting back to regular life! But I really think because of this journey it'll be a better life...because I now have new friends :D , different priorities 8) , and I'm done deciding on a treatment! ;D
Hey Debbi - You're right that it's so good to read about other people's journeys - it's one of the great things about this forum. When I was going through my decision-making process last May, you were posting your first few weeks post-op. It was amazing to me - one day you were going in for surgery - and a few weeks later you were driving down the highway! Your positive attitude and energy (though you warned about fatigue!) were so encouraging to me as I considered surgery. Sometimes we have no idea how many others we may be helping by sharing our stories. I really appreciated you sharing yours!
Sending lots of good thoughts to all!
Nancy
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Hi, Cheri,
I arrived in L.A. the Saturday morning (1/5/08) before my Wednesday (1/9) surgery and returned home on Saturday (1/19). We stayed at Seton Hall through the 18th, and spent that last night at one of the hotels near LAX since we had an early Saturday morning flight back to New Jersey. I was ready to come home at that point.
You mentioned "referrals of local docs for follow up appts." -- House didn't do that in my case (I already had a local otolaryngologist), so I'm not sure of their policy. Frankly, the "follow-up appointment" with my local doctor consisted of a single 5-minute visit a couple of months after my surgery during which he complimented the skill of the surgeons, said my scar and the recovering BAHA implant site looked just dandy, and that he would handle the 12-month MRI prescription. End of visit.
I'll reply to your PM a little later today. Take care and try to relax as your surgery date approaches.
Catherine (JerseyGirl2)
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Cheri,
In my last message I should have added the comment that I'm sure your doctors won't release you for a return flight home if they don't feel you are ready! You'll have appointments with all your doctors on the day prior to your scheduled return home, and, of course, they'll be visiting you every day that you're in the hospital. During the time between your release from the hospital and your return home -- when you'll be staying at Seton -- it's very comforting to know that the hospital and Clinic are very close at hand!
Catherine (JerseyGirl2)
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Hi Cheri,
As Catherine said, the doctors won't release you to go home unless you're ready. And others would know better (since I do live in LA), but it seems most people are told to stay at least ten days after their surgery. I would just plan on whatever Dr. Friedman suggests and you'll be fine.
As far as my own experience goes, the headache I had at two weeks was a bad migraine (now I think brought on by doing too much), but proper migraine medication would have stopped it from getting to the point that it did. If you have a history of headaches,, you can always talk to Dr. Stefan at your pre-op about what to take (or what he can prescribe) should the same thing happen. (Not that it will but it never hurts to be prepared!)
And glad you like the pillow! I wasn't sure I was going to keep it at first either! It turned out to be worth the cost, but I held on to the receipt for a few days (or should I say nights) until I was sure!
Nancy
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I arrived in LA on Sunday. Had my preop visits on Monday and surgery on Tuesday. I left the hospital on Saturday. My husband stayed at Seton while I was in the hospital. When I left the hospital we stayed at a hotel in Westwood. I had my stitches out the following Wednesday and flew home on Thursday. Sooooo, I was in LA for 2 days before surgery, five days in hospital, and five more days until I left, so a total of 12 days.
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Hey Nancy, Catherine, Cheri and vcshaub,
All this House talk is so informative and helpful. I'm taking it all in. As I told Nancy, my husband is going to stay at Seton and my mom at a nearby hotel. I will join my mom in the hotel after my husband leaves a few days after surgery...maybe. Vcshaub, what hotel did you stay at in Westwood...is that on the outskirts of LA?
Think I need to go get one of those pillows you guys are talking about! But sounds like a may need to take out a small loan for it???
Thanks for letting us invade your post, Nancy!
Cindy
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Cheri~
An otolaryngologist is just a fancy name for a plain ole ENT - it took me a year to be able to say that word so I throw it around any chance I get!! ;D
K
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Cheri and Cindy,
Though I love my tempur-pedic neck pillow, it felt much too firm for the back of my neck when I was in the hospital. I brought it with me and tried it the first night in my room, but since the back of my neck was sore from surgery (remember I had a retro), the only pillow I could get comfortable with was a soft feather-type one that I could mold around my neck. They also keep the back of the bed raised slightly so you're not laying flat, which helps. I think most people feel a little more comfortable sleeping slightly propped up - I know I used a couple of soft pillows for the first week or so at home, too.
Cindy - I picked up my neck pillow for about $80, thanks to the $20 off coupons that are always coming in the mail from Bed, Bath & Beyond (or Bird, Bath & Beyond in post-op speak).
Cheri - Hope you're able to find a local neurotologist for your follow up visits. You're right that ENT's don't specialize in AN's. I've personally found that some know a lot less about AN's than the average AN patient. I had seen two different ENT's several times each during the year and a half before my diagnosis to try to find the cause of what began as fullness in my ear, along with tinnitus a few months later. After I learned they could be symptoms of an acoustic neuroma and mentioned it to one of them, he said there was no way I could have an AN since my hearing was so good! Both ENT's were absolutely shocked when I called to let them know my MRI results (finally ordered by my PCP). They said they'd never considered an AN without significant hearing loss.
Someone once said on the forum that we need to help educate ENT's about AN's - I completely agree and I'm trying to do my part!
BTW - I've been driving around town for the last week or so, but today drove for the first time on the freeway...aahh!! ;D
Nancy
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Mamcy - Congratulatoins on driving, it's a great milestone!
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Ya'll are all preparing me so well on all the small details that I have no idea about. The more I can cover before the surgery, and the more prepared I am, the easier things might be when I'm not so level headed. (no pun intended)
Cheri
Cheri,
The amazing people on this forum also helped me to feel relaxed and prepared going into surgery (don't forget lip balm!). I also had the wonderful experience of meeting Kathleen and David the day before my surgery. Speaking to them in person was so reassuring.
And so now, 6 weeks later, I'm finally getting around to posting the picture! Here is David at 8 months post-op, Kathleen at 6 days post-op, and me at one day pre-op.
(http://farm4.static.flickr.com/3059/2851988852_9459d2a972.jpg)
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Nancy,
What a GREAT picture!!! That is very reassuring for us, what is the opposite of posties(?), to see you all smiling and looking so well - know you were pre-op, but you looked very relaxed! Know it was so nice for you all to get to meet. I'm looking forward to seeing you on my little trip out there. Hope to see a picture of you guys w/ Cheri next month first, though!
Thanks for posting it - have a great day out there!
cindy
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That is a great picture! Hi David, Hi Kathleen, Hi Nancy. Just three regular nice people in a park, discussing brain surgery!
Cindy, it has always bugged me that there is no good opposite of postie. Premie sounds like you just got born early. Newbie sounds like you just found out. The only good solution is to get treatment, so you can be a postie too.
Thanks for the picture, Nancy. Does any one else think David looks sly now? ;)
Steve
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What a wonderful picture! It's definitely "worth a thousand words" -- and I hope that everyone who sees it will get a good feeling of hope and encouragement. Thank you for posting it.
Catherine (JerseyGirl 2)
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Good one, Steve. "Just three regular nice people in a park discussing brain surgery." And yes when I do smile -- as much as I can -- I look like I'm up to something.
And Cindy, for as much stress as Nancy was under that day, she sure didn't show it.
Good going Nancy -- you did it!
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Great pic!!
David~
You are just a HOTTIE!!!!! :-* I have to say that you look a LOT better than you had made it sound!!
Steve~
LOVED the comment!!
K
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Hey Kay
A hottie???? I wish. But I'll take it. Unfortunately, to look at me in a picture, it seems as if I am normal -- but the smile on the synkinesis side is stuck there. That doesn't go away. It makes me look suspicious.
And Cheri, Nancy and I plan to drop in -- right Nancy? Do want visitors pre or post?
David
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David~
I want visitors - can't you just come visit Cheri in TEXAS???? ???
K ;D
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Great picture all - and I'm so glad you're all getting to meeting each other!
Guess I'll have to wait for the symposium for my own "meet & greet" :)
BTW, K, does your husband know you're calling David a hottie? :o
Not that I disagree ;)
Jan
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OK...so in MY eyes my sweet David is the HOTTEST hottie, but I thought that it would make LA David feel good!
K ;)
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So glad you all liked the pic! I was so thrilled to meet Kathleen and David in person. And at that point I was really relaxed about my surgery - I just wanted to have it behind me!
K - I agree with you! I think David looks great! ;)
Jan - I'll be waiting to see those symposium pics! Lots of them! ;D
Cheri - Just give us a day and time - pre or post - and we'll see you then. And Cindy, looking forward to seeing you in November, too.
Catherine - If you're ever back in LA for a follow up, looks like David and I will be spending lots of time at the coffee bar in the St. Vincent's cafeteria!
Just three regular nice people in a park, discussing brain surgery!
Steve - May I pleeeaase use that comment below the pic on my flickr page??? ;) And you're right, we definitely need a term for the post-decision pre-treatment phase!!
Nancy
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Steve - May I pleeeaase use that comment below the pic on my flickr page??? ;)
Sure. :)
How about preppie?
Steve
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How about preppie?
I'm envisioning pink & green, monogrammed sweaters, dock-siders, chinos, and those pants with the whales embroidered onto them.
My personal opinion is, we need another term.
Jan
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I thought what Jan did - I had to go back & read the post before to see what in the world Steve was talking about - I thought, "Preppie hat?"
LOL!!!
K ;D
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I LOVE the picture!!! And, David, I like the artful way you've turned you head to one side - this is exactly what my two NY acress friends told me to do to minimize my crooked face in smiles. This mus be something you learn as an actor! Anyway, I think you all look fabulous!
Debbi
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Ok, we really must come up w/ a word for the pre-treatment folks! It's driving me nuts. "Ante" means before, so would we be ants? Jim, surely you can think of something???
Nancy, looking forward to meeting you, too (hopefully David also). You guys are becoming the official AN welcoming committee in CA!
cindy
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Cindy~
I am thinking and have solicted help from my good friend that just comes up with crazy stuff like that. We should get Lori's input - she's the witty one!!
K
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So I'm off doing something else for a day and I come back to these compliments. A Pshaw, Ladies. And here I thought I was invisible to women in their 30's. It puts a half-smile on a Wonky-Headed Boy. I'm thinking that I'm living in the wrong part of this country.
OK back to serious stuff. Cheri, when would you rather have a visit from the LA welcoming committee? Pre-surgery when you need the encouragement? Or post-surgery when you're ready to party? Or both if we can get our collective act together. And Cindy, even though I may be in Long Beach by then, I will make the trip up to LA.
David
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David, you are a hottie, sorry, it's just the way it is. Or maybe it's because you were surrounded by two beautiful women??
Marci (never without an opinion)
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Nancy -- the 30th? Noon? Our favorite meeting place -- St Vincent's cafeteria?
And Marci -- it's because I was surrounded by two beautiful women. Really.
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Debbi - Glad you liked the pic, too. We were all so happy that our plan to meet actually worked out!
Steve - "preppie" was a good try, but I think you were overruled. ;) (All I can think of are "pre-treatie" or "pre-postie" - both a little long.)
K - I'm hoping your friend or Lori will come up with the perfect term!
Marci & David - you are both VERY sweet! :)
Cheri & David - Noon or early afternoon on the 30th it is. (Cheri, I'll PM you my cell #.)
On the recovery front, I have to say it is amazing to me that I had brain surgery six weeks ago today! Though I still take naps everyday, six weeks ago I never thought I'd get my energy level back to where it is today - not quite where it was, but it feels good none-the-less! It gives me a sense of normalcy again. Of course, that might go out the window when I go back to work in a couple of weeks!
An interesting thing about my work...when I first mentioned to my boss that I was having problems with my inner ear (I knew I had the AN but wasn't ready to say anything), he told me he knew a good place to go for ear problems . He went on to tell me that he had a benign brain tumor removed from his inner ear back in 1975 at the House Clinic!!! Turns out he had a middle fossa done by Dr. William House. It's amazing how small the world can be...or is it just that our AN world is so small??? ::)
Nancy (up way too late again :P)
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Just a quick comment on the House "family tree" for those who may be interested. Dr. William House, who performed Nancy's boss' surgery in 1975, was the younger half-brother of Dr. Howard House, the founder of the Clinic and Institute, and the uncle of Dr. John House, who's currently at the Clinic. If you google Howard House, you'll find an absolutely fascinating interview he gave when he was in his 80's, detailing his career and the early history of auditory science and medicine. I think that every AN patient, regardless of his/her treatment decisions, owes so much to this medical pioneer.
Catherine (JerseyGirl 2)
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Cheri
Photogenic doesn't count. Heart does. You bring yours. We'll bring ours.
David
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I know I'm late chiming in here... but what a fantastic pic of you all! You all truly look marvelous! I'm thrilled you all got to meet each other face to face. IMO, it truly does make a difference in this "journey" to meet others face to face that walk the same shoes (different sizes, of course! :) ). I try to stress the importance of meeting others face to face and thrilled you all did.
Have fun on the 30th (reminder: to organize get togethers, try to post them in AN Community like we do for the NE Brunch, so threads here stay on track. It is one reason the AN Community was created. :) )
Phyl