Author Topic: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's  (Read 15656 times)

Debbi

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #15 on: August 14, 2008, 08:00:35 am »
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
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Kathleen5306

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #16 on: August 15, 2008, 04:15:12 am »
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
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

NL

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #17 on: August 17, 2008, 10:46:42 pm »
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
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

Pooter

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #18 on: August 18, 2008, 08:56:41 am »
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
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

MAlegant

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #19 on: August 18, 2008, 09:06:19 am »
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
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Syl

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #20 on: August 18, 2008, 09:24:00 am »
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
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Jim Scott

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #21 on: August 18, 2008, 11:48:02 am »
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

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Omaschwannoma

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #22 on: August 18, 2008, 12:36:19 pm »
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).
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

NL

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #23 on: August 21, 2008, 11:59:05 am »
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
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

JerseyGirl2

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #24 on: August 21, 2008, 12:30:28 pm »
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
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Jim Scott

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #25 on: August 21, 2008, 01:05:10 pm »
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
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

LADavid

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #26 on: August 21, 2008, 01:27:43 pm »
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
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

cindyj

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #27 on: August 21, 2008, 01:46:36 pm »
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
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Debbi

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #28 on: August 21, 2008, 01:55:50 pm »
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
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

wendysig

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Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #29 on: August 21, 2008, 04:43:08 pm »
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
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!