ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: stephanie_megan on February 22, 2010, 04:04:44 pm
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I'm a First time poster :-)
My Husband Kevin is having Mid Fossa surgery at House with Dr. Friedman on Wednesday March 3. We live in Chicago, so we have to travel. Wondering if anyone has any advice for post-op living out there. I think I'll stay at the Seton Guest Center, but his parents are coming too and I'm not sure they'll be able to get a room too.
Any little bits of advice will be appreciated!
So far we're very impressed with Dr. Friedman. Has been communicating with me via email and phone almost non stop for a few days now.
Feel free to email me directly or post back here.
Thanks!
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Hello and welcome, Stephanie!
I'm sorry your husband has to deal with an acoustic neuroma but I'm pleased that you've discovered the ANA website and the Discussion Forums, which I believe (ahem) are a valuable resource for AN patients.
Although you didn't state it directly, I gathered from your post that your husband is having AN removal surgery at the House Ear Institute in Los Angeles, California and that Dr. Rick Friedman will be his primary doctor. From the accounts of our members that have opted for treatment at HEI, many with Dr. Friedman, I think it's safe to say that your husband is in good hands.
I didn't have my AN surgery at HEI, so I'm unable to offer the information you're seeking. However, I have no doubt that many posters will be adding to this thread quite soon and supplying the information you asked for. I think you'll be pleasantly surprised at the responses you'll receive in a fairly short period of time, because this is a very active message board with many members that are eager to help and advise. I know you'll be glad you found us. :)
Jim
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Hi Stephanie!
Welcome and I'm sorry to hear that you husband is dealing with an AN. It seems that he is very lucky to have a supportive wife to see him through this.
I did not have my surgery with Dr. Friedman, but I have heard a lot about him on this board and he has an excellent reputation. I wish your husband a successful surgery and a speedy recovery.
Lyn
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Hi, Stephanie,
As the others have said, I'm also sorry that your husband has been diagnosed with an AN, but I think you'll find some good information on this forum.
I had AN surgery (translab procedure) at House in January 2008 and can't say enough good things about the entire experience. My husband and I stayed at Seton and found it to be quite comfortable. If you do a search on "Seton" and "House" on this forum you'll find a tremendous number of posts that will give you some good ideas of what to expect.
A couple of things I like to suggest to future House patients include (1) renting a car with a GPS (if you're unfamiliar with the area); we couldn't have managed without a car, but I'll certainly add that I know lots of patients who didn't bother with a car and they did just fine, too. The freeways weren't quite as intimidating as we had feared and we did lots of driving around both before and after my surgery. And (2) if you have some frequent flyer miles you might want to consider upgrading your return flight to first class -- the extra room, quieter atmosphere, and speedier passage through LAX security were very much appreciated after surgery.
Best wishes as your husband's surgery date approaches -- he'll be in wonderful hands at House and St. Vincent's!
Catherine (JerseyGirl 2)
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Hi, Stephanie...glad you've found us, but as others have noted, sorry you had to. Dr. Friedman and Schwartz did my translab. Both my mother and my husband flew out to LA with me. My husband stayed at Seton, but my mother stayed at a nearby hotel - Kyoto Gardens. I think Seton, in general, will only give a family one room per patient. The folks at House will provide you with a list of local hotels. The hotel offered a daily voucher for a free taxi to and from St. Vincent's every day, so it was very easy for my mom to get around. She would go over to my husband's room in Seton every once in awhile for a nap or internet access, but returned to her hotel room every night. My husband actually ended up sleeping in my hospital room every night, but he used the Seton room for naps and showers.
I agree with Catherine (JerseyGirl2) about the GPS if you rent a car. We got a car, but not the GPS and were immediately sorry we hadn't.
You are in great hands out there - you will feel such a peace when you first arrive and see both House and St. Vincent's. Please let us know any other questions you may have - as Jim said, there are many of us here who are happy to help as best we can.
Take care of you and Kevin :)
Cindy
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Hi, Stephanie -
I'm glad to hear that Kevin has made his surgery decision after cancelling with Dr. Wiet.
I hope everything goes well for him.
Jan
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Hello Stephanie, sorry you guys had to find this club, but very glad you did...I sent you a PM with some very detailed info about my experiences at House...There's a lot there, but it should help. Let me know if you need any more info or some clarification on what I sent you!
Jay
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I got me a good woman here don't I?
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I got me a good woman here don't I?
Is Steph your better half? ;) You are VERY lucky if she is, as she's certainly looking out for you during this time. I know you have been tossing Chicago vs. HEI and sending wellness wishes with your upcoming procedure with Friedman.
Phyl
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Thank you EVERYONE for your thoughts, prayers, advice and comments. We're far better prepared with your information. I'll keep y'all updated next week.
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I wish you well. I have had 3 surgeries performed by Dr. F. He's a great guy. Please take care.
Jeff
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I got me a good woman here don't I?
Is Steph your better half? ;) You are VERY lucky if she is, as she's certainly looking out for you during this time. I know you have been tossing Chicago vs. HEI and sending wellness wishes with your upcoming procedure with Friedman.
Phyl
My better half she is :) It's been a torturous process deciding between Dr. Wiet and CEI and Dr. Friedman and HEI but in the end we felt that Dr. Friedman's experience and attitude were going to serve me well as we try to preserve some hearing in that right ear. Since there is no tumor on the right side I'm not NF2, yet.. it is always a possibility given my history so we felt we needed to do everything we could to save hearing on the left. Dr. Friedman has been outstanding, he has spent countless hours e-mailing and talking to us even tho his office has not been paid a dime by myself or my insurance company.
Had we followed the original plan I would be in the NICU post-op after having trans-lab right now.
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Dear Stephanie,
I was in contact with Dr. Friedman and he spent much time emailing me and talking with me over the phone. You've made a fine choice. He also recommended Mid Fossa for me but I chose to stay closer to home at Johns Hopkins.
You might want to get on the Willing to Talk list for more people that have been to House. I spoke to someone in my neighborhood in Maryland that went out to House and spoke to me at length about the facilities. Give it a try and best of luck!
Mei Mei
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I'm in the process of packing for the trip. Any "must have" items we should bring?
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Much discussed topic around here ;D Here's one link to a discussion and there's a link within that link with even more info...Lip balm is the main theme in all of the threads I've ever seen on this topic! Pack light, for sure!
http://anausa.org/forum/index.php?topic=9251.0
Let us know if any thing else comes to mind that you'd like to know...best to both of you next week!
Cindy
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Here is the list of things I've seen so far:
powder
facial/baby wipes
lip balm
slippers/slip on shoes
jammie bottoms
button up or loose neck t's
pictures of home
toiletries
breathe right strips
i pod
cell phone
laptop
sunglasses
lotion
memory foam neck pillow
comfy socks
anything else to add? Since we're from Chicago and going to LA, I can't run home to get anything, but according to google maps, there is a Target 7 miles away. I guess I might need to take a trip to Target (oh darn, that being my favorite store and all).
Kevin was in the ICU for 3 weeks for his previous surgery (schwannoma of the 10th nerve plus massive post op complications) so we have an idea what to expect in the hospital, but I didn't know if there was anything specific about St Vincents.
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Wow, sure does seem like you guys were able to get into HEI quick..??? That's cool!
Wishing Kevin the best with his surgery!
Hopefully you guys can enjoy a little warmth while there ;)
OH, don't forget your chargers for cell & laptop stuff.
Denise
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I think Dr. Friedman has a crush on my wife, that's how he was able to schedule so quickly. Posting this from the comforts of Seton Hall. All my pre-tests are scheduled for tomorrow so wish me luck!
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Oh, just got this....so glad you guys made it safely there!
(a crush on your wife....so cute ;) )
Once again....best wishes, is it warm? ENJOY!!
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All my pre-tests are scheduled for tomorrow so wish me luck!
Okay, good luck! ;)
Steve
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Kevin -
hope your tests go well today and you're on schedule for tomorrow's surgery.
Good luck - with the tests and the surgery.
See ya on the flip side.
Is your wife going to keep us updated?
Jan
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Yes she will, she has an account here (she actually started this thread) so she will be providing updates.
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Definitely will keep y'all updated. We're getting ready for the appointment with Dr Friedman now. I put on a little more makeup than usual and a cute top since Kevin seems to think doc has a crush on me. Why not? :o
Long day of information overload ahead. I think I'm ordering some whiskey with dinner tonight......
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I just got on this thread late - seems back to work has meant no time to hang out on the forum! ::) I was at HEI end of September with Dr. Brackmann....they are WONDERFUL so you are in very good hands! Here's to a successful surgery and a speedy recovery!
Cheryl
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Baby shampoo! Closing your eyes in the shower post-op is a trip! Baby shampoo won't sting your eyes so you can keep 'em open while you shower and believe me, you will want to shower after 5 days of bed baths! Say hi to Dr Rick for me.
Capt Deb
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Just settling in for the night. All the pre-op testing went fine. Finally met all the docs and I still feel 100% confident in our decision to be here in LA. Met with a few alums today (Nancy, David & Lainie) - thanks for your time today, it was very helpful for me to know what to expect.
Kevin is doing OK, but wishing he was already under anesthesia. It might be a long night. If I had one wish right now it would be for him to rest well tonight.
Will update tomorrow post op to let you know the results. Good Night everyone!
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That's great that you met up with the LA Welcoming Committee. A pleasant little chat about brain tumors. :)
Don't worry about Kevin, he will be out all day tomorrow, then trying to rest in ICU afterward. Lots of naps ahead for him!
Steve
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Stephanie,
I'm so glad you and Kevin had time to squeeze in a quick lunch with us during his busy pre-op day. Kevin's got a fantastic team on his side...Friedman, Schwartz and you! ;D
(http://farm3.static.flickr.com/2779/4402843573_e9af6b98d8.jpg)
Lainie, Stephanie, Kevin, & David, 3-2-10
(http://farm5.static.flickr.com/4055/4402843917_f3769b4c8b.jpg)
Stephanie, Kevin, David, & Nancy, 3-2-10
We'll be sending lots of good thoughts and positive vibes to Kevin in the morning!!!
Nancy
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Thanks everyone. Just getting ready for the dreaded walk from Seton to admitting. Will post again when I have news.
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Dear Stephanie,
Good luck today, Kevin will be in my prayers today especially. Keep us posted. :)
Sue in Michigan
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Surgery today for Kevin,
Prayers for a successful surgery!
Maureen
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So far so good. Just saw Dr. Friedman and he said the ABR test is showing good results. They were able to save the hearing :-) They were able to get the whole tumor out, no "snippets" left behind. Also said had a great view of the facial nerve.
Only negative is that they feel he's a higher risk of spinal fluid leakage so they put in the spinal drain, which will slow the recovery by a day. But small price to pay, I guess. I haven't seen him yet, they're still stitching him up. They said 30 more minutes or so.
Thanks again for all of your support! We still need it in the upcoming weeks, the hard part begins now....
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Stephanie ~
Just checking in to see how things went with Kevin and I'm delighted to learn that all is well. Saving his hearing and apparently no facial nerve issues are both wonderful news! No residual tumor left behind is excellent. The drain is a slight impediment but temporary and in Kevin's case, necessary. As you noted, a small price to pay for an otherwise splendid surgery outcome!
I trust that Kevin's recovery will be smooth and rapid. Our support will remain steady as long as it's needed. Thanks for the update.
Jim
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Stephanie,
Great news - thank you for the update!
Nancy
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Even better news:
I just went to see Kevin. His facial nerves are PERFECT. Dr. Friedman came by when I was in there and said "Smile big for me" and by golly he threw out a HUGE smile, beautifully symmetrical. Additionally, he can definitely hear out of the left ear (Dr Friedman's tuning fork test).
Additional good news is that they weren't able to "thread" the catheter into the spine for the spinal drain, so they did a puncture instead which I guess means that if he leaks spinal fluid, it will go into his soft tissue in his back. This is better than the spinal drain because it won't keep him in the ICU for an extra day. However, they are still kind of worried about the spinal fluid leak (apparently he's an air-head - meaning he has a lot of holes in his skull bones with air pockets - plus his jugular is cut on that side from his previous surgery).
He's pretty nauseated and has thrown up a bit. They've given him some anti-nausea medicine, and LOTS of pain meds, but he's still pretty uncomfortable. Unfortunately, they won't let me stay in there with him, I"m only able to go in for 10 minutes every hour which I've already asked to speak to a manager about.
So in summary, today was a HUGE win. I'm ecstatic at the results so far and can't say enough about the team here.
Thanks again everyone for your support.
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Wow, Stephanie, VERY positive news.
Thanks for updating us.
Our best to Kevin,
Jan
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I'm ecstatic too!
The nausea, csf leak, etc, will pass. Remember the first 3 days to NOT count!
Congrats on a very successful surgery :) :)
Maureen
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Great to hear that he's finished and hearing was saved and facial nerve is in great shape! Not much more one could ask for with this surgery! The nausea will subside, though may take some time. Give him our best - thanks for updating us,
Cindy
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I'm so pleased for both of you! Take care of yourself too.
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Hey! Very good news there....so glad to hear that everything went well. Like it was mentioned, the first 3 days don't count! Take care and keep us updated!
Jay
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Kevin Update 10:15 PM Pacific Time Sunday:
Good Evening!
Kevin was released from the hospital early this evening :-) All is going pretty well!
Right now he's laying in bed sleeping, so thankful to have the no IV, no blood pressure cuff, no one bugging him. Just resting. Although admittedly the wheelchair ride was a bit draining and caused a little bit of nausea, but he didn't end up getting sick. Just dizzy and uncomfortable for a little while.
We got some fantastic news this afternoon before we were released. The main surgeon, Dr. Friedman, called on the hospital room phone. I spoke with him for a few minutes and he asked to speak to Kevin, but specifically asked for Kevin to use the left ear (surgery side). Kevin was able to hear him just fine. Doc said that if they had damaged the acoustic nerve during surgery, he would have heard him on the phone, but it would have sounded like Charlie Brown's Mom and he wouldn't have understood what was said. The fact that he heard every word and responded is great news.
Now over the course of the next few weeks, it's possible that the facial and acoustic nerves will temporarily have weakness due to swelling of the brain and surgical area, but again, it will only be temporary. Doc says he has no reason to believe that Kevin won't hear perfectly from the left ear once the swelling decreases and fluid drains. YAY!
The next week we will stay here in LA in the "halfway house" type hotel next to the hospital. The room is great and I feel great knowing we're 50 feet away from the docs and nurses if there are any complications, though at this point there is no reason to believe there will be any issues.
I won't be doing daily updates anymore since there really isn't much to report other than his progress in Physical Therapy, which probably won't be that exciting.
Thank you all AGAIN for your constant support. I've been reading Kevin everyone's emails, texts, messages, etc. He loves listening to all of your notes.
Please keep up the prayers, thoughts and groovy vibes. We're not quite out of the woods yet, there is still a chance of complications, although it looks highly unlikely at this point!
Stephanie
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The news about hearing preservation, and of course facial nerve preservation, is wonderful. Way to go!
Both of you take it easy for a while now. Even though it has worked out well, it was still brain surgery. Kevin will need a lot of naps in the next few weeks.
Best wishes for a quick recovery and a smooth trip home.
Steve
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Way to go, Kevin ;D
A truly amazing success story.
Best wishes for a continued uneventful recovery.
Jan
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I am arriving very late to this gathering as well, but am so glad you decided to go to HEI. I hope these days recovering at Seton are better than you originally mentioned ;) Just rest. Take it slow. Your trip home should be uneventful. I too am very partial to Dr. Friedman. Don't forget to come back and ask questions as you recover! Alicia
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What started as a great day has turned out not so great. Kevin is back in the hospital on IV antibiotics. We went to the surgeons office to have the stitches removed and they reviewed the results from the Spinal Tap that was done on Tuesday. Unfortunately, the white blood cell count was higher that they'd like to see. In addition, There is still a slight Spinal Fluid leak. Those 2 things combined made the surgeons a bit nervous so they decided to start him on some IV fluids. And since they figured this out so late in the day, they had to admit him back into the hospital.
Best case scenario is that tomorrow they will place a pick line (if you're queasy skip to the next paragraph). The pick line is kind of like a long IV that goes into the artery in the arm all the way to the heart. This way they don't have to keep putting in new IV's every few days.
Also, with a pick line they can discharge him from the hospital and I can take care of him in the hotel room. During the MRSA infection from his last surgery, I learned how to change the IV fluids. Nurse Stephanie can handle it :-)
As for the spinal fluid leak, the neurosurgeon wants to wait until tomorrow to figure out what to do about that. Best case scenario the IV antibiotics help the surgery site heal so that there is no more fluid leak and we don't have to do anything. It's possible they might have to do another Spinal Tap to drain more fluid or maybe place a drain. But we'll cross that bridge when we get there.
He's taking it pretty hard. We were hoping for a complication-free surgery, but looks like that's not in the cards for us. But, on the positive side, Kevin is actually feeling pretty good. If it was a bad infection, he would be feverish and feeling sick. We're hoping he continues to feel good. His lungs sound good and other than a headache and backache (both explained by the spinal fluid pressure), he's doing quite well.
So here I am, yet again, asking for prayers, hopeful thoughts and good vibes sent here to LA.
Love you all,
Stephanie
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Hi Stephanie,
So sorry to hear about Kevin's set back. Unfortunately it does sometimes happen, but he is feeling good, and better to "nip it in the bud" now, take all precautions, and treat everything before you head back to Chicago.
Another week and hopefully you'll be good to go back home.
Prayers and positive vibes going your way.
Maureen :)
PS-I'm a home health nurse. Can't resist- the IV line is a PICC- peripherally inserted central catheter!
Goes into the __________ vein, which eventually gets to the heart (ok don't know as much as I think I do!) :D
Anyway, they are great. Kathy on the forum had one for quite a while, but hopefully Kevin's will be very short lived.
Take care, nurse Stephanie. Treat yourself to something every day OK????? :)
Maureen
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I am so sad to hear of this set back but my very 1st thought was EXACTLY what Maureen said above. Glad you weren't on your way back to Chicago when all this happened.
Have heard of the spinal fluid stuff causing pain for a few post surgery. Thought maybe I had that, but due to previous back & neck ahces, they actually later found out other spinal issues.
Take care, prayers for sure!!!!!
Denise (MI)
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'Nurse' Stephanie ~
Like those who've posted before me, I, too, was dismayed to learn about Kevin's set-back. Of course, we all want complication-free surgeries but yes, these operations are complex and sometimes problems arise despite the doctor's best efforts. I can only hope, along with you and Kevin, that these issues quickly resolve. I'm glad to read that Kevin is feeling O.K., despite the problems. That isn't always the case so he should be thankful for that, as I'm sure he is. Remind your husband that in a few months, this will all be a dim memory. Meanwhile, don't dwell on the negative and as Maureen stated, 'treat yourself to something every day". :)
Jim
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Ugh...the ol' one step forward, two steps back dance eh? Well, it sounds like Kevin has a very capable "nurse" as you had mentioned, so he's in good hands! My thoughts and prayers are with you both! Take care!
Jay
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That's not the first PICC line I've heard about here on the forum. So Kevin just gets to join a special club within the club. ;)
They are a royal pain, but all cases I've seen on here finish up well and go away, so I'm not worried. Kevin will be home and recovering eventually.
Keep up your spirits, the end is in sight, it is just a few more hills further away than you thought. You will make it!
Steve
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I am sorry that you and your husband are having to deal with this. Although I haven't had this complication, I did have some major complications that caused me to stay at St. Vincent's for 5 weeks, then another hospital for 2 more. Dealing with this is indeed a challenge. But, you are in good hands. Dr. F is my dr and has done 3 of my surgeries. He's a great guy.
I want you to know that you can get through this.
You'll look back at this time and see just what you can do if you have to. Hang in there and best wishes.
Jeff
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Hello everyone,
I would give more details but as I'm sure you all know I'm quite exhausted.. here are the cliffs notes since Stephanies last post.
1. re-admitted, placed on IV- Antibiotics and had a spinal fluid drain placed.
2. spent Fri - Tuesday in ICU with spinal drain hoping for the leak to heal up.
3. drain was clamped off and removed and it appears the leak is gone.
4. discharged from St. Vincents yesterday
5. continuing to recieve antibiotics until monday and should be cleared to go home on tuesday :)
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Yes, so glad to hear from you.....must have got my message? Sounds like it's finally getting better then, since you are back out of the hospital. What exactly are they saying caused what you had? (like a staph or MERSA or other infection?)
Oh we will be saying LOTS of prayers for you guys this in hopes all goes well so you can head home. Such a long ordeal you have had! Hope the family is holding up well!!!
Are they sending your papers to a doctor closer to home, just incase anything is off when you get back? Just a thought due to the distance.
BEST WISHES!! and IN MY PRAYERS!
Denise S. (MI)
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Well, hello, Kevin! Welcome to postie land - sorry yours was a bit more adventerous than we would have hoped for, but glad things seem to be heading in the right direction now. Take it easy - nap, and then nap some more :)
Cindy
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You have had your share of confusing days. Remember to take it easy even when you start feeling more energy. You do not want another leak. Hope by Tuesday you are feeling amazingly better. Take it day by day, one foot in front of the other and before you know it - you'll be home. ;)
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Kevin,
Very nice and succinct post!
Okay, so hopefully the "leak" is behind you, and no headaches. You will be on your way home before you know it:)
Congratulations on being a postie, take it easy, real easy.
Maureen :)
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Update :)
1. Cleared by Dr. Friedman to head home
2. Cleared by other Dr's as infection free. No more IV antibiotics, PICC line is out!
3. Flight home is tonight, leaving LA at 5:30pm.... can't wait to get home!
4. Hearing test showed only mild hearing loss in AN ear at certain frequencies... %100 word recognition score post-op!!
With the exception of my little hiccup in recovery this has been everything I hoped for with my AN removal.. I wouldn't hesitate for a second to reccomend HEI and specifically Dr. Friedman, not only did he do an amazing job in the OR he has been outstanding to work with both pre and post op.. a genuinely nice man.
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Kevin ~
Thanks for the update! I'm so glad to learn that you're finally out of the woods (HEI) and homeward bound. Take it easy and don't push yourself too hard, but have a rapid and complete recovery.
Jim
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Sigh of relief! I am glad you are headed home - I hope Spring is everywhere when you get there. Enjoy your walks and naps!
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Good news, Kevin. Hopefully you are having a good flight, and will soon be nestled at home in your own bed. Bliss!
I hope you have decided that two neuromas is enough, and that you are done having this kind of surgery for a while. :)
Take care now,
Steve
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There's no place like home ;D
Jan
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Got home late last night after a very uneventful and overall comfortable flight... got to sleep in my own bed with my wonderful wife and my ridiculous Beagle whom we had to leave behind... man did I miss my bed and my dog :)
It's good to be home.. if I had it to do all over again I wouldn't change a single thing. HEI was absolutely fantastic and Dr. Friedman has to be one of the nicest people I have ever met.. not to mention they were able to save my hearing with the only side effect being a small CSF leak (they suspected I would have one even before going in to surgery, something about my bone being more porous than most??).. no facial weakness, no other nerve damage of any kind.
I guess the moral of my story is ALWAYS explore all your options with an open mind.. I was 2 days away from Translab that would have left me SSD for sure.. second and third opinions are a must as far as I am concerned.
Thank you all for your support during this whole thing, I hope to start contributing more to the community as a Postie helping support others now that I am essentially thru my ordeal :)
I learned so much from you all.. again, Thank you!
Kevin
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Know it is so great for you to be back home, Kevin! Despite your special complications, you have done so well. Try to continue to take it easy...nap and walk, nap and walk. You'll see improvements each day (for the most part ;) ).
I was so glad to learn that you were able to meet Nancy and David while you were out there. Made the trip that much better, didn't it! And I do happen to agree with you about Dr. Friedman and company :)
Keep us posted as you go along in your recovery,
Cindy
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Kevin
Wow, you are home and in your own bed with your own hearing. What else could you ask for? :)
So glad the CSF leak a thing of the past.
Please let us know how you continue to heal.
Happy day to you!
Maureen
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Kevin,
Glad to read that you're home and well. And Dr. F has seen me through 3 surgeries and some difficult complications. He is a Dr. and man for whom I have great admiration. I am pleased that your hearing was preserved and that you suffered no other complications.
Please take care,
Jeff