ANA Discussion Forum
General Category => Inquiries => Topic started by: bsharpintexas on June 03, 2009, 03:41:24 pm
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Hello everyone! First I would like to say thanks to everyone involved in this forum. It has been very helpful and easy to use. I really appreciate all the supportive comments.
Let me tell you about our situation. My wife, Pam and I found out about her AN about 3 weeks ago. It's 3.6cm. Surgery is scheduled for 6/15. Pam is 41 and in pretty good health. She has decided on the TransLab to try and reduce the risk of facial nerve damage. Pam is a Speech Therapist and grade 3 + facial weakness could affect her ability to do her job. We have 3 great kids 12, 6, and 1 1/2 (I know, what were we thinking?)
My questions are about preparing for the surgery and supporting my wife. Obviously, everyone is different but I would love to hear your comments. Here are my questions;
1. What would you suggest to prepare for surgery?
2. What would you suggest to help support my wife prior to surgery? Mainly I am trying to reduce stress and do some fun things with the kids.
3. What are some good things to bring to the hospital for the patient?
4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
5. My wifes Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?
I will probably have more questions. Thanks in advance for your responses.
Bryan
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Bryan~
First of all, let me say welcome - to the place where you really don't want to be!! It is so great that you are so involved and there for your wife like this - I also have a VERY supportive, loving husband who has gone above and beyond in this whole AN journey! Where in Texas are you and where is the surgery going to be? I also live in Texas - we are at the top but we get around a LOT!! I would be more than happy to talk to you or your wife anytime. Just PM me your info...I am in a hurry right now, but I will write more later!
K
PS - Check out my blog - world icon on left!
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Hi Bryan,
There are several of us on the forum who are in TX, some of whom are in Houston, a couple a little more far flung. You have come to the right place for info. Where are you in TX? It sounds like you have some good support for after the surgery and that is a good start. As for as what to bring, there are a few things to start with. Pajamas that button, soft, fuzzy socks (hospitals are cold!), chapstick, your own pillow because surgery can be rough on the neck muscles, maybe some moist wipes, and the usual toiletries. She will feel much better after that first shower!
Keep us posted and good luck!
Priscilla
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4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
F3D. :)
That is, the first three days don't count. Most patients experience a short spell of crazy symptoms as they come to from the anesthetic and their head recovers from the shock of surgery. Just about any symptom is possible during those 3 days, and it doesn't mean anything has gone wrong. Most of it passes in a few days.
Welcome to the forum.
Steve
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3. What are some good things to bring to the hospital for the patient?
I will probably have more questions. Thanks in advance for your responses.
Bryan
Hi Bryan,
Welcome and questions are encouraged:)
There are a couple of threads about what to bring that I will post.
http://anausa.org/forum/index.php?topic=34.msg154#msg154
http://anausa.org/forum/index.php?topic=6309.0
Hope this helps..
Kindest Regards,
Kate
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4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
5. My wifes Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?
Hi Bryan -
I picked two of your five questions because it's after midnight here in Illinois and I have to get some sleep. This way I can't post into the wee hours of the morning ;)
Anyway, side effects immediately after surgery pretty much vary from patient to patient. One constant about AN patients is that we are all unique. We generally share some commonalities, but we have our own AN Journeys. Post op I had no pain, I had no headache, I had very slight facial nerve damage. I had extreme nausea and dizziness, I aso had double vision and was permanently SSD (single-sided deaf). I was extremely tired - which makes sense after brain surgery that lasted 7 1/2 hours. I also had "metallic mouth" - basically taste buds that were out of whack. I found that once I was mobile, my balance was definitely "abnormal".
The good news is, I got better each and every day. Some days it was one step forward and two steps back, but I did make progress. The only lasting side-effect I have is SSD - and most people adjust or find a solution like a TransEar or a BAHA (basically hearing aids - another story for another day).
The idea of your mother-in-law staying for 3 weeks sounds very reasonable to me - especially in light on the kids, specifically the youngest one. Your wife will be very fatigued and she will have "restrictions" - no lifting heavy objects, no bending at the waist, etc., for a little while. She won't be doing housework, driving, cooking, etc., for a few weeks either. So I say, take all the help you and she can get.
Good luck to you and to Pam, and welcome to the forum ;D
Jan
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Hi Bryan,
That was great of Kate to post those "old posts."
That's another great thing about this forum. You can do a search and come up with old posts.
I had translab surgery and had a mother of a headache post op, but I thought this was the norm for this type of surgery, whatever approach they use.
My suggestion would be to help her keep the pain under control, if she has those bad headaches.
She is young and in good health, so she won't look "sick." Pain is so subjective. My pain really was a 10 on the 1-10 pain scale, and I didn't get a good handle on it. Ah well, live and learn and pass on the info!
Don't be afraid to ask for whatever is needed, if IV morphine is needed- so be it.
My headaches did subside after weeks of pain med.
Everyone is different,and maybe she won't even have headaches!
And of course there is the post op balance/dizziness issues, which vary with everyone. And that too subsides. Throws some people for a loop. Others have little to no balance/dizziness issues.
So there you have my take on some of this.
Keep asking away. THat's what we're here for.
Maureen
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Hi Bryan!
I can't help with any of your questions, but want to say welcome. (Sorry your wife had to join this crazy AN club!)
My best to you and her as you search for your answers.
Here - the FOLKS are FANTASTIC! Post your questions and you will have responses, as you can already see.
I am here with my sister...strange, isn't it? ::)
My thoughts and prayers to you and Pam on 6/15.
Sincerely,
Sue
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Hi Brian and welcome,
All your questions, as well as all your future questions, are very important, so don't hold back. And I know you'll get lots of great feedback from this wonderful forum.
2. What would you suggest to help support my wife prior to surgery? Mainly I am trying to reduce stress and do some fun things with the kids.
Suggest you keep life as normal as possible leading up to the 15th. I realize that's easier said than done, but important nonetheless. Also, tell Pam to write to all these fine folks here. And of course, do as much fun stuff as you can with family and friends.
3. What are some good things to bring to the hospital for the patient? Take yourself as often as possible. It meant so much to have my wife there every day. Not many other visitors, but that's OK.
4. What are some of the side effects we can expect immediately after surgery?
As others have mentioned, I too didn't feel like doing anything, including eating, for 2-3 days .... good for a diet, huh? Balance will be kaput for a few weeks .... perhaps longer ... so arrange balance phys therapy starting several weeks after.
5. My wifes Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?
Well, I don't see how anyone on this forum can answer that .... ;D (just kidding). I think any help for you will be tremendous, specially with your 3 kids.
BTW, on this forum, word travels fast .... for upbeat, positive reasons. There is an AN calendar on which are listed dates (surgery, MRI, milestones, etc). If Pam would like her name and date on it, I feel sure that she will get lots of kind responses.
All the best to both of you .... and keep ;D-ing !!!!!!!!!
Greg
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Hi Bryan and Welcome!
Although I wish you had not needed this Forum, please know that you will find a wonderful group of caring people here, who will answer any and all questions ..... and we are genuinely concerned about all of our fellow ANers and their caregivers!!
You already have many good answers and links to more answers, but here are my thoughts:
1. What would you suggest to prepare for surgery?
2. What would you suggest to help support my wife prior to surgery? Mainly I am trying to reduce stress and do some fun things with the kids.
3. What are some good things to bring to the hospital for the patient?
4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
5. My wifes Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?
1. Keep busy! It helped me and my husband to focus on having things done beforehand that I knew I probably would not feel like doing afterwards. Around the house that was freezing some "quick" meals, cleaning bathrooms :-[, paying bills, etc. Outside of the house that was taking a couple of short trips. Although I did not know it at the time, wish I had gone to a movie because now I am afraid of the loud sound systems in theatres. Physically there really is not much to do to prepare, except for following the doctor's pre-op orders the day before. Be sure to check regarding any medication she is taking, e.g. Aspirin. Many meds that are potential blood thinners need to be stopped 10-14 days ahead of time. Mentally it helps to think about other things ..... if time, read a good book, etc.
2. See answer for #1 ..... short trips/excursions for the whole family. Try not to "hover" or say things like "soon you won't be able to do ....." :) Keep the conversation as normal/routine as possible.
3. Someone has already said it, but Chapstick! Somehow it was the one thing that bugged me post-op until my husband went after it! If she is like many of us, books, magazines, and newspapers were not terribly useful (some of us had double vision for several days afterwards). Bright cheery flowers were a wonderful uplifter for me, as well as the cards from friends and family. A picture of you and/or the kids would be good.
4. As Jan already said side effects are all over the ballpark. I had some nausea immediately upon waking up. I had double vision for several days. As Steve said F3D do not count and she will generally feel pretty lousy. I had no severe headaches but did have severe dizziness and balance issues. I used a walker or hung onto someone's arm for the duration of my hospital stay but quickly learned to navigate on my own once I was in my own house.
5. As for the 3 weeks (which really translates into 2 weeks at home), unless your youngest is an extremely docile child, I would hope someone could help out past that timeframe. Universally it seems that all of us share an increased need for rest .... and that is pretty hard to do with a little one. This is all assuming Pam has a smooth, uneventful recovery. It is most likely that she will have balance issues for quite a while afterwards and possibly continuing headaches. So, I hope you can arrange for additional help, if you find it necessary.
I certainly will keep both you and Pam in my thoughts and prayers. Be sure to keep us informed as the time comes. ..... and ask away!!!
Clarice
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Hi Bryan -
Well, sorry to have to join the welcome wagon for you and your wife. Glad you found us, though.
I can tell you that the best thing my husband did for me, both before and after surgery, was just to listen, to hold my hand, to be there when I needed someone to lean on. Oh, and when he came into the recovery room, the first thing he did was to tell me that he loved me, and that I was beautiful (even though my face was swelled up like a watermelon, I was wearing a turban, and I had tubes hanging out of me all over the place). ;D He did tell me later that he almost passed out in the recovery room when he saw me - so you might want to brace yourself! :)
I had my parents here for about 4 weeks after surgery and it was such a big help.
As for after effects of surgery - everyone is different. With translab, she'll be deaf on that side, of course. And, like others have said, the first couple of days won't count - she'll most likely feel like poop and there isn't much you can do about that. Headaches are statistically less common with translab; so she may dodge that bullet all together (I didn't have any headaches).
I brought a bunch of stuff to the hospital, but didn't end up using most of it. Lip balm was a must,though - the drugs really dry you out. I also recommend some kind of very loose pants to wear home - if she has the fat graft on her belly, anything that is too tight or binding is going to be really unpleasant. I used yoga pants with the roll-down waist which was perfect (in fact, I lived in yoga pants for about the first 3 weeks until the belly incision healed.) I would have liked my own pillow because the hospital pillows were so hard and uncomfortable. Books and magazines were pretty useless because I just couldn't see them well enough to read. I really enjoyed having my family there with me at the hospital most of all.
Sounds to me like Pam has got the most important thing of all - a loving husband.
Debbi
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Hey Bryan .... and Pam,
Has anyone mentioned the need for an elevated foam wedge for use at home? This is a must for most AN patients to try to sleep comfortably. It might be covered by insurance .... or at least a health care spending account if you have one.
Good wishes and prayers continue to flow your way!
Greg
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Thanks for all the replies everyone! Pretty busy today :P but I will be following up with you guys later!
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Hi, Brian - and welcome. I'm always sorry to learn that another person has been diagnosed with an acoustic neuroma but fortunately, they're almost always benign and operable/treatable.
I condensed your questions and although others were way ahead of me in responding, I thought I'd offer my answers, for whatever they might be worth to you.
1. What would you suggest to prepare for surgery?
2. What would you suggest to help support my wife prior to surgery? Mainly I am trying to reduce stress and do some fun things with the kids.
3. What are some good things to bring to the hospital for the patient?
4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
5. My wife's Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?
1. There really isn't much your wife can do to prepare for her AN surgery other than to be as physically fit as possible and try to keep a positive attitude. If she passed all the pre-op tests, then the doctors think she's O.K. and can endure the surgery with no greater risk than the normal risks inherent in any major surgical procedure.
2. Getting the house as squared away as possible and, as you're doing, having some fun time with the kids is a fine plan. Try to make some time for you and Pam, alone, too. Try to help her feel as if you'll have things under control and can cope with the kids and whatever comes up while she recuperates from the surgery.
3. Most patients don't really need that much in the hospital and many over-pack. Anything that comforts or amuses her is good. Once past the initial 3 days or so, she may want a favorite food or beverage (non-alcoholic, of course) which you can usually bring in because its unlikely she'll be on a 'restricted diet'. Books, magazines, newspapers, hand-held games, whatever helps her. She'll probably tell you - but be sure to ask, just in case she doesn't.
4. This is a broad question. Extreme fatigue, dizziness, nausea, double vision, headaches and neck pain are the most prevalent post-op complaints. However, I had only two of these - double vision - which was mild and went away within a few days and fatigue, which also dissipated within a few days. My AN was close to 5 cm when operated on, so you can see that there is simply no definitive answer to your question. Just be prepared for the worst and of course, hope and pray for the best.
5. A three week visit by your mother-in-law to help you and Pam with the kids, meals, etc does sound reasonable. By the end of the third week, Pam will know whether she needs further help. With no surgical complications, she should be doing well by Week 3. I was driving and out playing miniature golf my 3rd week of recovery. Some of the younger, more adventurous post-op patients are running half-marathons and doing other physically demanding things. Some are not. I'm active but hardly athletic and although I got back to my normal life (I'm retired but not sedentary) fairly quickly, I had a very good surgical outcome and a strong will to regain normalcy. As you know from reading these forums, we're all unique individuals and one patient's good (or poor) surgical outcome doesn't really affect another AN surgical patient's outcome. Too many variables.
Kudos to you Brian for your obvious concern and willingness to do what is necessary for your wife, Pam, as she prepares to undergo AN removal surgery. I hope my comments are of some use to you and of course, I send my wishes and prayers for a smooth surgery and rapid recovery to your wife. :)
Jim
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Hi everyone! Just thought I would give you an update. First off, thanks for all the great, supportive responses. I have printed out the lists of things to bring to the hospital and talked to Pam about the other comments. Especially the F3D (first 3 days don't count).
We have the flight arranged for Pam's Mom to come in a couple days before the surgery. She is staying about 3 1/2 weeks. At least, that's the plan for now. Pre-Op appointment is scheduled for this Wednesday (6/10/09).
We have been staying pretty busy with the kids trying to do some fun things to keep everyone distracted. We just finished a baseball tournament with our 6 yr old (2nd place American League!) and have gone swimming, to the zoo, and hanging out with our neighbors who are good friends of ours and will be helping out with the kids while Pam is recovering.
I am trying to help get things ready for the hospital stay. I am putting some classical music on Pam's iPod now.
Till next time,
Bryan
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Bryan -
speaking of iPods, you should look into getting Pam a mono plug and a single ear earplug @ a place like Amazon.com or Radio Shack. Usual cost for the two items is less than $10.
The translab approach will leave her SSD, and the mono plug will enable her to hear stereo sound from her iPod. Here's a link http://www.radioshack.com/product/index.jsp?productId=2102690&tab=summary
I've had my mono plug and single ear plug for almost 2 years now and it's definitely a wise investment.
Jan
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Hi Bryan and Pam,
I used to live in Texas as well - grew up in Corpus Christi, lived a short while in Houston, college in Nacogdoches, then Dallas.
I think you've gotten great feedback from everyone. I had translab 4 1/2 months ago. I had / have facial paralysis, but it's gotten much better, not as noticeable as it once was. I'm SSD, of course and some tinnitus, but better than pre-surgery (the hearing takes a while to settle into something stable - to me it always seemed to be chaning at first, even now a bit). You're out of it the first few days; I also had headaches at first. I started feeling better after a few weeks; fatigue does stay with you but gets better too. Time flies and I feel pretty well adjusted now. I've learned a lot through this experience and much of it is good. Regarding activities - I'm now running about as much as I ever was.
I'm glad you have your mom in law coming. I know when I got home from the hospital, just the fact I was home made me feel like I should be doing stuff - laundry, etc. I have three kids too but they're older. So having mom make you rest is a good thing!
We wish you the best and please keep us updated. Can we put the surgery on the AN calendar?
Keri
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Hi guys! Thought I would give you an update. We had our pre-op yesterday and looks like we are ready to go for surgery on Monday (6/15). We have to be there at 5:30am! Yikes! We usually get up around 5:00 anyway so I guess it won't be that bad.
In other news, we have had some bad luck with our dogs lately. I had to bring two of them to the vet on Monday. Turns out my dog Otis (Border Collie/Lab) mix has prostate cancer! Our other dog Sophie (Lab / Chow) was unable to walk. They said she had Geriatric Vestibular Syndrome, so no balance. Talk about irony! Unfortunatley, I had to have Otis put to sleep today. It looks like Sophie will be ok as her brain compensates (I guess we all know about that). All this was tough on the kids considering everything else going on but I think they will be ok.
I know the dog stuff isn't exactly related to this forum except for the extra stress. I hope you guys don't mind me sharing.
Thanks,
Bryan
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Bryan .....
Sure the dog stuff is related to this Forum, when it affects the family of one of us!!! ..... and vestibular problems for Sophie ..... what a weird coincidence. Maybe Sophie is having sympathetic symptoms. :-\ I'm sure this additional stress is hard on the kids but maybe it will also divert a little of their anxiety.
Well, the week-end will likely fly by for you and soon Pam will be on the recovery side of this journey.
My thoughts and prayers continue.
Clarice
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Hi Bryan,
A few years ago, I started a thread in AN Community about our "Staunchest Supporters" (see this link: http://anausa.org/forum/index.php?topic=1987.0) and just how much our "family" members mean to us.....and you will see that the 4-legged family members are just as key to many here.. as well as actually helping post-treatment (you will read about it in the thread). My deepest condolences to you all for Otis' loss.. and sending wellness wishes for Sophie (ironic, eh?)... and most of all... sending prayers and wishes during this time... and wellness wishes for Pam with her treatment coming up.
Hang in there....
Phyl
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Bryan~
Someone else...oh what is his name - I can see his picture - Sam Rush, I think...had a dog not long ago that had some sort of brain tumor. Very sad...something that you didn't need to have to deal with right now! Glad the pre-op stuff went well...were you able to get some questions answered?? Got you down for prayers on Monday (& up until and after then too)!
K
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Someone else...oh what is his name - I can see his picture - Sam Rush, I think...had a dog not long ago that had some sort of brain tumor.
Kay is right. I believe Dr. Sam's dog actually had an AN - just like Sam himself. What are the odds ???
Surgery scheduled for Monday? Wow, that was fast. I hope things go very well for Pam. Will you be updating us, Bryan?
Please give Pam my best wishes and tell her she'll be in my prayers.
Make sure you take care of yourself during Pam's surgery and recovery. Surgery is oftentimes hard on the caregivers, as well as the patient.
Jan
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Thanks for the support guys! I will keep you up to date. Hopefully you will hear from me by Monday or Tuesday. Fingers crossed and away we go! :-\
Bryan
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Well, Pam went to the OR about 15 minutes ago. Spirits are high. Everything OK so far. Nurse has my cell phone. I'll try to keep you guys up to date.
Thanks,
Bryan
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Bryan~
I was just thinking about you guys & saying a quick prayer for you. Is anyone with you? Is your neighbor still coming with lunch? Is the number I called you on the other day your cell? So many questions...hope everything goes well and that today is not too terribly long for you!!
K
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K,
Good to hear from you! Yes, my neighbor is still coming for breakfast and lunch. You can reach me on the same number (it's my cell).
Thx,
Bryan
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Bryan .....
Just letting you know I am keeping both you and Pam in my prayers today!!
Clarice
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Bryan~
Good...I just hated the thought of you sitting there all day by yourself! I will try to call or text later...
K
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Bryan - Anxiously waiting to hear your wife's ok. My thoughts are with you both! Alicia
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Still waiting on Pam. It has been about 11 hours now. The nurse has called every couple hours and said everything was ok. Her last update was about an hour ago and she said it would be another 2 hours. So I might have about an hour left. We will see.
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Hang in there! I hope you find out soon and get to see her for a little while.
Thanks for posting.
Keri
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Just texted Bryan to find out how things were. He said that the surgery was 11 hours (they had told them 8 before the surgery) and that they were able to get most of it. They left a "pea size or smaller piece" and will do GK on it later. The Dr. thought that she was probably a "Grade 4 on the facial nerve but I (Bryan) think it might be a little better." I'm not sure about her pain level right now...I told him to give her Chapstick - that always helps everything! Glad the surgery is over!
I let you know when I find out more!
K
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Thanks, K for the update,
And Bryan, glad to hear that Pam had a successful surgery. Further GK might be disappointing news, but she's alive and well!
Gentle hugs to Pam.
Take care of yourself, Bryan, OK?
She is in good hands.
Maureen
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Brian ~
Thanks for transmitting the good news on Pam's surgery outcome....and thanks to our obliging Kaybo for sharing it with us.
I underwent surgery (9 hours) and then, radiation to zap the remaining tumor. It isn't so bad and usually very effective. I trust Pam will do just fine and any facial paralysis will be temporary.
Jim
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Thanks for the update, Kaybo ;D
Bryan -
if you get a chance to read this, please know that you and Pam are both in our thoughts and prayers.
The first couple of days are definitely the hardest; things generally improve from that point on.
Jan
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Thanks again for the support guys. Big thanks to Kaybo for posting for me! Well it's been a little up and down the last two days. Yesterday the ENT/Surgeon evaluated Pam and said he thought she would be Grade 1 or 2 on her facial weakness within a few months. This was much better than we expected. I was very excited and told the family. Then today the neuorsugeon came in and told Pam he didn't think Pam would make a full recovery. Maybe I jumped the gun? Unfortunately, I was not there during the visit since I was eating lunch with our kids.
Pam has been walking to the restroom without much help and also wanted to sit in the chair for awhile. They talked about taking off her head bandage tommorrow. As expected she gets tired very easily.
We are hanging in there. I would like to hear your comments when you have time. This forum and especially it's members has been a big help.
Hanging tough in Dallas,
Bryan
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Hi, Bryan ~
Thanks for posting during this somewhat stressful time. You know its appreciated.
I was pleased to learn about the positive evaluation on Pam from the otolaryngologist (ENT physician) but was a bit dismayed by the neurosurgeon's opinion that she wouldn't make a full recovery, which, I assume, pertains to regaining full facial mobility. I would definitely ask him how and why he came to that conclusion. Perhaps - and I sincerely hope this is not the case - the facial nerve was irreparably damaged by either the surgery or the AN. Whatever his rationale, he has to have some basis for his negative evaluation. Why did the ENT doctor have a different prognosis? Naturally, you want to go with the more positive medical opinion but you have to be realistic and not raise false expectations for Pam. The only way to do that is to have a serious talk with both doctors to try to find a consensus and, one hopes, a more positive prognosis for the eventual return of Pam's facial mobility. It sometimes takes awhile, but others have experienced much success with regaining their facial mobility. Sometimes, if the nerve isn't really damaged, any facial paralysis is quite temporary...anywhere from a few days to a few months. We've seen all ranges of recovery from the folks who post here.
From this vantage point I can only offer hopes and, more importantly, prayers for your wife's full recovery. She seems to be progressing quite normally, so far. Let's hope that continues - on all fronts. :)
Jim
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Hi Bryan.
Joining the discussion a little late, but I'm glad you got lots of good advice from everyone. I'm glad your wife is doing well and getting around. I know as soon as that head bandage comes off, she'll feel like a new woman! And just wait for that first shower - heaven!!
Honestly, I don't think I'd pay a whole lot of attention to the neurosurgeon who says she may not make a full recovery. No one really knows how things will go after this surgery, they just make an educated guess. Keep hoping for the best and don't let what one person says get you down. I'll bet Pam will surprise you at how well she does. The fact that she has great support will help a lot.
And a little comment about the ages of your kids - mine are 21, 18, 6 and 3. And you wonder what YOU were thinking???? :D
Lori
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Bryan~
Thanks for the call last night - we got home late. I was going to text you this morning - I will call in a little while!
Good that Pam is up and moving!!
K
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Well, I finally got the computer out instead of trying to type on my phone... :P
Lori - Thanks for you comments (You guys are crazier than us!) ;D Hope your big family is doing well!
Jim - We have noticed the neurosurgeion has always been a little more pessimistic than the ENT. He did say after surgery that the facial nerve was intact and had continuity. It is stretched out now but I believe I have read that it could contract back to it's normal length. We do consider the ENT more of the expert in AN's. Our ENT will be out of town for a week so we will probably have to wait to talk to him again. We will have an appointment with him about 14 days after we leave the hospital. I am sure that we will have a much better idea of the prognosis by then. I expect to talk to the neurosurgeon tomorrow to get more info.
Either way it sounds like we will need to wait a few months to see how things settle. She looks pretty good now and I would be happy with any improvement. I just want her to get rested, be able to move on with her life, and be happy.
More later,
Bryan
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I can't believe she's up and moving around by herself already! I had help for days and always hated when my husband made me sit in the chair!!! Glad she has the energy and the attitude!!!
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Bryan .....
Good to get the latest on Pam. As for her recovery, remember our bodies are amazing and wonderfully designed machines so keep a positive outlook. Walking to the bathroom without much help at this stage is great! I used a walker for 5 days!!!
Our thoughts and prayers continue for complete recovery.
Clarice
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Well we hit a speed bump on this roller coaster. Pam's nurse noticed some leakage from her nose after Pam was walking around and when she was sitting up. She suspected a CSF leak and she was right. Good catch by her!
Between 9:30 and 10:00 tonight one of the doctors ,inserted a lumbar drain. Very painful for Pam. Much worse than an epidural (I know. I was there for all three). Pam was a trooper. She doesn't complain much but I know she was in a lot of pain. It's in now and she is resting comfortably. They will drain 20 cc's every 4 hours. She has to lay flat for about 1/2 hour afterwards. As most of you know this releases some of the pressure from the CSF in the skull and allows the wounds from the surgery to heal and seal. (I'm and expert now, yeah). :-\
This will delay her release from the hospital by about 3 days. Hopefully the lumbar drain will take care of the problem and we don't have any other complications.
Overall I am very happy with her progress. Keep your cyberfingers crossed.
Thanks,
Bryan
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Sounds good to me. The neurosurgeon has said it won't be a perfect recovery; well grade 1 or 2 will do just fine. Those are in the "only you notice it" category.
Bummer on the CSF leak, they just seem to happen sometimes. Pam is neither the first nor the last AN patient to get one of those. It will fix up in a few days.
Get some rest yourself, Bryan. Pam is going to be okay.
Steve
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OH NO...I guess the Dr. confirmed this when he came by after we spoke?? Sorry it was so painful for Pam (& you to watch, I'm sure)...hope she is comfortable now. Even though this is a bump, good thing it was caught so early and can be address now - as Steve said, many have had this & come out on the other side OK. Glad your MIL is able to stay for so long so that you don't have to worry about the kids too!
Be in touch!
K
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Hi Bryan,
Thanks for letting us know. So sorry about this set back. I hope this part passes quickly and she's on her way to recovery and feeling better soon.
Will be praying for you and Pam and your kids. How are they doing in all of this?
Keri
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Bryan,
I am glad to hear that Pam is resting comfortably after the "leak". You both are in my thoughts and prayers as Pam continues to heal. If I were Pam I would fire the neurosurgeon! I wonder what he considers a complete recovery? Some doctors need to tape record themselves and then really listen to what they have said. It probably wouldn't change all of them, but the thought that it may some of them is refreshing.
I hope you are taking care of yourself during this ordeal. Remember you need to be kind to you, too.
Brenda
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Quick update. The doctors are saying they would like to do the drain for 5 days. This means we will not be out of the hospital till Tuesday so we are calling in reinforcements for the weekend. Pam's sister will be coming to help relieve Pam's mom and me by taking some shifts watching the kids and staying with Pam at the hospital.
The CSF leak has seemed to slow so things are looking ok on that end. More later...
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Bryan .....
Good news that the leak seems to be lessening! Be sure to take good care of yourself while Pam is being taken care of by the medical professionals. She will need you to be in good shape when she gets home .......
My prayers continue ......
Clarice
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Two steps forward and one step back - seems to be quite common among the AN crowd.
The important thing is that the docs and nurses are on top of things and she's getting good care for whatever comes up. Lets hope this is the last thing to come up!
Lori
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Bryan ~
Like you, Pam and the others that have posted to this thread, I'm sorry to learn about the CSF leak that has set back your wife's recovery and extended her hospital stay.
Although cerebrospinal fluid (CSF) leaks only occur - statistically, anyway - in 10-15% of AN surgery patients, they can be problematic when they happen. Frankly, better this cropped up now, while Pam is still in the hospital, then later, when she might have had to be re-admitted, which can be discouraging once the patient is home and assumes they're recovering on schedule.
I'm pleased to read that the CSF leak is showing signs of slowing and I trust that this speed bump in Pam's recovery will be in her rear-view mirror quite soon. :)
Jim
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Bryan and Pam,
Sorry to hear of the setback with the CSF leak, but par for the course with the AN journey.
You never know what to expect. But sounds like things are settling down in that area.
This will make the recovery at some seem like a piece of cake!
Best wishes for non eventful days and no headaches.
Maureen
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This is Bryan's twin brother.
Talk to Pam on the phone last night. She sounded great. Sounds like she is doing better.
Thanks for all the support that you have offered to Bryan and Pam. He has really appreciated it.
Jesse
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Bryan & Pam,
I am late to this thread (computer issues) - so please accept my belated good wishes for a speedy recovery! :)
Sorry to hear about the 'bump' in the road with the CSF leak. Sounds like a wonderful nurse was able to help Pam with that quickly.
My continued thoughts and prayers are with you and your family.
Jesse - great to have you on-line, too. You are right, the folks here are WONDERFUL! ;D
Sincerely,
Sue
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Pam and Brian and Jesse (welcome!)... thank you so much for sharing the updates with us.. and sending continued wellness wishes to Pam. I know its been a struggle, now that the CSF leak happened, but sounds like she is on track and wishes for a speedy recovery continue.
Phyl
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Jesse .....
Welcome and thanks for jumping in with an update on Pam (and Bryan!). Our prayers continue for an uncomplicated recovery for Pam from hereon ...... keep that brother of yours well and safe!! :)
Clarice
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Hi everyone!
Well it's Saturday night and Pam is continuing to improve. No sign of the CSF leak since the lumbar drain was put in. The doctor's still want to continue the drain till Monday to be sure. They will stop the drain on Monday and monitor her for 24 hours to see if there is any sign of the leak. That's fine with us. We don't want to have to come back to the hospital if we don't have to. Fingers crossed. Still a little nervous about it. If the leak comes back they will have to go back to surgery.
Pam says she has feeling on the left side of her face. Mostly feels like a super heavy dose of Novocain. Her smile is not bad but the left eye does not close all the way right now. We expect some improvement as time goes on.
My sister in law spent some time with Pam today so that I could go home and see the kids. I went home, got cleaned up, played some games with the kids (Legos, baseball, etc). Then went to lunch and took a nap with my son. I brought our 12 year old daughter and 6 year old son to see Pam today. Pam and the kids were all a little nervous but everything was fine once they saw each other. 6 year old mostly played on the hospital bed. :D
I'll be here tonight but sister in law comes tomorrow morning. I'll spend most of the day with the kids tomorrow (Father's Day) and be back tomorrow night. I am trying to get some rest, Clarice, thanks for watching out for me. ;)
Till later,
Bryan
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Bryan (& Pam)~
So glad that things are going well and that the CSF seems to have slowed down!! Also glad that you have been able to get so much needed rest and time with the kiddos! Happy Father's Day! Are they still looking at Wednesday to go home??
K
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K,
Thanks! They are looking at Tuesday for checking out. We'll see. Fingers crossed. ;)
Bryan
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Bryan -
glad to hear Pam's doing well - despite a few little bumps in the road.
I'll keeping my fingers crossed that she'll be home on Tuesday.
Get some rest,
Jan
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Hi Bryan -
I am just getting caught up on events with you and Pam - wow, hasn't been a smooth ride, has it? Hopefully the CSF leak has been corrected by now - what a crummy thing to happen!
I'll echo what Lori and several others have said about the facial weakness - no one can really predict how long or how much it will improve. I was initially told "about 5 months" and it's been about 14 - but I have come from a nearly 6-grade facial paralysis to somewhere between 2 and 1, so it's all good.
If the docs didn't talk to you and Pam about caring for her eye, make sure that you are keeping it moist. You'll find lots of good info on the eye-care section of this forum, including a video I recently posted (eye care video). I think most would agree with me that eye care is the biggest pain in the rear, but it does get easier.
Prayers and hugs to you and Pam.
Debbi
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Hi Bryan:
Just checked this board after being off for quite a while. You are a wonderful support to your wife - it makes all the difference for her so keep it up :-) I had my surgery seven years ago when our boys were 4, 7, 10, 12, and 14 years old so it was quite a juggling act for my hubby as well but he was wonderful.
When Pam comes homes from the hospital, don't be afraid to accept any offers of help in the way of meals/cleaning etc. She is going to need a lot of rest and you will be exhausted just focusing on her well being and keeping the kids occupied.
Hugs to you and Pam....knowing what you are going through and you WILL get through this....one day at a time...
Cecile
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Wow, Cecile, what a crew! Good advice! I know when I came home from the hospital, it was good to be home but I felt like 'ok, now i need to do some laundry.' Sometimes it's hard to slow down, esp with little kids who don't quite understand. I hope she takes it easy and does get lots of rest. I'm sure your family is so happy to have Pam home!
Keri
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Thanks, guys!
FYI - The updates on Pam have been moved over to Post Treatment under the "bsharpintexas Recovery Thread" if you would like to see how she is doing now. :)
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hello there!
how is your wife doing?!! i'm not sure if you've returned here since her surgery a few weeks ago...i have a surgery scheduled in late july, so i'm just perusing the forum for info :o)
how are your kids doing with this, especially the youngest? (i have a 2 1/2 & 10 month old girls).
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Heidi,
Pam is doing great. The updates on her have been moved over to Post Treatment under the "bsharpintexas Recovery Thread".
The kids are doing well. We have a 12 yr old girl, 6 yr old boy, and a 21 month old girl. The 12 yr old has been the most stressed but has handled things pretty well. She has helped around the house a lot. The 6 yr old is pretty laid back and is ok. The 21 month old missed Mom while she was gone for a week but is fine now that she is back in the house.
Pam's Mom has been staying with us to help out and was taking care of the kids while we were in the hospital. It helps to have some family helping out. Especially if the kids are comfortable around them.
Good luck with your surgery. Let us know if you have any questions.
Bryan