ANA Discussion Forum
General Category => AN Issues => Topic started by: BarbaraS on April 14, 2009, 07:42:27 pm
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Hi everyone -
Laura (Magin) had her surgery today - and I just got the update that it went well, and that she is now in recovery. The surgery took about 9 hours (she went in at 11am EDT and was out around 8pm.) Laura's boyfriend is at the hospital with her and is graciously giving me updates via phone. It's hard for me to be so far away from her (I'm in NY and she's in AZ). I know this is a very knowledgeable group, so I will provide as many details as possible. I am still learning about AN, so any insight or comments on Laura's s condition, surgery, and recovery process would be greatly appreciated.
Apparently, they were not able to remove all of the tumor, as a small part of it was too close to a major blood vessel (and would have caused permanent facial paralysis). She will need to undergo radiation in a few months to shrink the remaining piece of the tumor. The doctors indicated that she will have temporary facial paralysis for a week or two, but that she should regain all feeling/movement.
When I spoke with Laura this morning, she was in very good spirits, and I know that was due in large part to the support she has from all of the wonderful people on this forum. I am so grateful to all of you for sharing your knowledge, experiences, and support.
I will post another update tomorrow evening.
Best,
Barbara
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Barbara -
thanks for the very fast - and very detailed - update. It was great that you agreed to be Laura's scribe.
I'm glad to hear that Laura is doing well. The idea of leaving a little bit of the tumor that will need radiation is a good one; good call on the part of her docs.
I'm looking forward to tomorrow's update.
When you get a chance to talk to Laura, please send her our best.
Jan
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That sounds great to me. Philosophically, not that the neurosurgeons/neuro-ots are asking me ;) for my amateur opinion, I agree with the more conservative approach in favor of nerve preservation. So this sounds like a wise strategy and a successful outcome to me.
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Barbara,
Thanks so much for updating us. I've been thinking of Laura all day and hoping to hear some good news. I'm glad it went well.
I had the opportunity to speak to Laura on the phone a few weeks ago and she is such a sweetie! We seem to have a lot in common - I used to live in Upstate NY too!
Tell her I said "way to go" when you talk to her!
Lori
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Hi Barbara, and thanks for updating us on Laura's surgery!
Since you asked for some insight ;), it sounds like the surgeon encountered a very sticky part of the tumor attached to the facial nerve. You mentioned a blood vessel as well. I'm wondering if it was the one that fed the facial nerve? That would make sense then, to leave part of the tumor behind and use radiation to kill it. Good surgeons know when to stop tugging at the tumor in order to save the more important nerves. Sounds like she had a good surgeon!
I look forward to your future updates, and eventually to Laura's first self post as a postie :)
Ernie
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Glad to hear that Laura's surgery is over and she is moving on to the next phase. I too am in favor of nerve preservation. My surgeons also left a tiny bit on the facial nerve that they couldn't get "un-stuck" but I don't think it is enough to radiate. Laura will be in our prayers as she recovers.
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Barbara,
Thanks for the update. Glad to hear that Laura is out of surgery and now her recovery can begin. Sending prayers her way for a speedy and complete recovery. Thanks for the update we look forward to hearing more soon.
Chris
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Yippee! I've been PMing Laura a lot in recent weeks as I wanted to get the Magic Scarf to her very soon after my procedure. I know she was nervous and must be extremely relieved to have the surgery behind her as am I. Give her my love as well. The journal will be on its way after the NE Brunch on Sunday for her entry.
Nancy
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Barbara,
I've been thinking about Laura all day. Whew! I'm so glad that you took the time to post tonight. Thank you so much!!
What a blessing that she is doing well. She had a large tumor, so I'm not surprised that a bit was left.
I am very fortunate to be able to see Laura at the hospital later this week (if all goes as planned).
The people at Barrow Neurological Institute have a fabulous reputation for being tops in their field; she is in good hands, Barbara.
Best,
Brenda
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Barbara, thanks for the update on Laura.
Radiation for the remaining bit will not be a big deal; it is almost like an outpatient procedure compared to AN surgery. As Brenda said, BNI is well known and very good - for both surgery and radiation treatment.
More best wishes for Laura as she recovers, and for you a welcome to the forum. :)
Steve
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Thanks so much, Barbara! We do always appreciate updates about our people - glad to hear she's in good spirits and doing ok.
Give her our best,
Cindy
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Thanks Barbara and give Laura a gentle hug from all of us here.
AWESOME outcome, given the size of the tumor. That was huge :o
Maureen
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I am sure the surgeons made the right choice. Thanks for the update. Wayne
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Thank you, Barbara for the update on Laura. Great to hear that she is doing well. As far as the Dr's leaving a part of the AN to be zapped with radiology later, several people on the Forum have gone that route and have done well. Give Laura our best.
David
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Hi, Barbara ~
Thanks for the update on Laura. I had surgery, then radiation and it worked out just fine. I'm confident it will for Laura, too. Give her our best and let her know she is being prayed for and thought of. :)
Jim
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Woo woo! Glad it's over and she's doing well. Give her our best.. Thanks for the detailed update!
Regards,
Brian
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Hello everyone -
I am thrilled that I got to speak with Laura tonight for the first time since her surgery! She is doing well and is hoping to be out of the ICU on Saturday. I shared your comments with her and she thanks everyone for the well wishes and prayers - and can't wait to get back online and talk with all of you herself. Here are some updates on her progress as of today (April 16):
- Her spinal drain looks good.
- The doctors said the tumor was larger than 4cm - bigger than what they usually see. She should able to start radiation in about a month.
- She is in a lot less pain today than yesterday and has needed fewer pain meds. She also did not feel as tired or drugged up.
- She has not been nauseated much (only a couple of times) and was able to eat solid food today.
- She is having a lot of numbness on the left side of her face, but it's a little better today than yesterday. The docs told her that if there is no improvement in her facial nerve in 6-8 months, they will take a nerve from her tongue to try to improve it.
- She has double vision, but that is also a little better today.
- She feels slow and uncoordinated, but thinks it's probably from the pain meds.
- The docs did not implant the BAHA as originally planned. The reason they gave her was that the BAHA was not in the OR, which she took to mean that the BAHA was not physically in the OR or that it had been ordered and hadn't arrived(?) - she's not quite sure. They told her that they would do it in 3 months or so. She is a little disappointed, but not too much, given how well everything else has been going.
- She has not gotten out of bed yet, but is hoping to give it a try tomorrow!
On a personal note, thanks so much to all of you for sharing your insights - it made me feel much better knowing that she was in such good hands and that what she went through in her surgery was not out of the ordinary. Brenda - if you do get to see Laura this week, please give her a hug for me!
I will speak to Laura again tomorrow and will post another update tomorrow night or Saturday morning.
Barbara
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Barbara -
thanks for the update on Laura. I found that I made definite progress each day post op and it sounds like she is doing the same. Yea!!
I'm a little confused by the spinal drain, but maybe Laura has one of those docs who put one in as a precaution(?)
I'm sorry to hear the BAHA wasn't available for implanting, but I had mine done after my AN surgery and it wasn't a problem at all. Once her head is healed enough - generally 3 or 4 months from now - she can schedule that surgery. It's very simple and painless - absolutely nothing like AN surgery.
Jan
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Glad to hear she's coming along nicely...thanks, Barbara. Yes, being able to get off the pain meds is a great step toward feeling better - good sign that the pain is easing and it helps to lift that drugged fog and nausea(for me, anyway).
Cindy
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I'm happy to hear Laura is going well and feeling a little better. Hopefully each day will get better and better for her.
Tell her we're all thinking about her and patiently waiting til she's back posting!
Lori
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Please tell Laura that we are all thrilled that everything went well! As Steve always reminds us, "the first three days don't count". So tell her to hang in there and things will rapidly improve, especailly now that a 4cm tumor is GONE! Great job!
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Glad she's doing well. I remember feeling slow and uncoordinated for several days (see my update thread because Jenni even expressed the concern here). That will pass with time. Also, the facial problems could go away with time also. Heck, I'm about a year out and I'm still getting improvement.. that part just takes a LONG time to get better. Don't let her get discouraged. I really had no inkling to do anything for several weeks, so that's not uncommon (at least to me). Bummer about the BAHA, but it's probably for the best anyhow to do it later.
Keep the updates coming!
Regards,
Brian
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Barbara ~
Your comprehensive updates on our mutual friend, Laura, are well done and much appreciated. I agree with the consensus here that Laura is progressing normally, following her AN surgery. That the BAHA base wasn't implanted is too bad but hardly a big problem. Having it done in conjunction with the AN surgery is more of a convenience than anything else. Laura has our hopes and prayers, as always. I trust she'll continue to improve each day and will be ambulatory by the week-end. Looking forward to your next informational update post. Thanks for taking the time and making the effort to do this for Laura. Your dedication is admirable. We should all have friends like you. :)
Jim
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Hi everyone -
Great news - I just spoke with Laura and she was moved out of ICU a couple of hours ago. They removed the spinal drain before she left ICU, of course (and I checked with her - her docs had done it as a precaution since the tumor was so large). She has been having minor improvements in all areas today: less pain (only needed meds twice today), very little nausea, and her facial numbness is slightly better. She is still experiencing double vision, and the doctors are having her wear an eye patch and alternating it from eye to eye every two hours.
Her blood sugar is still up from the steroids they gave her to reduce the post-op swelling, so they have been giving her insulin, but she thinks she may be able to go off it soon.
She said she expects to know a lot more tomorrow after she's had a chance to get some updates from her doctor. She remains in good spirits, but she seemed quieter and a little more tired tonight (although it could just be because I was chattering away and she couldn't get a word in edgewise!) :)
As always, thanks to all for the kind words and support!
Have a good night!
Barbara
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Sounds great Barbara! Glad to see Laura escape from ICU. Before you know it, she'll be on her way home!
I had the double vision the day and night of my surgery, but it was gone by the following day. Seems to be a common issue after surgery, but usually doesn't last too long.
Ernie
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Thank you for updating.
Please tell Laura that so many are praying for her and thinking of her!
Keri
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Since she just had brain surgery, she is entitled to be quieter and little more tired if she feels like it. :)
It sounds pretty normal to me, the first three days don't count anyway. For a tumor that large, she is doing great. Thanks for the update.
Steve
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She may be quieter and more sleepy today because all of know you can't get any sleep at all in the ICU - and as soon as you do doze off - you get stuck with something, or asked what day it is. Maybe she's taking advantage of the less frequent interruptions in a regular room to catch up on a few days worth of sleep!
Sounds like she's headed in the right direction and hopefully will be home and resting in her own bed very soon!
Lori
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Barbara ~
Thanks, again, for the timely and informative update on Laura. I'm so glad to learn that she was released from the Intensive Care Unit, which can be a tough place to get some rest.
Perhaps Laura is just taking advantage of the more serene atmosphere in a semi-private room to rest and relax, which is all good. From your account, it appears as if Laura will have a good recovery.
Once again, Barbara, you have our appreciation for your efforts. :)
Jim
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AWESOME
JO ;D
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Thank you for your very informative updates on Laura, Barbara. Since my last post, I have become ill with a cold. That means I will not be able to visit Laura as I had planned on doing. I'm sad about that, but happy that Laura is doing so well in her recovery. I will send lots of prayers and positive thoughts her way like so many are doing!
Brenda
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Hi everyone -
Here are today's (4/18) updates on Laura's progress:
- She had another MRI last night so the docs could see how much of the tumor was left - she is awaiting results.
- She had her catheter removed today and was able to take a shower with assistance.
- She was able to feel the left side of her tongue a little bit today (as opposed to yesterday, when it felt completely numb).
- She's still seeing double, but it seems to be getting a little bit better every day.
- She's been taken off IV meds and put on oral pain meds, antibiotics, vitamin C, and iron. She says trying to take pills while drinking through a straw is quite a challenge! ;)
- She hasn't eaten much at all today, as it's a lot of effort to try to chew and to drink through a straw, so she has been feeling nauseated/been sick from taking pain meds on an empty stomach. (As I was talking to her, they gave her some anti-nausea meds IV push.) Her blood sugar was also a little low today because she hasn't eaten.
- Her iron levels are very low, so they are planning on putting her on a 3-day regimen of IV iron. She reminded them that she had donated her own blood prior to her surgery, so they are going to check and make sure that it wasn't already used (for her in ICU or given to someone else). If it is still available, then they will give it to her in place of the IV iron.
- She also found out today that through some kind of mixup, that the BAHA was never ordered (which is why it was not available). Her response to that was that these things happen - we're all human. So true. Classic Laura - so sweet and understanding!
Apparently, the physical therapist came by today to do a preliminary evaluation and mentioned to her that she would be discharged tomorrow and moved to an acute care facility for a couple of days before going home. She had not heard anything like this from her surgeon or anyone else and is very concerned, as she does not feel ready to be moved. One of the nurses overhead the conversation and mentioned to Laura afterwards that she was unaware of this and would mention it to the doc. Laura is also going to talk to her doc and tell him that she does NOT feel ready to leave yet. I am really hoping this is just a misunderstanding. I can't imagine that she would be discharged so soon - she's barely ambulatory. Have any of you heard of anything like this before? I know insurance companies can be problematic, but this seems wrong to me.
She is in good spirits today and between visits from family, showering, PT, and talking the surgeon, she had been up for several hours when I spoke with her, which means she probably had a better night's sleep last night. She was pleasantly surprised that somehow she ended up in a private room, so I am hoping she'll get a good night's sleep tonight.
Laura has also asked me to reach out to Morgan Prust and Carol Franklin to make sure they have received updates about her surgery. Morgan and Carol - if you are reading these updates, please send me a quick reply to let me know. If anyone else on the forum knows either of them, can you please ask them to log on and send a quick note? Laura would really appreciate it.
Hope everyone has a good night!
Best,
Barbara
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Barbara~
Thanks for all the reports! Could she try drinking some Ensure so that she is at least getting some nutrients - you can just suck it up thru a straw...
K
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Barbara -
thanks for the update. I can imagine that Laura is in good spirits - just the shower alone is enough to do that for you post op ;D
Regarding Laura's concern about leaving the hospital too soon - she definitely should discuss this with her doctor. Doctors usually make sure they and their patients are on the same page about stuff like this. If Laura truly feels she's not ready, I can't imagine her doctor disagreeing with her - unless he has some very good reasons. There are certain benchmarks that a doctor looks for before releasing a patient - even if it's to an acute care facility - as opposed to her home.
I spent one more night in the hospital than my insurance company was in favor of and they originally told me they wouldn't pay for the extra day. But after my doctor explained the need to them they backed down. I hate to be negative, but insurance companies aren't in business to always do what is best for a patient - they are in business to make money. If there is a legitimate reason (or reasons) to not move Laura her insurance company should pay for the additional time. It may take some additional information from her doctor, but she should win this "battle".
Jan
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Please advocate that her next move be to her own home. She deserves to stay n that single room until she is able to take care of most of her own needs. She is immuno-suppressed and will be exposed to unwelcome toxins in a new facility. The neuro floors are less likely to be contagious.
Please tell her Nancy sends her well wishes.
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I finally found the postings regarding Laura's surgery, and it's all very, very good news. Please let Laura know that I have read all of the updates. It sounds like she's handling everything very well and that she is coming along fine. I think about her every day and knew from our conversations that she has the right attitude and disposition for handling this type of surgery. Continued good wishes to you, Laura.
Carol Franklin
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Hi everyone -
Here are today's (4/19) updates on Laura's progress:
- She is still awaiting the results from her latest MRI
- Her blood sugar is back to normal now (she's off insulin)
- The nausea is better - she only needed to take anti-nausea meds once today
- She's still not eating much, so she was going to have Ensure (or some other similar supplement) with dinner
- She had one dose of IV iron last night, but then was able to have a transfusion of her previously donated blood - and her blood levels looked good today
- She was able to get out of bed a few times today to walk to the bathroom (with the aid of a walker)
- She has a little more feeling in her tongue today and her speech/pronunciation sounded better
- She's still experiencing double vision
She said she felt very tired and slept a lot today, probably due in part to how long she was up yesterday, combined with a poor night's sleep (and of course, the fact that she just had surgery less than a week ago! :)) She was in a bit of pain last night and could not get comfortable. She was finally able to get some sleep after some pain meds, but she was definitely feeling the effects today. She was a little surprised at how tired she felt, as she thought the blood transfusion would give her a little boost a energy. I am hoping she'll have a better night's sleep tonight.
Her surgeon is going to evaluate her progress tomorrow, and she plans to discuss her concerns with him about being discharged too soon or being moved to an acute care facility before going home. She is also going to follow up with him about the MRI, the continued double vision, and the facial numbness.
She told me to tell all of you how thankful she is for this forum. Aside from all the incredible support she has gotten (and continues to receive), she feels that she was much more emotionally prepared for the surgery because she knew what to expect. She said that without everything she has learned from all of you, she might have been freaking out about the post op effects like the numbness and double vision, etc.
Brenda - I told Laura you would be unable to visit because you had come down with a cold - she says she hopes you feel better soon! Jan and Nancy - thanks for the advice on not letting them discharge her too soon - I passed your comments on to Laura and she is going to stress that to her surgeon tomorrow.
Have a good night!
Barbara
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Barbara,
When my dad had hip replacement surgery, about the third day his knee swelled up. The physical therapist said "uh oh", since he wouldn't be able to walk around enough to show that he was okay, and said they will move him to an acute care facility across the street. I think it just means that you are medically okay from the surgery, and just need a little more time under supervision before going home (so get out of our precious hospital bed).
In my dad's case, the doctor came in, stuck a needle in his knee, drew out all the fluid, and said "no problem." Dad started walking around, and came home the next day.
I'm glad to hear she is making progress on all fronts. Recovery speeds do vary, and it is not a race. She will be home soon one way or another.
Steve
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Hi Barbara,
My name is Morgan Prust, and I'm just now finding this discussion thread after a period of searching. I've been doing the Willing to Talk list with the ANA for the past several months, but this is my first time on the discussion forum and it's taken me a bit of time to figure it out and to find the thread about Laura's surgery. Needless to say, I was so relieved to find it and to hear that Laura's surgery went well. Please send her a big hug from me when you see her and let her know that I've been thinking of her everyday. I'm just getting caught up on all of the information that you've so thoughtfully been sharing over the past days, and it sounds like she's doing really well and toughing through this as well as one can. Having gone through this myself, I know how tough the recovery is from surgery, and it sounds like she's in the best mindset, going with the flow but staying alert about what's going on around her. What's been the resolution about when she'll go home? I'm sorry to hear about the BAHA situation. Thank you again for keeping us all posted, and as I said, please let Laura know that she's been very much in my thoughts.
Very sincerely,
Morgan
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Morgan Prust and Carol Franklin,
I was glad to see that you both responded to Barbara's request. I would like to invite you both to join in the forum discussions if you wish, we would be happy to have you.
Caring people are always welcome. :)
Steve
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Hi Steve,
Absolutely. I'm slightly new to the discussion forum format, but am glad to be getting involved and to be getting updates on Laura's recovery. Thanks for welcoming us!
Morgan
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Barbara,
Thanks for another thorough update on Laura. Sounds like she is hanging in there, and taking baby steps toward recovery. Sorry to hear about the need of an Iron transfusion.
Good thing she donated her own blood :)
I'm sure things will continue to get slowly better and she'll be out of there to hopefully an assisted type place until she is ready to go homeand welcome to Morgan.
Hi Morgan and welcome!
Maureen
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Hi Barbara,
Thank you so much for such wonderful updates.
We've been following Laura's progress and are so glad she is approaching discharge, however not till she's ready, and that she is staying in good spirits. Hopefully the Doctors will keep her where she is until they collectively agree it's time.
Keeping her in our thoughts,
Rich & Scarlett
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Hi everyone -
Here are today's (4/20) updates on Laura's progress:
- She had a bit of a bad today. It started out okay, but went downhill from there.
- She's still having double vision. She had OT this morning, and the therapist made her move her eyes (up/down, side to side) repeatedly, so, of course, she developed a pretty bad headache that has plagued her all day.
- She was able to take a short walk down the hall this morning with a walker; however, shortly after returning to her room, she vomited, and then had severe nausea for hours afterwards. They gave her an anti-nausea patch (one of the ones that goes behind the ear), but that did not work, and after she became sick again in the afternoon, they gave her some oral anti-nausea meds, which finally seemed to help.
- Because of the nausea, she has not eaten since early this morning. No one brought her any lunch or dinner, so I was wondering if they did that because she was getting sick? If they did, no one said anything to her - and when I spoke with her, she was feeling a little hungry (and hadn't been nauseated for a few hours), so I suggested that she ask for something to eat - or for some kind of nutritional supplement, at least. I am a little concerned that she's not getting enough nutrition. She has barely eaten the last few days, and while they have been giving her supplements, the lack of food must be contributing somehow to her weakness and extreme fatigue. Or am I overreacting? She has mentioned that even if she's not that hungry, she knows she should still try to eat something, so I know this is on her mind, as well.
- She spoke with her surgeons this morning, who told her that the MRI showed that they got almost all of the tumor; there is only a very small piece left.
- She also discussed her discharge situation with them, and they indicated that she would be able to move to a rehab facility tomorrow. There is a rehab unit in the hospital, and she stressed to them that she wanted to go there and not to an outside facility, and she thinks they will let her do that. (And when they told her that she would undergo rehab for 3 hours a day, she said she was exhausted just thinking about it! :))
- When she asked about the side effects (nausea, double vision), her docs told her those were common side effects given the size and location of her tumor. They told her that the more she got up and walked around, the more her eyes would adjust. And they told her that the facial numbness takes time, which, of course, she already knew.
After the day she had today, she is concerned that she will not be ready to be transferred to rehab tomorrow. I told her to see how she felt tomorrow, and if she felt strongly that she was not ready, that she needed to stress that to the docs.
Today was the first day I could sense her frustration with her recovery. She feels like her progress has stalled a bit, and she said she just wanted to know when she would start feeling better. She is tired of the nausea/vomiting, the double vision, and the exhaustion. She wants to get out of bed and start moving around, but was disheartened over how sick she became after her short walk down the hall this morning. She said she really expected to be feeling better at this point, especially since so many others on the forum had shorter hospital stays, faster progress, etc. I told her that everyone recovers at their own pace, and that she just needs to focus on herself. She always has such a great attitude - I hate that she's feeling down. It's understandable, of course, and I know every process has its ups and downs, but it still makes me feel bad.
I share all of your comments with her every day, so any advice or words of support anyone has to help her get over this bump would be greatly appreciated.
Thanks, and have a good night,
Barbara
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Poor thing, I feel for her :'(
Maybe recommend taking the anti nausea pill repeatedly throughout the day since it seemed to help. Then she can hopefully get up and walk more.
And ask for crackers, seven up, along with the calorie drink. They actually are like a whole meal.
Things should get a little easier each day. Baby steps.
Keep truckn, Laura :)
Maureen
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Well, the first week is usually the worst, if that's any help. :P
I hope she manages to start eating a bit, and walking a bit. Even if it makes her feel poorly, it will help her recover to the point where she can do those things without feeling poorly. The anesthesia can do a number on the brain, as can the brain surgery, so nothing is really that surprising in her symptoms, as the doctors have said. While some lately have had amazingly quick recoveries, there are plenty of members who have been through the grinder. I'm sorry she is having a tough time, but I'm sure she will get past it soon.
Please give her our best wishes,
Steve
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Barbara,
You are an amazing friend. I am going to reverse my position on Laura's care and say, "Get her out of there!" I'm starting to think she needs a change of scenery. My double vision lasted until two days after being home. Maybe the rehab center will be a breath of fresh air. I highly recommend getting out of bed whenever possible. Don't be overstimulated by visual, audio, or psychological input. Eat, if at all possible, small, frequent nutritional meals. Fresh fruit and fish pave my road to recovery.
I'll be scanning the journal today and mailing it to her home tomorrow. It will be there by Friday, and so will she!
Nancy
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So sorry to hear Laura had such a bad day - the nausea is the worst. I had to have two different anti-nausea meds that they rotated and gave me every 2 hours intraveneously. I ate only very small bites every once in awhile. But, it should subside a good bit before too long. I did continue to take the nausea meds for a few days after I was released from the hospital, but it was nowhere near as bad as those first 4-5 days.
Tell her to hang in there, and know that she is on her way to feeling much better very soon!
Cindy
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At thw slightest inkling of being nauseated I asked for Gravol intravenously....I did manage to eat on the second day post op...Not that I was hungry but knowing food fueled my body therefore I ate...Four days post op I wanted french fries...which I go....
I was scared to eat without the gravol....Luckily not once did I upchuck....
JO ;D
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My prayers are with her! May she feel better soon. Mickey
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Oh, I am so sorry Laura is having such difficulties!
Barbara, you are exactly the kind of friend everyone in this world needs. I know you are a huge support to Laura. Stay strong for her.
Please let Laura know we are all pulling for her.
Brenda
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Barbara ~
As always, our thanks for your informative updates on Laura. Although some AN surgery patients do have seemingly miraculous recoveries with very brief hospital stays, that is really not the norm. I had an excellent recovery but spent 5 nights in the hospital, including 4 in the ICU, and I had minimal complications. At a cost of $5,500 per day for the ICU, I'm sure my insurance company wasn't too thrilled. Me neither. Nausea, headaches and double vision are fairly common post-op experiences for AN patients. I didn't have the nausea (but I didn't have much appetite, either) or headaches but I experienced the double vision for a few days. Fortunately, it resolved by itself, as it often does. Of course, Laura should try to eat but I have no suggestions on what she should try to eat. I'll leave that to others more familiar with these situations. Moving around - walking - is usually very beneficial a few days post-op, as just lying in the hospital bed can have a deleterious effect when the muscles are not used. But when walking generates nausea, that makes it problematical. If Laura doesn't eat, she'll be weak but if she eats and walks, she'll likely become nauseous. I would speculate that Laura might want to attempt to eat just a little then walk just a bit- and hope that her body responds well to this approach. Moving to a rehabilitation facility (in the hospital) seems to be a good idea but Laura will need to be ambulatory and able to eat enough to keep up her strength. I trust this will happen.
Your dedication to Laura is notable as well as moving. Laura is a lucky lady to have you as her friend, Barbra. Once again, you have our collective appreciation. :)
Jim
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Barbara,
Thanks so much for keeping us updated. I can't add much more for Laura than what has already been said, but I will continue to pray for her. I also want to make sure you are getting the rest that you need. I'm also worried that this is taking it's toll on you, and hope you are finding enough peace to get some rest.
Ernie
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Barbara,
I worked in a hospital that had an acute care rehab and did a long rotation there as a PT. I think it's a great idea. It's kindof a middle ground - you're not sick enough to be in the hospital and you really don't need a ton of medical care but you're not quite ready to be turned loose yet. I'm guessing she won't be there long - it'll just be a matter of getting her strength back to where she can get around safely at home.
I know 3 hours of therapy sounds like a lot, but it's not all at once! They'll break it down so she has some in the morning and some in the afternoon - and most of it will probably be just getting her walking again - she won't be pumping iron or running on the treadmill!
Tell her things will get better.
Thanks for the updates!
Lori
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The setbacks and awful nausea are upsetting for sure. But, she had a very large tumor and a long-ish surgery, so it's understandable she's not leaping right out of it. It also seems positive that she seemed to be making good progress in your previous updates. So hopefully it's just a 2 steps forward, 1 step back kind of thing and she will be gaining ground again very soon.
As a student of AN posts, I have noticed that there is not a linear progression upward immediately after surgery, but rather surges and setbacks. Hope this setback is followed by a nice surge forward in the coming days.
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Hi everyone -
Here are today's (4/21) updates on Laura's progress:
- I am thrilled to report that Laura had a MUCH better day today - hooray! ;D
- She had a good night's sleep last night, woke up with no headache or nausea, and actually felt like she had a little energy. She developed a mild headache and a little nausea as the day progressed, but she says it's manageable, and still much better than it has been the last few days (especially yesterday!)
- She ate a good breakfast today - some cream of wheat, some eggs, and a little bit of pancake - and felt good afterwards.
- As soon as I heard her voice, I was amazed at how much better her pronunciation was today. She said she has a little more feeling in her tongue and in her lips, and that certainly was evident in her speech - a marked improvement over previous days.
- She was able to shower with assistance today.
- She took two walks around the unit today - one with a walker, and one a few hours later with the assistance of the PT. She felt good both times. The PT also had her stand without assistance with/without her eyes closed and she did very well.
- She developed some mild nausea after lunch that has lingered throughout the day, but she said it wasn't bad enough for her to want/need meds.
- The double vision is a little better today. She turned on the tv for the first time today, and after looking at the screen for a minute, was able to focus enough where she did not have double vision. And she said when she looked away from the screen to try and focus on anything else, the double vision came back. I found that very interesting - amazing how the mind works.
- The docs gave her some plastic glasses with a small piece of tape over the left eye that she said she was supposed to be wearing to help the double vision. I pointed out to her that she had said "supposed to be," meaning that she wasn't actually wearing the glasses - and she laughed. I told her that she probably looked really cool in them so she should put them on to impress the staff and visitors. ;)
- She had her third (and last) iron IV today, and they removed her last IV line today - a good sign!
- She was going to have tomato soup for dinner (yum!) I am so happy she has has been able to eat today, as is she.
- Currently, she is still in the neuro unit. Apparently, her insurance company did not approve her rehab today, so she is unsure where she will go tomorrow if it does not get approved. She is going to talk to her doc about it. She would like to be able to spend a couple of days in the rehab unit getting her feet under her a bit more, but she said if she feels as good tomorrow as she did today, it wouldn't be too bad to go home. Her only concern would be if she needed to go to an outpatient rehab, as travel arrangements would be challenging. She was not stressing about it, however. She is just going to wait and see what tomorrow brings.
I am so happy tonight about her progress - and I am so happy to share it with all of you. Wow - such a change of emotion from last night!
I can't thank you enough for all the kind words and constant support you've shown for Laura - and for me. I was feeling down last night about her setback, and you all offered insights, provided perspective, and lifted my spirits - and hers, and for that I am incredibly grateful. And I am very moved, flattered (and a bit embarrassed) about all of the very sweet things you have said to me about my friendship with Laura. I thank you so much, but I just feel like I am doing what anyone would do for someone they care about. I feel very lucky to have her in my life - she is an amazing person - and she means the world to me.
Hope everyone has a great night!
Barbara
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Oh goodie, I am very happy to hear the good news about Laura. ;D
It sounds like she has turned the corner. I know they send people home way before it seems like they are ready, but most people find that being home is so great, it is worth it, even if it makes you a little nervous. My dad had a PT come visit him at home several times, which eased his mind and helped with the first few days.
Thanks again for the update, Barbara.
Steve
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What wonderful news about Laura's progress today!! I had a few days of postings to catch up on, and after hearing about her difficult days with challenges of nausea, double vision and lack of appetite, it was wonderful to turn to Barbara's posting with the good news. What a relief!! It reads like chapters in a book, and I can sense the positive outcome at the end. I clearly remember that my attitude changed from one day to the next from when I still felt sick in the hospital and then the next day I felt ready to go home. Mysterious things go on when the body is healing from such trauma.
Please tell her that the rehab will be advantageous, too, even though it sounds daunting.
Keep your chin up and your eyes on your future, Laura. You're doing an awesome job in your recovery.
Carol Franklin
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That's the best news! I've been telling my friends and family about Laura's post-op struggle. It seems she's made a huge leap forward.
Please let her know that the journal is on its way to welcome her home.
I requested discharge a day earlier than they had planned to release me, and it gave me a boost to normalcy. I wish the same for Laura.
You've done a wonderful job recording Laura's story; reading other stories is the best preparation for patients who follow.
Thank you.
Nancy
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Great news. There is really no place ike home.. I to was afraid to come hom to early, so they kept me in for another 3 days...being Easter Weekend. I'm no sorry i stayed for the few extra days but really home would have been better. I am glad she is eatin as our bodies need the 'fuel' to recharge itself. Even thou I wasnt hungry I knew I had to eat. Then u couldnt keep enough food in front of me....lol...as long as I had food I was happy. I even strolled to th hospital kitchen and got crackers and applesauce.
JO ;D
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Although some AN surgery patients do have seemingly miraculous recoveries with very brief hospital stays, that is really not the norm.
Nausea, headaches and double vision are fairly common post-op experiences for AN patients.
Very, very important points.
I had the double vision and horrible nausea - couldn't even keep water down - but I found that things got better every day. Laura is a perfect example of that.
I'm so happy to hear that yesterday was a good day for her and that's she's on her way to being released.
You have done a tremendous job of updating us on her progress, Barbara - very detailed and specific. Thanks for being such a good friend to Laura.
I'm looking forward to Laura's first post as a postie and I'm confident it's right around the corner.
Please give her our best,
Jan
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Hello again, Barbara ~
Like everyone else, I'm very pleased to learn of Laura's progress. Apparently, her recovery is moving along reasonably well and that always generates patient optimism and the motivation to keep it going on a positive track. I call this the 'return to normalcy'. That usually begins with just being able to eat something and get out of the hospital bed and often culminates in going back to work, driving and otherwise resuming your 'normal' life. However, its 'one step at a time'.
When I was in the hospital, recovering from my AN surgery, my goal was to be discharged and go home just as quickly as possible. Because I was 'out of it' and slept for most of the first 48 hours, post-op, I didn't really try to become ambulatory and demonstrate my competence to go home immediately, but once the effects of the anesthesia wore off and my body had a chance to rebound from the trauma of surgery (by sleeping a lot) I was determined to get my life back, and that life was not going to be lived in a hospital. Fortunately, I was able to be discharged within 120 hours (5 days) of my surgery and my recovery went well.
Please convey my encouragement to Laura (along with that of everyone else) and the hope that her recovery will continue to progress and she can be home again, soon. :)
As always, thanks so much for taking the time and making the effort to update Laura's AN friends, here. It is much appreciated.
Jim
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Yippe :D,
Great news! Time heals, and I"m sure she's feeling the effects of the iron and blood transfusions.
What a relief!
Sounds like she may be ready to go HOME.
Does she have someone who would be able to be with her?
I'm sure they could give her the vestibular exercises and it is a matter of resting, pacing yourself, and just letting recovery take its natural course, which as we know, VARIES from person to person!
Good luck Laura, and I'm glad you're feeling better.
You too Barbara- glad you're feeling better that Laura is feeling better!
Maureen
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Hi everyone -
Sorry I did not get a chance to post last night. Here are yesterday's (4/22) updates on Laura's progress:
- She had another good day yesterday, and said it was the first day she actually felt well. She had more energy and was in very good spirits when I spoke with her.
- She ate 3 full meals yesterday. She had mild nausea and a headache after breakfast, but after taking some meds, felt much better. Her doc said that the recurring nausea was because of the post-op swelling, and the nausea should go away as the swelling subsides.
- She took 2 walks around the unit yesterday afternoon - one with the OT and one with the PT. For the first walk, she used a walker for part of the time, then walked unassisted - and did well. For her 2nd walk (with the PT), she tried a cane instead of the walker. She was wobbly at first, but then had better balance. She also walked part of the way unassisted. She did well with her PT exercises, but admitted that she felt pretty tired afterwards.
- She was planning on taking another walk last night after we got off the phone.
- She said the plastic glasses with the tape over the left eye (that I have dubbed the "groovy glasses,") have been helping her with the double vision, but she still felt more comfortable looking at the floor on her walks. She can only wear them for a few hours at a time, though, because they are not overly comfortable. No surprise there. :)
- She will probably have one more round of blood work today to check her iron levels, etc.
- I was surprised that she was still in the neuro unit when I called last night (as was she). Apparently, her insurance company was still denying the transfer to rehab, which I personally think is counterproductive on their part, as the neuro unit must be more expensive than the rehab unit. (But, as we all know, insurance companies don't always make sense!) She is expecting to move today - but whether it's to rehab or home is unclear at this point. I think she would be fine with going home today, as long as she could have the PT visits at her home.
I'm so happy with her continued progress! I'll post another update after I speak with her tonight.
Hope everyone is having a great day!
Barbara
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Barbara -
it's so nice to read about Laura's continued progress. She's certainly come a long way since you first started posting about her recovery.
I hope more good news is forthcoming and that she'll be sent home very soon.
Jan
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Great news! Been watching for our update.
I just know she's on her way home and to feeling like her old self.
The journal should be delivered today.
I'm hoping she goes home to her comfort zone where familiarity boosts a return to normalcy.
Tell her we're proud of her strength and hard work to get herself back on her feet.
Nancy
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The news just keeps getting better and better, well, except for the dumb insurance company.
Tell her she is still in our thoughts and prayers, as are you Barbara.
Ernie
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Hi, Barbara ~
Our gratitude for your continuing updates on Laura remains undiminished. :)
Laura is clearly 'coming around' and showing much improvement. Walking unassisted is excellent progress, as is eating fairly normally. Insurance companies! Go figure.
Jim
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Hi everyone -
Here are today's (4/23) updates on Laura's progress:
- The good news just keeps coming - Laura had another really good day today!
- Her insurance company finally approved her rehab, so she made the move to the hospital's rehab unit around 5pm. She no longer has a private room, but she is fine with that, since she had the luxury of a private when she needed it most - plus she doesn't plan on being in the hospital much longer. :)
- She has a PT evaluation tomorrow, and she will get a better idea about when she'll be discharged. She is hoping that she will be able to go home this weekend - another great sign about how much better she's feeling!
- Not only did she eat all three meals today, but she ate more, and had a good appetite.
- She was able to take a shower today unassisted.
- She is still having occasional nausea after eating and a headache when she wakes up in the morning, but meds take care of it pretty quickly.
- She has a lot of soreness in her arm where her IV line was, but I'm assuming that will go away fairly quickly. That must be pretty common, right?
- She took 2 walks again today. Like yesterday, she started with the walker both times, and then she walked part of the way unassisted - and did well.
- The double vision is a little better today. In my non-expert medical opinion, I told her this was due in part to her "groovy" plastic glasses with the tape, which when I spoke with her, she was not wearing. She didn't know where they were - she said they were either packed or got lost in the move to the rehab unit. I laughed and told her that she lost them on purpose because she thinks they are goofy looking. ;)
- She said the facial numbness was the same, but I thought her speech sounded even better today.
All in all - very good news. She was cheerful tonight and we laughed a lot - it makes me so happy to know that she's feeling more like her old self!
Have a good night!
Barbara
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Although I bet the taped glasses are groovy, I am pretty convinced that a symptom like double vision clears up on its own schedule, regardless of what devices you wear. Usually pretty quickly, I think, although not always. I think the main things to do are breathe, drink water, eat some, and move around a little. Nature will do the rest. :)
The best news is that she is laughing again. With her spirits restored, the rest will follow shortly. Your phone calls are helping more than you know. :)
Steve
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Barbara,
Please pass along to Laura that the IV tenderness and bruises last a long time, so don't fret about them. Also, I see no end in sight for the numbness. As I understand it, that's a matter of nerve regeneration and healing. The whole area around and including my ear has that dead feeling like when you sleep on your hand. It's creepy, so I just try not to touch it.
She sounds ready to go home to me.
Thanks for your diligent care. I'm glad things are better for your sake as well.
Nancy
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Barbara,
Please pass along to Laura that the IV tenderness and bruises last a long time, so don't fret about them. Also, I see no end in sight for the numbness. As I understand it, that's a matter of nerve regeneration and healing. The whole area around and including my ear has that dead feeling like when you sleep on your hand. It's creepy, so I just try not to touch it.
She sounds ready to go home to me.
Thanks for your diligent care. I'm glad things are better for your sake as well.
Nancy
FWIW, I found that while my IV wounds healed quickly the area remained sore until I was weaned off the steroids. Once off the steroids the soreness cleared up quickly.
Cheers,
Neal
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Oh! Thanks, Neal. I just finished my steroids yesterday, so that's something to look forward to. I'm looking at that erg, but not sure my brain crashing around in my cranium is a good idea yet.
Nancy
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Nancy..
I finished my 1/2 apill of steroid 3 days after coming home. So last friday...I was not prescribe any meds other then the 1/2 steroid once a day...I only take tyleno or the likes on a an as needed basis which is rarely...they make me groggy so I stay away from them if I can...I practice my deep breathin (yoga) techniques which help alot. MY left side is still weak which makes typin a chore...
But all is good...Beau is taking me to dinner tomorrow night...
JO ;D
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Barbara ~
The news about Laura just keeps getting better and better! The taped glasses did sound goofy-looking but, as Steve mentioned, the double vision usually clears up spontaneously. Mine did and that was the case for many other AN surgical patients. The facial numbness should also abate with time. The arm bruises from the IV will last awhile. Mine took a good two weeks to diminish. I guess the skin is relatively thin there - but the bruises will disappear. I'm hoping Laura is discharged this weekend. Home is always good medicine. :)
Thanks once more for your informative updates.
Jim
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Barbara~
I was way behind on this thread so i had to get caught up all at once and I am so glad that the ending was better than the beginning!! ;D
Continued well wishes for a great recovery from here on out!
K
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Barbara~
I am thrilled that Laura is doing so much better!! Oh, happy day!
I will send every good wish that the transition to home will be as smooth as possible.
Brenda
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Hi everyone -
Here are today's (4/24) updates on Laura's progress:
- She woke up with no headache this morning for the first time - and she has not had a headache at all today. Yea!
- She ate all three meals again today. (Mmm... mashed potatoes...)
- She had an ultrasound on her arm (the former IV line arm) and they determined that she had a blood clot, which was contributing to the extreme soreness she was having. They gave her some ibuprofen, had her elevate her arm, and put warm compresses on it. This has been helping - the swelling, redness, and soreness have gotten a little better throughout the day.
- She is now allowed to go the the restroom by herself as long as she uses the walker (or the wheelchair if the walker is not there). Hooray!
- The groovy glasses have gone missing! They were not in her bag, so they must have been left behind in the other unit (or stolen by someone who admired how cool they were! Okay - probably not. ;)) Never fear, the OT will bring her another pair tomorrow.
- The double vision is about the same today, however, she saw one of her nurses today from the previous unit, and the nurse pointed out that Laura's eyes seemed much better (in the sense that they were not jerking back and forth as much).
- She had no nausea until PT this morning - then she got sick almost immediately afterwards. They gave her some meds, which stopped the nausea/vomiting. Extended movement/activity consistently seems to trigger it, so she is going to ask for the anti-nausea meds before PT tomorrow in an attempt to keep it at bay.
- She took two walks today for PT - and did the same process as yesterday - part of the way with a walker and part of the way without (although she told me she needs to maintain light contact with the handrail to try to keep her balance).
- Other PT exercises included practicing getting out bed/sitting/standing with no hands, and practicing walking up and down the mini-stairs. She did well with all of these; however, the PT told her she was very off balance. The PT said she would be reevaluated next Thursday. Laura recognized today just how off balance she is and that if she went home right away, she would inevitably fall over, even with her caretaker there. She does not want to stay in the hospital until Thursday, but is going to take it day by day and see how the weekend goes.
- She is going to take another walk tonight to work on her balance.
She had a few wobbles today (so to speak) but overall, it was another good day. She is happy and working toward going home.
Have a good night!
Barbara
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Hi Barbara!
Thank you so much for Laura's updates - they are so detailed and i was glad to read them all! Sounds like she is moving around better and better each day, and no more headaches, yea! I am glad she has in-house rehab facility to help her thru the final hurdles before going home. When my sister had hip-replacement surgery a number of years ago (at the age of 40), they tried to send her to a nursing home afterwards.... The suggestion was not emotionally uplifting and my sister refused and went straight home. She did so well in her own home, surrounded by her family and caregivers, it was amazing!
I am hoping Laura is able to go home soon, because i do believe there's no place like home.
All my thoughts and prayers for Laura's continued speedy recovery!
Sincerely,
Sue
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Yay Laura! Keep it up, you'll be home soon.
Marci
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Nice to hear about the improvements!
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Hi everyone -
Here are today's (4/25) updates on Laura's progress:
- She continues to sleep well and had no headache today for the second day in a row. (And she has not taken any pain meds since yesterday morning - awesome!) She had a self proclaimed "lazy" day today - she watched some tv with her kids, and took a nap. Good for her. :)
- She is eating well, and has been eating more "utensil food" the last couple of days. Today was the first day she could eat her cream of wheat with a spoon instead of a straw. Yea!
- She was able to shower completely unassisted today.
- She took anti-nausea meds this morning after breakfast (before taking any walks) and has not had any nausea at all today.
- She was disappointed to find out that she had no PT today. She knew she wouldn't have it tomorrow, but she was bummed about today. She said she felt that the weekend was wasted because of it. I told her it didn't need to be a waste - and suggested that tomorrow, in addition to her walks, she do some of the exercises the PT gave her, e.g., practicing sitting/standing, walking, etc. (with supervision, of course). She is planning on doing that. And she is going to tell the PT on Monday that she wants to go home by Wednesday, at the latest.
- She took two walks today, both with the walker. She is planning on taking another walk tonight. She feels noticeably weaker on her left side, and wants to practice walking as much as she can.
- The double vision remains the same. The docs want her to visit a neuro eye doctor when she gets discharged so she can get a prescription version (i.e., more attractive with no tape over the left eye) of the groovy glasses to wear temporarily.
- Her arm is feeling much better today. In addition to the ibuprofen and warm compresses, they gave her an anticoagulant shot in her stomach yesterday, and will continue to give her one every day until she is discharged, to keep her from getting another clot. She said the shot STINGS!
- She can feel just about all of her tongue now, but still has numbness on the left side of her lips and face. She agrees with what some of the other forum members have said about their numbness - it feels very strange - she doesn't like to touch that part of her face. And she said it felt creepy when the water was hitting her face in the shower and there was a "dead" spot where she couldn't feel it. A bit unsettling. In the last couple of days, however, she has noticed a change in her left cheek that she described as "almost tingling." Does that mean she's getting some sensation back? Have any of you experienced this - total numbness that then turned to tingling? She and I are both curious about this. She is going to ask her doc on Monday, but she figured many of you may have had the same or a similar experience.
One update had both of us in hysterics. She said when she woke up this morning, she discovered that a yellow band had mysteriously appeared on her wrist that said "fall risk." While this is true, and a good thing to have noted, what was funny to me was that they had put it on her while she was sleeping. I told her that it reminded me of one of those nature shows where they sneak up on an animal, sedate it, and then tag it so they can track it later. Laura had been given the Wild Kingdom treatment! LOL!
On that note, hope everyone has a good night! ;D
Barbara
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Barbara,
I have to say, there is something about the way you write your updates that makes me simply enjoy reading them. Are you a writer?
I am glad to hear about all the improvements. It sounds like most things have cleared up reasonably well. Is the trouble walking one of balance, or as you mentioned, one of weakness on one side? Laura had a large AN, so having more severe symptoms in that category is not that surprising. It may take a little time, but I'm sure she will get back on her feet in the end.
There is a member her named Trish, logging on as calimama, who had double vision for a while after surgery. If Laura's persists, Trish might have some tips for how to deal with it and how to nudge it along to resolution. I never had the numbness facial thing, but I have read enough posts here to know that all sorts of funny little things can happen. The tingling could well mean that feeling is returning.
I hope she has another good sleep, and doesn't have to get tagged by the game keepers every night. :)
Steve
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Oh, that's hysterical. You two must be something when you are together. I agree with Steve that your writing is superb.
I have only slight numbness in my face but absolutely the creepy dead thing in my ear and surrounding tissue. I'm not used to touching it yet when I shampoo and don't like others to touch it, so tell Laura not to worry about it. I'll let her know how long mine takes to recover. The doctors said it would a long time since all the nerves were involved in the incision and must heal.
I'm glad Laura had a day with her kids. I hope she's taking a few photos to share and to help her realize how far she's come already.
Thanks again, Barbara, for keeping us connected.
The MAGIC SCARF is on its way to LA to wrap itself around Laura the marathoner allegro17 and bring her good fortune.
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Another fab update.
Thanks Barbara and give best wishes for continued slow healing. There's no reason to rush this process along!
Hopefully she will get to go HOME soon. One step forward, 2 steps back, seems to be the story, but she's getting there!
Baby steps! I'm just so glad for her that they did not have to cut the facial nerve..She will slowly get back to a NEW LAURA person, and it will be OK!
Hugs,
maureen
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Thank you Barbara for your updates. You're thoroughness is wonderful and it's so nice to get such thoughtful and reliable information each day. Please give Laura a big hug from me, and tell her that I know what she's going through, but that it sounds like she's continuing to make a good recovery despite the little bumps along the way. I'm glad to hear that the blood clot was found and is being treated, and that Laura is starting to move around more comfortably. Thanks again for keeping the news coming!
All my best,
Morgan Prust
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Hi, Barbara ~
Yet another encouraging update on Laura! Suffice it to say that I'm delighted to learn that she is showing very steady improvement and, I expect that she'll be discharged well before Thursday. Let Laura know that she is in our thoughts and prayers. Also know that your continuing updates are informative - and delightful reading, as well . Thanks, again. :)
Jim
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Hi,
The tingly feeling means that the nerves are doing SOMETHING, but what exactly and what that leads to is very individual. I still have this 9 months out and hope that it means that things are trying to repair themselves. Keep up the good work Laura and thanks Barbara for keeping us posted.
Marci
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Barbara,
I too very much enjoy your well written updates. You have a way of making me feel as if I was there receiving the update myself :). Thanks so much for keeping us informed.
Laura,
I think you are doing wonderfully! I know you still have some hurdles to get over, but what a difference from the first updates we received. I think it's great that you are hopeful to go home by Wednesday. I think a lot of healing happens when you are finally in a familiar environment. We will continue to pray for your complete recovery.
Ernie
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Hi everyone -
Here are today's (4/26) updates on Laura's progress:
- She had another "lazy" day today. She slept well last night, but woke up at 5am when the nurses came in to draw blood, and then could not fall back asleep. (They did not attempt to tag her again with another wristband. ;))
- She has had no headaches for three days now, and has stopped taking pain meds.
- She's had minimal/no change in the double vision.
- Her appetite continues to be very good. She had cream of wheat (with a spoon!), french toast, and bacon for breakfast this morning, watched a movie on tv, then took a two hour nap. Sounds like a perfect Sunday morning to me!
- Her roommate (who barely uttered a word and kept the curtain closed at all times) was discharged today, and she now has the room to herself. She's hoping that continues for the rest of her stay, but if not, she's keeping her fingers crossed for another silent roomie. I don't know what the odds of that are, but she certainly has had tremendous luck on the roommate front so far.
- She ate an uneventful lunch and then prepared to take a shower, which ended up being quite the event. She went back and forth to the bathroom several times because she kept forgetting things, and made herself nauseated in the process (good walking practice, though). She took some anti-nausea meds and went back to bed for a little while until they kicked in. Once she felt better, she took a leisurely shower (like a half hour!), during which time no one bothered to check on her for being on the bathroom for so long. Apparently, just tagging her as a "fall risk" was sufficient, and no human interaction or follow up is required.
- After consuming all of the hot water on the unit, she spent a lot of time in front of the mirror brushing her teeth, drying and combing her hair, etc., all without supporting herself on the walker, sink, etc. I was excited (as was she) that she was able to maintain her balance for so long. A very good sign.
- Once she was done getting all gussied up, she decided to go... back to bed. Primping is tiring work, you know.
- She took her usual two walks today, both with the walker. She is determined to work on her balance to prove to the PT that she will be ready to be discharged soon. Maintaining her balance is crucial, as she will not have a 24/7 caregiver when she goes home. There will be portions of the day when she will be by herself and she needs the strength and balance to get around on her own when necessary.
- She is going to take another walk this evening when her boyfriend comes to visit. For that outing, she is planning on wearing her sneakers and is going to try to walk without any support at all (just have him next to her in case she needs help). She also is going to practice her PT exercises tonight.
- She will have a follow up with her doc and the PT tomorrow to gauge her progress. Barring any unforeseen setbacks, she is pretty confident that Wednesday will be discharge day.
- When I called, she was trying to eat spaghetti for dinner, which can be a challenge for anyone, but particularly daunting when half of your face is numb. She was attempting to cut it up in small pieces and then eat it with a spoon, but was having minimal success. I jokingly suggested that she suck up the individual noodles through a straw, which then, of course, caused us to have a big giggle fit. However, I still think the straw may have worked...
As always, thanks to all of you for your advice, comments, and support. Steve - to answer your question, I am not a writer, per se (I'm a copyeditor), but I do enjoy writing. I just wish I had more time to do it. Writing about Laura's progress has been very therapeutic for me and quite fun (now that she is doing so well). I am so glad people enjoy reading Laura's updates as much as I enjoy writing them.
Have a good night!
Barbara
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What a great update! The spaghetti reminded me of the time recently when my husband unwittingly made a pasta dish for me that I could not eat (numb face) and I ended up eating cereal and crying on the sofa. Now we know which pasta works well (penne) and what to avoid (everything else). Laura sounds so good.
Best,
Marci
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She had cream of wheat (with a spoon!), french toast, and bacon for breakfast this morning, watched a movie on tv, then took a two hour nap. Sounds like a perfect Sunday morning to me! ... she took a leisurely shower (like a half hour!) ... Once she was done getting all gussied up, she decided to go... back to bed. Primping is tiring work, you know...
Can you explain again why she wants to get out of there? ;D
I hope her adventure this evening wearing sneakers goes well. Best wishes.
Steve
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I vote that all future ANers give Barbera their hospital phone number so Barbera can keep us all updated! :D
Again, another great update and Laura seems to be in high spirits now! I remember when I first came home from the hospital, my showers were about 30 minutes, but only because trying to keep water out of my ear while washing my hair took some extra time :).
It's good that Laura is going to try walking without assistance with her boyfriend nearby. I'm sure the walker gives her a nice sense of security, but I think her balance will improve more quickly if she allows her body to falter here and there along her trip.
I'm keeping my fingers crossed that she gets to go home on Wednesday as she hopes.
Ernie
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trying to keep water out of my ear while washing my hair
We're supposed to keep water out of our ears?!?!
HIJACK
I ordered my operative report from the infamous Mili, as I mentioned last week, and it arrived on Friday, a week later. Along with it were my discharge instructions. About time I saw those, don't you think, sixteen days post-op?
So many bass boats out there Saturday, Ernie. Missed you!
Nancy
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Barbara ~
Another affirmative 'Laura report'! I agree with Ernie that Laura should attempt walking sans walker to facilitate regaining her sense of balance and hasten her discharge. Your account of Laura's spaghetti-eating experiment was hilarious, as you described it. I believe the 30 minute use-up-all-the-hot-water post-op shower is some sort of healing ritual and proven to be therapeutic. Well, it was for me.
I love to write, too - but don't find much time to do it. However, you seem to actually have some talent for it. I'm just loquacious. :) Thanks again for the updates!
Jim
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Hi everyone -
Here are today's (4/27) updates on Laura's progress:
- She had a very busy and productive day - no time for napping today!
- She has had no further headaches or pain meds for a few days now. Hooray!
- She did not need an anticoagulant shot today.
- The double vision was GONE when she woke up this morning! (No more groovy glasses!) Her left eye is a little blurry, so reading is still a bit difficult, but she is thrilled about not having double vision anymore. Such fabulous news!
- She continues to have the "almost tingling" sensation on and off in her face, and she discovered today that she could feel her cheek near her jawbone. She's not sure whether that area had been numb or not, since she has been so focused on the front part of her face (left side of her nose and lips), where she is experiencing most of the numbness.
- In the midst of all of her progress today, she did have a temporary letdown. She admitted she was sad about her face not looking right to her - it's not the same as it used to be and she was wondering when and if she will look like herself again. Completely understandable.
- She told her doc that she wanted to go home on Wednesday. The doc was fine with that and arranged for her to talk to a case manager about discharge plans. (And her doc was not pleased to learn that Laura had no PT on Saturday, as she was supposed to.) The case manager and the therapists were not happy about her wanting to go home on Wednesday, but she is determined to prove to them that she is ready - and from the day she had today - it sounds like she is!
- She had very productive PT, OT and speech therapy sessions; however, she was scolded by the OT first thing this morning, when she was caught leaving the bathroom with her walker instead of the wheelchair (Oh no! :o). Apparently, she is supposed to use the wheelchair to get back and forth. The problem with this theory is that the nurses keep the wheelchair parked in the shower, so even if Laura wanted to use the wheelchair (which she doesn't), she would have to walk to the bathroom to get it. Hmm...
- She had a lot of exercises today and did really well with all of them. She walked without the walker (they had her wear a belt so they could check her balance, if necessary, because she leans to the left a little); walked over and weaved through sets of cones; practiced learning how to get in and out of the shower properly for when she goes home; hit a balloon back and forth (fun!); and kicked and trapped a ball with her feet (she conveniently forgot to tell them she was a former varsity soccer player, figuring they would be more impressed with her coordination if they didn't know that ;)). She did all of this unassisted and with very few balance checks. They were very pleased with her progress.
- She got to do some outside PT today, which included going up and down five flights of outdoor stairs (about 75 steps each way). She said she felt great doing this - a little fatigued, but not bad, and no dizziness or nausea at all (she took anti-nausea meds before PT again this morning). She held the railing only lightly, and was pleased with her balance and pace going both up and down. Very impressive! Tomorrow she will practice getting in and out of a car.
- For speech therapy, she performed really well on most exercises (looking at a picture and writing a few sentences about it, drawing the hands on a clock, etc.), but the one task in which she underperformed was listing as many animals as she could think of in one minute, and also listing as many "s" words as she could think of. On both of these, she started out okay, but then ran out of things pretty quickly (not because her brain wasn't working right, but because she is terrible with stuff like this - even before her surgery). She laughed when she told me about trying to convince the therapist that she wasn't cognitively impaired - she was just bad at lists (particularly those that involve the rapid fire naming of farm animals, zoo animals, etc.)
- Alas, these posts of late would not be complete without a food discussion, so here is today's. For breakfast, Laura had her usual cream of wheat, a fruit plate, and some cottage cheese. While eating, she decided to add some fruit to her cottage cheese (not my particular taste, but I know a lot of people like that). The fruit at her disposal included cantaloupe and honeydew melon, strawberries, and grapes. Which one did she decide to add to the cottage cheese? That's right, the grapes. The small, oblong, slippery fruit with skin that nothing sticks to (like cottage cheese, for instance). Good choice. Luckily, she was eating it with a soup spoon so she could at least scoop up some cottage cheese with her nonstick fruit. Ah, the adventures of eating.
But what was the best part of Laura's day today? The surprise visit from fellow ANer Brenda (Teff)! She was THRILLED that you came to visit, Brenda!
Have a good night!
Barbara
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Okay, Laura is fine now. She should go home Tuesday. I think the PT people are being a bit obsessive. It was just brain surgery, after all. :) Seriously, if she is going up and down flights of stairs, she can finish her recovery at home.
The verbal testing is inane. When I had some vestibular testing, where they video tape eye movements and such, they would distract me by having me name off foods for each letter of the alphabet. This kind of task is so unrelated to the real world that it is often difficult to complete them. My brain, anyway, can find no context or purpose for doing them. In my case, they didn't care, they just wanted me thinking about something else. I got stuck on H, and the technician later said "hot dog" with a suppressed by still discernible roll of her eyes.
I'm sure she enjoyed the visit from Brenda, but I think the best news is that the double vision has cleared up. That could have been troubling if it had persisted.
Thank you for your updates. If the day is approaching when these will stop, can you find something else to post about? ;)
Steve
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Barbara,
Please tell Laura that she is right where I am now. I never had any of the PT and OT that she is having. I just walked a little and went up and down a half flight of stairs, asked to go home, and was discharged. No cognitive testing. My face is a mess as everyone knows. Show her my mug shot from the Spa Day thread. It remains the same, and I am all upset about it, too. I've learned that six weeks to two years is the projected recovery time for the facial nerve. I went home with double vision that cleared up two days later.
Send her home!
Thank you for your continued journalism.
Nancy
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Hi, Barbara ~
From your account, Laura seems to be progressing splendidly. I hope she realizes that she can do most of the balance exercises at home, especially if a friend assists. That young lady needs to be discharged from the hospital - and I hope she'll be home soon. Great news about the double vision beginning to resolve, as we had all hoped it would. Eating is always good and Laura seems to doing that quite well. Brenda's visit must have been very special! I'm so glad that happened.
I guess I was fortunate in that I just had to walk up and down some stairs and around the hallways to earn the PT nurses O.K. to be discharged. No paper cognitive tests. Maybe they just wanted to get rid of me. Whatever the reason, I did fine with the VNA PT person at home and after 3 sessions, she declared me no longer in need of her services. During that initial recovery period, my wife and I practiced throwing a small beach ball back and forth and we took lots of walks, often on uneven surfaces. You would be surprised how much PT you can do on your own, especially when motivated to regain normalcy, as I was and as I assume Laura is and will continue to be. She's going to be fine and probably quite soon, too. Good job, Laura - and Barbara, thanks yet again for the timely, informative update. :)
Jim
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;D
Whew! I finally got over being ill and traversed the 90 miles from my house to Laura's house--oops, I mean to Laura's hospital room! (Does she feel like she's taken up residence there?)
It was wonderful to visit with Laura! We met online in this forum a couple of months ago, and have been phoning and emailing each other because we share the same surgeons, the same type of surgery (tranaslab), the same facility (Barrow Neurological Institute). (My experience there is coming soon.) Hey, we even share the same SSD side!
Laura is doing so well, as Barbara has so eloquently shared with us. We had a nice, long visit (I think I may have worn her out!) about all her post-op adventures. I told her she has earned her place in the Guiness Book of World Records for what she has been through.
When I first came onto her floor in the rehab unit, I saw her working with her physical therapist. She was fairly skipping down the hallway. Well, maybe not exactly skipping, but it looked very adventuresome to me!!
Laura told me Barbara reads all the posts to her every night, and that they mean a great deal to her. She sends a great big thanks to all of you!!
Laura's grit, determination, and positive thinking are truly outstanding. I admire her greatly. It was a privilege to meet her in person and I know she will make amazing progress as she makes that transition to home and family.
Best,
Brenda
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Hi everyone -
Here are today's (4/28) updates on Laura's progress:
- I was going to hold this until the end of my post, but I just can't wait - Laura is going home tomorrow! Her discharge is tentatively scheduled for 11am. Home sweet home! Hooray!!!
- She had another great day today with a lot of therapy activity, including walking forward and backward, doing sidesteps, stepping on aerobic steps, going up and down outside stairs (3 full flights in each therapy session) and walking on sidewalks - with very few balance checks and all without needing to take any anti-nausea meds. Awesome!
- She worked with her therapist on facial exercises and also had to complete some more cognitive exercises. For one of her exercises, she had to sort some playing cards by suit, and then move to the next task. She knew she was only supposed to do a few cards, but once she got going, she wanted to finish the whole deck. As she was sorting the cards, the therapist interrupted and nicely asked if she remembered what the directions for the task were. LOL! Between not properly following directions on the card task today and the "animal naming" incident yesterday, Laura is pretty sure that the therapist thinks she's a bit of a dunce! ;)
- Apparently, getting caught coming out of the bathroom with the walker yesterday had dire consequences. For the first time since she's been in the rehab unit, the night nurse came in and put her bed rails up last night - and then moved the walker out of reach, to boot! And they did the same thing tonight. (That'll teach her for trying to be an independent adult and go the bathroom by herself.) As I was talking to her, she told me she was stuck in her bed for the night. She said, "first they tag me, then they trap me!" :D
Ah, but tomorrow, she's free! I am SO excited for her - and I am very excited that I will be seeing her in just a couple of days. I am flying out on Thursday to visit her for a few days - I can't wait!
I'm not sure how many more posts I'll have, so I just want to thank all of you from the bottom of my heart for your incredible generosity of spirit. Your unwavering support, guidance, and infinite kindness has meant the world to Laura - and to me. This is such a wonderful group and I feel blessed and privileged to have been a part of your lives. I hope it can continue somehow. And I love knowing that you are such a big part of Laura's life!
Have a great night!
Barbara
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Hello Laura, Barbara, and the ANA support folks,
I went out of town for a few days and returned to read numerous notes and posts of major progress about Laura. She's doing tasks, both physical and mental, that took me a few weeks to master after surgery.
So congratulations, Laura, because it's all of your hard work that is making the difference. Not only are you making tremendous strides, but you're keeping your sense of humor.
I look forward to hearing that you've landed home sweet home.
Take care,
Carol Franklin
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Laura has been through the wringer. You have been her best asset. I'm so glad you two will get to have some time together. But try not to make her laugh too hard! Don't want to split those stitches! ;D
I'll get Laura B's address in NY for journal mailing as soon as they are headed home.
This has been a long haul for all of us, and we are as relieved as you that she is finally going home.
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Yeah! So glad Laura is able to go home. Thanks for the great posts, Barbara.
We hope and pray she continues to improve in all ways. Glad you are there, Barbara, for such support.
Keri
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I've been followiing this thread casually (very busy), but please let her know she is in my prayers. ;)
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So glad to hear she's going home...sounds like she's doing very well and is much more than ready! Only hope she'll be able to handle her newly found freedom once she's home with no tags and bars to keep her restrained :D
Thanks for your updates, Barbara! I agree, you should be our official post-op update person...
Cindy
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Barbara,
I haven't chimed in on this thread yet as I've been watching your updates (for which, I am grateful!). Laura is SO very lucky to call you a friend and I thank you for sharing with us all how she is doing. This is great news she is now heading home and so many prayers have been answered. Please give her my very best wellness wishes... and Barbara, thank YOU for all you have done as well! Truly!
Phyl
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!!! :) :)
So glad you will be able to get out of your own bed now without being held captive.
That was funny about the bed rails up and the walker out of the way, but also made me shake my head. Definitely time to go!!!!!
Rest easy.
Maureen
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Congratulations to Laura on her excellent recovery and imminent release from the hospital !
Kudos to Barbara on her regular, detailed, interesting updates. Although we all want to see Laura heal and regain normalcy, the daily reports were fun to read and will be missed. The good news is that soon, Laura will be able to post on her own! Looking forward to that. :)
Jim
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Wow! I don't know what news is better, reading that Laura's double-vision is gone, or finding out that she's going home ;D
Laura must be ecstatic - I know I am !
I'm also very happy to see that Brenda was able to make it to the hospital to see Laura, despite being ill earlier in the week. Kudos to you, Brenda!
Barbara, thank you once again for the wonderful job you've done of "reporting" on Laura's recovery. Don't be a stranger, you can come back and "visit" us anytime ;)
Jan
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Barbara and Laura,
I find I am missing the "here are today's (5/2) updates on Laura's progress." :)
I hope you are visiting together now, and will soon both be giving us updates on your visit and status.
Steve
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Hello everyone,
Sorry that I haven't been online since i've been home. Just poppiing in for a minute to let everyone know that I am ok. Since I've been home I've had no energy at all. I still feel nauseus especially on the day rhat I have to change my transderm-scop patch. I still have severe facial weakness on the left side of my face....though I do feel tingling. My left hand does not know how to type anymore....very frustrating. Thank you to all of you that responded with such kind words to me and my wonderful friend Barb. I'm supposed to return to work 5/27. I don't see that happening. Just recently have been able to walk w/out assistance. I get exhausted doing the littlest things. I have a follow up appt. w/ my neurologist this coming Monday. Barbara was absolutely wonderful to me when she stayed with me. Our visit was great even though I wasn't able to do much. My kids are staying with their father. My oldest daughter Elisabeth (17) is staying with me, my boyfriend is also hellping me and friends also. Can anyone tell me when I will regain some energy? I will try to pop in at least once a week.
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Welcome back, Laura.
I am sorry to hear that you are still struggling with your recovery. It can be slow, especially when the AN was large to begin with. You are probably wise at this point to postpone the return to work if possible. I would continue to walk or move around as much as you can, it seems to help with getting the balance adjusted and your energy level back up. Try not to let the slow pace of recovery get you down; patience is your best friend now, and it will happen with time.
Take care, and give our best to Barbara too.
Steve
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Hi Laura,
I hope by now you are experiencing some increased energy. Let us know.
Marci
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Hi, Laura.
It's so good to hear your voice again. I'm glad you have your daughter there to help you and give you company. It is tough when you get down about your recovery, and being alone increases the frustration.
I've found that my energy level has dwindled since my steroid use ended. I take naps on days when I feel the urge and sleep a lot more at night than I did pre-op. I have to take breaks from physical work and feel a lack of motivation when faced with boring or tedious tasks. I'm trying to find something to look forward to because that usually lifts my spirits, so I'm thinking about two weeks from now when my son will be home for the summer.
Know that your difficulties are not unusual, and try to help your body heal: good food, fresh air, light exercise, lots of laughs and smiles even though they feel funny.
Dave cut my hair the other day. He had never cut anyone's but his own before, so it came out a little funny, but today his daughter is going to try to patch up his work. Then I will have a picture taken of me, and when you see how much my face has improved, you will have a whole bucket full of hope to splash around in.
I'm thinking of you and sending all the positive vibes I can to the other side of the continent.
Best to you and your family,
Nancy
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Hi Laura,
I too will hope and pray for your continued progress in recovery. It is slow. I was never on steroids post op, so I can't compare my energy level with or without them. I know at a month post op I was still pretty dang tired. Still am at times, although I'm able to do a lot now (but I'm now over 3 months post op). Like Nancy said, the facial weakness / paralysis hopefully will get better and it does take time. It's encouraging for me to see my progress and to know that Nancy is right behind me and you're right behind her.
I hope also that at your follow up visit you get good answers and encouraging news.
Keri
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Laura,
I'm so glad you're home! I know it seems like you'll never get your old energy level back, but it will come back...unfortunately, not as quickly as you'd like it, I'm sure. You have to remind yourself frequently that your body has just been through the ringer and deserves a little down time to recover.
The tingling in your face sounds like a good thing and I'm sure your hand will get the hang of typing again too.
Lori
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Laura -
very nice to hear from you ;D
The fatigue post op was more than I ever anticipated. Initially it seemed like just taking a shower required a nap. Things will get better though - it just takes time.
My neurotologist told me that six weeks is the "norm" for recovery, but that the fatigue would last longer than that.
You'll get there. As hard as it is, try to be patient.
Best,
Jan
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Dear Laura,
Oh, I am so glad to hear from you. Thank you for making the effort to post!! That has to be hard.
Since I'm not a postie yet, all I can say is we are all thinking about you and praying for you.
Please do let us know from time to time how you are doing.
Best,
Brenda
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Laura,
Prayers answered and so glad to hear you are home. Please take it easy and I'm thrilled to hear that your support is fully engulfing you. You are truly blessed in Barb, your daughter and all that surround you. Please take it easy and type when you can. I'm truly thrilled that we heard from you.
Please be well... and continued wellness wishes coming your way.
Phyl
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I went to see my neurologist this past Monday and he said I shouldn't return to work til mid july. He also referred me to see an eye dr since my left eye was really irritated. When I was released from rehab they neglected to give me eye oinment and they neglected to tell me to tape ny eye shut during the day. When I was released from rehab my eye was fine but last week it started to get irritated and infected. The eye dr wanted to sew my eye shut(which I refused!) until I have an outpatient procedure done on my eye to have a gold weight put in my left upper eyelid so my eye will blink on its own. Has anyone else had to have that done? My balance is doing much better, but my energy level is still super low. i have to have an MRI and Ct scan next Wednesday and June 4th I start radiation ( I will have 3 sessions) .
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Laura,
So sorry to hear about your eye complications.
I assume your facial nerve is still intact?
I had to have my eye stitched half way shut (lateral tarsorrhaphy) after surgery for 5 months to protect the cornea. I was mortified, I thought "how barbaric!" (Kaybo had to have hers totally sewn shut, and Nancy/Lori have had it done too).
Then they put in the weight which feels heavy and burdensome to me but at least my eye is open.
Of course every doctor is different in their opinion, but you don't want to mess with the cornea.
If you get corneal ulcerations or severe irritations, it may compromise the whole eye. That was stressed to me over and over.
Some docs want to be safer than sorry later.
But it is your face. I know the horrible feeling of even talking about it.
Maybe the surgeon can just put a few stitches into the corner of the eye, like Lori, and you can lube up the eye 24/7.
I'm also sorry to hear that the rehab did not advise about the eye ointment. Actually that should have been done by the hospital doctors. Very bad :(
Very important detail!!
Anyway, keep it lubed up -my vision is a little blurred on the left but I do fine compensating with my right eye. I just don't want to deal with complications that can arise.
Feel free to PM me.
Maureen :-\
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Hi Laura,
Have a look at the Eye Issues section of the forum: http://anausa.org/forum/index.php?board=13.0
There are lots of posts about eye stitching, eye taping, eye weights, and eye drops. You are not alone!
There is even such a thing as an external eye weight, which is taped onto the eyelid. This is an alternative to the installed kind that might work for you and is less invasive.
Keep your eye moist and hang in there. I think the radiation will be easy going for you, and I hope you get past the fatigue soon and start feeling better.
Steve