ANA Discussion Forum

AN Community => AN Community => Topic started by: Rivergirl on June 05, 2011, 06:49:44 pm

Title: I am back, somewhat
Post by: Rivergirl on June 05, 2011, 06:49:44 pm
Thank you for the well wishes!  Can't believe I have the energy to sit here and type.  What a week it has been, the surgery and post op was so much harder (still is) than I anticipated.  The Dr.s and nurses were great at Mass General, especially one intern who would not accept that I did not want to get up, he read me the riot act and he was right getting up improved everything. I am SSD on the right, tinnitus is better, I have a small amount of facial droop on right and my taste buds are gone (that may be the next new diet craze).  My husband has been a dear (so romantic, back in the shower together today, NOT!)  Ok that is it...........heading back to the prone position.
Title: Re: I am back, somewhat
Post by: opp2 on June 05, 2011, 07:28:52 pm
It does get better. You'll see. My sense of taste was all screwy for the first 3-6 months or so. It's pretty much normal now. You will adjust to SSD and all the weird and wacky things that go on with it...

Keep up with the R&R Girlfriend. Congratulations and welcome to the other side.
Title: Re: I am back, somewhat
Post by: Soundy on June 06, 2011, 09:30:59 am
Rest , Rest , Rest ... this was the hardest part for me ...

taste is still not right almost 4 years later but I am used to it and have yet to starve

take care of yourself ..

and just know it does get better
Title: Re: I am back, somewhat
Post by: mk on June 06, 2011, 11:27:57 am
Hi Rivergirl,

I am glad that you are back posting. Don't worry, you will see improvements every day - just take it easy. Make sure to take good care of your eye if it is dry.

My taste is also very weird: Coffee tastes like ash, and I can't tolerate very salty or sugary foods - oh well, at least this encourages a healthier diet  ::)
Everyone recovers at their own pace - make sure to follow what your body tells you and to get plenty of rest.

Marianna
Title: Re: I am back, somewhat
Post by: Jim Scott on June 06, 2011, 03:34:08 pm
Rivergirl ~

Thanks for the update, especially considering that you're just out of surgery (sort of).  As you know, most initial post-op issues resolve in time and I hope yours do, too.  Rest - and post when you're up to it.  Oh, and welcome to 'postie-land'. 

Jim
Title: Re: I am back, somewhat
Post by: LisaP on June 06, 2011, 04:56:26 pm
Hi,

Great to hear from you, so glad that the surgery went well, are you home yet?  Please keep us posted, will you continue to post under the title "I am back, somewhat".  Also thank your son for e-mailing me.

I hope your recovery goes well, you continue to be in my thoughts and prayers and thank god that it is over.

I hope you can continue to write often, I want to keep track of how you are doing.
LisaP
Title: Re: I am back, somewhat
Post by: Rivergirl on June 06, 2011, 06:33:20 pm
Thanks for the encouragement and kind words.  I am home if I didn't mention that.  It is really hard to go through this but today was a better day (sort of), my husband pushes me to get up and takes me walking a little further each day and more times so he is being very supportive.  Tomorrow .......hope it is even better
Title: Re: I am back, somewhat
Post by: ombrerose4 on June 06, 2011, 08:10:27 pm
Hi,

It sounds like you came through surgery well and starting your recovery. Just remember to rest when your body tells you and eat a high protein diet for good healing. Walking is great, just take your time. Are you having any balance issues? If you are you should see about getting some vestibular rehab. We are all here rooting for you :)
Title: Re: I am back, somewhat
Post by: jaylogs on June 06, 2011, 09:58:14 pm
Hey there, congrats and welcome to the other side! It's definitely baby steps for the first few weeks, but before you know it, it'll al be a distant memory.  As everyone has stressed so far, REST REST REST and listen to your body!  Keep us updated!
Jay
Title: Re: I am back, somewhat
Post by: Suu on June 07, 2011, 12:51:42 am
Yeeeeeeeeeeee haaaaaaaaaaaaaaaa! Well done and a big congrats to you picking the right hubby to be going through this with.  ;D

I guess you've got the gist of it from everyone so far - when it's time to rest - rest.  :)

Gr8 to have yet another ex-ANer here.

Warm hugs and best wishes,

Suu xxoo
Title: Re: I am back, somewhat
Post by: ppearl214 on June 07, 2011, 03:45:54 am
Well, m'dear... you made it to Postie-hood!  :-*  Now, as everyone has noted... rest, rest and rest.  I think you know my saying around here.... "day by day, inch by inch.......", so PLEASE take it easy, rest and sending those healing hugglez to help the cause.  Ya done good! :)

xo
Phyl
Title: Re: I am back, somewhat
Post by: CHD63 on June 07, 2011, 05:57:56 am
Rivergirl .....

So glad the most difficult part is behind you.  It sounds like you are doing well in recovery.  Keep up the good walking and you should continue to do well.

Many thoughts and prayers.

Clarice
Title: Re: I am back, somewhat
Post by: LisaP on June 12, 2011, 05:16:48 pm
Hi Cindy,

Continue to keep up posted on how you are doing, good and bad.  Again take it day by day and best wishes.

LisaP
Title: Re: I am back, somewhat
Post by: Rivergirl on June 12, 2011, 06:40:11 pm
Well, it is day 12 and I wish this was going faster.  My head is still quite swollen but the scar is healing well and the hair is growing.  It is hard to sleep at night, trying to get comfortable.  My taste buds are horrible, I crave flavor and find salt the best. Tomorrow I go to Vestibular Therapy, hope they don't make me feel worse but I hear they do.  Oh well each day I make some progresses its just all slow.  Thanks
Title: Re: I am back, somewhat
Post by: saralynn143 on June 12, 2011, 07:41:50 pm
Hang in there, Rivergirl. Slowly but surely it goes get better, and we are all rooting for you.
Title: Re: I am back, somewhat
Post by: RichB57 on June 14, 2011, 10:02:12 am
Hi Rivergirl,

I had my AN removed at Mass General on April 20 and just got back to work yesterday.  I was starting to worry when I was not really seeing much improvement in my head feeling like I was in a complete fog at about 4 weeks post-op, but things got better.  Getting out and walking in my neighborhood really helped.  I always seemed to feel better late in the day when I had gone for walks, than on days that I didn't walk.  Hang in there, things will improve! :)
Title: Re: I am back, somewhat
Post by: james e on June 14, 2011, 01:59:37 pm
Enjoy the rehab! I looked forward to it and learned a lot about how my eyes are KEY to my balancing. Rest is big-time important, but go to the PT and it will help you get back on your feet full time...then you can  rest. Recover is a LONG term process, so don't look for rapid improvement. You just have to keep after it!

James
Title: Re: I am back, somewhat
Post by: SML on June 17, 2011, 12:33:24 pm
Hey Rivergirl,
Congrats on being a postie! Go easy on yourself and please don't over do. Thing do get better with time… including the taste buds. Patience is the key word here! So… rest, sleep, VPT, rest and sleep some more!

Scarlett
Title: Re: I am back, somewhat
Post by: LisaP on June 18, 2011, 02:24:00 pm
Hi Cindy,

I try to keep checking in to see how you are doing.  Hope therapy goes well. Take it day by day and keep posting and leting us know how your progress is going.  I bet you are glad that the surgery is over.  Where you pleased with Dr. McKenna and the care you had at Mass General?


LisaP ;D
Title: Re: I am back, somewhat
Post by: Rivergirl on June 18, 2011, 04:03:23 pm
McKenna and Martusa were very good, their bedside manner was excellent, they came by everyday and they were encouraging and concerned about any complaints.  I had one intern that was amazing, he actually was responsible for getting me moving otherwise I think I would still be there.  Couldn't have asked for better care.  Just wish i was all recovered, have a dam hematoma on my incision since surgery that is painful and extremely slow to resolve and I have a numb left side torso that also causes back spasms otherwise I would be great.
Title: Re: I am back, somewhat
Post by: MZB475 on June 20, 2011, 08:36:31 pm
just finding out about your surgery...am the Greater Boston support group "den mother" (the Lisa P of Boston).  Wishing you daily recovery and good health. keep up the great spirit! Prayers and hope. Laura B
Title: Re: I am back, somewhat
Post by: moe on June 21, 2011, 11:06:27 am
Just a friendly hi to see how your recovery is progressing.
Baby steps may still be in order. Walk as much as you can!
Moe
Title: Re: I am back, somewhat
Post by: LisaP on June 26, 2011, 12:56:33 pm
Hi,

Glad to hear that things are going ok, if I have to have surgery, I plan on going with Dr. McKenna, but if I choose radiation, I plan to have it done at BSMC in Springfield.  My next MRI is in Oct. so we will see hoping to W&W for another year.

Please write often so we all know how you are doing.

Best wishes,

LisaP
Title: Re: I am back, somewhat
Post by: Rivergirl on June 26, 2011, 07:47:28 pm
Still have pain along the incision and swelling that really isn't moving, hard to sleep unless on my left side, and headaches especially in the morning.  Vestibular therapy going well, I am also going to the pool a lot and working out in there.  I have this weird other thing, my left back torso has been numb since surgery, seriously you could take my kidney out and I would not feel it.  Well now along with the numbness, it feels the nerve endings are raw, even clothing  causes pain, I may go see my PCP just to see what he thinks.  I did some research on line and this happens after surgery and may not ever come back, it would suck if it stayed like this.  Otherwise half of my days are good so guess that is progress.  Enough complaining from me today.
Title: Re: I am back, somewhat
Post by: ombrerose4 on June 27, 2011, 08:27:42 am
You just had surgery, so feel free to complain as much as you want! As you know we all heal differently, but it sounds like you are coming along. I couldn't sleep on my AN side for over 10 months. You should definitely see your PCP regarding that numbness you are having along your back. I have never heard of that in regard to surgery. The nerve pain you are describing sounds like shingles, which 3 members of my family had. Extremely painful and hard to wera clothes, just like you described. Check it out and let us know. Have a good day:)
Title: Re: I am back, somewhat
Post by: Rivergirl on June 27, 2011, 01:47:47 pm
Thanks for the words of encouragement.  Had a nice phone call from Kathy MacDonald, she made me laugh and brightened my day :)
Title: Re: I am back, somewhat
Post by: LisaP on July 02, 2011, 02:52:20 pm
Hi,

Sounds like things are going ok, weird about you tourso, this AN thing is baffling.  Kathy is great, she continues to W&W like me.  Hope you continue to progress, please keep updating on your progress.

LisaP
Title: Re: I am back, somewhat
Post by: Rivergirl on July 09, 2011, 07:41:22 pm
Just an update, I am going back to work on Monday, I will limit to 20 hours a week for a couple and then back to full time.  I still have swelling, numbness, and pain but McKenna says that all can take months maybe a year to settle down so I might as well heal at work.  So I hope it goes well, I know I will be tired so it won't be unexpected.  I just need to get into my routine again, think that may help a great deal.  So 5 weeks 6 days of recovery and I rejoin the world......thats not too bad.
Title: Re: I am back, somewhat
Post by: Jim Scott on July 10, 2011, 02:13:30 pm
Rivergirl ~

Thanks for the update.  It's encouraging to learn that you're returning to work.  Doing so on a part-time basis as a bridge to full time seems wise and usually proves successful.  Returning to work at just under six weeks post-op is excellent.  Because you anticipate being fatigued, you can prepare for it - and work around it.  In my experience, I found that returning to familiar routines aided my feeling of regaining normalcy and encouraged me to forge ahead with my recovery.  I hope you'll have a similar experience. 

Jim
Title: Re: I am back, somewhat
Post by: LisaP on July 10, 2011, 04:50:14 pm
Hi,

Good luck going back to work and god bless you on your recovery.  Let us know how you do.

LisaP ;D
Title: Re: I am back, somewhat
Post by: moe on July 12, 2011, 08:41:50 am
Congratulations on the decision and will to "jump back in there." :) What kind of work do you do?
Let us know how things go, and don't forget those naps!
Maureen
Title: Re: I am back, somewhat
Post by: LisaP on July 17, 2011, 12:41:05 pm
Hi,

Tried to call you twice, hope all is ok.  Let us know how you are doing and work. 

LisaP ;D
Title: Re: I am back, somewhat
Post by: Rivergirl on July 17, 2011, 06:12:01 pm
Doing well, first week back to work went good, only 4 hours a day, I could get used to that.  Lisa P I tried to call you twice and the phone doesn't ring, tried using my home and cell phone, I will try again in a few days, thank you for your worrying about me, you are sweet!
McKenna thought I was doing very good, told him I was thankful the pain and pressure, the shocking feeling in my head was gone and the horrible tinnitus is better, he said most people aren't that thankful at 6 weeks so that is good.
Daily headaches but think those will go away at some point.  The numb and painful back is improving, physical therapy is a huge help.  Taste buds seem better but maybe I am used to that. Going to swim aerobics three times a week (at my own pace) trying to be normal so I will feel normal sooner and I think that is working.
So glad this is behind me.
Title: Re: I am back, somewhat
Post by: LisaP on July 21, 2011, 05:07:10 pm
Hi,
 
Great to hear from you.  So glad that you are doing well and that this is behind you.  I hope someday this is just a memory for you and the word AN is out of you vocabulary.  This August I once again make the appointment for my MRI eeeekkkk three and a half years into this trip.  Anyways I have been following your posts and will try to call you again.

Best wishes,

LisaP :D
Title: Re: I am back, somewhat
Post by: MLB57 on July 23, 2011, 06:35:55 am
Hi Rivergirl,

I just read all these posts or I would have jumped in sooner----I had surgery Jan of 2001 (age almost 51 then) at U Mass Med Ctr, Worc Mass, retro sigmoid for 1 CM rt AN.  I had been in good health but I gotta tell you I felt like a Mac Truck hit me and I was using a walker for 2 weeks and didn't go back to work for 3 months--I was so exhausted all the time. Finally went back and worked part=time for a month then back to regular 40 hrs per week.  I didn't have any vestibular training, either--if I known what I do today I would have definitely gone to Mass General--you are  in great hands (as I'm sure you know now)... I remember that "Crashing" sound in my head--it came like a wave-- usually happened as I was drifting off to sleep.  My taste was kinda weird, too, but it's been so long now I think it's back to normal.

Anyway, you have lots of time yet --over a year I'd say to see you full recovery (facial nerves, etc)--so just hang in there and try to be patient... You have a great support group of MD's and people with similiar experiences on this site.

Take care and you will do just fine!!


Best wishes,

Mary aka GrammyMary
Title: Re: I am back, somewhat
Post by: psmix on July 23, 2011, 10:41:34 pm
I sleep with my head elevated (one of those wedge pillows under my regular pillow), and that helps my morning headaches. If you are still having morning headaches, it may be worth a try!
Title: Re: I am back, somewhat
Post by: LisaP on July 25, 2011, 05:28:32 pm
Hi

One thing I have to make sure is that I get a goodnight sleep or I do wake up with a headache.  I do like the idea of the pillows.

LisaP ;D
Title: Re: I am back, somewhat
Post by: tsl on August 01, 2011, 11:25:34 am
Hi Rivergirl,
I've been away from the site for a while.  I think that you're absolutely remarkable in your perseverance and progress since your surgery.  Don't forget to rest and let folks help you out.
Take care,
Theresa (tsl)
Title: Re: I am back, somewhat
Post by: Rivergirl on August 01, 2011, 06:51:33 pm
Thanks Theresa, I am swimming instead of sinking but I sure do have my moments.  I actually went back to my second job this past weekend and that was really nice to see everyone at the hospital where I moonlight, there is great spirit there not like a job at all.  I am doing better each day, now 8 weeks post op, never thought I would make it and now so glad I did it and it is over.  Still with swelling on the top of my head, do think it is getting better, hard to judge cause the head feels like I am rubbing a coconut that has been attached...I am really feeling like a postie  :)
Title: Re: I am back, somewhat
Post by: LisaP on August 07, 2011, 02:12:39 pm
Hi Cindy,

Only 8 weeks and it sounds like you are doing so well, back to work and feeling better each day.  Glad to hear that this is behind you.  I am starting to begin the process of booking my MRI for October.  Here we go again. 

Best wishes,

Lisa
Title: Re: I am back, somewhat
Post by: Anasazi42 on August 07, 2011, 07:44:12 pm
I was reading this post and wanted to say how wonderful and inspiring your recovery is Rivergirl, but also to mention how sometimes one reads something that describes exactly what you've been experiencing but haven't mentioned to anybody. I was reading the responses to your post and almost cried when I read the quote below. I experience the same exact thing when I'm drifting off to sleep! It's taken some getting used to and at first it freaked me out, but I never mentioned it because it would be non-stop complaining if I mentioned every weird thing I feel and hear after an AN. Reading that someone else has experienced the same thing was just so comforting. This forum is... I can't even say what this forum means to me. Anyway, onward and upward on your recovery Rivergirl.  :)

Hi Rivergirl,

... I remember that "Crashing" sound in my head--it came like a wave-- usually happened as I was drifting off to sleep.  My taste was kinda weird, too, but it's been so long now I think it's back to normal.
Title: Re: I am back, somewhat
Post by: Rivergirl on August 09, 2011, 06:58:17 pm
Yes, Anasazi........this site is wonderful!