Author Topic: Post-translab - feeling great!  (Read 6010 times)

NEbluebells

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Post-translab - feeling great!
« on: May 30, 2016, 02:14:24 pm »
Well, it is now 18 days post-translab and overall, I continue to feel great.  Mostly I feel so thankful to God that I am alive and I am blessed to get to live. Although I don't feel the intense euphoria I had immediately after surgery, I continue to feel very grateful for my family, friends and life.  I also figured I should move my posts to the "post-treatment" section :)

We made it home to NE (from CA) on day 14. I did use a wheelchair in the airport and am glad that I did. We had 2 connecting flights and 2 VERY eager preschoolers anxiously waiting for us when we arrived at home and was glad I had conserved my strength.  The first night home was very exhausting and I must admit the kids are probably the biggest challenge right now. They are just so incredibly active!

As far as symptoms, I have been experimenting with eliminating Tylenol.  I haven't been successful yet - still between 2-3 500mgs per 24 hour period. I made it 12 hours with no Tylenol today and needed a nap and a Tylenol when it finally caught up with me. Also, it feels like I have a mild ear infection/tooth ache type of pain in my AN side, presumably from the surgery.  I do have some mild tastes changes - like chips taste like the worst thing on the planet - so that is probably a good thing.  Although I have an insatiable appetite for gummy bears (of all the strange things).

I still wouldn't feel comfortable driving a car right now, but hopefully that will improve.  I don't like feeling "stuck" and having to have others drive me around.  There has been a bit of tinnitus, but that seems to go away once I get active.  I think a challenge is waking up in the morning, what seems to work best is self-coaching myself that it will probably be a drag for the first 10-15 minutes but things will drastically improve if I can just get up and get moving. I think I will need to continue walking in the morning before work (never been an early bird exerciser, but will be now with my new normal).

Also, I do feel easily fatigued. For example, yesterday I walked 1 mile (in one session) and once around the block (first time by myself - actually my 4 yr old came with me, but I still count that as a solo trip since I was the only adult).  It is somewhat challenging to get moving, but once I do, I feel much better.  I also notice my appetite has returned to normal, so I think the steroids are finally out of my system.  I don't have facial weakness, but definitely tingling. Strangely, I had this same tingling right after my diagnosis, but it also went away, so I'm hopeful it is just part of the recovery process.

I don't have as much saliva in my mouth on the AN side and no tears on the AN side, but the refresh eye drops help to where I don't notice it after I put the drops in. I'm debating on whether to go in to work 2 hrs a day this week.  I know I should rest, but I feel so useless at home. We'll have to see. Work doesn't seem as daunting as laundry and dishes and the kids :P
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

NEbluebells

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Re: Post-translab - feeling great!
« Reply #1 on: May 30, 2016, 02:24:45 pm »
Oh - and I forgot to add the most outwardly noticeable thing - it's hard to move my gaze/head from left to right, so it ends up looking like I have a neck injury/problem, because I tend to keep my head very still and not turn very much.  Most people say they can't tell I just had surgery - I can't tell if they are just trying to be nice or if I'm just self-conscious of my uber-posture pose/slow/lop-sided gait ::)
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

Greece Lover

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Re: Post-translab - feeling great!
« Reply #2 on: May 30, 2016, 02:37:03 pm »
Thanks for the update!  Similar things for me. I'm off Tylenol. Still colace! But now on a steroid because of my face. Some of that has come back. We are at the Wisconsin dells and I've been able to walk around to some of the water slides and watch the kids.

I've got some exercises from a PT person I will start tomorrow to help recalibrate the balance.

Glad you're doing well!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

NEbluebells

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Re: Post-translab - feeling great!
« Reply #3 on: May 30, 2016, 06:27:51 pm »
Greece, I'm so glad the steroids are working, but gosh, I thought they were so hard to take - I felt like I was on total hard core drugs while on them - I barely could sleep and I couldn't stop talking. I never felt so strung out/euphoric before.  But that is good they are helping your face. Can you close your eye now?

You are SO brave to Wisconsin Dells - omg, I don't think I could have handled that prior to surgery, much less afterwards! LOL! Your kids are lucky - I'm sending my to daycamp starting tomorrow...I feel guilty about it, since I have never sent them to daycare if I've stayed at home, but trying to care for them is by far the most difficult thing about recovery.  I'm also worried about napping with them too - they really need constant supervision. I can't imagine if I would have had to go through this 1-3 yrs ago when they were younger!  I'm actually thinking it's better for me to be at work making money (and sedentary) and paying helpers (daycare/babysitters/cleaners) to do the real work!
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

Greece Lover

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Re: Post-translab - feeling great!
« Reply #4 on: May 30, 2016, 07:35:57 pm »
It's a little chaotic but it forces me to get up and around which is good. The steroids make me hungry and make it harder to sleep, but no euphoria, unfortunately! My eye was pretty good today. It still doesn't blink normally but I can close it much more easily. Still tape it shut at night but that could change if it keeps getting better.

What do you do for a post op with house?  Do you call them or do it close to home?

Keep up the good work! Your kids will be fine!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

NEbluebells

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Re: Post-translab - feeling great!
« Reply #5 on: June 03, 2016, 02:17:13 pm »
Day 22 post op and I've been back to work for 2 days (6 hours yesterday and 3 hours today - it's dependent upon when I can get rides). This is the first day I've been off Tylenol and I feel very proud of myself.  I think I was scared of what any pain would be like (I'm a baby about headaches), but it has been completely tolerable. 

I notice my jaw gets tired and sometimes I feel like I have to concentrate on swallowing - like my saliva is all messed up - sorry if that is TMI. Sometimes there is too much saliva and I feel like I'm going to drool and sometimes I get super dry mouth - it's just kind of strange. Overall, I just feel like I've had a glass of wine, which is not really that unpleasant - the other way I compare the foggy head is like when you have a newborn/sick child at home and you didn't get any sleep the night before and you still have to go to work. It's not that I'm tired (still only working part-time and the kids are at daycamp - so I'm definitely not back to my normal) things just feel like a bit of a dream/as if my head is a balloon above my body.  That is the best way that I can describe the whole feeling - I'm hopeful that feeling will subside over time, but over all I can't complain.

I am trying to walk for an hour a day, but it is sometimes hard to get motivated, and I do my best. To be honest, it wasn't like I was a gym rat before the surgery :)

I have my first appointment with a vestibular physical therapist on Monday and am looking forward to it. I don't actually have any follow up appointments, but I was given the House Clinic's doctors emergency contact info and instructions to call at any time if I had any problems and they would help troubleshoot and get me coordinate with the right person should anything come up now that I'm back home. 

My mom was the most worried about me going to the House bc my dad had heart surgery at the Cleveland clinic 2 yrs ago, but when he came back, his medication was off and he ended up with congestive heart failure - and so aftercare was a HUGE concern for my family when I decided I wanted to travel to Cali for my translab.  I have been very lucky in being complication-free so far, but the last day in Cali, I thought I was having a CSF leak and went through the emergency contact process with the House doctors and it worked very well.  I went in and they did the head hang test and no CSF came out, and it exerted WAY more pressure than I had put on my head, so it really calmed my nerves.  Overall, I am so happy with my experience and would recommend them in a heart beat.
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

NEbluebells

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Re: Post-translab - feeling great!
« Reply #6 on: June 03, 2016, 02:23:35 pm »
Just wanted to add the CSF leak scare was actually seasonal allergies, which I have TERRIBLE allergies - I went back on my zyrtec and feel much better. Also washing my hair daily helps (which I have always done, with the exception of post surgery) because it physically removes a lot of the allergens.  I think my allergies really flared up after I finished my steroids, I wasn't taking my zyrtec and I had about 10 days of allergens on my gross post-surgery hair ;D
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

ANGuy

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Re: Post-translab - feeling great!
« Reply #7 on: June 03, 2016, 07:27:59 pm »
I'm glad you are doing so well.  As someone who will probably need surgery one day, and will probably go translab, your recovery is encouraging. 

As to your one hour walks, I am a halfast gym rat and one hour of exercise is actually a lot.  It's not that it's too much or bad for you, but 20 minutes of moderate exercise a day is actually plenty.  Moderate means you could have a conversation while you are doing it.  If you are too out of breath to talk on the phone or to your walking buddy, that would be "vigorous" of which 10 minutes a day is enough.

Also, you don't need to do all of your exercise in one session.  As long as each block is 10 minutes at minimum, those blocks can be added up to get your total.

Don't feel like you are shirking your exercise duty by taking two 15 minute walks a day instead of feeling guilty over skipping a 1 hour walk because it is too much for you to get done.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

NEbluebells

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Re: Post-translab - feeling great!
« Reply #8 on: June 04, 2016, 10:18:40 am »
Thanks, ANGuy! That is good advice - as a a chronic gym quitter I need all inspiration I can get to stick with my rehab/walking!

So, I thought it would be helpful to post about my vestibular exercises from the House.  So today at Day 23 I'm starting these:
While sitting...
1. Eye exercises (look up and down/side to side) 20 times slow, 20 times fast.
2. Eye exercises (look up and down/side to side) while focusing on a finger at arms length, 20 slow and 20 fast
3. Repeat 1 and 2, but instead of exercising your eyes, you move do the motion with your head.
4. Shrug shoulders 20 times
5. Rotate shoulders 20 times
6. Rotate head and shoulders 20 times
7. Rotate head, shoulders, and trunk, 20 times slow then 20 times fast
8. Repeat 7 with eyes close.
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

NEbluebells

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Re: Post-translab - feeling great!
« Reply #9 on: June 04, 2016, 11:01:09 am »
Well, no sugar coating this one - that was 40 mins of sheer unpleasantness.  The only one that didn't make me extremely dizzy was the eye movement exercises.  They also made me slightly nauseated. I suppose the upside is that the 4 yr old is working on her counting with me ;) There are a bunch of other exercises on the sheet but I'm going to take a break and not move - that was surprisingly A LOT of work - much more intense than walking and here I thought it was going to be easier because I was doing them in my air conditioned living room! I can see where these exercises would be really helpful in getting me back to driving, though - so that is motivating for me ;)
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

NEbluebells

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Re: Post-translab - feeling great!
« Reply #10 on: June 13, 2016, 12:36:14 pm »
Things have gotten very close to back to normal around here (I'd estimate 80%), so much so I haven't had much time to post. However, I know how helpful these posts were to me when I was pre-op and so I wanted to commit to continuing my updates, or at least when I have some milestones to report.

So to recap, at Day 21, I returned to work (average 4 hrs/day). I couldn't drive, but am lucky in that I have friends and my hubby work at the same place as I do, so I got rides from them. For the first week, I'd come home at lunch and nap - getting ready for my kids to get home from camp. If I didn't have crazy 4 and 5 yr old energetic/demanding kids, I feel like I could have worked the full day. 

At Day 22, I had my first vestibular therapy session (evaluation).  She was very pleased with my progress and estimated I was 75-80% "normal" (yay, walking!) I asked her for her estimate, because I was anxious to begin driving (shuttling kids around etc). She thought I was fine and that gave me the courage to begin with short driving trips. So Day 23 I drove 2 miles (mostly neighborhood) to pick up kids from their summer camp. 

Day 27, I feel confident driving and drove to work for the first time. My car doesn't have a/c, so that's a bummer bc it's 99 degrees outside, but since I'm now confident I'm probably not going to die from my AN (again, you have to remember I was in a very dark place leading up to surgery, thinking I was not going to wake up from the surgery), we have an appointment to fix the a/c in a few days.

Day 27, I'm scheduled for 32 hrs this week and feel my best when I'm at work, although I am lucky bc I have a cushy desk job - it's much tougher to come home and take care of the kids than be at work. I really did not anticipate how difficult taking care of the kids would be post-surgery.  If you are a mom with young kids, my advice is make sure you get as much childcare as you can find and afford post surgery - it's by far the hardest thing (for me).  That being said, I do think that I'm lucky in that I feel good - there are now times that I start to forget I had surgery. (This just started today).  I'm slower at most things and I have to pay attention and act deliberately on tasks, and there are just some things (loading/unloading dishwasher, putting away groceries that I am just not up for and hubby/kids are stepping in to help).

As far as negative symptoms, I do get weird head ache zingers - they aren't real headaches that are constant, but seem to be positional - like if I lay on my back the wrong way, I'll get what feels like a head ache, but goes away when I turn over/adjust my neck. My eyes also get more tired from focusing on the monitor, so I try to minimize reading/internet/tv to conserve my energy for work. Also my cheek continues to feel mildly Novocaine-d, but I have full facial movement, so I'm just patient with that symptom. When I type I notice I make more typos/skip words, as if my fingers can't keep up with my brain. My saliva issue has seemed to resolve, too.  I suppose I do get a bit dizzy if I've been laying down and get up to go to the bathroom in the dark, and I can find certain head mov'ts that make me dizzy, but I've been religious about my PT exercises and do them almost constantly. I try and insert them throughout the day. The only symptom that has me kind of worried is I seem to be waking up at night (3am) with terrible reflux.  House had me on some kind of medicine to prevent ulcers (which can be caused by the steroids I guess) and I just hope I didn't get ulcers from the medication. I'm trying to schedule an appointment with my GP to either get more of the medication House gave me or something else....

There are sometimes that it's hard because I think I overdue things and try and be up to my "old" self and it just isn't fully possible yet.  Especially waking up and getting going in the mornings - first time in my life that I feel like I could sleep and sleep and sleep in the mornings. But overall, I continue to feel "high" on life and thankful that I have had such a good recovery.   

PS One last thing - for those that may be preparing for immediate SSD, I was mostly SSD 18 months prior to surgery - it happened suddenly and I remember being really bothered by it. Of course the surgery completed the SSD process, but I was already used to adjusting for it, so that may be why I'm not having as hard of a time with SSD adjustment - I'm really more like 20 months post SSD, not 1 month. If it's any help, post surgery it really doesn't bother me that much, with the exception of it feeling more off-balanced than prior to surgery.
« Last Edit: June 13, 2016, 12:57:20 pm by NEbluebells »
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

NEbluebells

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Re: Post-translab - feeling great!
« Reply #11 on: January 04, 2017, 05:05:06 am »
Wanted to keep up with my story...
I had my 6-month scan on 3 Jan - it is technically an 8 month scan, but I delayed the MRI because I got pregnant in August.  The pregnancy was a complete surprise and we were so happy, but unfortunately she was stillborn on 21 Dec 16. It was the worst thing I have ever gone through, AN included.

Anyways, now I'm trying to put my life back together and so I'm scheduling all my appointments that were put off. I had the MRI done yesterday and am feeling completely ambivalent to the whole thing.  Maybe it's a result of the loss of my little angel.

My new medical problem, is that I also had a dermatology appointment 30 Dec 16, and the doctor suspects melanoma.  I joined the melanoma support board, but I can't help but feel dejavu, as I'm going through a health crisis (very similar to the AN board) all over again.

Overall, I've had no serious complications from my AN and feel like I've been very lucky. I do have SSD and the occasional brain fart moment (that I can't completely rule out normal aging/stress as the cause of those moments).  I am so lucky when it comes to my AN. I just hope that I am as lucky when it comes to this whole melanoma thing. As I was in the MRI tube today, I was realizing how calm I felt and even told the technician that I was there for my "victory lap". All the hard work (treatment decision, surgery, recovery, etc) were behind me and now I was going to see the big "reveal". Anyways, I was surprised at how stress-free I was about the whole thing.

Now if I could just channel that in the melanoma department :)

I'll update with my MRI results when they came in - and if anyone has melanoma, look for me on the melanoma board: https://www.melanoma.org (username bluebells).

Hugs!
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

alabamajane

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Re: Post-translab - feeling great!
« Reply #12 on: January 04, 2017, 07:19:07 am »
NEbluebells,
So good to hear from you but so sad for you also. My sympathies and prayers go to you.
You have certainly had a difficult end to 2016.  A new medical issue is no help either,,, :-\

Keep that calm feeling and positive thoughts about the MRI results and the possible melanoma diagnosis,,, I am hoping 2017 will be a better year for you.

Just wanted you to know there are those of us sending "cyber" hugs and good thoughts your way,,,

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

NEbluebells

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Re: Post-translab - feeling great!
« Reply #13 on: January 04, 2017, 06:23:09 pm »
Thanks for your kind words, Jane :) 

I did receive a good phone call today with my MRI results - even though a sliver was left, the MRI shows nothing is left :) The results were read by my local ENT folks and are now being sent to the House clinic. It's almost too good to believe. I have to say that I did not expect those results - I have become so pessimistic :(

I should have been elated, but I am completely ambivalent...I think mostly because now I am obsessed with my newest medical crisis, coupled with being completely unprepared for our daughter's stillbirth.

 
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!