Author Topic: Four Months Translab post-op  (Read 1254 times)

mmori

  • New Member
  • *
  • Posts: 4
Four Months Translab post-op
« on: December 12, 2018, 03:58:51 pm »
Hello all! My husband had Translab on August 30, 2018, so we are approaching four months post-op. His 14 mm AN was completely removed with only minor, temporary facial weakness that quickly went away. The hearing loss does hasn't seemed to affect him as he was already dealing with hearing loss and I believe had already adjusted prior to the surgery. He still is very off balance and deals with fatigue and a "fuzziness" (as he describes it) in his head. You can see it in his eyes.  I know this is typical but does it go away or is this the "new normal"? Anything he can do to help alleviate it? Thanks so much for any tips/advice. This site and organization has saved us!
« Last Edit: December 12, 2018, 06:44:58 pm by mmori »

MT

  • New Member
  • *
  • Posts: 35
  • Hoping to recover from facial palsy...
Re: Four Months Translab post-op
« Reply #1 on: December 13, 2018, 10:09:47 am »
Hi Mmori,

Recovery is a unique process, what do your doctors say? Are you guys seeing a vestibular therapist? Take care of his nutrition as well.

Good luck.
No symptoms except mild hearing loss
RS procedure on 26-Oct-18 (2.7 x 2.5 cm AN)
Deafness and facial palsy on right side
26-Feb-19 MRI showed 0.8 cm of leftover tumor
Slight movement on ~7-Jul-19 but mostly paralyzed

Full story:
https://www.anausa.org/smf/index.php?topic=24255.msg97977829

Alyssa

  • New Member
  • *
  • Posts: 23
Re: Four Months Translab post-op
« Reply #2 on: December 14, 2018, 10:56:10 am »
I am 3 month post op. Although I still have facial weakness, off balance and fatigue, all symptom is getting better and better day by day. As long as I feel better and better I am not worry about it.

I tried to balance my life and work. Once I feel tired I just take rest which bring back to good condition.

Currently I see Physical therapist each week and all test shows I am making progress in balance and others. I start to do exercise, take a long distance walk and read and house work. All is helpful.

PT told me fatigue and fuzziness were very common because your brain losing one side balance nerve is working hard on balance compensation. It takes time for brain to adopt. Exercise following PT is very helpful for me :)

Take care from now.



 

jami

  • Full Member
  • ***
  • Posts: 115
Re: Four Months Translab post-op
« Reply #3 on: December 14, 2018, 06:00:33 pm »
Hi Mmori,

I had my surgery mid-August, and completely relate. My drs tell us that I am recovering with amazing speed, and I “graduated” PT, but still struggle many days.

The hearing loss is more difficult than I expected, as there are activities in which I may look ok during, but it just is not working. I told my admin today that I can do no more lunch meetings (just can’t have a good discussion, too loud) and I bailed on dinner 2 of 3 nights during business travel this week (too loud). The patience of people as I remind them what ear doesn’t work makes a big difference. But adjusting to a new normal has hit my confidence harder than expected.

What Helps is when my husband acknowledges that we have a new normal, but doesn’t let me wallow in it. And to respect my need to rest (as Alyssa notes). A lot of rest.

And walk. Lots of walking. Good to get the space (time) and support to do it.

Finally, just today I reminded myself that it’s not even been six months and — it was brain surgery ...healing will take time.

Everyone is different.





Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

Alyssa

  • New Member
  • *
  • Posts: 23
Re: Four Months Translab post-op
« Reply #4 on: December 29, 2018, 12:52:15 am »
We went to Lake Tahoe for one week vacation, I found facial weakness was gone completely, yeah.

I also took walk everyday when family went skiing. One day I walked 4.8 miles in the snowy road. I feel much better than before. I stopped PT last week.

I wish I could be like before in 2019. Keep faith in my heart to recovery as much as I can.
 


MT

  • New Member
  • *
  • Posts: 35
  • Hoping to recover from facial palsy...
Re: Four Months Translab post-op
« Reply #5 on: January 01, 2019, 10:41:00 am »
Hey Alyssa, really happy for you that no facial nerve issue anymore.

Can you please share what procedures your PT did? I have tried and not really happy.

* I am 2 months + 5 days since surgery. Fully facial palsy on right side (it is just expressionless).
* 1st PT I tried just did eletric-stilmulation, never went to him as discussion for next session was similar.
* 2nd PT was a bit different, does massage for 2 minutes or so then makes me lay down on Trophic Eletro-stimulator for 15 minutes. Went to him thrice and don't want any more of *these* sessions.

Currently I massage my face myself looking in mirror and do exercising. Please share with whether your PT was the same or s/he did thing differently?

Thanks
No symptoms except mild hearing loss
RS procedure on 26-Oct-18 (2.7 x 2.5 cm AN)
Deafness and facial palsy on right side
26-Feb-19 MRI showed 0.8 cm of leftover tumor
Slight movement on ~7-Jul-19 but mostly paralyzed

Full story:
https://www.anausa.org/smf/index.php?topic=24255.msg97977829

LakeErie

  • Sr. Member
  • ****
  • Posts: 347
Re: Four Months Translab post-op
« Reply #6 on: January 01, 2019, 12:12:26 pm »
I had delayed facial weakness after RS surgery in 2011 and grade IV facial paralysis after GK in 2016. Both resolved after tapered doses of steroids, Decadron.  In 2011 the weakness resolved completely in a few weeks. After GK the paralysis resolved to grade II in about 8 weeks.
Did you ever have steroids immediately post surgery? Or since?
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

MT

  • New Member
  • *
  • Posts: 35
  • Hoping to recover from facial palsy...
Re: Four Months Translab post-op
« Reply #7 on: January 02, 2019, 08:17:48 am »
Quote
Steroids

Yes, they gave me Dexamethasone for a month (post-surgery).
No symptoms except mild hearing loss
RS procedure on 26-Oct-18 (2.7 x 2.5 cm AN)
Deafness and facial palsy on right side
26-Feb-19 MRI showed 0.8 cm of leftover tumor
Slight movement on ~7-Jul-19 but mostly paralyzed

Full story:
https://www.anausa.org/smf/index.php?topic=24255.msg97977829

mmori

  • New Member
  • *
  • Posts: 4
Re: Four Months Translab post-op
« Reply #8 on: January 21, 2019, 03:24:10 pm »
Thank you all for your replies. I sincerely appreciate it. It helps to know that what my husband is experiencing is typical after such an extensive surgery. I just wish I knew if it would get better. Based on all the responses I will pass along the advice of rest to him. His job requires a lot of staring at a computer screen showing spreadsheets - which cannot be good when he's feeling fuzzy - and travel - which is exhausting. We have our five month post-op appointment with his surgeon so I will update this post with what she says. Thank you again!

jami

  • Full Member
  • ***
  • Posts: 115
Re: Four Months Translab post-op
« Reply #9 on: February 04, 2019, 12:52:40 pm »
Mmori,

Your husbands job sounds a bit like mine -- a lot of travel (international) plus computer time. I finally broke down and got a drs note requiring business class for international travel, which has helped a little bit. My #1 way of dealing has been rest and walking. And its still not perfect. That said, when it gets bad i do a 5 min walk or go up/down the stairs and its amazing how I can bounce back.

Wishing him the best!

Jami
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

Eschulze

  • Newbie
  • *
  • Posts: 1
Re: Four Months Translab post-op
« Reply #10 on: March 12, 2019, 12:51:22 am »
One year two months recovery for me.  I feel wonky in my my head sometimes and trying to get my workflow back still.  I was a top producing real estate agent, but last year I lost all of my momentum so I feel like I am starting over what took years to build up the first time around.

After surgery felt like being on a capsizing ship the first time I went for a walk.  Not anymore.  Everything feels level now (kind of).  I would have killed for water.  My throat was on fire.  My brain was firing like I was in my 20’s (I am in my 50’s) - unfortunately that only lasted a day or two lol.  I think it was the steroids.  Surgery was not bad at all.  I was out and then it was over and I was awake.  I did have severe post op anemia, but thankfully they didn’t give me a transfusion.  That took about a month to recover from.

Best advice I got was from Dr. Stewart at Loma Linda.  If something makes you dizzy or is hard to do, don’t avoid doing it.  I’m fact do it an extra 20 times.  Things like picking up a pencil or turning your head quickly.  You have to retrain your brain, so to speak.

I feel like I am so much more aware of it then I was before the surgery.  The incision spot is sensitive and annoying.  I spray rose water on it to relieve the occasional tightness I feel.  The rose water is the only thing that I have found that soothes it.

I hike, walk a lot, go to dinners and loud places.  Nod my head and follow the conversations as best I can.  Life is different, not better or worse, just different.  I have had one follow up mri.  It looked good.  So I don’t plan on going back for any more unless my Dr insists.

Best wishes to you and your husband!  My husband balances his compassion with some level of expectation for me to jump back into my routine.  He is my rock.  And he has found the right level of inspiration for me.

 


anything
anything