Author Topic: Post-Op: How long before normalizing?  (Read 5217 times)

Eddie

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Post-Op: How long before normalizing?
« on: December 26, 2015, 02:06:39 pm »
Hi Guys,

I'm about 3 weeks post-op with staples removed and i'm off all medication. I'm dealing with left side ear fullness which just happened last week when i slept on my good side. I felt my ear fill up with liquid and now it feels like i have swimmer's ear all the time. I also acquired a metallic taste in my mouth maybe within 2 hours of waking up everyday and i have severe acne breakout on my face and back. I've been off all medication for 5 days now as the surgeon wanted to take a unorthodox approach with me, so he only wanted me to on the steroids for 10 days. I've also tried to sleep on my surgery side, but i've been feeling weird like "clicking" sensations. Almost as if the titanium mesh is bending when i sleep on it and it's bothering me(mentally) Does anyone else have this issue?

I've already brought all these things up with my doctor and he said it's all very common post-op complications which will improve over time. So my question to everyone is how long did it take for you to normalize if you had these same complications?

1. Metallic/Salty taste in mouth
2. Swimmer's ear feeling (ear feeling full)
3. Dizziness/imbalance?
4. Acne?
5. Sleeping on surgery side? Titanium mesh issue?

Thanks!
-July 2015 - Woke up with congested left ear and lasted about 2 weeks - then came Tinnitus
-9/16/15 - ENT doctor diagnosed with Tinnitus
-10/2/15 - MRI Scan reveals 2.4 X 2.4 x 2.2 cm AN
-12/8/15 - Surgery NYP Dr. Michael Sisti
-12/9/15 - 100% tumor removal all nerves saved :D

hasovschib

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Re: Post-Op: How long before normalizing?
« Reply #1 on: December 30, 2015, 11:38:25 am »
Hello eddie, 3 weeks post surgery is a very short time. I also had the metallic taste, dizziness, full ear and trouble sleeping on surgery side.
The dizzines went away after like 3 month (after i stopped taking the pills they gave me) (i did do some balance exercises every day and walking as much as i could).
The same goes for most of the others things you mentioned (i did not have acne so idk).
Everybody is different so take it easy and give it time

jaylogs

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Re: Post-Op: How long before normalizing?
« Reply #2 on: December 30, 2015, 05:44:30 pm »
Hey Eddie, thanks for sharing what's going on with you.  We always tell people on here to try to just relax, breathe easy and TRY TRY TRY to be patient!  I know all those are tall orders but it's something you just gotta get through.  I think I heard a few times when I first started this wonderful journey is to expect at least 1 month for every hour you are in getting your surgery on.  Of course, everyone is different but looking back for me, that was about true.  I was out for 6 hours and it did take 6 months to feel totally human and almost normal again. Of course it's a new normal for me, as it is with a lot of people on here.  So try to take care of yourself and not rush it.  Like hasovschib says, 3 weeks post op is very soon.  Take care and keep us updated!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

mcrue

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Re: Post-Op: How long before normalizing?
« Reply #3 on: December 31, 2015, 03:54:08 am »
jaylogs,

thank you for your input and website.

can you elaborate on what your "new normal" has entailed for you  after the surgery?
i'm likely going to be having surgery in the next 2-3 months and i feel like i'm not being told everything that i should be expecting "post op."

for example, people often say when you make copies of an audio-cassette or copies of a photograph, the copies are never as good quality as the original.

does this same theory apply to brain surgery?
you're never going to be as good or the same as before the surgery?
any input would be most welcome.

many thanks
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Rhcdad

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Re: Post-Op: How long before normalizing?
« Reply #4 on: December 31, 2015, 09:50:45 am »
To early, keep with walking program and the and activities they gave you, plus get your rest. Just got to believe, We have a long journey and you have just started. Stay strong!
2.54 cm tumor
TransLab @ House Clinic
Surgery 10/27/15
Numerous Post Surgery Issues

jaylogs

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Re: Post-Op: How long before normalizing?
« Reply #5 on: December 31, 2015, 10:01:19 am »
Hey Mcrue!  So the "new normal" is different for everyone I guess.  For me, it was having the hearing loss, the balance issues, the headaches, the aches and pains I've endured with all my BAHA issues (which are now fixed, I think! Yayy!)  Also it seems, for me at least, something is a touch "off".  Hard to describe.  A lot of patients post-op seem to experience some sort of mental changes....most not too bad, but...just a tad off.  Hard to describe.  Even after 6 years things seem different.  But then that may just be normal aging going on.  But definitely in that first year it was definitely different for me.  I'm sure there's a lot of people who agree with this.  But then there are those that snap right back.  If you have any further questions, please feel free to ask! Take care!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Eddie

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Re: Post-Op: How long before normalizing?
« Reply #6 on: December 31, 2015, 11:34:13 am »
Thank you for the responses.

My surgeon told me to take some Aleve for the inflammatory to see if it helps.

Otherwise the dizziness seems to be getting worse and now i'm having weird sensations of "clicking" whenever i sleep on my surgical side.
-July 2015 - Woke up with congested left ear and lasted about 2 weeks - then came Tinnitus
-9/16/15 - ENT doctor diagnosed with Tinnitus
-10/2/15 - MRI Scan reveals 2.4 X 2.4 x 2.2 cm AN
-12/8/15 - Surgery NYP Dr. Michael Sisti
-12/9/15 - 100% tumor removal all nerves saved :D

jaylogs

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Re: Post-Op: How long before normalizing?
« Reply #7 on: December 31, 2015, 03:30:22 pm »
Yeah, you'll get weird sounds and feelings as things heal, but maybe a suggestion if  you are sleeping on your surgery side, try not too.  It was a long time before I could sleep on that side (and it was my goto side!)  and now my nonsurgery side is the goto side.  Works good too, deaf ear is out, hearing against pillow, can't hear a thing (except for the tinnitus, of course!) :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

LakeErie

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Re: Post-Op: How long before normalizing?
« Reply #8 on: January 01, 2016, 10:34:34 am »
One thing people here are surprised by is that delayed complications occur. I pointed a couple of years ago that as patients we tend to be so happy to have the surgery behind us that we experience what some surgeons call survivor's euphoria. This initial euphoria can mask some of how we feel. Then too there is the phenomenon of the steroid taper. Once the steroids are no longer present the cranial nerves can swell and inflame causing problems not immediately present the first weeks post op. A point I make and have not read about elsewhere is that if the tumor had mass effect on the brain stem and / or cerebellum, as it was in my case, then parts of your brain were displaced over time and it takes time for brain to get back in place and you need time to adjust to that as well.
To be specific about recovery timetables in my own case, I had taste distortions before diagnosis and still have them 4 years post op, but they have improved or I have just gotten used to them, probably a case of both applying. My vocal cord paralysis took 7 months to begin to heal and probably 18 months before I could project my voice and sound somewhat as I did before. I had bad balance problems, took maybe a dozen hard falls. My head always felt it was moving when it wasn't and when outdoors buildings and cars seemed to be moving up and down. I walked all the time moving my head up and down and side to side until it resolved in about 8 months.
As said before, it can take time for post op complications to resolve, we can heal only as fast as our bodies permit. Some of us had different ways the tumors affected the brain and cranial nerves so one person may resolve complications quickly while someone else requires more time. People who recover quickly after surgery are probably luckier than the ones who do not.
If one thing was more important than others in my personal recovery, it was rest. I would challenge my balance system and then rest, then do it again Try to recover a step at a time you will both get better and also adjust to the those problems that do not recover.
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

mcrue

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Re: Post-Op: How long before normalizing?
« Reply #9 on: January 10, 2016, 05:20:58 am »
Most of the surgeons I spoke with indicate for the most part that microsurgery doesn't change you except patients attribute their new hearing loss, or tinnitus, or balance issue as "changing them."

In most cases it may actually be the patient getting used to the new hearing loss, tinnitus, or balance issues that didn't exist previously.

Obviously we've all seen the YouTube videos and read the testimonials on this forum, and each journey is different.

All the best.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan