1 Year Post Restrosigmoid Surgery

[Jordybutt]

Hi all,

24y female, South Australia.

My last post was a 7-week update and now it has been 1 year (2 days ago) since the surgery.

These are my previous posts:
Diagnosis Information
https://www.anausa.org/smf/index.php?topic=25305.msg979783463#msg979783463
Surgery Booked - Pre Surgery Information
https://www.anausa.org/smf/index.php?topic=25334.msg979783616#msg979783616
10 Days Post Op - includes photos
https://www.anausa.org/smf/index.php?topic=25348.msg979783728#msg979783728
AN Surgery Update 7 Weeks & Thoughts on SSD
https://www.anausa.org/smf/index.php?topic=25390.msg979783921#msg979783921

TLDR of my story with AN:
Late October:
I noticed hearing loss and hearing quality loss in my right side which eventually led me to an MRI which showed a 3cm AN on the right side pushing into brain stem.
January 4:
12 hour surgery (was estimate 6-10 hours) restrosigmoid approach to remove 87% of tumour - 13% remaining to preserve facial function.
Complete deafness in right side but no facial palsy.
Woke up from surgery with a left rib cage hematoma (ouch) and a hip issue so bad I couldn't walk.
Main symptoms related to brain surgery afterwards dizziness, nausea, vertigo, motion sickness, noise and light sensitivity. Difficulty sleeping due to pain in my hip. Some pain in brain area was minimised by overwhelming pain in my body.
Looking back I see how basic things were an effort like showering, getting dressed, brushing my hair. I would need to take rests as this would really exhaust me.
At the 10 day mark I felt a majority better and even felt up to travelling interstate by train.
7/8 weeks:
I had vestibular physiotherapy mainly to help balance and coordination. I found this a little helpful but overall improvements were minimal but I think this has more to do with my chronic hip issue (to be discussed later).
Post op symptoms noticed, tinnitus and echo-location/spatial awareness challenges, feelings of drunkenness. Life generally back to normal.

__________________________

1 Year Update

So a lot has happened in my life, what a crazy year 2023 was. In amongst all the madness my brain has been doing very well in terms of recovery from brain surgery. I haven't had any side effects that were unexpected or needed management.

I have noticed tightness of the scalp muscles and neck nearby the incision site, it sometimes needs some massage to loosen up. I am still deaf (wah) in the right side, but I didn't expect the hearing to come back at all. I have tinnitus all the time. I sometimes notice it more when I'm tired or in a blaring environment, it's like the tinnitus ups its volume to match environment. Spatial challenges still exist and I notice when I turn my head or body too quickly I can feel dizzy and stumble. Balance is probably 70% of what it used to be. All symptoms are much stronger when tired. Being half deaf mostly isn't an issue, I just ask people to repeat themselves. If I'm having a low-resilience day this can be challenging, but it is what it is.

I'm due for a check up MRI on the remaining sliver of tumour to look for any changes. Will keep updated.

Okay, guys, I'm going to have a bit of a complain now. This hip issue. Is killing my spirit.
My hip still hurts! Ive spent a lot of money on various specialists and expensive scans and the conclusion by an orthopaedic surgeon is that I have gluteal tendinopathy. So it's a tendon issue, not a muscle or bursa issue (I thought it could have been bursitis). Cortisone shots aren't going to help.
There is good news, that I can return to activity that I used to do before and it will unlikely make the condition worse or cause injury. I need to monitor the discomfort and obviously don't push it so far that I cause myself mobility issues like limping the next day.
But the thing is, this doesn't really get better quickly. Tendinopathy apparently takes months to years to recover... if they recover...
Typing about it makes me want to cry. I have a new chronic condition that I didn't have when I went into surgery. I haven't seriously ran for exercise in more than 14 months. So I have pain and discomfort in my hip, and reduced mobility. This has also effected other parts of my pelvis, hip, and lower back, which causes me pain in those areas too. The ortho concluded that by all estimates this issue is from surgery since my xrays showed perfect hip structure and I was a fit and active young person prior to surgery.
This has caused me a great depression. I have really struggled with the loss of my active lifestyle and due to these weird new problems I'm having significant trouble building anything back up again. 
My conclusion is that during surgery I was not placed properly or the use of pressure mats wasn't executed correctly which caused me this deep pressure pinch on my tendons which has caused the tendinopathy.
So amongst the chaos of my life, additionally I have a chronic condition to manage on top of everything, and it all just feels impossible sometimes. I have trouble lifting my spirits.

Really, the whole brain surgery element went perfect but this hip issue really is quite a bane on my existence.

I am back to work as usual and now trying to save up the money I spent when I took time off to recover from the surgery. I am grateful to be able to work and have the option to increase my finances when I feel like I can.

Sorry I couldn't conclude this post on a happier note.

Maybe on my next post I'll show how much my hair has grown in a year. It grew more quickly than I thought it would.

Til next time all.
Jordy.

______________________
Links to all photos:

Hair/profile before the surgery
https://files.catbox.moe/99xkbg.jpeg
Hair profile before and 6 days post
https://files.catbox.moe/eo8ul9.jpeg
The first time I saw the tumour
https://files.catbox.moe/ina0al.jpeg
Staples from the clamp, 3 days post
https://files.catbox.moe/xn6gyi.jpeg
Staples out, 3 days post
https://files.catbox.moe/eyiyx1.jpeg
Scar 3 days post
https://files.catbox.moe/54nkep.jpeg
Scar 6 days post
https://files.catbox.moe/oz7dc0.jpeg
Scar 10 days post
https://files.catbox.moe/miay5d.jpeg
One month hair up
https://files.catbox.moe/hy74ud.jpeg
One month hair down
https://files.catbox.moe/ym6of7.jpeg
7 weeks
https://files.catbox.moe/b1qr5e.jpeg

[donjehle]

Thank you, Jordy, for the update!  It was great to hear from you again.  It's good that the brain surgery itself went well.

I am sorry for all the hip pain you have been experiencing.  That is not typical of those who are having acoustic neuroma treatment.  Since yours began when you had your surgery, it does make me wonder if someone during your surgery didn't do something correctly because having hip pain like you have should not have happened.  I'm not a physician so I don't know if it was improper use of pressure mats or what, but clearly something was done incorrectly.

I wish you the best in your continued recovery!
Don

[Jordybutt]

Thank you, Jordy, for the update!  It was great to hear from you again.  It's good that the brain surgery itself went well.

I am sorry for all the hip pain you have been experiencing.  That is not typical of those who are having acoustic neuroma treatment.  Since yours began when you had your surgery, it does make me wonder if someone during your surgery didn't do something correctly because having hip pain like you have should not have happened.  I'm not a physician so I don't know if it was improper use of pressure mats or what, but clearly something was done incorrectly.

I wish you the best in your continued recovery!
Don

Likewise great to hear from you.
Yes, I agree re pressure mats. That's a lot what it seemed like given that I had a baseball sized hematoma on my left side as well. Certainly not what I would expect for AN removal.

Jordy