AN Surgery Update 10 Days Post Operation

[Jordybutt]

Most recent update - 14th Jan 2023 10 Days Post Surgery.

23y Female, South Australia
Links to pictures at bottom of post.
_______________________________

If you’re familiar at all with my journey, I was diagnosed with AN in November 2022 and thankfully I have been lucky enough to now have had retrosigmoid surgery on 4th January.

This will be a long post, I’m going to just discuss everything on my mind.

The surgery lasted 12 hours! Apparently the first 90 minutes was spent merely getting me in the right position with the head clamp, etcetera. That kind of puts in perspective how intense brain surgery is. I was also amazed to see just how many people were in the the theatre once I went in there, all I could see when I looked around me was at least a dozen people. All in there just for me, for the whole day. God Bless those people.

No complications from surgery. Complete loss of hearing on right side, which was expected. But… no facial palsy! Not even any degree of temporary palsy. I was concerned about this primarily and for this, I am extremely happy and grateful for the team who took care of me. 87% of the tumour has been removed. In March/April I’ll have a follow up MRI which will take a look at the remaining piece of tumour. The MRI will have a look for any changes in the tumour.

Now I’m on day 10 of my recovery journey, being the 14th January 2023 as I write this. I feel very good. Today in particular, seems like I’ve had a breakthrough.
This is the first day that I’ve woken up without pain…

More on pain… really surprisingly, I’ve suffered the most pain issues throughout my body relating specifically to being laid on my side for the whole surgery which was rather long. I feel like I’ve been in a fight. I don’t want to spend too much time discussing this pain as it seems kind of irrelevant, but I think it needs to be shared so that others can be informed a bit more than I was of the potential risks to the body from having such a long operation.

My left hip seems to have sustained some kind of deep tissue bruising(?) right in the joint where the femur connects to the pelvis, and I unfortunately have a pretty large hematoma on my left ribs/chest. All of this really took me by surprise. The staff in hospital aren’t overly concerned and it does seem to just be a result of sustained pressure. This will all heal in time, but I need physio for my hip because I can’t walk properly.

I feel like I was so prepared for everything in regards to the brain surgery element, so to have been rendered unable to properly walk due to being asleep on one side really caught me off guard! For mobility I used a wheelchair, then a frame, to a hobble with a person beside me, to a hobble by myself, a slightly less hobble by myself. I still can’t walk quite right but I know that it gets better every day. I’m so much better today than I was even a few days ago. I’ve just had a remedial massage to try to loosen up the hip joint a bit to allow me to get some extra range of motion, this seems to have helped. I’m also using magnesium and some other muscle relief lotions and ointments to try to soothe the area.

I just want to say, oxycodone and tramadol were almost useless and never took away my pain. For the first few days I just took as much as they would let me but all I would do is fall asleep, wake up in pain, take meds, repeat. I’m not sure why I wasn’t given anything stronger to actually stop the pain. All the meds seemed to do was make me sleepy and constipated. Potentially they didn’t administer anything stronger due to bleeding risk? I’m sure there was some sort of reason for it, but it would have been nice to not be feeling quite so miserable for the immediate days after surgery.
Regardless, that’s behind me now. I don’t need to take pain meds every day anymore thankfully, and even when I do feel the need for pain relief, paracetamol or ibuprofen are enough.

The following days after surgery were challenging in terms of dealing with feelings of dizziness/motion sickness. I remember struggling to spend any amount of time sitting upright. The rest of the stay was fairly short, I went home after 3 nights and I was glad of it. Hospitals are far too noisy a place to be when you’ve just lost half of your hearing and sound is distorted and nauseating. Plus, the neuro ward is a crazy ward to be on. So many different types of patients from dementia, to brain and spine injury… Sleeping my first night back at home in recovery was so quiet. Unfortunately I’ve been struggling to sleep due to the pain in my body, I get uncomfortable very quickly. Although, every night is better than the last. I’m still waiting for a night of solid sleep without waking up.

At the moment I’m still in a very relaxed mode. I’m making sure I remain as mobile as possible (even though it’s SO HOT in Adelaide right now in high 30’s all week - 90f.) to ensure my body doesn’t suffer from immobility. I just get up and walk around the house, try to stretch my hip joint as much as it will let me. I’m working hard to do things for myself that I have been needing help with such as showering and washing/brushing my hair.

As I stated earlier, today I’m not in any pain, and it’s not even been 2 weeks since the surgery. I’m really thrilled about this. The doctors recommend 6-8 weeks to full recovery. I took 12 weeks from work, I am not in any rush to get back.

All in all I feel very satisfied with the outcome. I am overjoyed the brain surgery element went perfectly and I could not have asked for anything better.

This week I’m catching an inter-capital passenger train to a nearby state to visit loved ones. I bought the expensive premium tickets. This will be my first time on the journey and I’m rather excited for it. Recliner chairs in an air conditioned cabin, being brought coffee and juice, watching the Australian countryside go by…. I am so blessed.

I guess that’s it for this post. I will be doing some more updates and reflections in the upcoming weeks because this journey isn’t over yet.

I don’t know what you want to know most. So, as always, feel free to ask away. There’s so much to discuss I feel like I haven’t covered it all

Cheers
Jordy.


Links to pictures below.
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

[bri-82]

Congrats on the surgery and making it through the hospital stay (may be the worst part). Many VS tumors I read about are quite a bit smaller (relatively speaking). It unfortunate that you lost your hearing on one side. But given the size of your tumor its not surprising to hear (please applaud my play on words). I also lost my hearing on my right side after my first surgery. I was a few years older (late 20s). You'll adapt in time (walking and balance as well). You mentioned a hematoma on your left rib/chest. From what? I had a large hematoma as well immediately after surgery. As for the pain... generally speaking it might be your young age and the evolving paradigm with respect to pain treatment (referring only to U.S., not sure about AUS).  You'll have to tough it out unless you feel there is something wrong in which case you need to call the doctor. Keep moving... it will help your brain compensate for any damage to your vestibular system. Again, congrats. I hope this is the beginning of the end of this issue for you Curious to hear about the results of your follow-up MRI.

~BM

[Jordybutt]

Congrats on the surgery and making it through the hospital stay (may be the worst part). Many VS tumors I read about are quite a bit smaller (relatively speaking). It unfortunate that you lost your hearing on one side. But given the size of your tumor its not surprising to hear (please applaud my play on words). I also lost my hearing on my right side after my first surgery. I was a few years older (late 20s). You'll adapt in time (walking and balance as well). You mentioned a hematoma on your left rib/chest. From what? I had a large hematoma as well immediately after surgery. As for the pain... generally speaking it might be your young age and the evolving paradigm with respect to pain treatment (referring only to U.S., not sure about AUS).  You'll have to tough it out unless you feel there is something wrong in which case you need to call the doctor. Keep moving... it will help your brain compensate for any damage to your vestibular system. Again, congrats. I hope this is the beginning of the end of this issue for you Curious to hear about the results of your follow-up MRI.

~BM

Hi Bri,

Thank you so much. The hospital stay was fairly uncomfortable as it’s just not an environment that is restful. Yes, I don’t often find others with a VS my size or larger. I think fortunately/unfortunately the symptoms were so subtle that it was able to grow quite large before I investigated the issue.
How come you mentioned first surgery? What happened to make you have more than one?
Regarding the hematoma, all the medical staff (nurses and doctors) seemed a little shocked and I don’t have an answer as to how it happened. But to me, from the shape and size it felt like a bulge was formed from being laid on my side over a gap in the table or something? You know sort of how skin can make a muffin top over surfaces? It’s hard to describe via text. But it just seems like my skin was bunched into that spot and so all the fluid collected there. Can you tell me more about your hematoma?
Fortunately I’m not needing intense pain treatment now. However in the hospital I certainly would have preferred to have had the pain taken away entirely. Everything seems fine now thankfully though.
Thanks again for the congratulations. I’m actually on the train at the moment and it was a bit unusual at first with the travel sensation but it feels completely normal to me now. Trying to move whenever my body will allow me.
I also how it’s a one-and-done thing, but I have also read a lot about people requiring follow up surgeries or treatments. I’m not too concerned because worrying won’t change anything so I’ll just be patient and wait and see results of next MRI. I will be updating on here in the following weeks about my progress and of course the MRI as well so watch this space. I hope what I’ve shared has been of some value to you.
Cheers
Jordy.

[Greece Lover]

Thanks for this post.  and Congratulations?!  Recovery is tough, but the body is amazing. 
I, too, had lots of weird pain that was simply from body positioning during the surgery. My neck was sore for weeks!

Keep up the good work and positive attitude.

[donjehle]

Thank you, Jordy, for the wonderful report.  Your detailed information is SO helpful for those of us in the ANA community!  I'm looking forward to your future reports.  I'm also thankful to God for your surgery results and no facial paralysis!

Best wishes on your trip and on your continued recovery!
Don

[bri-82]

@Jordy

The surgeons decided to leave a part of the tumor alone during my first surgery (sub-occipital) because there was a lot of nerve involvement and it was not an easier tumor to remove (some are easier to remove than others). There was also a portion of tumor sitting along the brain stem which is an area they do not want to touch (for obvious reasons). In the following year I received Gamma Knife to prevent any new growth of what was left. The Gamma Knife failed after about 3 years or so and I needed another surgery.

The second surgery I went through was done using a translabyrinthine approach which requires a fat graft to plug up the ear canal(?) to help prevent cerebrospinal fluid leak. In my case they took this small graft from my lower left abdomen which then had a small drain placed on/in the wound. The wound drain failed for some reason and that resulted in a large hematoma on my left side.

Your posts are valuable because you are one of the few others 1) that are quite young and 2) you had a large tumor. Also, you are in AUS and it is important/informative for others to read about protocol and treatment for the condition in Australia. I am in the U.S. and most of the posts I read are about treatments in the States.

~BM

[davebanninga]

Hey Jordy, amazing work! I followed your story with a bit more intrest as we are both in our 20's with a fairly large AN

Iam really happy for you, that by day 10 you already felt pretty good!

My surgery will be done latest 29th Monday earliest this coming Monday. Because of some complications ill dedicate a post for

[Jordybutt]

Thanks for this post.  and Congratulations?!  Recovery is tough, but the body is amazing. 
I, too, had lots of weird pain that was simply from body positioning during the surgery. My neck was sore for weeks!

Keep up the good work and positive attitude.

Thank you! It’s been a serious journey from pre to post op and dealing with these unexpected challenges. But every day it gets better fortunately. I’m now more than 2 weeks out post op and it feels like it could have been a month ago.
Agreed on the surgery pains. And other weird stuff like bruising from the head clamp!
Cheers
Jordy

[Jordybutt]

Thank you, Jordy, for the wonderful report.  Your detailed information is SO helpful for those of us in the ANA community!  I'm looking forward to your future reports.  I'm also thankful to God for your surgery results and no facial paralysis!

Best wishes on your trip and on your continued recovery!
Don

You are most welcome. Thank you for following my journey so diligently. I’m now more than 2 weeks post op and I’ve come a very long way since this post, I’m walking sooo much better now. A new challenge is spatial awareness, in public places I’m pretty dizzy and stumble a bit.
Thanks be to God in the highest for letting this miracle of perfect surgery happen!

Thanks for your wishes. The trip was amazing, ate lots of oysters. It took my mind off the recovery a bit too and I just felt normal for a bit.

Cheers
Jordy

[Jordybutt]

@Jordy

The surgeons decided to leave a part of the tumor alone during my first surgery (sub-occipital) because there was a lot of nerve involvement and it was not an easier tumor to remove (some are easier to remove than others). There was also a portion of tumor sitting along the brain stem which is an area they do not want to touch (for obvious reasons). In the following year I received Gamma Knife to prevent any new growth of what was left. The Gamma Knife failed after about 3 years or so and I needed another surgery.

The second surgery I went through was done using a translabyrinthine approach which requires a fat graft to plug up the ear canal(?) to help prevent cerebrospinal fluid leak. In my case they took this small graft from my lower left abdomen which then had a small drain placed on/in the wound. The wound drain failed for some reason and that resulted in a large hematoma on my left side.

Your posts are valuable because you are one of the few others 1) that are quite young and 2) you had a large tumor. Also, you are in AUS and it is important/informative for others to read about protocol and treatment for the condition in Australia. I am in the U.S. and most of the posts I read are about treatments in the States.

~BM

Hi again Bri,
Thank you for the enlightening information. I’m sorry to hear of the troubles you had. That hematoma issue sounds pretty nasty. I’m not sure how I got mine as explained in my previous post, I think from laying non a certain way, and I’m still waiting for normal sensation to return.
Is it common for gamma knife to be unsuccessful? I’m reading a lot of other reviews about gamma knife and many others have said it wasn’t successful for them also.
Well thank you! That is all I can hope for, to be able to help others through sharing my experience.
Regards
Jordy

[Jordybutt]

Hey Jordy, amazing work! I followed your story with a bit more intrest as we are both in our 20's with a fairly large AN

Iam really happy for you, that by day 10 you already felt pretty good!

My surgery will be done latest 29th Monday earliest this coming Monday. Because of some complications ill dedicate a post for

Hi Dave,
I’ve seen that you asked some questions on other posts of mine which I didn’t at the time have the energy to respond to, apologies for that. If you still have questions feel free to ask and I will answer to my ability.
Your surgery is close now, trust me that once it’s all over that this waiting period will feel like nothing. To me, i can’t believe I’m already 2 weeks out and everything is all done. It felt like such a long time just waiting.
Happy to help any way I can. Thanks for reading.
Cheers
Jordy

[bri-82]

@Jordy

From what I've been told, Gamma Knife seems to be quite successful particularly with smaller tumors. As the tumor volume increases though, there is more of a chance for re-growth etc... but sometimes even when re-growth or new growth occurs it is not problematic overall because an intervention is not needed. There are many variables involved. There are also other similar treatments to Gamma Knife that are available like Cyber Knife.

~BM

[Midway1]

Hey Jordy.

Congrats on your successful surgery. I’ happy for you. I wish you the best in your recovery phase. I had a similar hip pointer damage due to being on my side for 7 hours. It really shook me because the hip pain in the hospital was intense and I was constantly asking for me pain medication. I had to sleep on my back to avoid putting pressure on it or hyperextending it.  I had uneven swelling up and down my leg and scary looking bruising.

The neurosurgeons eventually recommended me to an orthopedic doctor who after looking at me for 5 mins prescribed a different set of meds and physical therapy. I limped into physical therapy with one foot in a slipper due to swelling. After physical therapy and working out at home for three months I was able to run again. You are not alone. Good luck with your stuff

Scott

[Jordybutt]

Hey Jordy.

Congrats on your successful surgery. I’ happy for you. I wish you the best in your recovery phase. I had a similar hip pointer damage due to being on my side for 7 hours. It really shook me because the hip pain in the hospital was intense and I was constantly asking for me pain medication. I had to sleep on my back to avoid putting pressure on it or hyperextending it.  I had uneven swelling up and down my leg and scary looking bruising.

The neurosurgeons eventually recommended me to an orthopedic doctor who after looking at me for 5 mins prescribed a different set of meds and physical therapy. I limped into physical therapy with one foot in a slipper due to swelling. After physical therapy and working out at home for three months I was able to run again. You are not alone. Good luck with your stuff

Scott

Hi Scott,

Thank you so much for sharing your experience with hip flexor damage. You are the only other person so far that I’ve heard this from and I’m glad to not be alone. Although, not glad you experienced the same thing I have. Yes, the pain was so severe, I was also continually asking for pain medication and I’m now coming to realise that the hospital staff seemed to have dropped the ball with my pain management. I wasn’t given the treatment that you did even though I wasn’t even able to walk! But to hear that you have been able to treat it, that is reassuring. I will make sure I get to physio so I can begin my journey back to regular exercise, which I’m sorely missing.

Cheers
Jordy.