Post TL Surgery

[TH74]

Hi everyone. I am new to forum. Had a successful TL surgery 3 days ago. Fully removed and no facial damage, so very lucky and super chuffed.

Currently in hospital undergoing physio and seems to be going well (haven't needed the sick bowl today). The physio's and doc's have said I can go home this evening and I was just wondering if this feels a bit premature? I know the doctors are the experts, but would be nice to know that its "ok" to be going home 3 days after this type of surgery (my TL was just shy of 10.5hrs).

Thanks folks!

[Steve_04]

Hi, if you’re recovering well then yes it’s ok to go home.

If you’re independent in hospital ( getting up out of bed, walking fairly steady to go to the toilet etc ) then do you need to stop in ?

I had 17 hour surgery on 6th April and came home on the 10th April with right palsy and hearing loss, had some balance issues and not all was removed.

[Gardener21 in reply to Steve_04]

Morning.. interesting to read about your surgery.. mine was 12 hours long on the 23rd April, discharged on 1st May.. I’m the same as you, right side deafness, right side frozen face & balance is slightly worse than pre-op, tumour not all removed to save my facial nerve. How are you progressing? Today is the first day I’ve got up without a headache, so that’s a very small plus..! My frozen eye is quite annoying, I’ve got eye drops but am manually ‘blinking’ it.. I’m also walking round the block unaided (takes about 15 mins) if I think I can.. I’m thinking my recovery expectations were/are too high and I’m finding it very slow. Are you finding it slow too? I’ve been given facial massage to do but on the whole, despite being inundated with info pre-op, not been given a lot to go on when discharged… I’d be interested to hear how your recovery is progressing, hope it’s good!!!

Kindest regards

Brigitte

[Steve_04 in reply to Gardener21]

Hi, I think my recovery is going fairly well. About two weeks ago I stopped getting the pressure headaches I was getting.

My eye is annoying as that doesn’t blink and no matter how I try and use those muscles it just won’t blink. I think it only closes about 95% when I go to sleep but I use the drops. Boots own brand seem do ok.

Waking is good but make sure someone is with you incase you need them to hold onto etc

I was waking slow to begin with and after a week I was doing 2 miles a day and now I’m walking quicker as time goes by, not quiet pre op speed but doing good.

No dizziness looking over shoulder so that’s helped clear me to drive assisted with someone who can drive next to me to begin with.

You’ll be ok, keep us updated on progress.

[Gardener21 in reply to Steve_04]

Think I need to make a bigger effort to walk more or further.. I lost 7 pounds while in hospital & it’s left me feeling very weak so last week (first week home) I’ve been more focused on feeding myself up and resting properly.. can’t imagine driving at all at the moment & trying not to let that stress me out as I know it’s very early days.. The pressure headaches are something else, I’m so relieved NOT to wake up with that today.. I’m a good 2 weeks behind you so it’s reassuring to hear that you are doing well, & after such a long operation, it’s so much for the body & mind to cope with.

I’ll let you know how it’s going & likely ask you more questions!

Kindest regards

Brigitte

[Steve_04 in reply to Gardener21]

No problem at all. Pushing yourself can help but try not to push yourself to much. I was pretty much resting most of the day and the waking was broken up between doing a morning dog walk with the family ( I wasn’t at the back due to being slow) then kids went back to school so In the afternoon I started off with walking to pick them up ( other half with me at all times ). Now what would have been a 25 minute walk is becoming a 10-15 minute walk. Prior to having my op, I was already doing 4-6 miles on average a day and although I’m not back to that point yet I’ll get there.

I had targeted myself for 6 week recovery but that’s unrealistic due to the facial palsy side of things which I’ve come to accept. Although I knew it was a risk before the op and tried to keep an open mind of it becoming reality I was hopeful I’d have it all removed and no palsy which was hard to take and emotional when I found out.

Keeping positive and not dwelling on it helps with the mental health side of recovery to.

Wishing you a good recovery.

[Gardener21 in reply to Steve_04]

I was regularly walking 3-4 miles a day too before the op, and like you, WILL get back there, it’s a fine line between doing too much & being anxious about not doing enough.. trying to let my body guide me. I must admit the facial palsy has upset me too, likewise, I knew it was a risk. The consultant assured me it will return so only time will tell. I can move my mouth a little more, it’s the staring unblinking eye I find hard to bear. That said, I’m thankful I’m here to tell the tale & appreciate there are others much worse off.. just hard to look at my poor face, it looks like I’ve had a stroke 🙁

Thank you for your replies, very encouraging, I hope you go from strength to strength.. have a good day 😌

Kindest regards

Brigitte

[TH74 in reply to Gardener21]

Keep up the good work and positive attitude that you clearly have Brigitte and I know you will continue to get stronger by the day. You are doing amazing!

[Gardener21 in reply to TH74]

Thank you, it’s progress, but very slow… Reading your replies to Steve about pillows… I got my sister to buy one of those big V shaped support pillows, a godsend for the first week home as I wasn’t comfortable lying too flat, especially on the op side.. I find myself sleeping on my back a lot of the time, not natural for me as I’m also a side sleeper. I have a bit of pain in my right arm too that wakes me up, I’m assuming this is from being laid on it for so long during the op… Today is my first day (2 weeks since the op) where I haven’t got ‘the headache’, so I’m sure this will ease for you in time. Good luck with your walk, I’m going round the block too in a bit…

Kindest regards

Brigitte 🙂

[TH74 in reply to Gardener21]

Thanks Brigitte. I didn't think about those V pilows, but just having googled, there are quite big ones that seem to hug you. Think might help keep me in place. Definitely worth a try, so will get one ordered later.So glad to hear your free of the nasty headaches. You might say your progress is slow, but your op was only 2 weeks ago. I think you're doing brilliantly. Enjoy your walk and be safe. Nothing like a bit of fresh air xx

[Gardener21 in reply to TH74]

I got mine from M&S (or rather my dear sis did), it was only £20 ish and is excellent, supports my head & neck, very comfortable, I’d definitely get one.. Agree, fresh air is the best tonic, we have the summer weather to recover, much rather that than the winter… have a good day, let me know how you find the V pillow 👍🏽

Kindest regards

Brigitte 🙂

[TH74 in reply to Gardener21]

Other half order me a V pillow from Amazon so will be here tomorrow.Hope your walk went well. xx

[TH74 in reply to Steve_04]

Thanks for reply Steve. I was worried was being discharged too early. That said, although last nights sleep was still not great, it was so nice to be home with family and in own bed. Sounds like you are recovering brilliantly after such a long surgery. My headaches are bloody awful still right now. When did yours start to ease off? Its great to hear your headache free today. Also great to hear you back behind the wheel. Wishing you all the best with continued recovery

[Steve_04 in reply to TH74]

Hi, it took around 4 weeks for my headaches to go, but there was 1 day of lapse yesterday but none today.

It can be uncomfortable with sleeping. Especially on the side of surgery. ( atleast for me as I’m a side sleeper). I had to buy another pillow which helped a bit with this.

Although I’ve drove short distances with my partner and a couple of very short trips on my own, I’m not the driver I was. I’m competent but find I’m cautious with observations in comparison to before. So hopefully in time that’ll get better to.

Wishing you well with recovery, you’ll get there.

[TH74 in reply to Steve_04]

Great shout about new pillow. Sleeping has been awful, no only as its only been 4 days since surgery, but also I'm a side sleeper - but on my surgery side. I've tried wedging myself but with around 30mins of nodding off I find myself waking up having rolled over to surgery side. Still, I can't be complaining about a bit of sleep deprivation with everything else seemingly gone so well. Going to try a (very) slow walk to the end of my road this morning. One step at a time as they say!

[Steve_04]

Hope the short walk goes well. The broken sleep does get better. My sleeping in hospital was horrendous, 3-4 hours a day maximum from broken sleep. Then when I got home, sorted my pillow situation out the sleep got better, albeit broken sleep however I was getting more sleep.

[TH74 in reply to Steve_04]

Walk wasn't great, I must say. Went with other half and she brought a deckchair in case I needed a sit down! Lol! Not sure what I was expected but was tougher than I thought would be. Walked around our block which is almost a mile, and it took best part of an hour. Felt knackered when got back home and needed to have a lay down. First day out of hospital and I know things will get easier as I heal. Such a strange sensation of my legs going one way when your not drunk and you are telling them to go straight! :-)My goal is to hopefully knock a good 15-20mins off the time by the end of the week.

[Steve_04 in reply to TH74]

Hey even if you take all of today and tomorrow to rest. Baby steps, build yourself up. But you did it. It may have taken you an hour but it doesn’t matter. You did it. It’s normal for you to rest. Maybe next time just aim for 1/4 or 1/5 of the way , then stop turn around , build yourself up. Pace and distance will come in time. Even if you did 1/4 mile twice a day. Don’t forget everyone is different and everyone’s body is different , keep your goals there but also know when you feel you maybe doing to much, then resting up is key.

Reminds me of when physio came to me in the hospital and I was so unsteady first time getting on my feet and getting out of bed etc . Then just after lunch she came back and I did a bit better. Then she came back with more tasks later in the day and again I did those.

Then the next day she came back with a long list of tasks to do and I told her before I knew what they was that I was going to do them all. As it was I did them all with a no pain no gain mentality.

Some days you may feel like not doing as much as the day before but you’ll get to where you want to be sooner than you think.

Well done 👍🏻

[TH74 in reply to Steve_04]

Thanks Steve, appreciated buddy 👍. Have had a bit of a rest and feeling a little better. I know what you mean, 1st session with physio morning after surgery, they asked me to sit on side of bed and I filled 2 sick bowls. I though I would never be able to do this. They reassured me that how I was feeling was exactly how everyone feels and to trust them, my body will adjust (whether that was true or to just make me feel better it was a comfort). Tomorrow I'll take the advice and do a smaller walk but maybe do a few throughout the day.

[Steve_04 in reply to TH74]

TH, That’s good to know. Hopefully that works better for you. It’s also good that you have your partner helping you. I had mine around for the first two weeks, then by mutual agreement she went back to work as I was more than confident I’d be fine on my own etc and I have been.

Let me know how you get on with your shorter walks.

[TH74 in reply to Steve_04]

Hi Steve. So did a different route in walk today but still ended doing a mile. Still hard but did feel a little easier. Feel like I has a little better sleep last night (only woke 5-6 times) so not sure if that's helped. Or maybe just getting yesterday's walk out the way, I wasn't so nervous about what to expect today. Also not windy today like yesterday, so that probably helped my balance a bit too today! Lol!My partner only works 2 days. She is back on this coming Sun and Mon (assuming I'm not feeling so reliant on her(, and kids will stay with my folks. How did you manage your first day on own?

[Steve_04 in reply to TH74]

That’s good progress.

Nerves and anxiety will play a bit with the recovery.

Just have to remember to get a good rest between etc

I was fine on my first day alone, but by that time I did have two weeks to build up to it.

I had already discussed it with my partner before having the op that she’ll need two weeks of with me maybe more or less depending on how the op goes and how I am.

As I felt in a good place and could make myself drinks or lunch ( sandwich ) it was more encouraging to be on my own the first day when my partner went to work.

On the actual day I just did what I could do, still to this date most of the house chores are out of the question so I don’t put to much pressure on me.

[Steve_04]

Hi TH,

How have the walls been ? How is the recovery going ?

[TH74]

Hi Steve, sorry not been on for a bit mate. Been having some issues on and off with my eyes. Been getting some double vision - comes and goes and worse sometimes more than others. Having spoken my neurosurgeon's senior nurse practitioner, she said ita quite normal for this to happen. Apparently while your brain is in overload trying to recalibrate with the 8th nerve having been removed, it can have an on / off temporary impact on the 6th nerve which controls your depth perspective and focus in general..... not sure if this was anything you suffered/ or are still suffering on and off? They told me it can come on a few days / week post surgery and can continue for 3 weeks or so?

Outside of the above, wounds are healing well, the vice like headaches are slowly easing and the walking is getting a little better. Still feeling a little drunk and wobbly, but way better than day one at home. I'm able to walk and bit futher, slightly quicker too - although still much slower than normal. Also able to look around a little more "aggressively" without it causing nausea feeling.

Hope your still onwards and upwards with your recovery pal 👍👍

[Gardener21]

Hi, been reading your recovery progress.. I’m 6 weeks post surgery today and have or am having everything you describe! My facial numbness is improving, I massage it twice a day. I also had vision problems in the affected side, my right, in that I couldn’t focus properly and as I a great reader this was very upsetting. However, although I still have the odd blurry day, in general my sight feels more normal now & I’m able to read more. My scars (have one on my tum too where some fat was removed to fill the gap!) have healed very well but do itch a bit if I get hot. I don’t have that tight pulling feeling anymore & am able to look over each shoulder fairly quickly without feeling unsteady. That said I’m still not confident enough to drive but think I will be able to give it a go over the next couple of weeks. It took me a good 3-4 weeks to build up to my pre op walking of 3 miles a day. I was elated the first time I managed it! I don’t do it every day as it does tire me out, I do what my body can manage. I get sharp head pains usually at night when I’m lying down, not all the time, but they do still happen. If I exert myself too much I pay for it the next day with severe unsteadiness & sharp head pains. It’s interesting & reassuring to read everyone’s recovery experience, it normalises our rare condition. Good luck with your recovery, take it slowly, & let your body guide you. Brigitte x

[linziejsaddle]

Wishing you all the best my friend x