Did my surgeon need to cut sensory nerves

[busroc]

Hi everyone, im 32yr old male and so glad I found this website.
I'm new to the forum and am post surgery 2 weeks. Im numb from the chest down and cant use bowel or bladder at the moment. I'm in physio and am doing ok but what's really getting to me is the feeling of numbness on the soles of my feet like im walking with tennis balls stuck to my shoes, it's really slowing my progress with the physiotherapist. I didn't have this problem before surgery and only found out after surgery that the surgeon had to cut my sensory nerve to remove tumor. Does that sound right?? Has anybody had any experiences like this and if so will the numbness go away in time? Any help would be greatly appreciated.

[artsguy]

I had a sensory nerve cut to remove a Schwannoma at T12-L1. If you are willing to share the type of tumor and location, folks with similar tumors may be able to share more relevant experiences. I do not have the symptoms you described but have been told my post-surgery nerve pain and leg weakness/pain will improve over 6 months. We shall see... Best wishes.

[busroc]

Hello artsguy,
Thank you for replying.
I had a grade 2 ependymoma in my thoracic spine t1-t3 it was on my spinal cord. I think they call it an intramulldary tumor (could be wrong) I was told it was completely removed and I don't need any radiation therapy. Just need to do mri at 3mths,6mths,1 year and yearly after that for 3 or 4 yrs but I might do a few in between to keep my mind at ease.
Trying to get a proper sit down with my surgeon is proving difficult I am getting people from his team which are giving me different explanations regarding numbness and use of bladder and bowel some are saying it might come back and some are saying it will get better but could take up to 2 yrs.
What happened to me was very sudden and wasn't expected.
I had numbness in my abdomen area before surgery and walking was difficilult and bladder stopped working but the numbness from my waist down is all new and very worrying especially around my feet.
Any more information would be greatly appreciated..
Thank you guys very much.

[mateo]

Hi busroc,

I had an intermedullary tumor removed about 13 months ago. T10-T12. I was starting to have numbness in my feet shortly before my surgery. After surgery I had a lot of spotty numbness from my Waist to my feet. My neuro said the sensory nerves heal slowly. He said I should start getting it back at about 6 months. I actually noticed some improvement at about 3 months. I have feeling in both feet now but i still suffer from internal numbness inside the feet. It feels as if my feet are heavy and asleep. I can sense temp and touch on the ground but its still a little strange. Overall my neurosurgeon told me 12-18 months for nerves to heal so Im still hopefull and definetely notice a difference since a year ago. As for bowl and bladder it took about 2 months for my bowls to get back in order. I had to use a suppository to stay regular at first but it came back. I lost my urine function 1 month before surgery and got it back about 6-7 weeks after surgery. I can't begin to tell you the joy I felt when I got that function back. I know its tough but things will improve over time. Im told it takes about 1 year to make a general recovery and I would say its pretty accurate. Hang in there and try to stay positive!

[busroc]

Hi mateo,
Thank you so much for getting back to me. I haven't really had a proper conversation with my surgeon because he's away at the moment but hope to soon.
But just reading what you have said and what your surgeon has told you gives me hope for the future.
I know what you mean about the bladder/bowel issues it can be very embarrassing and I'm happy for you that yours has got better.
It takes a lot of getting used to especially considering I was running around playing football and being able to pick my 11 month old daughter up and swing her around less than a month.
But just reading your reply gives me hope for the future that I will get there.
Thank you again for taking the time to reply it has really helped.
I wish you the best in the remainder of recovery.

[mateo]

Hi Busroc,
I know it's difficult to go through in especially in the beginning. You prob have a ton of questions and concerns about your surgery and overall condition. Things will improve for you, but it will take time and some patience. The best advice I was given was not to gauge my daily gains but to look back for example a month ago and see how you were then and how you are now. I think you'll be surprised and it will give you a better perspective as to how far you've come since post op. Also a positive attitude makes a huge difference. There are some days that may be tough on you but keeping a positive attitude will keep you working hard. I have 3 young daughters and that was my motivation to get better. If you have any more questions or need advice please feel free to reach out to me. I wish the best for you and know in time your gonna get back to where you want to be.

[busroc]

Hi all,
I'm now 18 days post surgery tumor removed t1-t3 and woke up this morning with pins and needles in left arm. It has happened a few times since surgery but gone away after few minutes. This time it is still here 2 hours later. I'm in hospital waiting on a neuro team to come see me.
Has anybody had anything like this happen after surgery??

[busroc]

Hiya mateo,
thank you again for replying you've been very helpful.
would you be able to tell me if you did anything specific to get your bladder and bowel moving again.
at the moment I've been taking 2 Movical at night and have been emptying the next morning for 4 days now but the numbness around there still makes it hard to feel, it's a little bit of guess work between wind and bowel movement.
I was clamping and unclamping my catheter for 2 days and was getting feeling to go so docs decided to try take it out which we have done today but I'm still getting the feeling but nothing is coming, doc just said hold it a bit more and try but they'll probably have to put catheter back in and clamp and reclamp again then try take it out again in few days and start process again. does any of that sound like what you've had to do or if you have any tips regarding getting them back.
im sorry for all the messages and there's no pressure to reply if you can't but I am grateful for your help.

also don't know if I should have put this on the general forum for other people I will if you think I should.

Thanks again.

[mateo]

Hi Busroc,

I had my catheter removed about 4 days after surgery. I had been using the lofric disposable catheters that I used pre surgery. So I had to self cath myself which I was comfortable doing. I was told to do some exercises such as bridging up and down ( lying on your back then using your core to bridge up and down) and visualize emptying my bladder. I had some urine release about 3 week post op but it was a very small amount. It was at that time that I started to believe it was coming back slowly. About 6 weeks out I was going a little bit each day then after about a week I was able to fully empty my bladder and stop cathertizing. I was told by the nurses at my acute rehab that bowl and bladder are the last things to come back. I was relieved that not only it came back but quicker than I had realized.

Did you lose bladder function prior to surgery?

[busroc]

Hi mateo,
Thanks again for replying.
I'm glad you got the feeling back so quickly I'm sure it was a big relief. I'd try anything to get the same result but I also know everyone is different but there's no harm on trying.
I did lose it before surgery the first day I came to hospital with back pain and couldn't pee later on that evening so they put catheter in.
It was 12 days later they did surgery.
They told me to leave it in after surgery and it was 16 days later that they took it out. I can feel like I need to pee but nothing comes out.
Self catherisation was mentioned so that might help. I think urodynamics are coming to see me tomorrow so they might shed some light on the subject.
I'll practice those exercises in the meantime with the visualisation technique.
I hate to ask mateo but have you any tips on the bowel side of things or did that just come back for you.
Thanks again.