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Post by mateo on Oct 11, 2015 19:38:24 GMT -6
Hey Busroc,
If you can feel that your bladder is full that's a good sign. I had the same feeling. The key to it returning is getting the signal from your bladder back your brain to release. If you are able to stand I would recommend leaning to one side to put pressure through your feet. Im sure in time it'll get better for you. As for the bowel situation. If had a lot of numbness in that area after surgery so I didnt quite know if I had to go. I wore an adult diaper for about 2 months post surgery in the event i had an accident. I realized i was getting more consistent times for my bowels and didn't need to use a suppository to be regular any more. I hope its not tmi, but I was never a regular (daily) person before. The only thing I notice now is that if I have the urge to go, I need to find a bathroom sooner than later. I still have some mild numbness but its much better than it was.
I forgot to ask if you are able to walk on your own at this point. If you are that's great. I couldn't get out of bed for 10 days and was wheelchair bound for 3 weeks after that. My doc said age has a big factor in the speed of recovery. I was 37 and in good health when I had surgery. I think your younger than I am so that should bode well for you.
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busroc
Junior Member
Posts: 13
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Post by busroc on Oct 12, 2015 2:50:36 GMT -6
Hiya mateo,
I am able to walk with a crutch at the moment and can wobble walk is what I call it without the crutch but nearly always have to look at my feet or I lose balance. I was able to do this because I had a great physio in my first hospital who gave me so much confidence and would push me a little bit everyday but now I've been moved on to another hospital and don't have much confidence in the new physio but will give it a chance before I say something. I think I'm in the same place as you regarding bowels but I'm still on the Movical which keeps them soft if it gets too hard I get blocked up (TMI) sorry. I'll try your tips about the bladder but i have to wait and see what the urodynamics team say and if they'll take the catheter out sooner or later. Mateo did you have any pins and needles going down your arms post surgery, I woke up on Saturday morning with them and they wore off later in the day now it's come back not as bad but I can feel tingly especially in left arm. The docs have been cutting my steroids and painkillers and say it could be inflammation but not really getting answers I'm worried something has happened higher up considering I had my surgery t1-t3. Thanks again for all your help.
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Post by jeffrey on Oct 12, 2015 6:29:58 GMT -6
Hi Bursoc
Appears we have similar timed surgery and thoracic location ... I am a 55 year old male ... Mine was a week ago on c7-t3. On the pins and needles in arms it doesn't surprise me as I have new symptoms in my left arm ... Just not general tingling. My left pinky is numb ... As is my left arm pit ... I believe those are directly tied to the nerve root at T1 and the work my surgeon did to get the tumor off that area. I think you are correct ... General arms issues would certainly be higher than T1 though. I wouldn't worry about it too much though unless it increases it intensity and duration.
When do they taper you off steroids completely? They are in the process of moving me off dexamthasone over the next week. Because my original symptoms still exist post op I am curious to see how much pain ceasing the steroid will cause.
Best Jeff
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Post by mateo on Oct 12, 2015 8:55:41 GMT -6
Hey Busroc,
Fortunately, I didn't have any numbness or tingling above my waist. Since your tumor was in the high thoracic as opposed to mine in the lower thoracic, perhaps a nerve got moved or irritated from the procedure. I would'nt worry too much about it. It will prob heal in time. Nerves are very sensitive and when even touched can cause issues. I was worried that nerves were cut during my procedure. I addressed it with my neuro and he told me if he cut the nerves during surgery that my legs would shrivel up like twigs. He did say due to the tumor location that many nerves were moved aside to get to the tumor which will cause the symtoms that i had from the compression. He mentioned that it takes about 12-18 months for nerves to generally heal. As I mentioned before, Im still experiencing some numbness but it was improves significantly since my surgery.
The reason you had to look at your feet is due to proprioception. I had the same issues when I was in the hospital, I felt like I had no idea where my feet were when walking with a walker. It will improve in time as you continue to heal and walk. I still have a slight issue in my left foot mainly when going up or down stairs. Doing physical therapy has helped my gait tremendously and I currently have minimal issues with it.
As for the bladder, I was catheterized for about 2 weeks before my surgery as they were still trying to find out what was wrong with me. My urologist informed me that when a catheter is placed in us the bladder does not have to work which causes it to get lazy. It doesn't take much time for this to happen. I had to re-train my bladder to function again and fortunately the tumor didn't damage the nerves for my bladder.
Best, Mateo
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busroc
Junior Member
Posts: 13
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Post by busroc on Oct 13, 2015 1:36:21 GMT -6
Hiya mateo and jeffrey,
I hope you guys are right regarding the tingling it's been coming and going the last few days I still have power in the hand and arm so I think the docs are going by that at the moment. Mateo I was thinking the same thing about the catheter the longer it's in the worse it will get and the hospital I was in after surgery are telling me urology won't see me till 6-8 weeks after surgery?? I'm in the second hospital now and we did remove it a few days ago but I couldn't go so we put it back in. So we're back to clamping on and off to check if I have the feeling and I do get the feeling to go so hoping that's a good sign. Now I'm just waiting on urodynamics to come and see me and see if there is any problems down there. Jeffrey they've been cutting down my tablets the last 2 weeks I've been on oxyconton, lyrica, dex, by the end of this week ill probably only be on lyrica and paracetemol if I need it. I've been getting really bad pain in my lower back when I sleep or try to sleep and the pain in my back where they went in has got a bit worse but that's expected I suppose only 3 weeks out if surgery. I am worried about the pain in the future from reading the forum but from what I gather the more physio and stretching you do it should get better just at the moment I can't do any stretching on my back.
Thank you guys for your replies and mateo you've been really helpful to me I really do appreciate it.
Going forward now I hope I don't get any new symptoms and can work on the ones I have.
Thanks again Busroc.
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Post by mateo on Oct 13, 2015 11:39:37 GMT -6
Hi Busroc,
Wow, 6-8 weeks seems like a long time. I would make an appt with a urologist soon after you released from the hospital. I'm sure you will be able to find a reputable urologist that is in-network with your insurance. Also, if you don't mind me saying, physical therapy is really important with our recovery. I have been going 3 times a week for the almost a year. I'm only going 2 times a week now to work on balance and proprioception which is still a work in progress. I was prescribed Norco for the severe pain I was in pre-surgery. After surgery, I was on some heavy meds for the about 4 days. My neuro wanted to get me off of them and thankfully I didn't need any prescription drugs. I could sense swelling and stiffness in my back but the pain was gone. I only take gabapentin 2 times a day for some nerve pain i still experience in my feet but i am not in any debilitating pain. I was told that it should go away in time and be very minimal if any.
Feel free to contact me via email if you have any questions. I'm happy to help and share my experiences with you Busroc. Chevyguy1976@yahoo.com
Best, Mateo
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busroc
Junior Member
Posts: 13
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Post by busroc on Oct 14, 2015 7:30:11 GMT -6
Hi mateo,
I'm gonna wait to see urodynamics team here first before I leave hospital. Hopefully they can shed some light on what's happening to my bladder. If not ill find someone that does. Unfortunately I'm not living in America (I'm guessing that's where your from) so insurance doesn't work like that where I am.
Thank you for the email address ill be in touch.
Thanks very much....again ... Busroc.
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Post by funnywalk on Nov 5, 2015 16:15:02 GMT -6
Hi busroc, Sorry to hear about the rough time you've been having. Like you, I had symptoms after surgery that weren't there before. I asked my NS if he sacrificed sensory nerves and he said he had not, but some tumours have a violent reaction to surgery which has the effect of making pain etc worse. My tumour is still there and the numbness and pins and needles in my left foot have not gone away [after three and a half years] but it is amazing what you can get used to. I don't have any tightness or breathing difficulties. I was helped by a course in mindfulness I took last winter. Many people are helped by finding the right painkillers. I hope you have a chat with your NS and get the right meds. You have come to the right place - people on here are the only people who know what we are going through!
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busroc
Junior Member
Posts: 13
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Post by busroc on Nov 10, 2015 20:13:54 GMT -6
Thanks a lot funnywalk for your kind words im starting to deal with things a bit better now. I'm trying to get good people around me that could help and have met a physio that's seems to want to help me and get me back on track as much as she can so I'm hoping it works out with her. I'm glad your doin ok but I hope there's more healing to come for both of us. Take care.
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