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Post by Fresno on Jul 30, 2015 15:58:57 GMT -6
Apologies if this is seen as "hijacking the thread"
Tamera, my surgeon assured me it will get worse before it gets better. I've also spoken to a gentleman who had the sensation issues and he said he experienced pain while the nerves were waking up. There isn't a timeframe or blueprint for the sensation to come back, but my surgeon believes between 3-6 months. Everyone is different. I also had the thrill of a DVT in my right leg and although it's numb, that hurt more than my back. Strange to be numb and in pain at the same time.
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Post by samuridude on Aug 1, 2015 11:59:20 GMT -6
Apologies if this is seen as "hijacking the thread" Tamera, my surgeon assured me it will get worse before it gets better. I've also spoken to a gentleman who had the sensation issues and he said he experienced pain while the nerves were waking up. There isn't a timeframe or blueprint for the sensation to come back, but my surgeon believes between 3-6 months. Everyone is different. I also had the thrill of a DVT in my right leg and although it's numb, that hurt more than my back. Strange to be numb and in pain at the same time. Fresno, I live in Clovis. Become a member and PM me. I think I can help you.
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Post by Tamera on Aug 10, 2015 7:57:23 GMT -6
Thanks Fresno!
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Post by Matt on Sept 1, 2015 18:07:29 GMT -6
Hi everyone, I had was diagnosed with an intramedullary tumor in July 2014. I had been having severe back pain and was having urinary issues. Shortly before my surgery I lost my urinary function completely and had to self cath myself when urinating. I had my surgery just over a year ago 8/22/2014. The tumor ran from T10-T12. The tumor was about 90% removed by Kapil Moza, MD and amazing and incredibly gifted neurosurgeon. I spent 5 days in the ICU and another 3 weeks in acute rehab. After the surgery was over I was able to wiggle my toes so my neurosurgeon was overjoyed. He said I had motor function which was great and that the sensation should come back over time. I am so fortunate that I was able to urinate 6 weeks after surgery on my own and no longer have to cath myself. I cried when I was able to pee on my own because my neurosurgeon and urologist were not optimistic that it would return. After my surgery I was numb from my butt to my feet. I was so weak that I was bed ridden for 10 days. I finally got a wheelchair and progresssd to a walker a month after surgery. It took another 7 weeks to get to a cane. I was doing intense physical therapy 3 times a week and it really helped me. 5 months after surgery I was able to start walking without any assistance. It has been just over a year and my surgeon says im doing great. My gait is much better and im still doing physical therapy to regain strength in my left leg which is getting much better. The sensation has improved a lot. I still have issues with light sensation from my left knee to my foot but i can sense temperature and deep sensation. I still have tingling and prickling in my feet but there is sensation there. My doc said i should get all the sensation back. I am so grateful to have had a great surgeon. I worked my tail off to get to where I am and i continue to work hard.
If anyone has any questions I would be glad to contribute my experiences. Just remember that you are stronger than you think you are. You will get better with hard work. Having a support system (family/friends) is huge too.
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Post by Matt on Sept 1, 2015 18:07:54 GMT -6
Hi everyone, I had was diagnosed with an intramedullary tumor in July 2014. I had been having severe back pain and was having urinary issues. Shortly before my surgery I lost my urinary function completely and had to self cath myself when urinating. I had my surgery just over a year ago 8/22/2014. The tumor ran from T10-T12. The tumor was about 90% removed by Kapil Moza, MD and amazing and incredibly gifted neurosurgeon. I spent 5 days in the ICU and another 3 weeks in acute rehab. After the surgery was over I was able to wiggle my toes so my neurosurgeon was overjoyed. He said I had motor function which was great and that the sensation should come back over time. I am so fortunate that I was able to urinate 6 weeks after surgery on my own and no longer have to cath myself. I cried when I was able to pee on my own because my neurosurgeon and urologist were not optimistic that it would return. After my surgery I was numb from my butt to my feet. I was so weak that I was bed ridden for 10 days. I finally got a wheelchair and progresssd to a walker a month after surgery. It took another 7 weeks to get to a cane. I was doing intense physical therapy 3 times a week and it really helped me. 5 months after surgery I was able to start walking without any assistance. It has been just over a year and my surgeon says im doing great. My gait is much better and im still doing physical therapy to regain strength in my left leg which is getting much better. The sensation has improved a lot. I still have issues with light sensation from my left knee to my foot but i can sense temperature and deep sensation. I still have tingling and prickling in my feet but there is sensation there. My doc said i should get all the sensation back. I am so grateful to have had a great surgeon. I worked my tail off to get to where I am and i continue to work hard.
If anyone has any questions I would be glad to contribute my experiences. Just remember that you are stronger than you think you are. You will get better with hard work. Having a support system (family/friends) is huge too.
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Post by Matt on Sept 1, 2015 18:09:13 GMT -6
Hi everyone, I had was diagnosed with an intramedullary tumor in July 2014. I had been having severe back pain and was having urinary issues. Shortly before my surgery I lost my urinary function completely and had to self cath myself when urinating. I had my surgery just over a year ago 8/22/2014. The tumor ran from T10-T12. The tumor was about 90% removed by Kapil Moza, MD and amazing and incredibly gifted neurosurgeon. I spent 5 days in the ICU and another 3 weeks in acute rehab. After the surgery was over I was able to wiggle my toes so my neurosurgeon was overjoyed. He said I had motor function which was great and that the sensation should come back over time. I am so fortunate that I was able to urinate 6 weeks after surgery on my own and no longer have to cath myself. I cried when I was able to pee on my own because my neurosurgeon and urologist were not optimistic that it would return. After my surgery I was numb from my butt to my feet. I was so weak that I was bed ridden for 10 days. I finally got a wheelchair and progresssd to a walker a month after surgery. It took another 7 weeks to get to a cane. I was doing intense physical therapy 3 times a week and it really helped me. 5 months after surgery I was able to start walking without any assistance. It has been just over a year and my surgeon says im doing great. My gait is much better and im still doing physical therapy to regain strength in my left leg which is getting much better. The sensation has improved a lot. I still have issues with light sensation from my left knee to my foot but i can sense temperature and deep sensation. I still have tingling and prickling in my feet but there is sensation there. My doc said i should get all the sensation back. I am so grateful to have had a great surgeon. I worked my tail off to get to where I am and i continue to work hard.
If anyone has any questions I would be glad to contribute my experiences. Just remember that you are stronger than you think you are. You will get better with hard work. Having a support system (family/friends) is huge too.
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Post by Jaimee. Me on Sept 1, 2015 21:31:53 GMT -6
Hi, It turned out to be a ependymoma grade 2... I have been reading uo on everyone's post... Its amazing how similar yet different the experience can be.... I had 1 night in ICU due to team taking out so much and were unsure if too much was taken.. The cysts burst during surgery and I had air bubbles that need to go...I couldnt move my left side at all when I first woke, couldn't feel any of my left side but right side i had no feeling waist down... I just started trying to move my fingers till aha i moved them and carried on to the next part... I could move left side by day 3 but the feeling wasnt back instead i had a mix of hypersensitivity and numbness.. I also suffered severe full body shocks which are now my biggest fear... I control them with meds and dont have them anymore.one scary part was clamping the catheter and had to waiting to see if I could feel full which actually went well after a couple of hours.... I am now at home have physio 4 times a week and keep active as much as i can... Still don't feel all that much but early days yet... I am aiming to do a colour run in November... And goal after that is to ride a bike.... Its so great not feeling alone but a little sad that others have to or have gone through this...
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Post by dmdgood on Sept 3, 2015 19:57:38 GMT -6
Hi Jaimee. Thanks for writing an updating us on how you went. I really appreciate hearing about your experience and where you are at. That is excellent news that you have pulled through this. I can imagine that it would have been challenging (which I know is an understatement but I can't think of another word) to go through the surgery, and also through the recovery (I am dreading both!) But you have done it, and you're on the road to recovery. I am so happy for you, and hope that you continue to improve. I also wish for a good outcome for myself (I also have the fantasy of being the 'model' patient in terms of recovery). I have a few questions since I may have a similar tumor to yours. Mine is also intramedullary, and extends above C1, in the craniocervical junction (between C1 and the brain stem). It is a 'cystic' tumor, and the majority view at the moment is that it is an ependymoma. Was your cyst separate to the tumor (i.e. a syrinx), or was the tumor the cyst? Did you have to have a craniotomy (where they cut into your skull) in addition to a laminectomy? Did they get it all out? All the best.
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Post by M on Sept 5, 2015 21:07:13 GMT -6
Thanks for the update. I'm pleased to hear that you are home and shooting for the colour run! My postop pain improved significantly over the years. I had those shocks that you are experiencing now. They were worsened by stress but eventually went away. i hope your daughter is well. I wish you the best!
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Post by markcore on Sept 22, 2015 4:18:42 GMT -6
Hi Jamiee,
I had a C2 to C7 ependymoma removed about 15 years ago. While the tingling never got better, and I still get shocks, I think they happen so often I don't really notice them anymore. I suppose my brain has adjusted for that. It's annoying to deal with some of the frustrations that come with a lack of feeling in limbs, but as my less-than-charming neurosurgeon said, "The tumor had to come out". So what's done is done, and life can be more annoying than it probably would have been otherwise, but you'll adjust and figure out ways to do things. People have it worse out there in the world.
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