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Hi all, 24 year old man started having some buttock and back pain in late September 2015 gradually getting worse for a couple of weeks dr’s and physio originally suspected a herniated disc (slipped disc) after mri in February turned out to be a rear form of spinal tumor called a clear cell meningioma! Had the tumor removed in March 2016 was doing great no back pain or sciatica had some loss of sensation in right side and some numbness but leg power was strong and walking was almost normal, after about 8 weeks pain returned so had a follow up scan to show tumor had reoccurred so radiotherapy was giving for 6 weeks and symptoms had eased and tumor had stopped growing! Now in January 2018 had some pain and trouble urinating went for an MRI and was told the tumor was growing again and I had CES so had tumor removed last week and pressure relieved from my nerves, I guess why I’m here is they have now told me I will self catheter for a couple of weeks and have no real control over bowels, penis is numb and it feels like the end of the world for a 24 year old man with a long term gf they told me that it might not be permanent but they need to be realistic and it could be I’m distraught 

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  • Posted

    Hi Rob,

    It sounds like you have been through so much at such a young age! I've had ces for five years now and im 27. The first thing i would say is try not to panic about the whole numbness/catheter thing because firstly it takes at least 2 years before you can completely discount the idea of things working normally again. Secondly i think its really important that your in a loving long term relationship because for me, thats what got me through the hardness of the situation. Its still very early days for you hun and there is still a good chance that things will return to normal. Wishing you all the best.

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  • Posted

    Hi Robert,

                       Well, i may not be of much  help but your problems mirrors my own....(Have you read my history)  anyway over the years you learn to adapt your life to cope with this rubbish disease CES .I am not able to reply to your post at any length at the moment  (grandaughter Birthday Party) but will be in touch shortly if you want more info. Mike

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  • Posted

    Robert

    You are young and it takes 2 years for the nerves that still have a myalin sheath to regrow. Give it Time. Follow the self cathing instructions to retrain your bladder. It sounds like they took care of you quickly so try not to stress and be patient. Research what helps nerve tissue to heal and regrow and be proactive. Thank God the tumor is out and best wishes for full recovery. I was not so lucky but I have hope for you!

    Chrioli

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  • Posted

    Hang in there your young and there’s a 2 to 3 year timeframe for improvement 
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  • Posted

    You are very lucky to have had a CES problem diagnosed.    Only 50% of back problems are ever diagnosed. I would like to know did they use an MRI with dye?

    I can offer some patient advice on self catherising etc. First thing, is if you are getting repeat UTIs, then you need to be careful with your doctors.  When the Microbiology results come back you need to check with your GP that you are using the right antibiotic and he might look at the results days or weeks later which is not good for the patient.    There are big issues about antibiotic resistance and using the right antibiotic.

    If you are self catheterising, it spreads UTIs to your marbles which really hurts and it can get serious. Apparently, a better option than self catheterising  is a neuro-stimulation device which apparently leads to less infections where you would not want them. This device is relatively new and I am trying to figure out whether I should get one for CES Slow Onset.

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  • Posted

    Hi all thanks for the quick replies nice to feel like I’m not alone I’m this, been in the hospital 2 weeks now learned to self cath today wasn’t as bad as expected nice to not have to carry around a bag of pee!! Had an mri today with regards to the tumor to decide about further treatment radiotherapy etc, Good news is I’m home tomorrow have a little baby girl at home who’s only 7 weeks old and haven’t seen her since I got here so just gonna enjoy some family time try my best to adjust and just pray to god I heal up as best as humanly possible❤️ Thanks again Rob 
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