Update on things, more questions than answers

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So here is an update on my situation after 2 days of many tests. Basically what's going is It seems like my lower body nerves are slowing turning themselves off. I go back in in about a month or so to get a full body MRI to look at my spinal cord and brain stem. I’ve known for sometime that I’ve been needing some extensive back surgery that I’ve been putting off because I know that recovery is going to be a hard, and then with the rona, even talk of surgery has left the chat. But now I have a feeling it’s going to be back in the picture, but this time it might not just be on my back, but the spinal column as well. They also want to do testing for MS and other degenerative diseases. And if all those don't turn up something, then I'm back at square one.All I know almost for sure is whatever bladder control I still have, will not last. Just not sure when it will be gone. They said that even if I do end up needing surgery, it will most likely never be back to normal, or ever really come back in general since the damage has been done, but to also to not give up hope completely.whats worse is that I shouldn't be shocked if I start to lose bowel control as well, but that isn't known for certain, and if I do to what severity. They recommend me to start wearing diapers more than just at night "which I have been doing doing for almost a week now but they are the pull up style and the tab style have been at night" and that I should start becoming somewhat used to 24/7 wearing. I was given a lot of resources and information on exercises I can do, diet, and information on different medications we might want to try, but I still feel like I've been hit by a bus. I have a very long road ahead of that I'm not looking forward to, And tbh, if this is something that's going to be with me forever but it's the worst thing. Than ok with that. It beats the other stuff they are talking about. Like losing my ability to walk, becoming paralyzed, and you know, the possibility of death. I know the only thing I can do is take all this one day at a time. So this is the start of a very long, stressful, and Emotional time in my life, and would appreciate kindness, understanding, and encouragement. Sorry for the long read. Wrote this while crying

 

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Zora, I am sorry you have gone thru so much. 2020 has been so tough and you have to deal with this.
I know one thing. This forum has been a blessing in my life with encouragement, info,caring.
Your "long read" has touched me and I pray for answers and comfort for you.

 

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Zora, I can relate to what you are going through. I have a spinal (diagnosed and had surgery for 2 years ago) glioma at T2-T4 level and am experiencing much the same issues... I’ve nearly lost all bladder control but have retained most of the bowel control for now at least... I continue to lose strength in my legs and the possibility of a wheel chair looms... The only thing I can offer is to take it one day at a time, never rule anything out and keep reaching out to others such you have done on here.. there’s lots of resources available and everyone on here is here to listen and offer any help they can.

 

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Praying for you.

 

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Hi Zora,

Read your post and wanted to wish you the very best and hopefully they are able to give you some concrete answers which are the best of all options.

May the heavens and angels be with you and support you in these challenging times.

With love.

Jason

 

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Zora, Oh my!, I am so sorry you have be going through that, it is very difficult but it is manageable. I can relate to what you are going through. I myself suffered spinal injury back in 2012 and had severe disc extrusions, had paralyzed my right leg temporarily and was left with little to no bladder control after that. But thankfully, I was able to walk again but I have to be very carefull not to lift heavy items. We are here to support you and help with any questions you may have, or just want to vent and talk. You are not alone!, This forum is a Godsend for us that have incontinence. Tonight, I will pray for you.

 

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Hi Zora,
So sorry you are dealing with this. Thoughts and prayers are with you. Glad you are starting to find some answers and hope they will be able to correct the issues you are running into and minimize any more potential problems.

J

 

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Hi Zora,your letter is not long,look,you write as much as you want,it's good to get things out and to talk about it,after reading your letter I said a prayer for you ,I wish you all the best may God be with you.I'm sure with all the people in this groupe praying for you some one up in the heavens will be listing and will help you.Take care and may God bless.

 

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All of the above, and we pray for God to be with you and to do more for you than we can imagine.

 

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Hi Zora.....your story breaks my heart for you....I will pray for you! Take care & try to stay positive

 

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Zora - The not knowing and the anxiety THAT leaves is the hardest part. I try to look at everything as though "this is temporary." Everybody on this forum is pulling for you and can relate to your challenge. If we've not been through the exact same thing we've entertained the thought that "that could be me"and we send our love to you.

 

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Come here to ask cry vent explain celebrate update Zore.
There are many that have had nerve damage and spinal issues sd no matter the progress or prognosis you're among friends.

 

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Dear Zora,
I hope you feel better after pouring out your heart to us. I hope that you are taking in all the beautiful replies people have been sending to you. I feel so very sorry that you are going through such an overwhelming situation, and I hope that you feel us with you on your journey. I hope that you will write to us as often and as much as you want.

 

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Hi Zora, I know that you are feeling completely overwhelmed at this point and wondering what the next steps will be as well as what the future will look like. But please know we are all here pulling for you and sending prayers over to you that you will get through this in a better way than expected. And the best thing to do is to take it one day at a time and maybe a clearer picture will begin to evolve.
And please don't apologize for giving us a long read! Whatever is on your mind, we want to hear about it so we can offer comfort, support and friendship. It's always good to say whatever is on your mind! This forum is made up of very fine, sensitive people who can truly relate to what you're going through and as a result, are truly compassionate and want to take you under our wing. This is a great place to be when you feel lost as you will be guided by us.
Please also know you have our very best wishes. I can appreciate you do have a long road ahead but come here as often as you like and we will help make that journey with you. The best thing is you don't have to feel alone because you are not! We are here for you!