No control and extremely stressed!!!
Posted , 5 users are following.
Hi everyone! my name is Kim! I've had 3 back surgeries so far this year and ever since the first one in January I've had absolutely no control over my bowels or my bladder, everything in my genital area is completely numb!!! I have to self catheterize myself every 4 hours and I have to digitally remove my bowel movements! The surgeon who did my first 2 surgeries kept telling me that it would just take time to regain feeling and have control again! Most of the nurses, physical therapists, and other doctors told me that I should have had feeling back within 72 hours of my surgery! This surgery was supposed to be a 2-4 day stay in the hospital and at least 3-4 months of not being able to left anything over 5-10 pounds! I ended up have 2 surgeries within the first week because when the surgeon did the first surgery he pinched the main nerve going down through my left leg into the fixture and I was unable to even get out of bed!!! He waited a week before he decided to go back in and move one of the screws! That still did not fix the inability to go to the bathroom on my own! I was in the hospital for about 2 weeks and spent another week in a rehab facility! I also have constant pain, tingling, and numbness in both of my feet and legs! I ended up getting a second opinion and he order several tests to be done. I had a CT scan with a mylogram (fun, fun), an NCV, and an EMG done on my legs. The CT scan showed that I had cauda equina! So I ended up having a 3rd surgery in May. Nothing has changed since the 3rd surgery, my surgeon is afraid that the nerve sack at the base of my spine was pinched off for too long and that the nerves may never regenerate and chances are I'm going to be like this for the rest of my life!!! I'm only 44 years old and I should not being going through this kind of crap!!! I'm unable to have sex because I have no feeling, I wake up almost every morning soak and wet because I peed myself, and I'm afraid to go places for fear of soiling myself!!! It's extremely embarrassing and degrading!!! I'm extremely depressed and have major anxiety attacks! I'm also unable to work because my second surgeon classified me as disabled!!! I get constant UTI's, I can't stand and walk around for too long because my back starts hurting and my legs start to get weak and wobbly, and I can't sit for long periods of time because my feet start to swell and start tingling and hurting really bad!!! Does anyone by any chance have some useful advice??? Thank you so much for taking the time to read my statement!!!
0 likes, 4 replies
chrioli kimandbud
Posted
There is nothing more distressing than cauda equina syndrome. It is 2 years since my injury to the cauda equina nerves so I know the distress you are in. For most of us medication is important to help cope, especially in the beginning. I'm on lyrica and duloxatine. Everyone with this has similar but different experience. I was told 2 years is the time it takes for the nerves to regenerate and then you will know what you are left with. So you have some time to heal yet. It also takes time for the swelling and the shock to your nerves to settle down. Try lying on your side instead of too much standing and sitting. It alleviates the pressure. I still have to lie down often. You didn't mention much about walking. I have to use leg braces and a cane. Yes, this is so humiliating. Try to be kind to yourself in this regard. It's not your fault. You trusted your doctor. From the sounds of it I would contact a personal injury lawyer right away. And apply for disability income. Healing involves the reality that you are going to require help financially now. This is a way to turn your anger into advocating for yourself. You will need help financially, at least for a while. Also I had a physical therapist that helped me sort out my bowels but like you my bladder is toast. You may need more support with this if you are having a lot of uti. If you have any questions or
kimandbud chrioli
Posted
Hi chrioli! Thank you very much for you advice! I have since started taking an antibiotic on a regular basis (I take one every other day)! I haven't had any major UTI breakout infection and I use test strips weekly to make sure I'm not getting one and not realizing it! Also, I've decided to have surgery on February 1st to get a colostomy bag! I've gone through several months of rectal therapy with no change at all! I'm also going to make a trip up to Cleveland Clinic to talk with a specialist about a possible bladder stimulator! I have applied for SS and of course was denied so now I have a lawyer! I also have a malpractice lawyer too! I'm also trying very hard to get some sort of grip on what I can to live a semi normal and productive life! I really hate being like this and at such a not so young age but still have a lot of life to live!!!
maryanne45 kimandbud
Posted
I am so sorry to hear of your experience with CES. Please do get some legal help as the person above has said as it sounds like it was caused by your surgery. Also as I agree as they said, the healing is super slow. Whatever the docs and nurses say it is you that will know if things are changing, things may come back, but what and how much will be over the two years and can be effected what you do now. I dont think it is an area that is that well understood. I hope your sensations return, but if not that you can find ways to make your life better.
My experience has been that the nerve pain is the exception to improvment, it didn't respond to losing weight, physio etc and the sooner you can start pain management is healthier for your body. I didn't and had got to a point before where it had started effecting my heart rate etc as I just was trying to ignore it and go on. Engaging with a pain clinic is a good idea too, if you aren't already.
I hope you have someone working with you for your medications. I find an electric heat pad, tens machine helpful for getting through nights with both the nerve and soothes anxiety feelings. Also distraction- like a movie and if you can access it, mindfulness therapy to accept your body & the sometimes constant 'pain' sensations happening. Best of Luck with recovering and finding stregnth for your best life possible.
kimandbud maryanne45
Posted
Hi maryanne45! Thank you very much for your advice! I'm going to be coming up on my one year since all,of this started and I'm trying to be as positive and upbeat as I can but it is extremely hard!!!