Cauda Equina Syndrome

[Panda05]

Does anyone else have CES or have been left paralysed by this? I had surgery for CES 12 months ago but left it too long to get help and I am now an L1 paraplegic with a permanent IDC, bowel issues, constant swelling in my right leg which had a severe DVT, constant UTI’s, and my leg has created holes to let out the fluid. I am on 2 lots of fluid tablets yet it makes little difference. I also have further bulging discs, ankylosising spondylitis, arthritis and other health issues. I am constantly in pain and the nerve pain is ridiculous. I’m on gabapentin 1200mg x3 daily as well as opioids, I feel so alone.

[grace111]

although you may not find anyone with the same as yourself you can still make friends and offer support as pain is pain no matter where it comes from and so is lonlieness. it always better to find folks that are in the same boat as ourself i do know that. i sure someone will come with the same condition. please dont sit waiting. get involved. the minute i read that you were feeling so alone it touched my heart. as i'v felt like that so many times and things are going good for me at the moment but its not always like that. although my life is 100% better i get very upset and moody and suffer from depression. iv no reason why its not illness or health although that can add to it i just have been depressed most of my life, This forum has really helped me through a lot of things. sometimes it was bouts of depressions and feeling physically ill. it helped me change my diet and thats had a big effect on my life in a great way. i'v ofter questioned about c .e.s ,as im always constipated and always have hip pain and sciatica.im waiting to go to the neuro phsio place on january 7th. im sorry if i'v made a lot of spelling mistakes i'v tried to correct them. whats family life like for you at the moment? do you have any children i do hope that your getting help around the house. thinking of you love grace xoxo

[Panda05 in reply to grace111]

Thank you for your response I appreciate you taking the time to answer me. I am a single mum to 3 kids 13,6 and 3. They are my lifesavers. If I didn’t have them I probably wouldn’t be here still. I rarely see any of my other family and I am isolated in a way that I can’t get involved in my community. Hell I can’t even get into half the shops in town due to the sloping streeets and huge steps they have. I rely on my support workers but I’m finding that one of them is caring less and less about actually supporting me and is more interested in sitting in her phone talking to men. I don’t feel like I matter at all to my 13 year old who treats me with so much disrespect and doesn’t care. My ex is taking my kids away for Xmas so this will be the second year I won’t see them. Last year I was in the spinal injury unit and never saw them. I’m coming up to my first 12 month anniversary of being home on January 16. Loneliness is overwhelming. My neurologist and surgeon think I will need more surgery again as I still have bulging discs above and below my level of injury I feel like I’m a failure.

[grace111]

i hope you dont mind but i had a look around the internet for things that may be of help to you and came accross this. patientslikeme.com/conditio...

i hope its helpful and come back and let me know if you dont mind and let me know how your getting on, love grace xoxo

[Panda05 in reply to grace111]

Thank you I will definitely investigate that site and thank you for replying bless you too xx

[Caza]

Hi, yes I had an accident 14 yrs ago & ended up with Cauda Equina. I was extremely fortunate that the top surgeon was on that day. He came to see me before the op & said that it would be unlikely that he could reverse the damage, by then I couldn’t feel my left leg, couldn’t use my left foot & had no control over my bladder or bowel, I was in a bad way. Well he operated in the evening, it was long & complicated & I had a bad reaction to the morphine that they’d given me but the first thing I did when I came round was move my left foot. That man is my hero. Yes I’ve been left with a weak leg bladder bowel & foot & yes I’m always in a bit of pain & I do have to respect what I can & cant do but I guess I’m one of the lucky ones. I must say that the pain has eased over the years. I do think that the stress & shock brought on RD but that’s a whole different story. Take care.

[Panda05 in reply to Caza]

Wow! I am so sorry for all that you have been through. I think I need to remember that I’m not the only person and stop being quite so selfish about my problems. Thank you for talking to me

[Caza in reply to Panda05]

I don’t think your selfish at all, infact I think your very brave.

[Panda05 in reply to Caza]

Thank you. Some days I’m afraid my brave leaves me behind.

[jogreenfingers]

Hi, Please don't think you are the only one suffering out there with similar conditions, we are out there if you need to talk/compare notes etc. I think it is very difficult for others who have not suffered the same problems to understand what you are going through. This is my story : I have diastematomyelia, extended and tethered spinal cord, spina bifida occulta, ankylosising spondylitis, scoliosis, kyphosis, a meningiocele, spinal cysts and a deformed right leg and foot. My congenital spinal problems weren't even spotted when I was little and all I was treated for was what appeared to be clubbed feet. I had loads of operations on my right foot but none were particularly successful. They should have been treating them as neuropathic feet. The scoliosis/kyphosis was spotted at 17 in 1985, I was told I was too old to have an operation. The spina bifida occulta was found at 19, when I was a radiography student, I shrank 5cm in a year, and the x-ray showed 3 lumber vertebrae had collapsed. I had to quit as a student. Over the years I lost the toes on my right foot one by one as they were clawing under my foot and permanently ulcerated and infected, and still is. I suffered with really bad back ache for years, but after I had my second baby, the pain had become unbearable. I had to go into hospital for treatment for an infection, with really acute spinal pain I literally begged for them to do an MRI scan. It showed up all the other spinal abnormalities. More than anything I felt relieved in a way because until then I don't think the doctors believed the pain I was in. I take 4 x 600mg Gabapentin, 4 x 100mg Tramadol, 1 x 30mg Meloxicam/Mobic anti-inflammatory, and Amytriptaline 4 x 10mg (for nerve pain at night). They don't work so well any more, but I had a really bad reaction to stronger drugs I was given in patch form. I chose to go back to the original drugs and suffer the pain as opposed to the side-effects of the other drugs (fentonyl and other similar ones). I was told by the consultant it is inoperable because of the complexity of all the messed up nerves surrounding the area. I have very limited mobility now (I'm 50). Any upright positions are excruciating after a few minutes, walking is getting harder and I can go nowhere without a stick. Strangely my most comfortable position is standing up but bent double, which takes the weight off my back. I keep as active as I can force myself to be, as I am finding it difficult to keep my weight down, as I am not as active as I was, and I have arthritis in most of my joints now. Luckily the one problem I don't have is bladder/bowel incontinence thankfully, which I put down to the fact that I have to contract and hold all my stomach and other muscles in the area to help me hold my back up.

Please don't feel your alone, this forum is very good and many people understand the the emotions you are feeling. I find it helps to search online and read about other documented cases. I always find there are people suffering more than me. Don't forget we are all here to talk to if you need to - Jo

[morphalot]

I've had most of those things and was admitted through a&e with impending CES but had a spinal stimulator fitted to lessen the pain. it's worth getting a referral to discuss this. There are also a lot of videos about them online now. Good luck xx

[morphalot]

Also I have tibial nerve stimulation which controls the bladder incontinence and it helps with faecal incontinence x

[Panda05 in reply to morphalot]

I’ll look into that!! Thank you xx

[morphalot in reply to Panda05]

It has literally saved my life! Unfortunately not many places offer it. Whereabouts are you - just a rough idea obviously

[Panda05 in reply to morphalot]

I’m in qld Australia

[morphalot in reply to Panda05]

Ah I can't really help there sorry. But as you say, look into it.

[air4ce]

Sorry, but you will need to learn how to live with the pain, discomfort, bowels, bladder, UTI's, all the good crap that comes with it...pray, pray real hard and see if the man above will help you out! Welcome to hell! I have been fighting this crap nine years. May God be with you!

[Panda05 in reply to air4ce]

Thanks I know it’s a shot box of hell I’ve been fighting my spine for 5 years before this and already had surgery at the same level the cauda equina happened at. Bless you too and good luck xx

[Lolarufus123]

Hi Panda05 pardon my ignorance but I dont know you know what,Cauda Equina Syndrome is. I had,an accident last year and broke my sacrum. This was 14 months ago. S1 and L5 is healing extremely slowly. I have terrible,nerve pain, spondiolitis, Arthritis and osteoporosis. I can't lift anything over a kilo and I don't know why. Is this at all how you felt before you're surgery. I was advised by my neurosurgeon not to have surgery because it may not stop the pain, couldn't help the nerve pain and the large rod they would have to use to fuse the bone would stick through my skin. Did you get any warning from you're surgeon about the dangers of the surgery before you had it. I am so sorry to hear that you are in so much pain and that the surgery wolent wrong. Lola

[Panda05 in reply to Lolarufus123]

I’m so sorry for all the trouble you are having. Cauda equina is actually a surgical emergency but as I’m a sole parent of 3 I waited until I could find someone to take care of my kids which means I was a week suffering with debilitating pain unable to use my right leg no feeling in my saddle region and loss of control of my bladder and bowel. Due to waiting so long and because the disc had come out of my spine at L4-5 and was crushing my nerves I killed the nerve endings and now I’m paralysed and still have no bowel or bladder control I’ve had a massive DVT and my paralysed leg and foot are so swollen that I am bursting holes through the skin that are leaking fluid. I recently had a MRSA/ pseudenomus infection that landed me in hospital. I have no feeling in my saddle area or my right leg and my lower back. The same thing is happening to my left leg now. I still have bulging discs above and below my area of surgery and will probably need more surgery. My spine also has genetic diseases and I have arthritis. Basically I copped the genetic Christmas box of bad luck!!! Try to avoid surgery find a really good physio and occupational therapist and see what they can recommend. I am so sorry for all your going through. Xx

[morphalot in reply to Panda05]

I have pretty much the same as you,!

[Heloise]

Hi Panda, what a disaster. I've been thinking that we should clump all autoimmune conditions together. On the thyroid site we have learned a lot about autoimmunity since Hashimoto's is also one of them. We know that gut issues are involved so the triggers could start there. Whatever is throwing the body's system off, the body is reacting to something. Since your metabolism is run by thyroid hormone, it could be part of the problem even if they say your tests are normal.

We've had summits from functional doctors who actually look at the research and found out that we have an assault against our nervous system. If we have inflammation and antibodies, they affect our brain. In your case it's a particular area of your spinal cord. There was an example of one conventional doctor with Multiple Sclerosis who was treated by a functional doctor who got her out of the wheelchair and back on her bicycle.

Was your CES a sudden onset?

The gut is very involved since it sends various message to the brain.

I know this may be new to you but I don't have the mindset that you can do nothing to improve. I'm not sure if the surgery has done something irreversible but if there is any way to do some of the testing like food sensitivity and be willing to eliminate certain foods you may find some answers. Sugar and starches are implicated with many. There is a Netflix movie called The Magic Pill which might give you more of an idea. Other hormones like a progesterone deficiency may have to be treated. Getting yourself out of the sympathetic state will at least give some rest to your nervous system.

I know this all sounds complicated and it would help if we had more doctors who could connect the dots because I do think they are connectable.

[Panda05 in reply to Heloise]

Thank you for that information. I am using essential oils and natural supplements to support my system especially my gut as I know that a lot of dis eases start with a gut imbalance. My body hadn’t had a period since my first surgery in 2016 so I know there is something going on. I have just had another MRI as there is something else going on with my spine. Due to nerves being touched by further bulging discs I am a bit worried by the outcome. Nearly every limb has constant pins and needles and pain. I need to do more research into how natural remedies can help. I am going to start a 21 day gut cleanse using dōTERRA supplements as soon as I can afford them. I currently use their probiotics after 2 courses of antibiotics for a severe uti due to my idc. Thank you for taking the time to answer me.

[Heloise in reply to Panda05]

Yes, I would classify this as a desperate situation and I also think that a lot of this can heal....even the bulging discs. I was watching something on you tube about ankylosing spondylitis and the person said if they stop all sugar the pain is quite reduced. Of course starch turns into glucose but if you take some apple cider vinegar with meals, it will block some of the starch and add some probiotics. The ACV needs to be the unfiltered type. If you would like try this for a few days, I would do it before the cleanse.

It's turning out that sugar and many grains can have a terrible effect on the body. Peter Osborne has a Tuesday night event on Facebook. He wrote the book, No Grain, No Pain which I haven't read yet but I would not be surprised if they are very intertwined for some of us. I'm working on it myself.

I'm going to see if John Bergman has a video because he very brilliant and knows all about how the body functions. I will PM you if I find something good.

[Panda05 in reply to Heloise]

Thank you. I actually don’t have much sugar in my diet at all. To be honest I actually don’t even eat a lot as I have found that I have no appetite and food is a turn off. I cook for my kids but I don’t eat as I just can’t force myself to eat. I would be interested in any info you find

[Heloise in reply to Panda05]

You may be malnourished, Panda. You do have autoimmune issues because of the arthritis. Dr. O'Bryan spoke on the autoimmune summit and gave a regimen to start healing your gut. We know you need diversity and often root vegetables are "safe". Get rutabaga called swede in the UK, parsnips, turnips, jicama, or sweet potatoes and have some each day. This will give your microbiome a wide assortment of bacteria. Then if you can use fermented food to feed the bacteria. Sauerkraut, kimchee, etc. He also said that pectin will clear some bad bacteria in the gut and a homemade chunky applesauce will have that. I know this is asking a lot but you will not heal without nutrients. Since you don't know what triggers you need to stay away from whether nightshades or dairy, these root vegetables should be ok. Your genetics don't have to cause this if you can avoid the triggers. If you can invest in some Betaine HCL or enzymes to get the most out of your food, it might be worth it.

[Heloise in reply to Panda05]

I think this one is going to be excellent. I know it's hard to find a half hour to yourself but just watch five or ten minutes at a time and try to digest what he says because he says a lot.

youtube.com/watch?v=szYv-2_...(Not working as expected?)

[Panda05 in reply to Heloise]

Thank you! I appreciate all your help and tips. The information is very valuable and helpful. I’m in Australia and root vegetables are great here. I have recently got the results of my mri and it shows displacement and compression of the nerves so I’m hoping that all of this tips and following these will help. I have managed to reduce my use of one of the opioids so far using oils as a supplement and take a wonderful probiotic and prebiotic everyday. Di gets crossed!! Xx

[caboolture_gal]

Hi Panda

I also have Cauda Equina Syndrome caused by my neuro surgeon stuffing up my Spinal Fusion. What made me react to yr post is that I also have fluid retention in my right leg and foot (I have drop foot) I especially have fluid under the soles of both feet which causes me to loss balance easy. I take 2 fluid tablets a day which do nothing. Have your doctors worked out why this is happening because mine have no bloody idea. Like you I feel very alone my grown daughter's live far away, I can't drive no more and now after six months of visits from TCP and local Rehap I have been put out to pasture as I am not 65. I'm in the process of accessing NDIS and that is a nightmare in it self. I just don't know where to turn now.

Tare care Panda05