Cauda Equina: This is some background. I was... - Pain Concern

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Cauda Equina

Davewm profile image
10 Replies

This is some background. I was recently diagnosed with enlarged prostate. My general health is not good as I had a Triple Bypass and Mitral Valve Repair and also, last year was diagnosed with Heart Failure.

I’ve also got Severe Spinal Stenosis which has returned following a Failed Laminectomy Spine Operation. As a result of the Heart Failure I can’t take normal Painkillers like Ibuprofen etc so this is very difficult!

I was prescribed Tamsulosin which I took for a short time as I suffered with Rhinitis which I understand can be a side effect. The GP then prescribed Doxazosin with the same effect.

I was then prescribed Finasteride.

I, finally actually had an Ultrasound Scan last week and have been told I do NOT have an enlarged Prostate so the last few weeks of terrible side effects were for nothing as the GP has now taken me off Finasteride!

The GP originally suspected Cauda Equina as a result of my Severe Spinal Stenosis ( I did in fact suffer with acute Cauda Equina after my previous back surgery and was rushed into hospital) but the Pain Consultant wanted to rule out Prostate problems.

I’m already on a waiting list for a follow up after 6 Spinal injections. So at least I can now say that he can rule out Prostate problems.

I’m now getting a lot of numbness at the bottom of my spine and also tingling in my legs.

Does anyone have experience of dealing with chronic or; long term Cauda Equina as opposed to acute as mentioned above.

Thanks in advance for any replies/advice.

Kind regards

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Davewm profile image
Davewm
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10 Replies

Sorry to hear what you're going through Dave. I have had back issues most of my life as I have lead a very active life physically. Over the past few years, I have been seeing a pain management doctor who specializes in nerve blocks. She is actually trained as an anesthesiologist. She has given me steroid shots in my lower back but the big one is RFA (radio frequency ablation). That uses electronic probes to send pulses to the affected nerves and deadens them for up to 9 months. It has worked well for me.

Patient007 profile image
Patient007 in reply to

I have got multiple levels of spinal stenosis and have been suffering with my back for years. I am also being seen occassionally by Pain Mamnagement and I have had nerve blocks etc. I am considering mentioning to them about RFA but I am worried about how safe it is. I do not want to end up worse.

Davewm profile image
Davewm in reply to Patient007

Thanks for your reply.

With regard to effectiveness of RFA my wife had hers done some years ago after continuous back problems and she’s been pain free ever since. Although the doctor said it may only last a short time my wife’s had a long period without pain.

Hope you are able to decide and get some relief.

Lind regards

David

Patient007 profile image
Patient007 in reply to Davewm

Thanks for that. I cannot take painkillers other than paracetamol because I am on anticoagulants and can't take ibuprofen. I'm allergic to all types meds ie gabapentim etc.Regards another Dave

MSTKing profile image
MSTKing

That sounds a lot to go through - the Spinal Injuries Association has lots of info, help, support about CE. Hope that helps you.

Mitch48 profile image
Mitch48

Hi there,

I’m sorry to hear that you are suffering so.

I had Impending Cauda Equina a couple of years ago when I was 51 and extensive emergency surgery (after my few symptoms very quickly became many, I also had Spondylolisthesis which is the forward slippage of a vertebra, in my case two.

I had the following surgical procedures on L3 - L5

Laminectomies x 3

Foraminotomies x 3

Discectomies x 2

Posterior Lumbar Interbody Fusion (I have a large amount rods & pedicle screws realigning & securing my spine).

I have been left with many issues affecting my bladder, balance and mobility, I also have numbness in both feet & lower legs, horrid severe nerve pain including “lightening, electric shock type”, pins & needles, swelling of feet & legs, etc etc etc.

Not great at all but it could have been much worse!

I also have cervical spine injuries & have had 2 x ACDF’s, have cervical radiculopathy from damaged nerves at C5/6 & C6/7, cervicogenic headaches, reduced dexterity, pain, numbness along with pins & needles etc.

You mention that you had acute Cauda Equina, I take it that occurred quite recently, what are/were your symptoms & what happened at the hospital to confirm or rule it out? An MRI etc? Is this where the investigations on your prostate began?

Cauda Equina is a rare condition & can be missed due to some GPs & hospital doctors not being fully aware of symptoms & red flags, there are in fact printed information cards being issued to potential sufferers & medics to assist them. Some neurosurgeons and spinal surgeons provide flow charts (my neurosurgeon does) to assist in the referral of patients from GPs & by hospital staff to them, not just for Cauda but for all spinal conditions that have not responded to conservative methods, physiotherapy, medication etc, along with securing an MRI etc.

Please monitor your symptoms & if you start having more then I would obtain medical advice, do you have a follow up appointment yet to see your pain clinician?

Kind Regards,

Mitch

Davewm profile image
Davewm in reply to Mitch48

Thank you so much for your reply. I’m so sorry that you’ve had all these problems!

My original acute Cauda Equina was 2 days after my Laminectomy. I hadn’t been able to pass water for a number of hours and was rushed in by the fast responder paramedic. That eventually settled. Down and a couple of years later I had my Heart Surgery. Unfortunately the back surgery failed which they won’t repeat due to my heart issues. The Pain Management Consultant said that I could be now starting to develop Chronic Cauda Equina and it was on his instigation that the Enlarged Prostate needed to be ruled out. Which they’ve now done.

The GP is going to chase up my outstanding appointment to see the Consultant. The GP also said she’d refer me to Urology to double check any potential bladder problems. It’s a 49 week wait!

All the best for your future health and kind regards

David

Mitch48 profile image
Mitch48 in reply to Davewm

Hi David,

Gosh, you’ve certainly had & have lots to content with!

At least your pain consultant has matters in hand and is monitoring your back & symptoms. 49 weeks for an urology appointment is ridiculously long, I hope you have a consultation before that!

Good luck

Kind Regards,

Mitch

Emma2017 profile image
Emma2017

Hi Dave, that sounds like a lot to deal with. I had slow onset CE which when diagnosed was swiftly dealt with (within 5 days to prevent it getting worse). Had 3 microdiscectomies and one laminectomy and then a fusion.

I had a lot of bother with my leg before that, the different levels gave me different parts of my leg bother. But since the fusion it has been a lot better. If I dont't go for my daily walk it invariably gets worse but overal that was the right thing for me. I still suffer from the occasional relapse of especially bowel control but it is just something or nothing in comparison to all the pain and discomfort before.

Hope you get sorted, good luck.

Davewm profile image
Davewm in reply to Emma2017

Thanks Emma. All the best for the future.

Kind regards

David

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