Hello. I apologize for the length of this post but I have been suffering through a crippling ordeal that has left me suicidal and without any hope. I am a 33 y/o male. When I was 21 I sustained an L5-S1 disc herniation by jumping from the top of a bunk bed and landing on one foot vs. both. (I did not fall). I had debilitating back pain and sciatica and the doctors refused to even order an MRI because they said I was too young to have a herniated disk. Eventually an MRI showed an mild to moderate L5-S1 disc herniation with moderate spinal stenosis compression of the exiting S1 nerve root and no narrowing of the neural foramina. Around the same time I hurt my back I developed a strange strong urge to urinate all the time that was unbearable. No incontinence, but I went to multiple urologists and neurologists who dismissed me as a hypochondriac and tried to put me on all sorts of drugs. The neurologists said that it was impossible for my back to have caused this symptom. Over the next 12 years I continued to have bladder issues that progressively worsened.
I started to lose sensation in the bladder and eventually had just pain. The thing is everytime my bladder got worse it corresponded to worsening of my back as evidenced by the MRI. But the neurologists were dismissive saying there is no Cauda equina compression so it was impossible for my back to be causing this. In Jan. 2014 my back pain became worse and I developed complete ED and more bladder deficits including weak stream. Went to the ER in Boston and the MRI now showed Neural Forminal Narrowing and impingment of the the thecal sac now affecting both exiting nerve roots. The doctors dismissed me even though I begged them for surgery and was absolutely sure this is what was causing my problems. In May 2014 I had microdiscectomy for the back pain (the doctor cautioned me that it would not relieve the sexual and bladder problems because he did not see any evidence of that on the MRI) and since then I've still had the same problems.
Finally, I begged a Urolgist post surgery to do a comprehensive Urodynamics test and that showed a Neurogenic bladder. I was basically urinating using abdominal muscles and not the bladder. I was livid because I had begged the doctors for years to do this test and they ignored me telling me bladder issues and now sexual issues were psychological. I went back to the Neuro armed with this information and he dismissed the urologist saying "Yes, you have a neurogenic bladder but there is no way your back could have caused it." They then did multiple MRI's of brain/thoracic/cervical spine looking for MS and other demyelinating diseases but all normal. Also, I had a completely normal neuro exam, and normal muscle strength, so even the doctor was skeptical about me having MS for 10 years (the beginning of bladder troubles) and not having more symptoms.
I apologize for the long post but I am livid because the doctors have crippled me and now I can't even sue them because I cannot conclusively prove that my neurogenic bladder was due to the l5-s1 herniation even though it's obvious from the timing. Has anyone else had a disc herniation cause "Cauda Equina like" symptoms without actually having compression of the Cauda Equina?
I suspect, after doing a lot of research that my S1 nerve root impinged the piriformis muscle which I in turn affected the pudendal nerves which I believe or lower (S2-S4) but I can't prove it. The doctors gave up on me and now basically want me to hunt for some phantom autonomic neuropathy specialist because they think in addition to the back issues, maybe some mysterious autoimmune neuropathy hit me although I believe this is complete garbage. The strongest link I have is that every exacerbation of back pain and progression of disc herniation caused as evidenced by an MRI correlated with a worsening of the sexual/bladder problems. Thanks again for the input and sorry for rambling so much.
Im currently experiencing bladder issues I see a pain management specialist he's also a spine specialist my injury occurred in 2015 a car went thru my driver wheel under my driver side seat out the back side knocking both wheels off at impact my initial MRI showed no disc bulge or anything at the time a year later I have another one and it shows a mild disc bulge at the L5 S1 also the doctor told me I couldn't be experiencing this pain I have had injections so many times I don't want any more not only do I have bladder issues I can't walk straight without pain I lose leg strength I have a few falls I could go on and on but I'm on lyrics now and without it I can't walk but the doc said he don't understand how so I joined this forum to let the member from a year ago know he is not alone it do make you feel crazy I can't sleep at night can't take walks and a host of other things your not crazy I'm gonna leave it there
No fibrosis and no spondylolisthesis on bending x-rays. I do have have lumbarization of at L5 which the doctors say is relatively common and unrelated but I'm not so sure. It is a sacral vertebra that takes the appearance of the lumbar vertebra but has failed to fuse.
I totally agree with you about education. I'm a very well versed patient and pro active but the doctors treat me more like a mental patient and I'm frequently told to take anti anxiety pills. Upon this I explode and tell them if you ass#^#^$ had listened to me when I said I had a neurogenic bladder 15 years ago (which was very very mild) and done something I wouldn't have progressed to where I am now. Why go to medical school when a 21 y/o engineer with no medical training correctly diagnosed himself when everyone else LABELS him a hypochondriac?
Hi Peaches. Regarding the anti-anxiety pills that the doctor would was so eager to give you, there is a good chance that he would have been able to to "pad his bottom line" for giving you that prescription.
"Ornstein continued, "It's illegal to give kickbacks to a doctor to prescribe drugs, but it is legal to give money to doctors to help promote your drug. Some doctors make tens of thousands or hundreds of thousands of dollars a year beyond their normal practice just for working with the industry." ...ProPublica has a tool called Dollars for Docs that has a search tool that purports to show whether your health professional received drug company money." www.cbsnews.com/news/does-your-doc-have-ties-to-big-pharma-how-youll-be-able-to-find-out/ projects.propublica.org/docdollars/
My suggestion is olive leaf powder,...not the extract, though the extract is what you'll usually hear about. Good old olive leaf powder is anti-inflammatory for nerves. "Neurodegenerative diseases Olive leaf extract suppresses inflammation in the central nervous system and reduces damage caused by oxidative stress. This helps protect the nervous system from the effects of stroke, brain trauma and age-related degenerative conditions like Alzheimer’s and Parkinson’s disease." www.qbuzz.qnet.net/blog/2014/06/12/olive-leaf-extract-extracting-poor-health-lifes-worries/
Before my SCI, I always went to a chiropractor for bladder issues. But now, with SCI, I don't think that insurance would cover most chiropractors, so that ceases to be an option. They can't risk it with us.
Sorry to hear this I started my journey as an L5 S1 herniated disc with severe pain and some left leg weakness foot drop and the bladder urges. Needless to say I was in the Army at the time and they decided to fuse me and put a screw in the wrong place which made things way worse. Then found the mistake 2 months later and messed up again I am now a T3 para long story short. You can definitely have all the problems from the injury level you have and it not being treated properly the caudia equinea area is alot more delicate than they like to tell us.
Patients can give manifestations of separated caudal equine disorder, disconnected cons medullas disorder, or a blend. The indications and indications of caudal equine disorder have a tendency to be for the most part bring down engine neuron (LMN) in nature, while those of cons medullas disorder are a blend of LMN and upper engine neuron (UMN) impacts (see Table 1, beneath). The historical backdrop of beginning, the term of side effects, and the nearness of different highlights or side effects could point to the conceivable causes.
Low back torment can be separated into nearby and articular torment. Neighborhood torment is for the most part a profound, throbbing agony coming about because of delicate tissue and vertebral body disturbance. Articular torment is for the most part a sharp, cutting agony coming about because of pressure of the dorsal nerve roots. Articular torment extends in dermatology circulations. Low back torment in caudal equine disorder may have some trademark that recommends something other than what's expected from the significantly more typical lumbar strain. Patients may report seriousness or a trigger, for example, head turning, that appears to be strange.
Serious agony is an early finding in 96% of patients with caudal equine disorder auxiliary to spinal neoplasm. Later discoveries incorporate lower furthest point shortcoming because of association of the ventral roots. Patients by and large create hypothermia and hypoglycemia. Tactile misfortune and sphincter brokenness are additionally normal.
It's a dirty business, but making sure your little one's bum stays clean and dry is crucial to keeping her comfortable and avoiding diaper rash. Expect to become a diaper-slinging pro, since newborns typically soil ten or more diapers a day. That's more than 300 changes in the first month. (But who's counting ...
Patients can give manifestations of separated caudal equine disorder, disconnected cons medullas disorder, or a blend. The indications and indications of caudal equine disorder have a tendency to be for the most part bring down engine neuron (LMN) in nature, while those of cons medullas disorder are a blend of LMN and upper engine neuron (UMN) impacts (see Table 1, beneath). The historical backdrop of beginning, the term of side effects, and the nearness of different highlights or side effects could point to the conceivable causes.
Low back torment can be separated into nearby and articular torment. Neighborhood torment is for the most part a profound, throbbing agony coming about because of delicate tissue and vertebral body disturbance. Articular torment is for the most part a sharp, cutting agony coming about because of pressure of the dorsal nerve roots. Articular torment extends in dermatology circulations. Low back torment in caudal equine disorder may have some trademark that recommends something other than what's expected from the significantly more typical lumbar strain. Patients may report seriousness or a trigger, for example, head turning, that appears to be strange.
Serious agony is an early finding in 96% of patients with caudal equine disorder auxiliary to spinal neoplasm. Later discoveries incorporate lower furthest point shortcoming because of association of the ventral roots. Patients by and large create hypothermia and hypoglycemia. Tactile misfortune and sphincter brokenness are additionally normal.
Kristabal, I see that your post includes the words “(see Table 1, beneath)”. This indicates to me that your post, or parts of it, have been copied from a source such as a research article. If this is so, would you please provide us with a link to that source material you are quoting?
Cauda equina disorder (CES) is manifestations because of harm to the nervous wreck underneath the finish of the spinal rope known as the cauda equina.[2] Symptoms incorporate, low back agony, torment that emanates down the leg, deadness around the rear-end, and loss of entrail or bladder control.[1] Onset might be quick or gradual.[1]
The reason is typically a plate herniation in the lower locale of the back.[1] Other causes incorporate spinal stenosis, malignancy, injury, epidural canker, and epidural hematoma.[1][2] Diagnosis is regularly by medicinal imaging, for example, MRI or CT scan.[1][3]
Treatment is by and large by pressing surgery as a splenectomy.[1] Some individuals are left with continuous bladder issues, sexual brokenness, or numbness.[1][3] A poor result happens in around 20% of individuals in spite of treatment.[1] About 1 out of 70,000 individuals is influenced a year.[1] It was first portrayed in 1934.
It's a dirty business, but making sure your little one's bum stays clean and dry is crucial to keeping her comfortable and avoiding diaper rash. Expect to become a diaper-slinging pro, since newborns typically soil ten or more diapers a day. That's more than 300 changes in the first month. (But who's counting ...
So an update on my condition. I am so furious now. After coming back from Mayo Clinic with a false hope diagnosis of pelvic floor dysfunction I did therapy for 4 months with absolutely no improvement. My pelvic floor therapist said to me "This isnt' working. You need to back to your Urologist." I went back to him and he said "What do you want from me. This is NEUROLOGICAL. This is a Cauda Equina compression. Mayo clinic just gave you a BS diagnosis to get you off their back and because it was easy". I was crushed by this and my back pain has been steadily getting worse. The bladder and sexual issues also have been getting worse. Coping with this has left me destroyed inside and I quit my job this year. I went to a pain management doctor to get a nerve block for the back pain this year and even he said I had severe face joint arthritis from late surgical intervention. He also agreed with the Urologist about Cauda Equina Syndrome. He said "WHy the hell did these Neuros wait 10 yrs before doing your microdiscectromy considering you had bladder and sexual issues progressing along with the S1 nerve root compression. A "normal" MRI (without spinal cord compression but nerve root compression) doesn't preclude cauda equina. It's a diagnosis made in context of the patient's symptoms". Of course, everyone agrees except the high and mighty goddamned Neuros who worship the MRI lest they admit they made a mistake that could open them up to a mountain of litigation.
To make matters worse, I quit my job and moved to MD. I stupidly took the advice of a relative who is recommended a supposedly wonderful young, open minded Neurologist. After the appointment she told me I had a "Neurotransmitter disorder" and everything was psychological. This despite the fact that she admitted that the curling in toes were due to S1 nerve root damage. Gee, I thought I was normal. To make matters worse she immediately recommended that I be committed to a psychiatric institution. So, my relative and my family that got scared because of this (insert worst profanity) took me to the ER trying to have me committed.
Fortunately, I stayed calm explained the desperation of my situation and what was going on. EVEN the the psychiatrist who examined me thought I was going through a major reactive depression due my undiagnosed situation and did NOT in anyway constitute a threat or problem. SHe even thought I had cauda equina because she had done her residency in Neurophysiology and that the MRi's were misleading the doctors and they were being lazy in being dismissive of me. So long story short I wasn't committed and she recommended that I try to get into the Undiagnosed diseases network (UDN) where they have multiple sites that treat mystery conditions.
My family has pretty much disowned and things i'm a mental case now because I quit my job and "can't be normal like everyone else". I will try to get into this clinical program but it's infuriating how doctors can dismissive patients for years as psychiatric then never take responsability when their misdiagnosis costs them quality of life. As far as I'm concerned, screw the malpractice laws in America. Doctors who misdiagnose patients as mentally ill and deny them treatment for legitimate conditions should be jailed for life.
That’s terrifying, phugoi1982. I’m so glad that the psychiatrist had enough sense to go against the opinion of the “open minded Neurologist”. Will you be able to take care of yourself, now that your family has become so difficult?
That’s terrifying, phugoi1982 . I’m so glad that the psychiatrist had enough sense to go against the opinion of the “open minded Neurologist”. Will you be able to take care of yourself, now that your family has become so difficult?
Well, I have been living on my own anyway for 5 years so it just reinforces more that my family doesn't care about my situation. Worse, still it was my family that kept insisting I was mentally ill and sent me to a psychiatrist when I started having symptoms 15 years ago after my herniated disk. Basically, I was in 3rd year of college and was overwhelmed and dropped out to deal with my health. They were basically ashamed of this and insisted that all my health problems including diabetes, autoimmune thyroid disease, hypertension, vertigo..and of course my herniated disk issues were psychological because I can'[t cope with life. They are all type A academically inclinded and once i ended up having problems nothing else mattered. BTW, I did end up finishing my degree in Aeronautical Engineering despite their BS. They've treated me like a mental case since. I also lost all of my friends who got sick of hearing about health problems and once I told a close friend about he sexual issues he spread it around facebook and I got massively shamed over it. I ended up deleting my account. Even at my job for a major defense company in America, it became increasingly difficult to cope with colleagues coming in everyday bragging about the 10k or 30k marathons they run as well as their sex lives. I pretended to laugh at these things for a while but it really started to affect me. Not to mention, people made fun of my back issues whenever I had icepacks or whatever calling me "Grandpa". You have to remember my type injury is insidious and i look perfectly normal, walk normal, have normal posture.
I doubt these jerks would have the guts to make fun of someone visibly crippled because of their fake conscience. My point is we never know what is truly going on with people so we shouldn't judge even if they look "fine" but are in pain. I just feel so disconnected from normal society. Like, I can't relate at all the what a normal 35 y/o male would be going through. They have relationship issues, and work problems and .....I have bladder isssues, sexual issues, blood sugar, bp issues so I almost feel invisible. No one understands that. Even just 5 years ago, I felt mostly normal. Mild back pain, some sensory issues in the bladder but normal and normal sexual function. I think about it and it enrages me that I could've lived with what I had 5 years ago and yet why why why did no one do anything about my back issues then. Sorry to ramble, I am about throw my cell phone at the wall. I have developed a lot rage in the past 5 years. I apologize for the venting but I feel a little calmer now.
Phugoi1982, I'm sorry to hear about your ongoing problems. Did you ever think about a lawyer for personal injury? Your problem does not seem to be medical but legal nature.
Diagnosing CES is not a complicated matter. Symptoms are unmistakable.
I have heard of many patients who have been denied diagnosis (including me for many years).
Ask yourself the following question: Who benefits from the fact that no diagnosis is made?
If you have problems finding a good answer, consider the following:
There is no cure for CES even if surgery was successful. CES diagnosis entails high costs for insurance companies (social insurance, medical care...) in the longer term... Negligence does not even have to be involved.
By the way, have you ever had your cremaster reflex being tested?
Yes, I have consulted with a Lawyer but I have NOP CASE. There is no way to proves I ever had CES. None of my MRI's over 15 years show compression of the spinal cord. They show a progressively worstening L5-S1 disc herniation compressing the left and right S1 exiting nerve root (lateralized), no compression of the thecal sac that contains the spinal cord. The only objective findings I have are 1 Urodynamics study from 2014 showing a Neurogenic bladder (weak pressures). However the one I had in 2017 at Mayo Clinic showed a normal bladder even though symptoms are worstening. The Neuros use this as an excuse to say, never had a Neurogenic bladder based on a time history. The opinion of the Urologist seems to be irrelevant legally and medically for treatment. As for there being no cure, prompt surgery has been shown to dramatically improves outcomes. Also, usually CES presents with a window of hours or days. I had 10 years of very slowly progressive symptoms whose progression could've been halted at the very least at any time.