phugoi1982, though our injuries are very different, I had similar experiences to yours. I had to give up on one long-time “friend” because —while I was trying to get out of nursing homes — she kept telling me that I would be in them permanently. I finally realized that she was afraid she might actually have to “help” me if I got out.
In 1999, I bought a book at Whole Foods grocery store that opened to me a world of practical knowledge. The Cure for All Diseases. You can read it free online and save yourself $20. alternativa-za-vas.com/support-files/cure_for_all_diseases.pdf It could help you improve your health. Doctors follow their very narrow training. They did save my life after a car hit me, but there is much they don't know.
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.
After reviewing this thread I found some interesting details.
According to one of my former trust doctors in 98% of all cases herniated disks cause pressure damage in the area of the foramina (so-called laterally herniated disks). Typical symptoms: pain and paresis in the lower limbs. Only very large herniated disks cause damage to the cauda equina additionally.
However in rare cases (1 or 2 %) a median prolaps forms from the very beginning. This one does not have to be very big, but its specific position can cause severe problems (CES). At level L5/S1 this means problems with bladder and bowel but not with the lower limbs due to anatomic reasons (compression of the remaining nerves within the spinal canal S2-S5. Note: L5 and S1 are already exiting at this level through the foramina.) That does not quite fit into the picture, which is typically described in the textbooks. But although this condition is very rare, it still exists...
... and is regularly overlooked and misdiagnosed.
Damage to these nerves can be verified by bulbocavernosusreflex-testing as mentioned earlier. Additionally testing of cremaster-reflex can be useful to exclude damage to the spinal cord (L1/L2).
If you are interested we can discuss more details in a PM.
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.
After reviewing this thread I found some interesting details.
According to one of my former trust doctors in 98% of all cases herniated disks cause pressure damage in the area of the foramina (so-called laterally herniated disks). Typical symptoms: pain and paresis in the lower limbs. Only very large herniated disks cause damage to the cauda equina additionally.
However in rare cases (1 or 2 %) a median prolaps forms from the very beginning. This one does not have to be very big, but its specific position can cause severe problems (CES). At level L5/S1 this means problems with bladder and bowel but not with the lower limbs due to anatomic reasons (compression of the remaining nerves within the spinal canal S2-S5. Note: L5 and S1 are already exiting at this level through the foramina.) That does not quite fit into the picture, which is typically described in the textbooks. But although this condition is very rare, it still exists...
... and is regularly overlooked and misdiagnosed.
Damage to these nerves can be verified by bulbocavernosusreflex-testing as mentioned earlier. Additionally testing of cremaster-reflex can be useful to exclude damage to the spinal cord (L1/L2).
If you are interested we can discuss more details in a PM.
phugoi1982, though our injuries are very different, I had similar experiences to yours. I had to give up on one long-time “friend” because —while I was trying to get out of nursing homes — she kept telling me that I would be in them permanently. I finally realized that she was afraid she might actually have to “help” me if I got out.
In 1999, I bought a book at Whole Foods grocery store that opened to me a world of practical knowledge. The Cure for All Diseases. You can read it free online and save yourself $20. alternativa-za-vas.com/support-files/cure_for_all_diseases.pdf It could help you improve your health. Doctors follow their very narrow training. They did save my life after a car hit me, but there is much they don't know.
Yes, I know I isolating I is. My family keeps telling me stop being a burden on us and be normal when they don't understand that physiologically I can't ever be normal.Also, they expect psychobabble to magically make me normal and they'd rather I spend time with psych because they don't want to hear my problems. And when they say "Oh, well doctors make mistakes", I just want to scream, as if to downplay and trivialize my suffering
Thanks for the suggestion. I'll check out the book. I don't trust doctors at all anymore and considering I have been right about my diagnosis for 15 years as well as other issues, why should I?
Autoimmune thyroid disease www.curezone.org/forums/am.asp?i=613533 almostthere This is a reply to # 613,533 Yes! My daughter had Hashimoto's cured when her parasites were gone. #### Cured_of_Graves This is a reply to # 614,173 I have been cured of Graves Disease. The real culprit was overtoxicity of heavy metals (mercury in particular), which caused severe candida and parasite overgrowth.
Vertigo- Kill your parasites with wormwood, cloves, and green black walnut hull tincture, or other herbal remedies. www.drclark.net/en-us/testimonials/zapper-testimonials/579-6004-zapper-and-common-parasites-file “The vertigo attacks are definitely caused by strep and salmonella in the hypothalamus, as plate zapping for that instantly brought relief, which makes Meniere's truly a syndrome because you have multiple symptoms caused by different factors. Although the unifying factor would likely be a particular parasite.”
However in rare cases (1 or 2 %) a median prolaps forms from the very beginning. This one does not have to be very big, but its specific position can cause severe problems (CES). At level L5/S1 this means problems with bladder and bowel but not with the lower limbs due to anatomic reasons (compression of the remaining nerves within the spinal canal S2-S5. Note: L5 and S1 are already exiting at this level through the foramina.) That does not quite fit into the picture, which is typically described in the textbooks. But although this condition is very rare, it still exists...
... and is regularly overlooked and misdiagnosed.
rOhbart-
You are a treasure on this forum!
The image shows the above mentioned condition. It's a MRI of my spine (L5/S1) 2 days before I had surgery in 2005.
I have attached my "worst" MRI which was done 2 days before my L5-S1 discectomy in May 2014. If you're wondering why I had an MRI so close to surgery it's because the surgeon was going to do the microdiscectomy based on the MRI I had done 3 months before. However, his "genius" nurse manhandled me during the neurological examination at the office visit, while I had excruciating bilateral sciatica, and during the strength test inflamed my right leg and foot so badly that the pain had tripled. I didn't even get so much as an apology. A few days before the surgery, during the pre-op consult I was told I was going to get a left sided microdiscectomy and my right side was fine. I was furious and said things had changed and my right side was worse due to the Neuro's nurse messing up. Long story short, they did the MRI and in the operating room, the doctor thanked me for forcing him to do another MRI because he had to now do a much bigger two sided discectomy now but of course never took the blame or apologized. And this happened at BWH hospital in Boston which is one of the BEST Neurosurgery hospitals in the states! As you can see form the MRI, I tried to match your slices but either way, I looked through the Axial view and didn't see the secuestration you had yourself. On the sagittal view you can see there is quite a bit of disc herniation poking through. The Neuros keep telling me they've seen people walking with much worse than this....Whatever. Thanks.
Does your software allow to open multiple views simultaniously? E.g. in my pictures the right one (more precisely the green lines) shows the exact position (level) of the left slide. This can be useful for even better evaluation of images and different slides. (And it certainly helps looking at the right level.)
You don't have to share your images publically. Maybe this is too personal.
But perhaps you'll find new interesting hidden details in your images using advanced features of your software.
I saw my x-rays briefly at the hospital, but don’t have a copy of them. I should try to get them...not that I have a herniation. My back is just “broken”.
phugoi1982, the hospital sent me to a nursing home, rather than home to my house, because I couldn’t do a transfer from my bed to my wheelchair without assistance. After that, in the nursing homes, I wasn’t “authorized” to get out of bed alone. Next, the aides would come to get me out of bed, while saying that some “other” paralyzed lady could get herself in and out of bed without assistance,...in other words, making a bad comparison of me with a phantom resident. (Your mention of hearing a Neuro say that others could walk with your injury reminded me of this.) Later, I saw the other resident the aides had spoken of lift one of her feet and then the other. She was “paralyzed”, but had no broken back...and was much younger than me. It’s so annoying to have people make unflattering comparisons of us with other injured people!
Yes, I can only imagine what you are going through. In my case, since I look normal, I am always saddled with the unrealistic expectations of a normal healthy person. I often wish I had MS, or some disease that is at least well known even if I had more deficits because at least I know what is going on. I think sometimes my biggest fear is I will die with no diagnosis and people will just assume my problems were psychological. That is the main reason I keep pushing for a diagnosis which everyone accepts. The only person on my side is the Urologist. I've attached his note below summarizing his impressions.
I mean, it doesn't get any clearer than what's he's said that progression of my disc disease will cause further deficits in voiding and sensation. That is textbook "Cauda Equina". Like I said before, my neuros and neurosurgeons attacked him for putting that in my chart citing it as irresponsible because of their stupid belief that if they cant' see it on the MRI, it can't be possible.
Thanks for the suggestion. The software is very sophisticated and I'm sure it can be done as easy to pull up multiple views simultaneously. I will try to sit down this weekend when I get a break and figure it out. I have been exhausted mentally and physically trying to find a new job and just coping.
Throughout history, good, smart doctors have been ‘trashed’ by those of the status quo. Jealosy? Avarice? An insatiable appetite for adulation?
It may seem like a very minor suggestion, but...taking olive leaf powder (with water) orally might disinflame your sciatica enough for you to feel an improvement. (I suggest using just the simple powdered form, or else making a tea from the crushed leaves,...NOT an extract, though an extract is what is usually pushed by marketing.)
www.dynamicchiropractic.com/mpacms/dc/article.php?id=15152 “Authors of a recent paper1 found an association between sciatica and bacterial infection. They used serological testing with 140 sciactic patients who were selected as controls for a spondylodiscitis study. The researchers had unexpected finding: Thirty-one percent of the slated control patients tested positive for gram-positive microbes. These patients denied having had surgery or any infection in the previous six months. When the authors looked at 36 more patients who had undergone a recent microdiscectomy, they found that 19 had positive bacterial cultures when the disc tissues that were removed were tested.”
“...Some of the many choices for clinicians include echinacea; goldenseal; garlic; astragalus; mushroom extracts; probiotics; olive leaf extract; and colostrum.”
In my opinion, using a SyncroZapper could also diminish bacteria, which would decrease pain and encourage healing.
Sorry for my bad English, but what is "behavioural management"? I understand the words, but what does this mean actually?
Does he tell the other doctors in a hidden way that they should deny the organic problems? That would be a typical psychosomatic procedure.
I had a similar experience when I came home from rehab. There were a lot of conditions (diagnosis) described in the doctor's letter (anamnestic known cauda-equina-syndrome, atactic gait-disorder and paraparesis due to distorsion of the cervical and thoracic spine caused by my last car accident, neurogenic respectively hyposensitive bladder - amongst others).
Then at the very end of the letter there was a "hidden" hint that all my symptoms were made up ("suspected somatization disorder").
Good for the insurance companies - bad for the patient. I'm having a lot of troubles getting medical care since then (similar to the years before).
r0hbart, I feel a kinship with you regarding “experts” who love to call whatever symptoms that they can’t cure “psychosomatic”. Such a copout!
cop out phrasal verb of cop 1. informal avoid doing something that one ought to do. "he copped out at the last moment"
The expert would have to have enough intellectual curiosity to widen his/her own horizons to medicine of other cultures and countries, read more, investigate unproven theories, get in there and “dig” for answers,...and sometimes use an anecdotal remedy that’s not out of a “cookie-cutter” medical book, in order to actually help the patient.
Sorry for my bad English, but what is "behavioural management"? I understand the words, but what does this mean actually?
Does he tell the other doctors in a hidden way that they should deny the organic problems? That would be a typical psychosomatic procedure.
I had a similar experience when I came home from rehab. There were a lot of conditions (diagnosis) described in the doctor's letter (anamnestic known cauda-equina-syndrome, atactic gait-disorder and paraparesis due to distorsion of the cervical and thoracic spine caused by my last car accident, neurogenic respectively hyposensitive bladder - amongst others).
Then at the very end of the letter there was a "hidden" hint that all my symptoms were made up ("suspected somatization disorder").
Good for the insurance companies - bad for the patient. I'm having a lot of troubles getting medical care since then (similar to the years before).
So, to answer your question "behavior management" means urinating at a fixed time interval so I don't overfill because i can't really feel when my bladder is full. I've been so frustrated because I have been trying to get into the difficult to diagnose NIH program here in the US:
All of my neurologists refuse to write me a recommendation letter for the program feeling my issue now is "psychogenic" even with a diagnosis of neurogemic bladder. I had a nasty phone call with one of them last friday when i said "You basically are trying to cover your ass because I have Cauda Equina and you and everyone else missed it. Because I have a difficult case you can be a coward and hide behind my supposedly "normal" MRI's and protect yourself from litigation but I will destroy your career." Probably didn't help my case. Anyways, I am now going to try to get my Urologist who agrees with the CES diagnosis to write the letter. Hopefully he will be more receptive.