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cervical issues - very confused

Started by monty on 10/08/2011 12:57pm

I have had 2 cervical fusions (C5-6 in 2005 & C6-7 in 2002). I've been in SEVERE pain, dabilitating pain, since. I have migraines 2-3x's per week. I get phsyically sick from the pain and from the migraines. I have been so several doctors and have had numerous treatments (physical therapy, injections, traction, etc). I was diagnosed with DDD of all 3 sections of my spine. Some doctors told me "nothing we can do" or "it's mind over matter, keeping doing what you would normally do". Tried that for a week (just pushing through the pain, trying to ignore it) and was literally in bed for 3 weeks straight after that. I moved 6 months ago to a different state and I have started Acupuncture. I have also seen a neurosurgeon and an orthopedic spine surgeon. The first 1 I saw was the neurosurgeon. I had brought my MRI with me from March of this year. He ordered a CT Scan and x-ray. After reviewing all of the scans he told me that my one of my fusions did not take. He said that the 2 discs above the ones I've already had fused were most likely going to need to be replaced but advised that I hold off as long as possible due to my age (39). He said it was enevitable that I would have to have the surgery but there was only a 60% chances of a successful surgery. So I decided to go to another surgeon to see if I'd get the same results. 2nd dtr (orthopedic) said during the 1st appt after review the same exact scans that BOTH fusions did not take, the bone graft had been ground down to nothing, there was nothing left. He said the disc above the 2 already done looked like it needed to be done as well but ordered another MRI because the one I had brought was almost 6 months old & he also ordered an EMG. Soooo.... 2nd appointment with him, he said that "he's not certain if the 2 already done took" He wouldn't know until he went in. He also said that the one above and the one below the 2 already done would need to be fixed as the disc space is extremely narrow. He said he could do surgery and try to fix the structural integraty but he said I may come out of it the same way I went in, with no relief from pain... so why do it??? He also said he can't figure out why I'm getting the pain in my shoulders, down my arm into my hands (feels like I'm in a vice or being run over by a MAC truck- oh and I get it on both sides!)... he can't figure it out because my spinal cord is not being impacted. I'm not imagining the pain or the migraines I get from my pain! It is 200% there! So why, if the spinal cord is not impacted, am I in so much flippin pain!!!! I've been dealing with this for 9 years and I just want someone to validate WHY! They won't even look at my lumbar (2 1/2 yrs ago, an MRI showed 3 bulging discs) because the focus is always my cervical. Yes, that is the most painful spot but my lumbar is getting worse and worse. I have pain in my hips, down my buttocks, into my groin (sp?), down my leg, into my feet with numbness in my toes! I have a hard time sleeping.... I can't sit, stand, walk, climb stairs, for any period of time.... I can't lift anything, move my head without severe pain. I can't do ANYTHING and I just want to know WHY.... I've read information on DDD and I know that it's very painful but when the dtrs say THEY don't know why, it makes me wonder... Acupuncture has helped me mentally and give me about an hour or so relief after but I can't afford to go as often as I should! I'm also trying to change my diet to help with inflammation but damn, it's expensive to eat that healthy!!! I'm going for a 3rd opinion but at what point do I say, forget it.... I'm just at a loss..... Any input would be appreciated....

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Monty, I'm not a doctor...no med training...no real life med experience, please do not consider my statements to be fact, intended to diagnose/cure/treat any condition...but I want to share w/you.

1st and foremost, let me STRESS: I truly understand your dilemma and I actually understand some of your pain...so I hope it brings a bit of comfort knowing someone out there actually knows how freaking difficult this is for you and how much pain you are in, to the point where you can't explain itwith words.

Just a quick bit about me: 30yrs old, wife and 2.5yr old baby girl, unemployed/permanently disabled. I was injured on the job in '04, right inguinal hernia. Surgical repair for that hernia in Jan '05, followed by discovery of a left ing-hernia, surgically repaired 3months later. Recovery from BOTH repairs FAILED drastically; ended up with severely scar tissue entrapped nerves, leaving me debilitated and in constant frightening pain. RX drugs for many months, then failed nerve root blocks (injections). Feb '06, operated on by same surgeon from both herniorapphies...this time, she performed a right inguinal triple neurectomy...basically, open up the groin w/roughly a 5" incision, remove excessive scar tissue, locate the 3 inguinal nerves (we all have 3 nerves that branch off into both L/R sides of our groin...stemming direct from the distribution of the spinal nerve bundle)...once found, the nerves are supposed to be ablated/severed; the "stump" ends are then supposed to be "buried" in non-nervous tissue (like muscular tissue or adipose nearby the site), suture up and all done. Sounds simple, right?

Funny how a surgeon can make something sound so simple, then after surgery, when you start experiencing god-awful pain, they make the surgery sound like it was the most complex encounter of their lifetime. My surgeon was apparently very experienced with that type of operation; her and her colleagues @ Kaiser all said so..."yea, absolutely, she will do a great job...you're in good hands." Then...months and months of calling the surgeon with NO RETURN CALLS, you begin to wonder, what exactly happened on that operating table that's SO BAD, she can't call? Well, thank goodness for surgical reports: she never located all 3 nerves, in fact, she cut two and didn't bother to bury their stump ends, later on...resulting in development of severe neuromas in my groin (nerve tumors). Long story short; ended up finding out that was her FIRST neurectomy, she had TWO other surgeons working on me who I never met before OR after the operation (confirmed in the surgical report), and since that operation, Kaiser ORDERED her NOT to recommend and/or perform any more inguinal neurectomies. In fact, I don't think ANY ing-neurectomies have been performed at that FACILITY, by ANY surgeon, since my failed operation. That procedure left me with 10X worse pain than before...my meds went from 5mg vicodin 4-6/day...to percocet, then morphine, then time release kadian, then duragesic/fentanyl, dilaudid...now methadone...and along the way, about 2dozen OTHER severely dangerous meds; tricyclic antidepressants, muskuloskeletal relaxants, benzodiazapenes, anti-epileptics/seizure, NSAIDS, stimulants, NMDA-antagonists, and other crazy stuff you would NEVER consider using unless your pain was off the charts.

Since '06, I've undergone 6 additional major operations, including 2 peripheral nerve stim implants and 1 spinal cord simulator with laminectomy/laminotomy @ T-11. In just under 2 years since the spinal cord stim surgery, I've developed radicular-neuropathy in the distribution of my cervical spine, down my neck-shoulder-arm-fingers. I'm now diagnosed with cervical DDD (w/out an MRI?...kinda jumping to conclusions, and NOT good ones), CRPS II and neuropathy of my lower extremities, including my abdomen, lower abs, groin, genitals, C spine and neck, T spine and T11 dermatome distribution, lower back muscles (fortunately, seemingly healthy lumber spine, sacral pain and nerve damage, hips, upper...and inner thighs. Most specialists who've seen/treated me think I'm NUTS, that there is NO WAY I can be experiencing all this...even though THEY'RE the ones who.firmly diagnosed all the conditions!

Last bit of info for me...roughly one year ago, I was hospitalized 3 times with "hemi-paralysis," basically...no sensation, no power to move/control, and complete inability to use my right side; from head to toe. After this, the docs (@ kaiser, not my PCP/treating doc outside of kaiser thru work comp)...they definitely thought I was nuts, that it was "in my head," b/c apparently, there is NO WAY my symptoms could be described by my injuries/condition. Only ONE doctor with Kaiser thought different; he even had a tentative diagnosis that was CONFIRMED by an invasive myelogram/CT-scan...cerebral spinal fluid leak, stemming from the location of my spinal cord simulator wire and paddle lead sutured into my epidural space @ T11...the stimulation was causing a forcive "draining" of the CD-fluid from my epidural canal/nerve bundle and the space around my brain...resulting in my brain "sagging" and pressing thru the occipital opening at the base of my skull; finally, causing crushing pressure that made my right body go into paralysis. Kaiser's top docs and administrators motto discuss mine and other severe cases...their decision, after seeing a myelogram confirming the csf leak: NOTHING IS WRONG with him, there is not ENOUGH fluid to prove the diagnosis and his symptoms cannot be explained. Two weeks later, my kaiser pain doctor who developed the theory and ordered the myelogram...was no longer employed with Kaiser. You do the math!

So now, I am prepping for complete removal of both stimulator units, but since my T11 is so complex, I'm being sent to one of the world's top neurosurgeon @ UCDavis, CA. Did I mention...that over a year ago, there was a FULL recall/warning issued on my spinal.cord stim battery (and AGAIN, this year)...or did I mention last year's FULL recall of almost EVERY paddle lead made by my stimulator manufacturer, including the paddle in MY SPINE? Nope...forgot to mention that....probably b/c nobody said a single word to me, I had to find out by chance just 4 months ago. Why were the paddles recalled, you wonder? "In certain rare cases, the paddles cause neurological deficits and PARALYSIS." Need I say more? You gotta wonder why our gov't and the FDA ALLOW Big Pharmaceutical companies to be sued over improperly tested medicines, BUT...they DO NOT allow medical device manufacturers to be sued....hmmm.

So, I've told you enough about me. Before I dive into your story and throw out my thoughts, can I ask you a question or two?
#1- what state do you live in? I ask b/c there ARE alternative ways to help with your symptoms...even help regenerate tissue and disc fluid composition...I know, b/c I've dedicated the past 4 years of my life researching and developing those treatment regiments with over 10 DDD patients now pain-free. It's a long shot, but always worth consideration (ill explain next time exactly what it is that I study/developed).
#2- when you started experiencing the pain/symptoms down your shoulder/arm...was there any particular triggers or is it a constant problem? Is it worse at the end of the day...or when you wake up? Do you get any headaches in the back/base of your skull...esp when standing/upright? Lastly, can you describe the "type" or sense of pain you're feeling down your arm...and specifically describe the location of the pain signals (I. E., side of neck, front of shoulder, back of biceps, thru the funny bone region, down the outside of forearm, into just the ring and pink fingers)? The last question may reveal some details about where and why, exactly...your pain is generating from.

I've literally read a half dozen of the most intense collegiate-level textbooks on pain management, peripheral and general neuropathies, even neurological pain management (a BEAST of a textbook)...with so much time spent laid-up from surgeries and recoveries, I even read some if the tougher to understand texts 3-4 times...even highlighting and taking notes :). You'd be AMAZED at how easy it is to learn about your OWN condition, once you find the proper resources.

I hope that my story could take your mind off tour own pain for a bit....I sent trying to make my story seem worse than yours or try to make you feel unimportant...just the opposite, I recognize just how severe your condition is and how frustrating and literally painful it must be to keep running into dead ends with your doctors. I've BEEN THERE...in fact, know more than ever before, I cannot find a single person who knows what the heck is going on with me...hence the need for me to see the neurological specialist. Just remember...having emotional and mental support is ABSOLUTELY necessary for you to make it thru all of this. I've tried to go at it alone, only to end up in a dark and deep hole. I'm happy to share with you and throw out my advice (from personal experience only)...whatever I can do to help, I think its simply good karma at this point, regardless of if I even believe in karma at all!

Talk to you soon.


Oh my goodness David you seem to know so much. I have not yet seen a dr, and most of the systoms u expain I have!! I awake w the pain. I have pain in the front of my shoulder, pain right above the elbow on the inside of my arm, and down in the same spot near my wrist. I awake in the middle of the nite w complete numbess in legs,hip,buttocks even gental area. Hands go numb and tinging. two diffrent sensations. Yesterday I woke up and I got this shock and numbess at the same time in my left hand! Hurt like HELL, felt like I was shocked by an electrial. I wake up and my torso is numb on the right side. And when Im up waking the left side torso will go numb? Most of my pain feels like muscle, pulled, stanined, stiff, and spasam. I have had an MRI of only the cervical area and know I have a diffuse bulging disc,and a large herniated disc. The herniated dics is at C-7 but the material is acutally in the T-1 dics area migratied on the right side. I also have A little bit of DDD. and two other thgs never heard of? Cervial lordeis, and retrotesis. I know Im not spelling those two right. I finally go to a Dr tomorrow and seeing the neuro next month. I did see an ortho and he told me I was outside of what he can do and said I need to see the neuro. But looking at my MRI I needed surgrey. And also I wake up feeling like I really have to pee, but when I go its not alot but the feeling is so strong. And I can wake up 4 to 5 times a nite using the bathroom? And I know its not a UTI, bc I know what that feels like, there is not pressure after using the bathroom. Just the sensation and I have to go right then!! Thanks so much.. And Montey I will say a prayer for you, that you find someone who knows what is going on.. Good Luck. Sincerly, Jamie Lynn


Your nightmare is my biggest fear. I could have wrote everything you note here except I have not had any surgeries because I am afraid to be where you are. I am sorry for the pain you are experiencing, and my heart goes out to you. I too have each and every symptom you describe. I won't go over my situation, but you should know that what you have been through could have opened you up to FIBROMYALGIA; the head and neck pain along with the leg and hip pain, and lack of sleep would definitely be explained. That you are a man, or the fact that you have such spine damage may cause doctor's not to this consider this, however I think you should. You need to see a doctor that specializes in arthritis. Pain medications do not work for me either, so I don't take them. I know this will sound counter intuitive to you but yoga for mobility and biofeedback for pain as well as massage and acupuncture are my savior and my insurance does not pay for them. If you are in California I would suggest you see Dr. Garfin. Go here.http://ucsd.photobooks.com/directory/profile.asp?setsize=10&dbase=main&pict_id=0003610 You should also make sure that anyone that touches you in the future concerning any surgery is "board certified," otherwise you are just a practice patient. I know they won't like me saying that but a board certified doctor has done the work to get certified. All the best to you. And let me say for myself that until I can't swallow or hold my bowls I won't be having any surgery.


Same for you Jamie, as the urine thing is also part of every symptom you describe including having to pee with not much coming out but no UTI....you can have spine problems as well as Fibromyalgia. Spine injury opens you up to developing it...it is NOT IN YOUR MIND. Biofeedback can help. The medications really don't :(


Hi Jamie. Thanks for sharing so much of your story with me. I know how difficult it is to tell the tale, so to speak! This is going to be a LONG post, so dont stress over reading the whole thing in one sitting! I don’t even know where to start, but I will give it my best shot…just remember, everything I explain to you is NOT medical advice, so much as it is simply the result of research…since I’ve had more than my fair share of time on my hands since 2004; learning about a new condition is easier for me because I have great resources to get info from (my medical textbooks, my doctors, etc).

So, you have: pain on the FRONT of shoulder…to the top of elbow through down the inside of arm, then I am assuming the top/inside of wrist (almost like a splitting/crushing feeling on the top of the wrist??). We will look at this first, b/c it seems to be the most similar to what I have going on, which is cervical radiculopathy. (Visithttp://www.healthscout.com/ency/68/518/main.html). Any spinal “radiculopathy” is simply a condition/problem with the nerve AT its root/core in the disc region, whether its being pinched, caught in a narrow canal space, bulging, or actually damaged in some way; radiulopathy is not uncommon. This TYPE of pain, EVEN though the actual condition/problem exists AT the vertebrae location of the nerve…the pain will show up in your extremities…as far away from the spine as you could imagine. SO, it seems like me…you have cervical radiculopathy. With that being said…

Having the TYPE of pain you are having…in the region extended along that part of your shoulder/arm/hand…is actually somewhat easy to explain. You did not mention if the pain is worse on the right or left arm; HOWEVER, let me make a wild guess and say that on your RIGHT arm, you are experiencing dull/sharp and even sometimes numb/tingling pain…down the inside of the right bicept (basically, the area of your upper arm that touches your chest/torso), then passes right through and around the “funny bone” of your right elbow, then the top/outer side of you forearm (the “half” of your forearm that is faced outwards…the side with your pinky finger), then…wild guess; the pain seems to go through the top/center of your right wrist, maybe into your middle finger and right ring finger?? I could be WAY off, but my guess is based on a few things: you have herniated disc material narrowing the canal space (possibly) at your T-1 on the RIGHT side…that would cause the pain in the distribution of the area I just described above. MORE IMPORTANT…the fact that you have a C-7 herniation is all too coincidental regarding radiculopathy, as the C-6 and C-7 locations are the MOST common for cervical radiculopathies…and the pain WILL extend outwards into the area of your shoulder/arm/hand that you’ve described.

Do you know WHAT disc is “bulging?” That may explain a LOT about your pain deficits, or the numbness/pain/lack of sensation you are getting down your body and especially in your torso.

Lets address that next: you wake up…feeling numbness in what would be called the “lower extremities,” or your legs, buttocks, hips, groin, feet. You also have right and left torso numbness…the strangest part being how it SWITCHES once you wake up. Then, there is the PAIN and NUMBNESS that you described as having in your hand/s at the SAME time (something like an electrical shock?). Your lower extremities can be explained by a number of things…especially considering how many vertebral issues you have in your C-spine; however, unless your cervical vertebrae were to the point of nearly disabling you (in an incredibly severe manner…much beyond what you already described), I am thinking those problems MAY be related to nerve compression/damage at a lower distribution of nerves, likely from your lumbar and sacral spine. Additionally, the torso numbness (something I wake up with EVERY single day, I know how frustrating that can be) has to be an issue related to thoracic spine compression/damage of some sort. Sorry to say, but it sounds like your whole spine needs to be addressed ASAP.

Having that electrical shock sensation at the same time you have numbness…well…that, to most people, sounds like its impossible. How do you NOT feel a part of your body, but at the same time, actually feel pain/strange sensations?? Well, it is not an uncommon condition, even though many doctors will “write it off” as being the result of an “emotional” expression of the overall pain in your body…doctors who TRULY know their stuff will tell you straight up…it is parathesthia. There are many forms of parasthesia…what you are experiencing (something my dad actually felt for the first time last week…due to neuralgia from shingles) is DEFINITELY the worst of the worst. I know, because for the past 5 years…THAT kind of pain is the stuff I fear the most. There are seemingly NO apparent triggers for it, it comes on without warning and does not leave until it damn well pleases to, and for the life of ME, I cannot figure out how to relieve it when it hits me. Its almost like you ARE going mentally nuts…because its so freaking hard to explain, it doesn’t even feel real half the time, and even though you are NUMB (and therefore should NOT feel anything), you are ALSO feeling PAIN!! What the #$@ is that about? Could you experience any worse of a punishment than to have NO feeling and THE WORST FEELING at the same time? I don’t think so.

When you speak with your doctor, to make the conversation CLEAR to him, so that he speaks CLEARLY to you (and for your benefit…so that he does not talk circles around you as if you know nothing and he knows everything…so that he doesn’t talk a “foreign language” that you cannot even figure out responses to)…

Explain that you are having EXACTLY that: numbness/lack of sensation while experiencing EXTREME sensations of electrical shock or uncomfortable BUZZING. Those are TELL TALE signs of your branch nerves being compressed and/or damaged. ALSO, tell him you are experiencing “HYPERSENSITIVITY.” When explaining the complete loss of sensation and/or pain you are having in your lower extremities, make sure you explain EXACTLY when it happens and what position your body was “resting in” for the longest period of time, JUST before the numbness/pain came on.

Next thing to address… you’ve been told you have a little bit of DDD. I wonder…when were you told that (what date…and after what type of diagnostic test)? I’ve been diagnosed with cervical DDD…without ANY MRIs to truly prove that the fluid inside my disc has leaked and weakened the disc body. If YOUR DDD was a FIRM diagnosis…the idea that you have just a “little bit of DDD” can become a REAL BIG ISSUE if its not treated IMMEDIATELY. I think that doctors use the term DDD all to frequently…its like ADD in a sense, when we first started seeing kids diagnosed with ADD/ADHD and being given Ritalin, it was in extreme cases and did have justification…but nowadays, it seems like if some parents’ kid is getting bad grades and doesn’t want to do their homework because they’d rather play Xbox, all of a sudden…”oh yes, he has ADD/ADHD without a doubt.” See what Im getting at? It is an OVERUSED diagnosis…and that is a DANGEROUS thing to do.

I DEFINITELY do not believe it was incorrect in your situation, simply based upon the severity of problems you have going on. What worries me is the LOCATION of your degenerated disc, the DATE it was diagnosed, the DEGREE (literal percentage% degree) to which it is degenerated, HOW it was diagnosed (MRI + Xray, myelogram, etc), and WHAT THE HELL they plan to do about it!! If it sounds like I have a personal interest in helping you out, that’s because I do…my wife had DDD in her L3-L4 disc. She was in a car accident around ’99-01 sometime (we did not get together until ’06)…had major back spasms, pains, then increased issues that grew into numbness and weakness, then even worse into complete loss of sensation and/or function of her lower extremities…to the point that when we first starting living together, she would get out of bed in the middle of the night to go to the bathroom and simply fall straight to the ground because neither one of her legs would move…she couldn’t feel them. Of course, once the feeling RETURNED, it was extremely painful. That scared the crap out of her, but even more out of me!! She had to BEG and practically SCREAM to FINALLY get Kaiser to perform an MRI (it only took them SIX freaking years of asking for an MRI to do one!), at which point they said: “Oh, you certainly have DDD and it has obviously progressed to a point where your ONLY option is surgical intervention by fusion or replacement.” They also had the NERVE to question her as to WHY she didn’t get an MRI sooner!! So, in late ’06, I was by her side for 4 days in Oakland Kaiser, then taking care of her for about 1.5 months while she was essentially on bedrest. She had a FULL disc replacement (with the NEW style disc…made completely out of a special lightweight metal alloy, rather than the old style made from a plastic composite that would break down 3-4X faster, requiring additional surgeries over the course of her lifetime). Since the replacement, almost a 180degree change! Of course, she still has problems that come on here and there…but with DDD, the BIGGEST problem (especially when it is left untreated) is that the DISCS nearby the most damaged DDD disc…can start STRESSING way more than they are meant to, sometimes giving way to bulges, ruptures, fractures, herniations, and eventually…DDD in them as well.

PLEASE make sure you get diagnostic testing to confirm the FULL disc health of your ENTIRE spine. They need to do MRIs and then a set of “positional X-RAYS” to determine the “spacing” between your discs. That is VITAL: if the space between the two vertebrae surrounding the disc they believe is degenerated is LESSENED or does not fall in line with the spacing of its neighboring discs, you may have some MAJOR problems at play. Think about it like a car window…easiest way to compare that I can think of. IF you stick your arm out of the window while riding along…just letting your arm swing in the wind, it feels great. Now, imagine you slowly start rolling the window up…just gradually for your entire trip, lets say a 4 hour drive. By the time you reach your destination, your arm will NOT be swinging in the wind, you will NOT feel great, and trust me, what you will be feeling is nothing but numbness and pain in your forearm/hand/fingers with a likely pinching feeling in your elbow. Imagine that window moving up as the SPACING between two of your vertebrae coming CLOSER together…why? Because, the disc that supports that space is filled with a jelly-like fluid that sustains the health, suspension, flexion, and stress of your entire spine. EACH disc in your spine relieves stress from the discs adjacent to it…it’s a VERY amazing system that ONLY functions well when the FLUID is present, healthy, and accounted for!! When a disc bulges, herniates, is damaged or ruptured somehow, that fluid…will leak out, will kind of decompose (not literally, but in a way, it somehow loses life), and the disc body will weaken…allowing the vertebrae above and below to compress together. The DISC itself is not responsible for the pain…it is your distribution from the nerve bundle. Compare that distributed nerve to your ARM sticking out of the car window. If you arm reaching out of the car window represents the nerves coming out of your L3-L4 disc space in your spine…DDD is essentially like having that window close on your arm causing numbness/pain…the same thing...now in your spine, that compression will cause numbness/pain/weakness/potential paralysis in the regions where those nerve distribute to.

In your situation, I am seeing the possibility that you have compression issues in your T-spine (no idea where…could be your T-7 all the way to T-12) and definitely in your lumbar spine, likely the L1-L3 regions.

Next thing…you have two conditions diagnosed that you’ve never heard of. I hope that you KNOW about them!! If you’ve never heard of them, simply because the doctor told you that you have them and it was news to you…but he explained what they were…that is fine. If the doctor told you that you have cervical lordosis and retrolesthesis (that is the way its spelled…had to look it up!), but didn’t explain what either one meant…that definitely IS NOT OKAY. Im not pointing blame at you…I’ve been down this path before…having doctors tell me what condition I have, yet they don’t bother explaining a damn thing about it. Even when you ask, sometimes (if they even bother) their answer is SO FREAKING CONFUSING (because they either make it that way automatically, they have a poor bedside manner, or they want to belittle you and make you think you know NOTHING and they know it all). There are AMAZING doctors out there, but not all of them have the ability to work personably with patients.

So, cervical lordosis. You know how your cervical spine/neck Is SUPPOSED to have a “C” shape to it? Its supposed to have a C-type curvature from the C1-C7 vertebrae. That is NORMAL. With cervical lordosis, you have more of a pronounced STRAIGHTENED neck/C-spine…almost as if your head is sticking out forwards. Do you find yourself with cramps/spasms in you lower neck/shoulders and in your upper neck/base of skull? Do you find that you naturally look DOWN at lot easier than if you are supposed to be looking straight ahead? If someone asked you to stand STRAIGHT, with your chest forwards, your abdomen straightened, and your head UPRIGHT and facing directly forwards…does it seem VERY unnatural for you to do that? If so, I am imagining the most unnatural part of that request is to keep your head upright and looking directly forwards. I have the SAME problem (not the diagnosis)…where I have massive pain if I have to stand upright looking forwards. It is easier to have my head “slouched” so that my neck seems crinked forwards. The unusual thing about this…you would think that with your neck bent forwards all the time as if you are looking down, that would mean you have an unnatural curve forwards…the reality is different. Your natural neck curve is the opposite way, so what you have is essentially a VERY STRAIGHT cervical spine. This is DANGEROUS, especially if you were to have any type of trauma to the head/neck…it could be permanently paralyzing.

Retrolethesis is somewhat easy to explain. Imagine looking at an XRAY of your spine from the side…you should EXPECT to see a healthy spine have EVERY vertebrae lined up perfectly, even though there is an “S” curve to the whole spine. IF you see one vertebrae that seems like its “shifted” slightly forwards or backwards…or if it looks like its maybe angled in too tight and shifted up/out, the likely reason is retrolethesis. This is NOT something to be taken lightly. I truly hope that this diagnosis was made by a FIRM confirmation with diagnostic studies, because doctors cannot be scaring you with info like this if they don’t know FOR SURE that you have it. Can you find out WHAT vertebrae/s is affected? Non-surgical intervention (chiropractic, nutritional, electrical stim/current therapy, etc) are usually preferred to treat this, but you need to determine (ASK YOUR DOCTOR TO FIND OUT) what “GRADE” retrolethesis you have. This will be your guide to the degree of severity that this condition is really in. You have NO TIME TO WASTE on treating this!! Your doctors NEED to address this as if it was supposed to be repaired last year!

You should ask your doctors for advice on NUTRITION for spine health and particularly, for disc and spinal tissue health. Also, ask your doctor (if you are NOT already on one and as long as you can tolerate one and have no allergies) for him to prescribe some type of muscle relaxant. You are OBVIOUSLY having back spasms, whether you think so or not. When you have as MANY problems as you’ve listed off, I would put down some HEAVY DUTY $$ to bet that you are having almost constant back spasms. WHY? Well, put it this way, I have 24 hour back spasms, so bad; I’ve started to not even notice they are there. I live with them…and the effect of the spasms is overwhelming…it causes so many problems that we do not even realize. I take 2mg Valium…it is a lighter dose that is able to relieve the spasm (to the point where, about 1-2hours after taking my afternoon dose, I will have a SUPER LOUD CRACK come from the right side of my neck…it is literally the right neck muscles alleviating from the spasm, allowing my cervical spine to snap back upright…or somewhat upright!)…but that light dose also allows me to FUNCTION and care for my baby without being drowsy or incapacitated.

YOU NEED spasm control (by taking a muscle relaxant/benzo of some sort, by having physical therapy and traction, and through proper nutrition…which takes TIME to have an effect, but a POSITIVE ONE!). Eat your bananas, because they certainly help fight against spasms!

Alright Jamie, last but not least…the peeing issue!! I know EXACTLY what you are feeling, so don’t think you’re going crazy!! I would be willing to bet this has absolutely NOTHING to do with a UTI or any renal/bladder/urinary tract problems. In fact, I am almost POSITIVE, based on the simple yet very specific way you described the symptoms…you are dealing with “Autonomic Neuropathy.” AN/Autonomic neuropathy is basically a type of neuropathy (nerve pain/disorder/dysfunction) that happens when the brain’s communication with certain bodily/system functions is disrupted temporarily or when that “channel” is being blocked and therefore, does not function properly.

With you, it seems obvious…you are having the SENSATION to pee, without the pressure to pee. Ask yourself, how the hell does that happen? A UTI would be much different…because you WOULD have the pressure to pee, but you may have difficulty with emptying your bladder and/or pain/burning when emptying. With autonomic neuropathy, you will have MIXED signals from your brain to your bladder/urinary control system. Your brain tells you its time to go, when you are laying down. Then when you get up…when your SPINE changes alignment…you suddenly don’t have that same sensation, but you have the ultimate urge to go, with no ability to force pressure. This is ALL TOO COMMON amongst people with severe spinal cord injury or injury to the nerves around the lower T-spine, upper L-spine, and sacral spine. I’ve been battling this for years…I KNOW I have to pee…because DAMN, I just drank 5 glasses of water in the past 12 hours and have not gone to the bathroom successfully ONCE!! I will have a distended bladder, feel the urge to pee, but it seems like the “valve” to release has been turned off. I don’t feel like I am going to “lose control” of being able to pee and/or being able to stop peeing, no…I just feel like I am not in control of WHEN I get to pee and FULLY empty my bladder!! Does that sound familiar?

When I see my pain management doctor each month…recently, each week…I have to fill out a large “intake form” that reviews any new issues, overviews my pain/symptoms, outlines the location of pain, lists medicines and benefits, and answers multiple questions. Some of the most important questions on there are at the bottom: 2 of them. #1-Do you have constipation and #2-do you have excessive sweating? Constipation can come from almost any pain medicine and many other types of RX meds, so its really not a tell tale sign…but loss of bladder control, incontinence, etc…all signs that an autonomic problem exists. The sweating…that is a DIRECT sign of autonomic neuropathy. The “system” in the human body that controls sweating…is oftentimes disrupted by an autonomic neuropathy, therefore; you will sweat out of control for no reason OR you may not sweat at all. FOR YOU…this problem with peeing seems to indicate that SOMEWHERE along the distribution of nerves from your spine, you are experiencing unusual compression or damage, in turn; causing you to have an inability to actually pee when it SHOULD happen. I’d be willing to bet…BUT DON’T TRY THIS!!!...when you have the feeling like you have to pee and could pee, when you’re lying down in bed: if you did NOT get up to go pee and instead, just PEE in bed, I BET…you would be able to pee and fully relieve your bladder!! Sounds like something I don’t think Monty would want to wake up to!! Trust me, neither would I. The point is…if you could pee without problems while laying down, the moment you get the urge to go…but you CANNOT pee successfully when you actually get up and go to the bathroom…SOMETHING happened in between laying down and being in the bathroom!! The easiest explanation: your spine changed position…you went from being in a relaxed/somewhat supported supine state…to having vertical compression…AND, since girls sit (while we boys stand ;), the action of sitting down MAY be causing some sacral and/or lumbar nerve compression that could explain your autonomic symptoms. But what do I know…Im just a guy who has trouble peeing half the time too!!

Anyway…lots of info for you to review. Sorry its so long, but I don’t see any reason why you should be trying to look for a needle in a haystack, IN THE DARK…because if your doctors don’t tell you whats up, you HAVE to find someone who will. I hope your doctor appointment went well. Be sure to STAY ON TOP of your doctors ALL THE TIME. They may not like the pressure, they may not like the phone calls, and they sometimes REALLY DON’T LIKE it when you show up after having RESEARCHED the diagnosis they gave you…but listen: its THEIR DUTY to treat you and do so in your best interests. It doesn’t matter if you are a convicted murderer or a 2 year old baby girl…doctors take an OATH to treat without prejudice (obviously, that is BS…because prejudicial treatment exists EVERYWHERE we look). Point is: you are the one in power…let them KNOW that. Its not as if you are DEMANDING they open up your spine and put a bunch of metal rods in there…NO…before ANY surgical ideas even come CLOSE to the table, your doctors NEED to provide you with AS MANY NON-invasive/surgical options as possible…and they need to ensure those options have GOOD success histories and are as SAFE as possible. Trust me, with 9 major operations in just under 5 years, with countless procedures, endless medications, and a whole list of crazy “off-label” treatments…I’ve been a guinea pig for many doctors (but didn’t realize it until their treatments FAILED drastically and then they just PASSED me onto the next doctor, rather than figure out where to go on their own. YOU, and ONLY you…decide whats best for YOU. A doctor is NOT a decision maker…so much as he is a TREATMENT OPTION PROVIDER. NEVER let them tell you there is NO HOPE, NO other OPTIONS for treatment, or that there is nothing else they can do. Do you know how many doctors have told me that there are NO treatment options left for me…before I went through 5-6 new therapies? OR…how about this…doctors telling me that there is NOTHING else they can do for me…but then a few months later, they are trying something new??!? Keep yourself in charge, but calm…let them SEE your pain, but don’t let them control your pain. Keep in mind that the medical industry got rich and STAYS rich because they TREAT the problem, rather than attempt to CURE it…and they provide treatment for issues AFTER they’ve occurred, rather than try to PREVENT those things from occurring to begin with!! Try to get your doctor to bring in OTHER doctors onto your case…remind your doctor that this is YOUR LIFE at stake…AND…the people who care about you.

Without that simple amount of compassion…if your doctor cannot prove he means business and is ready/willing to do whatever it takes to get you back to full health or as close as possible…you MUST make tough choices: stay with that doc or seek out a new one!! Its hard, so don’t ever be afraid to ask for help. You just posted to this site and already have help flowing in your direction!! Let me know how things go…I hope you and Monty have all the time in the world to enjoy together, because I know that without someone there who cares, it gets VERY challenging!! I pray everything works out well…just be sure to ask any questions BEFORE you jump into any new treatment, sound good?



I wanted to post this one to Christi :). Thanks for providing some input to Monty/Jamie that I haven't even dived into yet. I went through Biofeedback for a number of months, but the WC insurer denied to pay for it, so the pain clinic denied to see me unless I put up $300/visit...and they wanted me in 3X/week. SURE...I have a money tree in the backyard, let me go harvest from it!!

Biofeedback is an excellent way to relieve stress, tension, and mentally release your nervous system...even if just for a few hours. The problem with biofeedback is that...like you said, insurance does not pay for it, but also...it HAS to be performed by a psychiatrist/psychologist who understands exactly how to put you at ease and it has to be done in an ABSOLUTELY quiet location. The office I was at...well, they had construction going on next door...so you get the point! Another downside to biofeedback is if you are experiencing muscle spasms. For Jamie, it would seem as if the muscle spasms are SO bad, she would HAVE to get relief from them prior to a session of biofeedback, simply to even benefit from it.

Yoga absolutely works, but only if your spine is healthy in its form. You can have some compression issues and do lighter style yoga or alternative yoga, but with cervical lordosis and retrolesthesis, Jamie...your spine is NOT even in proper alignment...in fact, you have one/two vertebrae that are actually shifted. The potential for injury from even a small fall or unnatural tweak...is major. In all reality, should you get everything under control without surgery, I WOULD recommend entering into light yoga practice every day, but be cautious...seek out a person who teaches yoga for individuals WITH spinal disorders/conditions.

Fibromyalgia could definitely explain a lot of what Jamie is going through; however, the diagnosis' she already has of DDD, herniation, bulged disc, cervical lordosis, and retrolesthesis...all point to something sinister going on throughout her spine. Fibromyalgia is a nervous system condition...unrelated to actual spinal column damage...its etiology is somewhat hard to explain and doctors still do not have a lot of answers as to WHY fibromyalgia even exists. I've heard it explained as a hereditary/genetic problem, a result of nerve injury, a result of a sickness/viral infection/bacterial infection that caused vast nervous system damage, etc. What I DO KNOW...fibromyalgia is the work of something evil...basically, a non-stop firing of nerve synapses relaying "pain" messages to the brain. I liken it to a CD playing properly, then all of a sudden, it just keeps skipping and skipping. If fibromyalgia was the skipping CD and your body was the CD player...then doctors trying to find the problem and treat it is as likely as you trying to find that CD player in the midst of a dump truck's contents...it is like going in blind. Fibromyalgia is also similar to "phantom" pain that people experience after losing a limb...the pain/numbness and sensation of that limb STILL exists, when in all reality...NOTHING should be felt. But with fibromyalgia, those pain signals just KEEP FIRING and stop ONLY when they chose to. You can treat it pharmacologically with anti-epileptics, tricyclic antidepressants, and sometimes with narcotic pain meds, but the anti-epileptic/seizure meds are generally the only successful methods (like neurontin, tryleptal, lyrica, etc). I understand what you are saying...Christi, about not advising surgery or medications. Hey, I was in that same boat for years...I avoided EVERYTHING like that, knowing that it all had the potential to harm me more than help. Unfortunately, once the problems go to an absolutely UNMANAGEABLE point of no return, I had to resort to unfortunately STRONG and INVASIVE options. There ARE medications that can help and have FAR less severe side effects than most others. That is why I'd recommend Jamie looks out for a spasms controlling/preventing med, but ALSO...nutritionally, eating/supplementing her diet so that the spasms are controlled naturally.

What Christi said about Board Certified Surgeons is true...but beware...board certification doesn't automatically make a surgeon a winner. It IS a must, but look at me: my first 3 surgeries...ALL botched (and you read about my third surgery, performed by a board certified surgeon who had NEVER done that procedure before in her lifetime)...my LAST operation (in 2009...spinal cord stim battery implanted in open incision-upper right buttock, lead wire channeled under my skin and up the side of my spine to my T-11, laminectomy/laminotomy, paddle lead placement @ T11)...well, put it this way:

I had the operation...everything went "fine" according to the doctor. Months later, began to have severe positional headaches, soon followed by paralysis attacks. CALL the surgeon to go in and see whats wrong...he REFUSES to see me, not providing any reason. I call AGAIN...no response. I even ask MY doctor, who has referred me to the surgeon...my doc says there is NO way that he is gonna "touch" this situation. Then, a few months later, I find out that about the time I had experienced the paralysis attacks and been CALLING my surgeon who refused to see me...was the SAME time when the paddle lead he implanted in my spine was RECALLED. Why? "For causing autonomic symptoms and paralysis in rare cases." So, WHY would a surgeon be afraid to "touch" my condition if he did not have something to hide? You can ask those questions til you are blue in the face, but the reality is this: NEVER TRUST ANYONE WITH A SCALPEL. Surgeons do NOT deserve your trust to operate on you...THEY MUST EARN YOUR TRUST. So YES, make sure they are board certified, but consider what happened with me to be a reflection upon what "kind" of people are out there: out of 9 operations, a total of 6 different board certified surgeons...2 of them I would NEVER recommend to my worst enemy. That is a 1 out of 3 chance (in my case) that I ended up with a BAD surgeon. Trust me, in certain situations, the chances get MUCH WORSE!!

As humans, we have an AMAZING structure/system at work...our body. Unfortunately, it is BECAUSE of our amazing minds that we've developed such destructive forms of "medicinal care." The ONLY alternative medicinal applications I EVER USED or EVER WILL use are terpenoids and cannabinoids (basically, aromatic oils...essential oils...and the resinous oils of cannabis glands). I've done cannabis research and development projects for the past 4-5 years, successfully helping over 3 dozen patients; ranging from HIV+ to fibromyalgia, migraines to PMDD, PHN to Stage IV cancer, and beyond. Although cannabis is the MOST widely and most often studied compound on the FACE of this PLANET, even though cannabis' medicinal benefits have proven SO AMAZING that it should be the #1 medical treatment tool for almost ANY disorder, even though humans are the ONLY living creature to have CANNABINOID RECEPTORS built into our body's systems (something that we were DESIGNED to interact with), although cannabis has NEVER killed anyone from an overdose in the history of humankind, and even though cannabis has CURED more cancer than chemotherapy (percentage wise)...it is DEMONIZED as much as humanly possible. Hey, I respect everybody's opinion...I respect that politicians try to "Fight" the war on drugs because of the damage it causes to society (when ABUSED and MISUSED, and when it is the result of cartel smuggling)...but it is VERY hard to watch people SUFFERING, when I have seen people RECOVER to complete health...become CANCER FREE..simply by utilizing simple, non invasive, and absolutely functional treatment/therapy with cannabis. I do not promote smoking of cannabis...I really do not promote any traditional methods of ingesting it; rather, I developed specialized sub-lingual methods of ingestion, topical applications, medical vaporization/aromatherapeutic application, fresh plant juicing, and trigger point application. (visit my site @www.wix.com/djbds2/epsilon) The sad fact now...in California...the US Attorney's office has ordered ALL cannabis collectives/dispensaries to shut down in the next 45 days. They are coming in hot and heavy, taking away ALL patient access to medicine, only afterwards, to INTRODUCE their FEDERAL approach to medical cannabis...which is? They grow it, they control what you get, how you get it, when you get it, and they set the DOLLAR amount as high as they want...PLUS, they are rescheduling THC to Sched III, so that BIG PHARMACEUTICAL companies can develop incredible medicines to TREAT people, rather than CURE them...while they keep WHOLE plant cannabis at Sched I, which means that if you are caught growing it, you go to FEDERAL PRISON. Its criminal at best!! So for Monty and Jamie, I'd say...depending upon which state you live in, I would HIGHLY recommend cannabis as an adjunct therapy to help out with pain, but ESPECIALLY with inflammation (which is the ROOT problem that EVERY condition/illness/injury starts out with. Lemme know what state you are in, so I can update you on the status of medical cannabis and what your best options are.

One last thing...I know that this post was started by Monty...and it was not until yesterday...maybe even this morning, did I realize that I was responding in length to Jamie!! I am glad that I got to address Jamie's issues in full, but I would also like to talk to you Monty...about what is going on in your spine. It would seem that you have some SERIOUS issues, but you are obviously stuck with doctors who either have NO clue what to do, what is going on, or they simply GAVE UP. That HAS to change, but in order to change it...YOU need to go in to see your doctor with some AMMUNITION.

A few quick questions for you...if you've had fusions, I am assuming you have metal in your spine, right? If that is the case, then an MRI of your lumbar spine is NOT an option, unless you want that metal in your C-spine to heat up like a hot knife through butter! SO, what to do? IF 2.5 years ago, you had THREE bulging Lumbar discs...then DAMN: you NEED help NOW. One thing Ive learned about dealing with the medical system is that if you do NOT AMPLIFY your complaints, if you do NOT exaggerate your symptoms, sometimes...doctors wont even pay any attention to you. Of course, sometimes, exaggeration of symptoms will just make them say you are BS'ing them. In your case, because you HAVE a history of spinal conditions/surgeries, they HAVE to take you seriously. I think a MYELOGRAM might explain some of the problems you are experiencing, even if its just to determine if those 3 discs have ruptured, TRUST ME, you NEED to know. Like I explained to Jamie...it took 6 years for my wife to get an MRI done, at which point, it was TOO LATE...they HAD to replace her disc.

With you, having the symptoms you are explaining...I think you may be experiencing the start of progressive DDD in your lumbar spine. Do not discount fibromyalgia, as it does tend to affect the regions you have major problems in...but MAKE sure that your doctor gives you FIRM answers that can be VALIDATED by testing. Anything less is speculation.

Also, if you let me know what kind of diet they wanted you to go on...I can help out. I worked in culinary arts since '94, graduated from the Culinary Institute of America, and I worked quite a bit with food Nutrition and Safety. Since I started my cannabis research around 2006, I also incorporated essential oils and edible therapeutic oils into the mix. Additionally, I've studied several exotic herbs/plants that have EXTREME anti-inflammatory properties. A simple blueberry has more anti-inflammatory properties than a damn pill of ibuprophen...but, blueberries are MORE EXPENSIVE!! Go figure, right?

In any case, if you let me know what they specified your diet should contain, I can help out to push you in a direction with a diet that is AFFORDABLE. Trust me; supporting my wife and baby girl when only ONE of us has a steady income and when I live on SSDI...we HAVE to be economical when shopping for food. I can definitely point out what you should and should not be eating, because everyone's body is slightly different, you may require some new approaches!!

Best wishes to you all!


WOW! Thank you guys for responding... there is so much information here and it took me so long to read that I'm going to have to take a break and get back to you with more detailed information. I do not type good/fast and looking down at the keys are killing me! Unfortunately, I can't sit for too long at the computer because of the pain.... I'll be back again soon and again, THANK YOU!


Hi; A history of pain like yours is a sometimes hard for other people to believe, but I personaly know what you are going through because it happened to me for over twelve years I went to different doctors and their answer to my pain was that I had to learn to live with the pain which was lumbar and cervical. One day I said there has to be a good doctor that can refer my case to a good neurosurgeon and I met Dr. Caceres a real dedicated Family Specialist who took in his hands my case, today I can move around almost like before I was operated by a good neurosurgeon ln my country which is Puerto Rico. But dear friend there is a place in Tampa Florida that treats all this back and neck problems their name is Laser Spine Institute, I recomend you to give them a call or look them up in the Internet I am sure they will help you! Wish you Lots of Luck!!!!!


Thanks so much David, U did hit so many thgs on the head!!! Whats the sad part about it, is when u ask a Primary witch is still a Dr they are so dumbfounded to my condition. Witch leaves me a lilttle mad at them!! Like bc they have no knowledge of it, its not true!! I so wish I could hand over the meds and pain to them, and I know for a fact they would hand it back to me!! Just so they could have a better understanding of what I have to go though on a daily basis. Did have the best of luck w the Primary, so I am hoping that the neuro apt goes better. I know about these things going on w my back from a MRI done on my cervical spine and Xray as well. However have not been to a Dr that knows anythg about my condition. So I myself tried to goolge some of the things the report said, but didnt fully understand. And the ER DR did a xray and told me I had DDD, and my oldest sister has it as well. Once I told the primary about the results thats when he had the MRI done. And that was on Aug,3. He called me to talk about them and only mention a bulging disc, and having surgery. Since then everthg was a stand still, and was totally on me to seek out State Ins, and go to the DR that can actually treat me. I appiled on Aug 16 and got my FIRST APT W PRIMARY on Oct 10, and neuro on Nov 1!! So in the mean time I used the ER insead of him bc he was not able to write anythg that relieved my pain. I felt like why take somethg just to take it? If theres no benifit Id rather not. I told him about the pain in March and we tryed alot of over the counter stuff and felxier. I was taking 600mg of advil 3 times a day. And with each flare up it became worst. Then for about 2 months he put me on Ultam witch I hated the side effects. I would NOT eat, had no desire too, and had a hard time sleeping. And it worked better when I first stared it, and when I had flare up pain it could not TOUCH the pain. So I stopped seeing him all together, and would use the ER. And sure in 3 months I went quite a bit but had no DR that I could see and help. I expained to the new dr the WHOLE SITUATION. I have ER discharge papers and every script I got,and even my blood pressures sky rocking and pulse. So I asked her what is a person to do in my case?? Sit in UNBEARBLE PAIN, high blood presurres and pulse?? Sure you have a Dr who cant give you anythg that works bc you have been doing this for MONTHS and its no longer working bc I have gotten everythg I can out of Advil, Tyelon,and Aleve? Lady what in the Hell was I suppost to do?? Trust me I have better things to do then sit around and take 100 advils in two weeks!!! And now it makes my stomach hurt so bad it wakes me up, with diarehha, swollen hands and face. Like I truely believe they have messed up my kindeys. I get this side pain right above my hip, from front to back when i take them. I have normal blood pressure, and when Im in pain it shoots up, my last blood presurre was 152/116!! My pulse was 127. I will be so glad to get to a DR who can answer a question HONESTLY.. I hope my hopes are not too high, since I see so much discouraging info about them, and how DR treat people. The worst feeling in the world though all of this is, they know I need help, I am crying out for help and answers, but I just get iggnored bc I dont have ins. Knowing somethg is really wrong w u, and unable to get the help feels like it should be against the LAW. My WHOLE BODY is going out of wack bc of pain, and you are afraid to write me a perciption due to my ER visits, and your JOB basically. Make me super upset. And I have had no other real heath issues and dont even see a DR regulary. So ;let me guess its all in my head right?? Makes u wanna slap the shit out them!!! Bc they messed up, I have to pay?? Well thanks for thinking of me and taking the time out to expain to me, its grately appreciated.. I will let u know how the neuro apt goes. And I wrote down all my questions clearly, so I can get some answers hopefully:)