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What is Right What is Wrong What is Unkown

dilaurodilauro ConnecticutPosts: 9,863
edited 06/11/2012 - 8:44 AM in Depression and Coping
I believe that any spinal patient has been to enough specialist to understand what their problem is and what needs to be done to try to correct that.

But , just reading so many posts, there seems to be many members who's doctor for whatever reason did not want to treat them, told them they were not surgical candidates or basically pushed them aside. Where do these patients turn to?

Then, to me the worst is those that no one can tell them what is happening. You know you are in pain and you want help, but there doesnt seem to be any coming on the horizon.
What do you now do?

I think as a community here, we try to work with members that are being frustrated by their doctors not seeming to want to help and those that offer no advice.

Left alone with that can put an enormous strain on anyone.
We cant fix this here, but we can sure listen
Ron DiLauro Spine-Health System Administrator
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com


  • I've seen too many who've been in the situation you just talked about. I'm lucky - my surgeon is my best advocate and he and my PA have had a great surgeon/doctor/PM/physio/PT relationship for over two years now.

    Our collective experiences can help lead someone in a different and more effective direction. And to have the support of those that understand what you're going through is priceless. Too may people feel alone with spine problems because nobody but another spiney can understand what it's like and they find camaraderie, acceptance and support here.

    Great post, Ron.
  • I must say that my Primary Dr. does listen to me and treats me with medications and will go for any referral that I offer for a Orthopedic or Neurosurgeon. I have been told no to surgery so far by 3 Spine Surgeons. I found another Surgeon through a friend and will be going to him next. No to surgery but yet it's been over 2-1/2 years with disabling back pain. I know surgery can't help everyone but how long does one have to wait before they get surgery? How many injections do I have to get? I've had over a 100 trigger point injections now going for my 8th epidural, facet joint injections, SI and hip injections. PT,acupuncture,traction, now aqua therapy.

    I heard this Surgeon I'm going to see goes in and shaves off any bone spurs and looks to see what else is causing the problems and fixes your spine whether it's a laminectomy, disectomy or fusion. Has anyone recovered really from waiting 3 years of back pain? Thanks for listening. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • dilaurodilauro ConnecticutPosts: 9,863
    Charry, I dont think I would have the stamina you have displayed all along ti keep up with this.
    At some point, you want a decision to be made, to move forward with an action plan, could be aggressive, but at least a plan.

    But still, just having to deal with the daily pain and not seeing anything coming up to correct this! You are a strong woman.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Howdy Ron!!! :-)

    Not brushed aside yet of course, but my NS is now (self admitted) "clueless" as to what is now going on with me except to tell me I have chronic "moderate to severe" Peripheral Neuropathy now in my right arm (severe level) and both legs (moderate) - the main issue - surgery on hold until "they" can find what has caused this?!? For what I read of "Neuropathy" I am not happy. I do know that so far, I don't have many of the "disease" triggers to get it...but how bad is it gonna get? Are they going to figure it out? My NS has referred me to a Neurologist (who is also a surgeon by the way) who specializes in this issue, and too specializes more on issues "away from the spine" than most of the Neuro's we encounter.

    In keeping with your post, mine is now (coining the show) a "mystery diagnosis!!" Sigh... I am retired as of the 22nd, but since I had leave on the books, I started it today. I have found that when I am not driving all over the place, can move (lay down, walk, sit) without restriction I do a bit better - but in the back of the ole brain...why? Thanks for listening. I am going from what I think was a strong type to a whiner of late...sniff...

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Ron you are right about the people who get no help or very little. It is so sad to see another spiney not get any help or ideas on what is going on with their spine. When the doctors just say you have this and go on with your life but don't give you any help with the pain is just so wrong. I do not disagree that some can not have surgery because of what is actually going on with their spine. The ones that can have surgery but do not get help need a better plan put together for help. When the doctor doesn`t do this then that doctor should be referring them to a pain management doctor at least. I personally know it is very heart breaking to have a doctor say you need surgery but I am not going to do it until you can`t feel your legs then sent me on my way. Then I have a friend here on spine health that the doctors haven`t been able to tell her what is actually happening with her spine. They just keep sending for test upon test with no real answers. There needs to be a better way for us all to get help when needed.

    Good luck Charry with the new doctor I hope you finally get some help besides for shots. You are a strong woman and I hope you stay that way. Keep us posted on the outcome please.

  • Interesting thread Ron.

    I've beem laying on the couch most of the last 2 days in complete agony thinking this cannot be as good as it gets. Just because I tried to put a few things in the ground this weekend doesn't mean I should have to suffer like this.

    So I'm laying here with my laptop thinking "you have to stop pouting." "Time to find a different angle here." (Yeah, I talk to myself all the time.)

    I've been to so many doctors and surgeons and I'm no closer now then when I started. If one more doctor tells me they can't see anything wrong I may have to just go back to seriously abusing my back until it's downright visable.

    I decided to go back and read my extremely long thread that I had started a hundred years ago, and just kept adding to. (Now I'm exaggerating.) It took me forever because it's so stinking long. I was looking for some hints. Something I may have missed. A suggestion I hadn't tried. Something! Anything! I also knew that I would find where so many people had encouraged me and said "don't give up."

    Those words of encouragement were all there right where I knew they would be. (Along with all the reminders of all the stuff I've tried.)

    I finished reading the thread, returned to the top of the page clicked on view recent post and darned if this one wasn't right on top.

    Incredible timing.
  • Up until last year I lead a very healthy life. But I had dealt with numerous injuries of my husband and kids. I'm pretty good at organizing information and getting to the right people. 25 years in business has taught me the tricks to getting results and not accepting no as the answer. Many times I have thought that there is a niche job in there some where. How many people just don't have the skills to do this?

    Well this past year has taught me that it is easier to help others than it is to help myself. When my family is hurt I know who to call and make all the arrangements. Sometimes I think I scare them with my organization and often my husband will tell me I'm rushing him.

    Now that I am the one needing help I find myself lost. I was lucky to find this site right after my first surgery and before I dove into the sea of neurology and spine surgery. Even with all the help and info I found here I was still lost when I had to make decisions about my care. Today I still second guess what I think I need to do. My family is no help since they are used to me caring for them. My husband thinks the surgery is over so all is fine.

    Some of us are lucky to have someone who acts as our health care advocate. It might be a spouse or a GP or a favored neuro, ortho, surgeon or PM. But I don't think there is anyone here who can honestly say they can do this all on their own. When there is no one we can reach out and touch this site can fill in some of the blanks.

    I know I can never repay what this site has done for me. I can only try to pay it forward by helping others through my experiences.
  • dilaurodilauro ConnecticutPosts: 9,863
    We need to be our medical advocate and do whatever it takes to get results.

    I dont think there is anything harder to take that when you are in pain and discomfort and your doctor tells you , "Well , I dont see why you should be in pain and the tests doent show anything!"

    My response to that is, for the doctor to continue looking and testing to see what could be wrong. Sure, there are those that just what to whine and complain. But there are so many other legitimate folks that have problems and have no answers

    That is the hardest thing I believe we have to go through. We know what we feel like, but there are no answers.

    Is it in our heads? Maybe for some it could be. But even then , the doctors would recommend a course of action.

    In every situation, the doctor(s) should tell us what can be done, what can not be done and how we are suppose to live live in between.

    I think of you Charry, Bigcat90 and a few others that are in pain and are suffering, but to date, the doctors have not offered any action to remedy this.

    That has to be so difficult to take...
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • In our heads? For some maybe but for most not.
    And, even if it is in our heads...that's something that can be diagnosed.

    I like this post. I don't think it's that doctors don't want to help but more that that don't know how to help or statistically think that surgery could do more damage than good. They are humans too.

    I agree that being your own advocate is so important. I learned that from my Mom (a nurse) a long time ago and it came true when she was dying of Cancer. Since that day, I knew for sure that having yourself, writing things down, asking questions, bringing a trusted friend or famiy member to an appointment is so important.

    I try to offer my confidential hep to others that may need that 2nd person or set of eyes.

    This site has been very supportive, in general, and I'm thankful b/c it's nice to have people that can really offer another "view" on things.
  • the last time i took my Mri into a surgeon he said i was not a canidate for surgery and had me out the door so quick my head was spinning. he also cut off my pain medications.. that hurt!! he had been treating me for quite some time based on my symptoms, a cat scan and a nerve test... he had also done my first surgery. he felt all those tests led up to another ruptured disc. when that was not there on the MRI, well, i was out!!!!fortunatly, i now have a pain doctor who treats my symptoms and i don't go look for a surgeon anymore. i have given up! to all of you still looking, good luck! Jenny :)
  • i just had to throw my 2 cents in here. i had a convo with my pm doc who i have an ongoing relationship with for about 7 yrs. he told me its harder and harder for him to accept new patients as he has to weed out drug seekers and crazies. those were his words. he also said the govt is constantly questioning his prescription practices, even though he also pm cancer patients. his main concern seemed to be what is going to happen once this new health care system is in place. he feels he will be inundated with patients, and will no longer be able to provide the quality of service he has due to massive amounts of people. i guess we dont all see the flip side of the coin. docs got their problems too.
  • Ron, thanks for this topic. 2 years ago I was hurt at work. It was such a fluke. April Fool's day my foot founf the only piece of ice in the packing lot, I fell on my butt and ever since I have been in pain. My MRI shows an annular tear (shouldn't cause pain) and a partially fused extra vertabre directly below. According to my doc and the WCB doc (the source of my issues) it souldn't cause pain.

    It has been so frustrating. I am in Canada, so I have good health care (was great when I had cancer). But since this happened at work, my public health care does not cover me. It WCB, which is insurance for companies for when an employee gets hurt at work. If they don't approve it, no go. And since i can work (my company is really good), they won't do anything. It costs nothing for them to deny (pain killers are inly paid for 12 weeks) and they don't copensate for the quality of life difference. My Dr doesn't/can't do anything b/c of WCB.

    So I am stuck living in pain. What scares me is that my pain is spreading/getting worse - but i can still manage to work so noe one cares. I still am having problems dealing with this. I was brought up beliving I had universal/public health care. Only to find out that when it happens at work - i don'y have it.

    I wish that I had lied, and said that it happened at home. Even if I sued, the maximum i could recover would be 5500, less han lawyer fees.

    Ok feel a bit better now. Thanks again Ron.
  • This is a timely thread. Thanks for starting it Ron. I came to this side of the forum to post about my frustrations and compare notes. From this thread, I can see it is a prevalent problem. In my case, it is a work injury which resulted in pain which follows the C5C6 and C6C7 pattern. My MRI shows bulges on both -- top one is "mild" C6C7 is listed as "medium". That was almost a year ago and after treatment that should have taken a couple of months to complete, I am still looking for someone to tell me exactly what needs to be done. With all the WC insurance people and designated doctors, it seems I am not believed. With my NS, he believes me but isn't yet convinced I am a surgical candidate. Sometimes I tell myself the skeptics are right, suck it up and ignore the pain. That doesn't last long before I am once again frustrated and wanting some real answers and direction. I HATE the idea of people thinking it is all in my head. AND, like stated several times above, if it were it is still no less of an issue that should be treated.

    This is a very, very frustrating possess and I am thankful for this forum to at least help vent about it. Hopefully the next round of tests will give my NS the info he needs and I can tell the WC people to jump off the nearest cliff ;-) I just want my life back and if I can't have that, I want to know that I will have so I can move forward.
  • Ron,
    Knowledge and understanding here are given with the desire to improve and we all have to find what works for us and use that until we develop something more appropriate. We should not blame ourselves for not knowing and many people here are on the journey and never reach any satisfactory conclusion.

    It was an act of kindness for my professor to say that surgery was not an option and would impart more problems than doing nothing, although it is hard to take after all these years the idea that any intervention would be beneficial is a myth.

    I have waited in line for all those perceived technological improvement that have failed to materialise and the expectation that every condition can be fixed or even improved is of no comfort when I continue with the same condition 20 years later. Reality for some it that the problems they have cannot be fixed and they are mandated to live a lifetime with this condition.

    Some are willing to take that risk of intervention against medical advice and we would then have to live with the outcome good and bad, all operations carry some risk and when the benefit outweighs the idea of doing nothing, then go for it.

    We all arrive at the doctors with some expectation and at times the reality is that these are just not achievable, I have the evidence and MRI’s of my condition and that is not in question and for all those with a condition and no categoric diagnosis as yet, they have my sympathy. A friend tells you the truth, not what they expect you want to hear, being honest is the first stage of improvement, to keep someone enticed in the belief that improvement will come when this is not realistically possible, is not good for them or the condition that they have.

    We are not doctors and if anyone wishes to toss a coin and make a decision based on that, it is a decision they have to make for themselves, I decided to stop when advised to do so, I have no regret in having made a difficult yet finite decision and live with the consequences every day.

    Take care John.

  • I can say I think my Neuro is trying to help me but we'll see. My PCP that is in charge of my meds is I think trying to help me he just doesn't understand pain control. Me as the patient I'm trying to find my voice and be more assertive on what I need. That is really hard for me!!

    It is wonderful to have somewhere to go for support and just sometimes to have your feelings validated.

    Thanks to your all for your support
  • I was in extremely bad pain for 2 1/2 years before I found what was wrong. I went to at least 8 orthos, neuros and finally went to a Spine Clinic 3 hours away before they finally found that I had tears in three discs that didnt show up until I had a discogram.
    I thought many times that I was loosing my mind as no one could find anything. I went through countless injections, physical therapy, aqua therapy, and never gpt any better.
    I went to one of the best hospitals in the world (no kidding) only to be told I needed Pt, and their 2 week program of biofeedback, and pain management.
    I was glad that I never gave up. I knew something was wrong. I knew that someone had to find something. I ended up having a 2 level fusion. I opted not getting a 3 level and now wish I would have. I am know having pain on the 2 discs above the fusion, and will probably have to have those fused as well. But, my point is, to all of you that have pain, and cant seem to get answers, Don't give up. There is someone out there to help you. And if you want the name of the clinic I went to after 2 years of looking, I will be happy to give it to you.PM me. The tears they found did not show up on the MRI, and the Dr that I went to reconized that it was a possibility and had me do the discogram.
    Am I sorry I had the fusion, and still am in pain. No, as my life wasnt any good the way it was. I am not looking forward to any more surgery, but I keep the faith that someday, maybe we will get it all fixed.

    To all of you that are suffering and the ones like me that have been for months and years, keep the faith. Take Care! Robin
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