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what does someone like me do?

baffledbbaffled Posts: 375
edited 06/11/2012 - 7:38 AM in Neck Pain: Cervical
What does someone like me do? I have a herniation, and bones spurs at c56 that are pushing into the fluid that holds the spinal cord, but doesn't touch the spinal cord. This is not enough damage for surgery, I don't seem to have the necessary cord or nerve compression required for that.

Doctors point to my muscles as being the culprit of my pain, but nothing of PT, RF treatments, Botox injections, trigger point injections, massage and medicines have made the smallest dent in the spasticity of my muslces.

What do I do - suck it up, seek other opinions, try to get some additional tests? I am grateful for the pain medicines, because they help to ease the pain to be able to participate in my life, but that isn't fixing anything.

Hate to admit it - but at times I am so jealous of those of you getting surgery. I guess, it feels like you have the hope I wish i had that maybe oh maybe this could all be over. I can't imagine those of you who have had the surgery only to find no relief!

I am out of hope these days and just so frustrated....I just feel like there is something wrong and they just aren't seeing the problem. 11 years ago, much to the frustration of an ocolgy doctor at the U of M, I had a lipoma removed from my lower back, right hip area, when they had made the insission, they noticed another lipoma inside my hip body cavitity. I was awake thru the whole procedure...shots of novicane to allow them to cut into my body (it was suppose to be a 'cosmetic' lipmia removal). 2 mri's never saw this....but there it sat all 3 cm of it - proud as can be and the exact source of all my pain.

I appreciate now how lucky i was to have this solved on accident....but hoping for a second miracle this time around.

patti

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Comments

  • Howdy to you! Apparently you had symptoms necessitating an MRI. With that stated, it would be wonderful in the "fake" world that we were all alike, and just because the disc material isn't "hitting" the cord yet we would all be pain free and outcomes clear cut, unfortunately we are in the real world? :-) Okay, with that stated, if you aren't getting satisfactory answers from one doctor, by all means get with another. I don't know your insurance, but most can get another opinion.

    It sounds like from what you described the thecal sac is being hit with disc material? I know for me in the beginning stage of my first disc that went, I had a LOT of pain with it just pushing onto the thecal sac before the "cord" was directly affected. We all react differently, and you seem to have 2 things going on as well, the disc issue and too bone spurs - either one of which can cause any number of issues. Did your doctor give you any reason why he isn't offering any relief or treatments at all? If not, you might want to go to another doctor that can at least try some conservative options and give you a really good exam to help you? Not a doctor here of course, just going on what *my* gut might being saying to me giving your description in your post. But too piggy back to that, you didn't say that any of these issues found are causing any problems yet?

    Pain, weakness, effects on quality of life etc., some more of what they look at to fix. I don't recall the link(s) on this site, but surgical considerations are covered as you know on here. If there are no symptoms, they most likely won't do anything at this stage. I have a bulging disc at C2/3 - and it doesn't thrill me that puppy might pop like my C6/7 did, but most docs aren't into preventative maintenance from what I've experienced. I'm keeping my fingers crossed C2/3 does nothing! Keep us posted how it goes, and if you go to another doctor with this. *hug*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Patti,

    It sucks to be in pain and not get the treatment that you need. If I were you I would seek out second & third opinions.

    Also be careful who you give your buisness too. I am in PT because a Pain doctor said I did not warrant surgery (the guy was suppose to send my emg results to my NS- then tried to sign me up for all kinds of treatments). I wish I had not gone to this huge Spine clinic for my EMG and had seen a doctor at the hospital with out an agenda.

    Last year with my lumbar my lovely pain doctor referred me for traction to his buddy the chiropracter... Lets forget about the pain and talk about the costs..... $2,500 not covered 1 cent by insurance..... Not recomended for people with dislocated spines either......

    Keep on Keeping on :O)

    Julie
  • Patti I can feel your pain - literally. For almost 7 months now I have been trying to find the source of my pain. I had surgery that may or may not have been necessary on my shoulder. I know if didn't stop the pain.... I've seen 2 orthos, 1 spine surgeon, 1 neurologist, seeing a neuro surgeon next week, and 2 PT offices. The spine surgeon said I have a herniation but it's not causing my pain so go away.

    After all of these doctors and services I went back to my original ortho on Monday to ask for guidance since I was getting no where. He said "I don't understand why they aren't treating you for the herniated disk that is pressing on the nerve root like the report says". Well damn no one ever told me about that report!!

    When you know the answers don't make sense go find someone else to ask. There is a fine line between shopping doctors to get the answer you want and getting another opinion because the first doctor is an ass!! And this is even more true of PT, Chiro and any other special services who get paid by the visit. Since hearing this report I will not be going to PT until I speak to the neuro surgeon. I don't even want to think about what damage these well-meaning peeps could or have done to me.

    You have to trust that little voice in your head. If you listen you will hear the truth. Good luck and let us know what happens.
  • As I'm sure has been stated, none of us can look at an MRI and say what we really think as we are not doctors but I can say your MRI looks very much like mine did.

    I see you met with a neurosurgeon, maybe try an orthopaedic spine specialist surgeon?

    As for the disc being unable to cause pain when it's only pushing on the the thecal sac but not the cord....yea right. The Dr may not have pain if he has the same but as it has been well established, everyone's bodies sense pain differently and a bulge that produces no pain in one person can cause severe pain in another.

    Keep your confidence, be assertive and make it very clear to the next Dr you see just how pain you truly are in and how much of an impact it is having on your life.

    As for envying those of us who have had surgery, I do understand how you feel but at the same time, surgery unfortanetly does not always solve all the problems and at times can increase them so do get as much information as you can before making any choices.
  • I'm in a very similar situation as well. My doctors refused to do an mri for years, even after failed cts surgeries. I finally got one with the results being bulging discs. They are minimal on the MRI, but combined with the muscle spasms and fibromyglia, I can't even work. It gets very frustrating.

    One thing that has helped is to do a magnesium injection 1-2 a week. It's 1 cc lidocaine, 2 cc magnesium sulfate in the rump. I was afraid to go shots the first time, but really, it's not bad at all.
  • that is the age old question: am I looking for the answers I want to hear or is what i feel just not being addressed. In defense of myself, I unfortantely have a good yard stick of intense pain: 3 kidney stones, 2 child births and carpel tunnel cases that were off the map when I finally had them addressed and work a labor intensive job that can make you understand sore muscles. So it is not that I think I handle pain well (i don't think I do) but I understand what is just being uncomfortable and what is pain.

    Secondly, I have avoided getting some items of pain addressed thru doctors - so I am not someone who runs to the medical community at the first sign of something. like I said I own a gardening business, i spend 9 months a year very sore - and tired. What i have been feeling since 2007 is not that.

    Lastly, this is costing our family a boat load of money, I wish I could just walk away from this all.

    I spend most my nights laying on a heating pad, I will be getting my thyroid "killed" off here in the next couple weeks. I have had "Graves Disease since 2002 - so I am waiting to see if when that is regulated properly, my mental status and physical status changes.

    It is all just so frustrating...when this all started in April of 07 - i never dreamed I would be were I am today at the end of 09.

    thank you for your suggestions and support. I do beleive I will seek out yet one more opinion. I have learned to have all my reports myself and not depend on the doctors to tell me what they say.

    thanks again
    patti
  • This saying is so true. You know your body best. I think you are feeling the frustration that many of us have as we look for a cure. I don't necessarily want surgery but I do want an answer. That answer may be operate, wait, PT, or they don't know.

    You know something isn't right so get another opinion. Also make sure you have all of your info in an easy to follow summary. Most doctors don't have enough time to read through your history. If you can give them an overview that references the different tests it may help to keep their attention. Remember that the doctors also see you come in with a suitcase full of test results and they may think "here comes the nut".

    Good Luck with your next opinion and let us know how it goes. Remember we learn through each other's experiences.
  • Hi Patti,

    The most important thing i think we can do as patients is to describe the issues as short and clear as possible. When you describe the pain you need to describe it crystal clear. You need to make sure they understand the triggers is it worse or better or night or early mornings. I agree with Kris in that you don't want to bring in some suit case with to much information. You need to let the doctor examine you to an extent and make a diagnosis from his/her clinical findings as well. The test and films only show so much. If your going to seek out another doctor do your research and be sure to find one who is reading the films themselves along with using the clinical findings. We are heading towards the end of the year and many will fill up quick as you they have met the deductibles for the year and are making appointments now. I do hope you can find a good doctor and build a relationship with him/her and they will continue to seek the answers as to why your having issues. Also another test they may want is a CT/myelogram those tend to show more. Just another option a good doc may choose to use. Or they may want nerve blocks to check for compressed nerves. Anyway good luck and keep us posted how it works out.
  • I have had 3 surgeries, but it was the first FAILED one that started it all.
    The 3rd one (a few years back, was in through the back of my neck and my latest MRI's and Cat scans show the fusion is fine.
    So I too suffer from incredible pain that obviously is the muscles griping at me all day and night long.
    I have had the injections, Botox...and all of the goodies you mentioned as well.
    I take more meds now that any person should even be allowed to take and YET they really don't help.
    I would LOVE an answer to that question of "what now" myself.

    I hope whatever you need is found for you.

    Oh and I'm a newbie BTW...Teresa
  • I've been doing some research online and I'm going to ask my doc about Severe Spasticity...I've heard of some meds helping spasms, pain & stiffness, migrane prevention and muscle twitching...
    I know my back is messed up...I can feel it..my muscles are always so tight in my neck, shoulders, and back. When my shoulder starts tensing up hard as a rock and then moves up my neck I know I'm getting a major headache that lasts for several hours to days...I wiss you all good luck and I'll report back when I get to see my doc
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