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scolipsisISpain 07-02-2013 10:25 PM

so over it but now what?
I have suffered chronic pain since my first failed surgery. I am now experiencing the side effects of more pain from areas not fused. I have been having very bad rib pain mostly on through my right outer rib area. my shoulder blades are so tense it causes muscle problems in my neck and shoulders. I have burning pain all day that worsens when I work (hairdresser) or at home with my 3 yr old and cleaning house. I am fed up with Dr that don't care at all and now I'm just trying to seek others that can empathize with me. I'm either told more surgery but that i might b worse on pain meds forever or do what I've been doing exercise. I don't know anymore if when I say something hurts that I am being taken seriously. I'm trying to find others put there in my same position

gmak 07-07-2013 05:25 PM

Re: so over it but now what?
Hi scolip, Im a chronic pain patient after 4 lumbar surgeries & my dr calls me "failed surgery syndrome" for a diagnosis sometimes. Is this what you are referring to? Do the drs want to try to re fuse the failed fusion areas or vertebral levels? For tense muscles that were hurting my neck & causing migraine i didnt have to see the dr but had a deep myofascial release massage & it was so very effective for me! Are you still seeing your surgeon & if so what kind of surgeon is he? Are you in pain management? Sorry for so many questions, i do empathize with how it feels to be in constant pain 24/7 & I sympathize as well. It must be extremely hard to work, raise a toddler & be unfused & in constant pain! Im so sorry that you dont feel "heard" by the dr. I have seen spine only neurosurgeons & practice limited to spine only ortho surgeons & pain mgmt drs of two different fields that both treat pain, pain mgmt/anesthesiologists & physical medicine & rehab drs, physiatrists in order to find a dr who would correctly & carefully diagnose me & then develop a working treatment plan to deal with my surgical options as well as my 24/7 severe pain. This is how i found help, by getting 2nd opinions, seeing spine specialists, getting referrals to PM drs until i got a diagnosis & working plan from caring, compassionate drs. It wasnt easy but took time for trust to build & i hope that you find this same treatment soon. Meanwhile, i "get" it & Im so sorry that you are hurting & i understand how awful it is to feel like you need the drs help but
cant seem to find one. But, they can be found by looking, there are
great drs out there that care about people in need of their care.

scolipsisISpain 07-07-2013 07:29 PM

Re: so over it but now what?
Thank you so much foot the reply! although it's weird to say, I am greatful that there's somebody in my shoes, although I wouldn't wish my condition upon my worst enemy! To answer some of your questions- I have been told that I may have "failed back" however my age it has made people weary of that diagnosis. I have gone on and off of pain meds and although they certainly work most of the time I do not want to be a life long consumer! I do get temporary relief from massage for certain areas that are strained however it is only temporary.. the ironic thing is my husband is a massage therapist! but with our crazy opposite schedules we very rarely have time, but when we do he will put in almost 3 hours of work and it only feels like scratching the surface! I had fusion surgery of t2-t12 at 17 and had chronic pain for 3 years when i finally went to the er they found one of my rods was almost protruding from my left trap. so at 20 i had the rods removed and d instant reelers for about 6 months and then started having didn't pain and it's only glutton worse and more widespread. I have been to 3 pts, 4 surgeons and 2 pain specialist. At one point I felt so hopeless because one Dr actually told me my pain was in my head and that he had a lower lumbar fusion and had mild pain at times that he could get through with mind over matter! well then when I had an MRI that showed severe degeneration, moderate to severe stenosis and only 5 of the 10 vertebra had fusion, I felt a bit vindicated that it was not "all in my head". I was supposed to have a contrast MRI done because of numbness in my hands, but to add to the situation I list my insurance and now cannot get any because of the preexisting it would cost me 800 a month! I have been told I cannot with more than 6 hour shifts which I'd even hard at times so I do not meet the minimum hours to qualify for employee health insurance. I'm at such a loss because like you have said if I look hard enough I will eventually find a good Dr but it would put my family on the street in the mean time. we have actually playedd around with getting a divorce just so I can qualify for medicaid although that's not even a guarantee. 2 yrs ago I was also diagnosed with hashimoto thyroiditis which I'm finding can cause joint pain which obviously doesn't help! I got to a point where I just want to find others that know f what I'm going through and hopefully get more ideas and know I'm not alone! when reading your reply it was humbling to know you"get" it. and I am really sorry to hear about all of your ailments as well. how long did it take for you to find a good Dr? do you have scoliosis also? if you don't mind me asking, how old are you and how long have you suffered pain? any children? t thank you again for talking with me!

BB07 07-08-2013 05:11 AM

Re: so over it but now what?
Dear ScolipsisIsPain,

I too suffer and deal with chronic pain. I definitely hear and feel your pain in your words. I hear your anguish and frustration and I do understand you are going through a very difficult thing-pain, that doesn't seem to ever give you a break.

It sure can be just as difficult to find the right doctor that will listen to you and believe you. Don't give up-just as there are so many inconsiderate, condescending doctors-believe me there are just as many doctors out there who are not.

Do you have at least(I don't recall if you said)a primary doctor who can refer you to a Pain Management Specialist? If not, or you are not happy with your primary care doc-you can contact local hospitals in your area-they all usually have a referral service.

Just don't give up, you will find an empathetic and sympathetic specialist who will listen to you and believe you. You just keep trying until you find her/him!

Make a list of all your symptoms, how long you have been experiencing same. What you have tried, what your fears are, and what you are looking for-I am pretty sure that answer is some relief, and someone to really listen to you and take you seriously. Write all these things down so at your appointment-your mind doesn't go blank out of nervousness.

You can do this. I know you can and will find a doctor that will really help you.

Good Luck!

gmak 07-08-2013 11:02 AM

Re: so over it but now what?
Hi scoliosisIspain, I was 26 when i got hurt & no i dont have scoliosis, i just blew out 2 lumbar discs but had to have 2 laminectomies/ surgeries because of spinal fluid leaks & grafting done on dura. I got married, had 2 sons all within 4 years of my surgeries, then i reherniated & had 2 more surgs, leaked spinal fluid again, had grafting to dura, again. But, i raised my kids, worked, stayed married all in pain. In 2012, i found out why i was hurting, since 1988 i have adhesive arachnoiditis, probably from all the dura surgeries, it has been on all my MRI's but wasnt told until last fall. 24 years i was diagnosed with failed back surgery syndrome but now adhesive arach. I had the same NS until 1998, then a pain mgmt anes & now ive seen the same PM&R dr since then but in between & after arach diagnosis i saw 3 NS & 2 pm/anes. Alot but im so blessed to still have my dr, he's a physiatrist & im pain controlled most of the time. Is there anyway that your husb could get insurance through work for you? In 6 months we will all have a new system & i really hope that will help you, but in the meantime you are hurting now. I understand truly i do about pain, house, kids, job & all have to be taken care of & i dont know how i did it. My kids are grown, out of univ, in careers doing well & they are great & yours will be too! It was love that they needed & that spurned me along, kept me going even with the pain & i was there for them & they are more understanding, more compassionate because of having a mom in pain. You will see, i couldnt at the time like i can looking back, but your family will be okay too. One thing that pain cannot steal from us is love. I will never forget the first time on healthboards when i said i was in pain & someone said "i understand, me too!" instead of "im sorry" from people who dont know what its like. It changed my life, and we are here for you anytime you need an ear!

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