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Hello,

I have been having back issues for over 8 years now. It started with my tail bone hurting mildly for about a week straight then it went into where it hurt to sit. My doctor at the time said it was that she thought that I strained or injured my tailbone somehow and told me to try to take it easy and not sit on it as much use anti-inflammatories and Tylenol for pain. I followed her instructions along with icing and it did no help. I went back in to have her say I needed physical therapy along with all of this and sent me on my way. I went to physical therapy and they said they thought the coccyx I think is how it's spelt is a little crooked and we worked on this along with posture and strengthening muscles that needed it. This helped me and it went away for about a year. Then it came back full force but now it was in the same area but a little higher. They looked with an MRI and found fatty tumors on either side of the lower spine each a little bigger than my fist. They went in and surgically removed them and when I woke up I had a very bad pressure pain that made it feel like I had to go number 2 but I did not and it was so bad that I was in tears and could not stay still almost to a screaming pain wise. I told them they gave me meds that made me go to sleep when I woke up it was way better but still dull and ache. I went home and slowly it got worse and the pain was now the whole lower back and the bottom of my feet hurt so bad it was not even funny for about a month I put up with that before going back in because I thought it was from standing all day and maybe I was standing wrong so I correct a few things and it did not work, I then got better shoes thinking this was it and also talked to my physical therapist about it. I went to the doctor and they Did a whole lower back MRI and x-ray to find that I had a few bulged disc and spiny growths . They then sent me to pain management, where I was taught to breathe, through the pain, haha I already knew this but ok then I was giving a book "living with pain" and kept up my physical therapy. I was also giving a prescription anti-inflammatory to start taking that was stronger than over the counter and told I could take so much of Tylenol. I was on the bike one day with a physical therapist and when I was done she wanted me to walk over to the table so she can do the stretches she taught me but when I stood up my legs were now shaking and I could not walk. I started to get upset but stopped and took a deep breath and told her I am telling myself to walk but my legs are not working. About another 2 minutes later i was able to move but my legs were like jello and I could only go slow. she said she would take note of this and send it to the doctor because it needed to be watched. I went to pain management and from there they sent me to a chiropractor to see if this would help and massage therapy. They chiropractor made things worse and the massage therapy felt ok and it at the time it was done but hurt the next few days afterward. So then I was told no more chiropractor. I also lost a lot of the feeling of sensation to my lower half of the body. I could feel you touching my legs if your hands were really cold or really hot and that is pretty much it. i could no longer feel my husband put his hand on my knee and this made me sad. I also lost movement in my right leg and it took 6 weeks to get this back and I was sent me to a neurologist to test that out. They said it seems the nerves were conducting right and they were not sure why I could not feel it so then I was sent to a neurosurgeon. Through the whole time, the pain is now in the mid back and lower rib cage area along with the old areas. I was giving multiple MRI's and was told I have osteoarthritis, 4 bulges disc ranging from 4 cm I think down to 2 cm. I had osteophytes throughout my back and losing flood in one of the vertebra. and end disc wedging. and the added benefit of slight incontinence off and on. The neurosurgeon told me that there was nothing she could do because I was not and her words " peeing myself, pooing myself nor am I on the ground unable to move" that I am too young for any surgery unless it was down to that point. It has made me so sad now. I lost my job over this since I could no longer do this work and also in pain all the time. I can no longer fo to the store by myself If I know I have to lift anything heavier than 5 pounds because it makes it worse I also can not push a cart through the store with that much weight in it or my legs do not work right and my back is way bad by the time I get home. I can not bend and clean like I use to and I am watching my house get dirtier and dirtier ith nothing that I can do to fix it. I can not sleep more than 4 hours without waking up to toss and turn do to staying on one side too long hurts enough to wake me up. I can not take care of my body as well as I use to and due to the gabapentin I had gained 50 pounds in two months and it was not helping so the doctor had to take me off of this. they tried Lyrica and It would make me cry at the drop of a hat. I have now had lower lumbar injections in which it seemed to take about 30% of the pain away but only for a few months and this was with three rounds of the shots before it go there. since the shots my lower back has a weak feeling in it now with additional pain that was not there before and I still have the pains that run down my legs and bottom that comes and goes along with the numbness of sensation that is there all the time. I obtained a nurse advocate to help me get more help through my insurance and she had me switch to a different neurosurgeon and get a second opinion. This neurosurgeon showed me my actual areas that are bad and explained in detail what can and can not be done and said the main reason is that I am too young and once they do back surgery you are taking a good risk of it not helping or making it worse and with me being young I had to think about do I want that now or try to hold out as long as possible to where there is no choice. He said do I need something done yes but since it shows no impinged nerves and nothing is broke there is nothing he can do. He did suggest getting a MRI were they put the die in your back but I am allergic to that die so they have to discuss what to do from here. This is all happened over the the whole 8 years and at times its like it prgresses fast then holds then goes again. does anyone have any ideas or at least has been through this same thing that can just know how I feel? thank you for anything you can help me with.
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Comments

  • LizLiz Posts: 9,653
    Hello ebonyblks


    Please click on link for information about Spine-health
    Welcome to Spine-Health




    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I have clicked on link and read rules. I am unsure why I have not received any replys?
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  • jimandjrjimandjr Dallas TXPosts: 745
    Sorry you did not receive replies. It is tough when you just have bulging discs with no herniation. I also have bulges, with DDD, and arthritis. I have had 3 spine surgeries. Thankfully. They got me out of bed each time and I was able to return  to work after the 1st. The 2nd and 3rd forced me to stay home. I treat my pain 24 hrs a day. Impossible to work when the meds put me to sleep during the day and I'm up all night. I have had some luck with ablations. 
  • MeydeyMeydey Posts: 593
    edited 01/11/2017 - 4:07 PM
     I'm so glad you got a second opinion with another neurosurgeon. I guess what he tried to say is that if you get to that point where life is unbearable, then surgery would be an option. If you need surgery, then you do regardless of age. I've heard 40 year old patients being told the same thing. However, back surgery is a gamble..either gets better, stays the same, or gets worse.

     I hope they can find an alternative to the dye used for ct myelograms for you. MRIs don't always give a full picture. My surgeon had me do a ct myelogram to confirm nerve impingement before he would do surgery..he was very cautious. Indeed it was more prominent when tilted upright on the table after the dye was used. 

     I can certainly relate to how life is with chronic pain. You have to let go of some things while learning how to do others differently. Somehow I've adapted, although things can be difficult. Your PM doctor could try radio frequency ablation or epidural injections for the meanwhile. I never tolerated Neurontin or Lyrica..it made me into a fat zombie lol. After switching to Savella, the weight dropped off and it doesn't leave me spaced out either. Savella is an antidepressant that works for chronic pain and fibromyalgia too. A good muscle relaxer like Baclofen is a must for chronic back pain sufferers. Flexeril never did me any good and kept me up at night. Speaking of which, insomnia is a constant problem for me as well and for others with the same predicament. 

     Have you considered applying for disability? It doesn't have to be forever..just til you are able to get back to normal or next to normal. Having medical coverage is essential in our circumstance and Medicare comes in handy. Of course you'll need a supplement plan to cover the remaining 20%. Chronic pain is life changing and we must utilize whatever resources are available to us. 

     Please keep us posted..sometimes it takes awhile to sift through so many posts. Mine have gone unanswered sometimes. I hope you get the help and the relief you need. 

    PS..I think you made a good decision to not go back to a chiropractor. They are not qualified in complex neurological issues and can end up causing more harm than help..just my opinion. 


    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
  • Thank you for the post. My husband works and we have his insurance it's a 20/80 coverage. I have been on baclofen now for about 5 years now along with meloxicam. Then my new pain management took me off of the pain pills I was on from old pain management because she said she does not work with short acting pain meds. she tried several and through things not working and me being allergic we ended on oxycontin 20 mg 3 x day. this was a way lower dose than what I was on and I had to go through some withdrawal symptoms and learning to deal with higher pain level then what I was in but only for a few until the long-acting built up in the blood. At first, I was upset because why would you reduce this when I was in this much pain but I go the point. 
      
       I ended up with a bad what felt like a neck pain about 4 weeks ago and thought it was a bad kink in the neck. I had a headache with it that would not go away and it was a little different it did not hurt to move my neck from side to side it hurt when I looked down and up and it came from the very bottom of the neck. I for about 4 days stretching it and treating it like a kink (heat pad, Tylenol) . When it did not go away I went to chiropractor it seemed to help for a few days then it came back worse. I went to a massage therapist and it did not help. So I am back to back surgeon  just had x-ray and MRI and go in next week to see him and see what it going on. 

       I tried to go for disability but they told me I was one point short on receiving it. The downside to only working here and there and raising three kids. I will keep you posted and thank you to both of you for responding.
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  • I hope things go better for you. I tried gabapentin too & it was awful. I gained weight just like you with no pain relief. Baclofen gave me bad side effects. If that stops working, you could ask about Tizanidine. It's also a muscle relaxer & really helps me. I also use long acting pain meds with immediate release  for breakthrough pain. I have ddd, stenosis, arthritis, etc in neck and lower back. My issues started years ago but  only got bad enough to seek help about 3 years ago.  I'm supposed to have neck surgery, but waiting as long as I can. I've heard too many negative stories & results with my type of surgery.  For now, meds keep me functioning. Not pain free by any measure, but tolerable. I was stay home mom. Things medically started going bad not long after my son became an adult, so I didnt work enough outside the home & also don't qualify for disability or any help that way. My insurance is also thru my hubby.  
    Everyone's situation is different,  but one thing we all understand here is being in pain & all the fun issues that go along with it. And I've had posts that nobody replied to for a long time. Just happens that way sometimes. Please know that you're not alone!  I hope they find some way to get you some relief.
  •  I'm also dealing with cervical issues and it's just one more thing I don't need. Can't have MRI's anymore because of my SCS so we'll just have to treat the symptoms. Please let us know how the results go. Sorry to hear disability didn't go through. My work history was limited too but thank goodness I worked from 16 and it got me just enough points. I know of some people who never worked but they get it. I don't understand. Hang in there, okay?
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
  • Thank you everyone for your words of kindness and help. I do have family that I try to talk to but from my mom's side I feel bad because she says I don't get it your young and I'm older then you but you are acting like you are way older. She came from the time of if you can still walk and talk your fine no need for doctors just walk it off and I hear crying does not help a lot from her. My husband was very involved of helping me but after so many years it's gets tiring to have to be emotionally  stable for the one you love everyday all day when I know he has his pains at times to so I do not blaim him now when he asks what is wrong then spaces out when I tell him. It's to the point now I'm just quiet and when he asks I keep it short and say same old same old. He tried his hardest to at first to do things around the house but I would say no I got it because I did not want to feel worthless to the whole family but this caused him now to not do as much and not ask as much. The trouble we can get are selves in at times. I am great full for all of you thank you.

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