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Where to go from here, Scared

Hello, I don't even know where to begin. I have had back pain off and on for years. 2 and half years ago I was becoming a regular at my doctors he sent me to a chiropractor who worked with me for a couple off month. I drive school bus and he had told me that it was do to my job my back would get some what better when I was off the bus for 2 weeks or more but once I was back on it started again.,My chiropractor talked to my doctor and referred me to a neuro. I went and had 6 different doctors look at me. I found one who is suppose to be the best in my state. He told me I would need surgery but thought that I was not ready since I was only 40. He said mentally I was not ready. He sent me to pain management and said I will see you when they can no longer do anything for you. At first I was told I had stenosis and bulging disc. I did PT and had epidural injection. In my last injection I told my pain doctor it did not work last time and he said he wanted to show me something. I no longer have any disc left. I am in pain all the time. My legs go numb and my hips hurt all day long it hurts to sit or walk. I had to quit driving busing and I work at retail also and after 4-5 hours I am in tears. at night I wake up and can not move I have to have my husband lift my legs for me and exercise them to make them work. I go to the doctor on the 16 of Aug , but I am scared, I don't know what to do or what will happen. No one tells me anything anymore. I have not slept in months (a full night). I am so tried and I just want to sleep. But sometimes I am afraid to go to sleep, because I afraid I might wake up and not be able to walk that day. does anyone know how I feel. I lost my insurance when I resigned and now we have my husband which sucks. no prescription card. I am not sure if I qualify for disability but I know I can't go on working like this. When I work6- 7 hour shifts 2 or 3 days in a row I cant move I cry and I am sick to my stomach. I am in school also I do on-line classes hoping to get a job that I can sit somewhere. But any more siting up right is hard I have to be in a recline position. If anyone has any input I would love to here it. Thank you .
shiela diodati


  • I have the same issue from a hockey injury. I have collapsed discs which narrow the foramen the nerve roots exit from. I haven't been able to sit more than 20 min for a year. Numbness and tingling. My left calf fasiculates or twitches.
    If you are at the point where you life is so drastically altered, get surgery. You/we live in a great area. Tons of great spine docs at Virtua or Jefferson Rothman institute. I was offered a two level alif stand alone fusion. This jacks up the vertebral bodies and takes the pressure off the nerves. The relief of leg pin is reported to be dramatic although back and residual leg pin is to be expected up to one year. I m scred as hell too, but we can't go on like this. Life becomes joyless. I plan on getting it done in January. I have four children, 37 years old. I ont want to miss doing activity with them. I go through short bouts of depression and anxiety. I am close to rock bottom as it seams you are. Spine surgery is not some horrific dire process. Tens of thousands, literally, of fusions are performed every year and the VAST majority improve. Will we be pain free and have the back of a ten year old? No. But to get our life back it's a very reliable option. Bet of luck to you.
  • JerseygirlJJerseygirl Posts: 18
    edited 08/17/2012 - 2:26 AM
    Went to the pain clinic yesterday, and the are sending me to get a MRI on my brain and a never test done on my legs,also they want to try the epudurial injection again but the want to put the medicine in a different spot to see if it will help with the pain in my back more. he told me if the injection does not work then surgery is the next step. However I woke up last night and could not move again, this feeling starting to become a everyday habit. Now my shoulder go numb also. I feel trap in this body. My kids have moved in with there day because of this, why should they suffer and not have a life. I make plans to do things with them and have to cancel the ;last minute. I am not only losing control of my life but it has had a impact on my children now. I hear people talk about surgery but what benefit are there. Will I be able to go hiking again and do things with my children. I went to watch my son scrimmage the other day and after 30 min I could not sit no longer I had to stand after 15-20 standing it was killing me. Does anyone have suggestion on how to get through a simple Jr, high football game for the sake of my son. feeling so disappointing in myself. I don't even know what surgery they want to do, they are so evasive when they talk, Why?.. He mention helping the spine to give more support and talk a little about the stenosis. I am so lost with all this. only if I knew what to ask the doctors to start with, I real need to educate myself in this because I am the only one who knows how I feel and what is going on. I think sometimes it is a guessing game for them...
    shiela diodati
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  • JoydancerJJoydancer Posts: 463
    edited 08/17/2012 - 10:27 PM
    been happening with the pain and the chronic catch-22 with having to work. Hey girl, you just cant keep doin what the body cant do... Good they are check-in nerves and the brain mri to get a better idea of whats all involved.

    The epidurals they are giving, are they limiting how close and how many? Concerned with your symptoms and you doing as you say "another".... my anethesiologist/pain spec would do the epidural nerve block with rhizotomy with my 3 level disc bulges for past 5 years and its kept me out of pain and functioning. Know they kept track of of doing them but they were rhizotomy (radio-frequency).

    Re: your kids, that's really tough - - on you and your heart But consider this....it may be seem it is a loss for them - - BUT your kids will learn that life DOES bring curves and challenges & things you cant change.... they'll SEE you takin care of you and that is a good thing. And should it involve more tests, more R & R needing surgery/recovery and not being able to do the ideal interaction/activities with them, KNOW you'll also be given them an opportunity to become more understanding, caring and compassionate. Youll be givin them a powerful example of courage and to truly not sacrifice SELF when action and a resolution is vital and necessary....to honor what the body needs sick, illness happens or injuries happen, doing whatever is necessary, tlc r & r and to honor that :) They're not being deprived, theyre having an opportunity to see first-hand some important lessons - - let them in; they dont have to wonder, guess, talk to them, tell them what's going on, share the challenge and why its necessary and what steps you are taking and the doctors to fix it. And those times you can't do....with them, it's you taking care of you, so you CAN be more fully there with them as get past your treatments/surgery, your time to heal and back to doing more and those things you miss not being able to do with them :) it can be a win-win, Jersey, don't deprive them of the good that is in this with them and for them !

    Sit back, get a plan for you, with the tests, consults with dr. and focus fully on what you need you can find ways to still connect, watchin a movie together, take a drive get some smoothies, meet them after those games, and you timing it so you don't sit thru those games....plan a post-game replay with them sharing it with you. A shift for them and you, but connecting in a new way !

    Hey, hope your tests go well and I think you said nerve tests, doing EMG, NCS ? Also MRI - Brain, what they find out/can know and rule out (hoping)

    Hoping the pain eases down as things come into a better focus on what YOU need and you have more answers and a plan for what is the next step to bring you closer to what can resolve treatment/surgery/healing.

    p.s. Jersey, you mentioned disability - - do you have disability benefits with your work ? thinking of SSD - - you know with SSD whether it is firm it;s going there or not, dont know if you know this, but if you get an appt./phone call started, get an application filed with SS, and then move forward with the process as needed, if your case gets to approval for benefits, they start from your application date you filed. If you got ?'s theres a good site thru ssa.gov to guide you thru and Spineys here you know and some good posts from those applying and those of us who have SSI and/or SSDI
  • JerseygirlJJerseygirl Posts: 18
    edited 08/29/2012 - 11:42 PM
    Doctor called they are going to give me facet injection instead of the epidural injection.. Has anyone had both? Did the Facet make a difference. I am starting to think they are just guess and ruling things out. I thought they would wait for my tests to come back first before the did the injection but I go for my MRI today and my injection on the 13 of Sept, and my other test on the 14 of Sept. I am so confused.. I think before I get this injection I am going to ask to speak to him.. I need answer just wish I knew the right question to ask...The pain is getting worse and work is getting harder..My family is falling apart from this.. Sometimes I think I would be better of alone and not a burden on my husband.. I cleaned the house the other day to surprise him, I cook dinner and bake banana bread-he was really impress and happy like I was back to my old self and long and behold I was down for 4 days, I over did it.. I had to miss work and felll behind on school work. How do I find my middle ground. I can't go through life afraid to do things because I might be down for few days.. How do others deal with this. I just feel so lonely and lost...
    shiela diodati
  • Jerseygirl, I'm sorry you are going through all this. It's good for you to ask your doctors questions about why they are doing a certain type of procedure. I've had epidurals and facet injections. When one type of shot became less effective then they would try a different area or a different type of shot. It's important to understand your MRI results and understand the other test and the results. It sounds like your symptoms have gotten worse and it may be time to meet with the surgeon with your test results and take whatever films they take - surgeons like to look at the films because they can interpret things differently than the radiologist.

    Joydancer gave a lot of good advice. I have had a lot of problems over the years of admitting I could not do everything. As a result I have suffered and I have had the recovery time to make up for overdoing. It is not easy dealing with these issues. To the extent you can, explain what's going on with your husband and your kids. I've been where you have been - thinking everybody would be better off if I was living alone so I wouldn't be a burden. As time has gone on, and with help through therapy, I am understanding better that having these problems isn't my fault, and my family has grown to understand that I will do what I can when I can and I can not do everything I want to do.
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
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  • JerseygirlJJerseygirl Posts: 18
    edited 08/30/2012 - 11:07 AM
    Well the test was not bad but laying on my back was horrible 7 min in it I had to push the button and tell him I need to move my left leg was going numb . I was allowed to adjust but had to wait another minute for him to stop. Then it was another 3 minutes until they put the contrast in at that time my legs where so numb I had tears in my eyes and was white knuckling the table. The gave me some more pillows under my legs which seemed to help for the next longest 15 min of my life...I just don't understand what the MRI is suppose to show..As for my surgeon he and my pain doc send my records back forth when the pain is no longer standable or my pain doc can no longer do nothing for me then he will do surgery. He is very adamant that I am toooooooooo young...Thanks for your reply it is nice to know that people care enough to listen and try to help each other on here...........
    shiela diodati
  • KarenDKKarenD Posts: 742
    edited 08/30/2012 - 3:11 PM
    Is it possible to get an opinion from a different surgeon? It seems like they aren't listening to what you're going through with your worsening symptoms.

    MRIs can be awful - I had one a year or so ago that made me cry, but I had to get it together so they could finish or reschedule and have the whole thing done again.
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • Had the nerve test done yesturday 9/14 he found a bad nerve but has to compare the numbers and then will send them to my doctor. he thinks it probably from my DDD but can't say for sure. Had my injection spondlyisis(facet) on 9/13 side effect suck day and night sweats just like manopause lol and dry mouth I was up ever hour the first night sweat so bad, but my hands are not tingleing anymore and my legs don;t hurt as bad. however I still have to take my meds because my back hurts like clock work as it get closer to the time to take them. I did notice I went an extra hour yesturday before I needed to take my pill so maybe thats a good sign.. I dont think anymore. I use to know my bidy so well no I feel like a stranger to myself. I will keep you updated and let you know what the test says and thank you for your care and support.
    shiela diodati
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 377
    Hi Jerseygirl, I see a couple of weeks have passed since you updated us with your status - how goes your war on pain? Your circumstances sound complex and probably takes a toll on you mentally and emotionally, sometimes probably more than the physical pain. One of the great things about these boards is the feedback to our posts whether the fellow spiney is relating their treament protocol for you, describing his or her personal circumstances, and everything in between can help us a lot by the simple fact that other people are in pain too! Many of us, me included, understand the strain our pain puts on relationships. On other subject strings, I've discussed losting my first marriage of 13 1/2 years and all the relationships that were part of the package, along with almost all of my financial assets. And, unfortunately, my second marriage is rapidly deteriorating too because of the pain. I expect you work very hard at trying to manage and meet your husband's and children's expectations of you but the advice of other posters regarding talking with your family about the reality and the limitations of your circumstances is good advice. You take good care of yourself and let us know how you are doing. Jerome
  • FrankdaleFFrankdale Posts: 1
    edited 06/20/2016 - 9:30 AM
    phone # - 1-800-772-1213
    government grants - https://www.disability.gov/

    does degenerative disc disease qualify as a disability? - yes

    degenerative disc disease (ddd) is a hereditary disease that causes the breakdown of the lower si joint in the back. the united states government does recognize degenerative disc disease as a disability and will allow you to provide the proper paperwork to draw social security if you meet the eligibility requirements.

    gl all my friends in states. i feel your pain.

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