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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
  • 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.
  • 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: 118
    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.

  • Hello everyone, sorry it been awhile I have been busy and waiting to find out what is going on. Well here it is MRI showed No tumors yaaa. Nerve test showed slight damage in left leg. He change my med to cymbalta, and Oxycontin and is keeping me on topamax because I went off of it in October because I was tried of feeling stupid and forgetful, however had to migraines in with 3 weeks of each other that landed me in the hospital from dehydrate from vomiting so much. I had the injecting that had the Meningitis scare I was fine it help for about 2 maybe 3 weeks I felt like my old self most of the time. but it did not last long. I seen Dr. last week and he wants to do a Lumbar-fusion, told me to think about over the holidays and we will discuss it on my next appoint on Jan 9th. If anyone has had this please give me some feed back Thank you. Oh pain level is back , it the holiday season and we are in full swing and I work in retail, don't know how much more I can take...
    shiela diodati
  • Welcome to the fusion club, Sheila. Lol.

    Lots of good stories, you will find.

    Lots of articles and videos on website too.
  • My journey began with the words "You have DDD in two discs, this injury will end your career in the Army"

    Thus began a year long process of the following:

    Facet joint injections - did nothing but give me a migraine for two weeks
    Physical Therapy - they stuck me on the "stretcher" to try and spread my joints back out - 2 minutes on the machine and we had to stop as my left leg went dead.
    More injections - again no help
    Pain meds - Ultram and Salsalate - pain and swelling, this was a stop gap until I had my surgery consult.
    Discogram - to determine how many were bad and causing pain - I would not wish this test on my worst enemy...it HURT

    Then came the words "We are going to screw everything back there together" This was in 1999 in Mar of that year I went through a multi-level fusion surgery from L4-S1.

    9 months of recovery as I was stubborn in the not smoking and it slowed things down, let me tell you wearing that damn body brace in the NC summer is no fun. My recovery consisted of walking, thats all.

    After the recovery was over I had 7 great years of pain free living where I played sports, worked out and lead an active healthy life.

    I was 27 at the time of my Surgery, I am not sure were the "You are to young" is coming from. Pain is pain no matter what your age.

    It DOES work. Just ask a lot of questions and go into things with a positive outlook and you will be fine.

    Fusion L4-S1, T8-T9 herniation.
  • Jerseygirl, before you jump into surgery or anything drastic, I wonder if you've explored the home page of this site http://www.spine-health.com/ especially the section on Degenerative Disc Disease http://www.spine-health.com/conditions/degenerative-disc-disease , and this article dealing with deciding on surgery http://www.spine-health.com/conditions/degenerative-disc-disease/deciding-surgery-degenerative-disc-disease . The last one is 4 pages, Be sure to read all of them and visit the links throughout the article. They helped me so much to understand what was happening, my options, etc. That, and a very good pain management doctor. I think she's the greatest person in the world!

    Surgery is not all it's proclaimed to be. Yes, you will see success stories on the forum, but fusion and disc replacement surgeries are not 100%, not even close. So please, put a lot of thought into that decision. Get educated here and go over it with your doctor. My doctor was surprised at how much I knew before I even saw her. If you do opt for surgery, be prepared for a very long recovery and therapy period. It won't be a piece of cake.

    Do apply for Social Security Disability. No guarantee either that you will be approved on your first try, if you're not, appeal, appeal, appeal. I was approved on my first application and I am very thankful for that. Today I get by with steroid shots, lots of rest, pain management. I'm delaying surgery as long as possible. The odds just aren't good enough for me to have surgery.

    I wish you lots of luck and will be thinking of you. Keep us posted!


  • Thank you everyone and I will check out these sites . As of right now I am leaning more to not getting it, I just don't think I am ready. However I don't know how much more long hour shifts I can do. after 6 hours I am pushing myself so much I am in tears when I get home. My body can handle about 4 hours and it is telling me then it has had enough lol. I am in school to get my associates degree in criminal justice I would like to become a probation officer. I hoping that is something I can do. Only if I was able to get disability until then but since I work now I don't think I can. I feel as if I am do more damage to body ever day by working the way I do, but I have no other choice in today economy. Thank you again for your support.
    shiela diodati
  • I was searching the web for information about spinal fusion and came across this forum. Your thread title of scared...caught my eye. As I look at where your story began and the timeline for all of it, and truly we have identical stories!!! I am a 41 year old with a family. I have had back pain for a long time. I finally gave into it about 2years ago. Went to doctor, she told me she sees many young mothers and basically it is from carrying kids/carseats, etc. sent me to physical therapy. Thought it helped a little , but over the next year it progressively got worse. Went to our local convenient care one day because it was REALLY bad and the doctor actually did an X-ray and found there was something physically wrong. He sent me back to my original doctor who, from the X-rays ordered an MRI. According to my MRI, basically my L4 and L5 have ruptured and i have degenerstive disc disease causing severe stenosis to those nerves. They also found arthritis in those joints. I had been on 5/325 hydro codone to manage the pain, but when I called for a refill the doctor told me I need to come in for the shots. I had three within 2 months. Two were done low and the third was higher. None provided any relief. She referred me to a surgeon who recommended fusion surgery. I was then referred to my local pain clinic for a discogram. When I got there I talked to the pain doctor about other options . He put me on Butrans and Cymbalta...I ended up in the ER because of side effects. I went back to the pain doctor and he will only prescribe the hydro codone again 7.5/325. This worked for a week. To the point I felt so good I was going to start working out again. After a week, it quit working. I called the pain clinic to see if they can adjust my meds. Because I reacted to the other meds they won't give me any other med besides the hydro codone. But per my original surgeon, if this med doesn't work I need to have surgery. I am really nervous that it won't work, or will make me worse! I too am physically struggling ! My kids play sports and sitting watching their events is excruciating! I can guarantee that I won't be able to hardly get out of bed the next day . It hurts to sit too long, it hurts to stand too long. Some mornings I can't hardly make it into the next room to sit in a chair let alone stand to take a shower or brush my teeth. It usually gets better as the day goes on, but I am always in some sort of pain. My hubby wants to go on vacation, but the thought of walking long distances worries me...because I may be able to slowly walk, but I know the next day will be torcher! So....any insight about fusion surgery would be great! I am leaning towards surgery...I can't keep living like this!!! I miss kickboxing and hiking with my family . I feel so unstable on my feet. I feel like I am too young for this:(
  • Hello everyone, I made a post on a different page forgetting about this page so I wanted to update everyone here who has been so nice to me. I went to my regularly family doc (12-28-12)and he put me on light duty I am not to unload truck at all and I am to only work 4 hours shifts. On the 9th of Jan I went to the Pm doc and some how I was knock out of the system, they think it was because I was there on the 6 of DEC when I was in all the pain from my sciatica, anyway. they squeeze me in with another NP and he switch my med from Oxycontin to methadone. I told him I could not afford my med it was to expensive. I also told him that the gabapentin they put me on(12-6-12) I was not able to take 3 times a day because it made me loopy he said it was ok to take what ever I could handle as long as it was helping. I told him it was a little but my leg still goes numb and tingles but is not as bad.. the nerve pain how ever was so bad that it was driving me crazy and making me very depress. I was reduce on work hours . I feel that the Oxycontin is not helping with the pain like it should and plus I cant afford it. so he did switch me. Good news I feel almost human.. the methadone has let up on the nerve pain. still have tingle in feet and hands put the electric feeling and sore to touch is almost gone alone with the burning sensation. I don't feel stoned and tried right now. I still have pain in my lower, middle, back and in my neck. but I do feel a little better on this med.. I know it only been 3 days I know what can happen in the next week or so. the new can were off. however I hope not because this medicine is so cheap. it cost as much as a big bottle of Advil..I also am going for a MRI on my back as soon as the insurance company approves IT.. as for seeing the other doc's. just waiting to get this MRI and then I will get that appointment.... Thanks again for listen. sorry if I am rambling but so much information and I suck at writing...
    shiela diodati
  • DaveFusionDDaveFusion Posts: 476
    edited 01/11/2013 - 3:50 PM
    Jerseygirl: so pleased you aware relatively pain free and able to function now. All the best for the MRI and docs consult.
  • I have just read all of your posts here and I am not surprised they changed you to Methadone... I was on Methadone for 10 years and I thought it literally saved me physically and mentally...Until I had to stop taking it....then it was the worst... They had me on 120 mg. a day along with Oxycodone 30 mg. 5 times a day....then I had to change PM docs... I wouldn't wish that pain on my worst enemy... Try to stay at a low level please...Methadone is a whole other animal... it stays in your fat and gets in your bones and it will rot your teeth...never try to get off of it without help...It is a great pain reliever....but the side effects are bad... I was sweating so bad at night and during the day that I was miserable... and I was also nodding off all the time. That's one of the reasons my new PM Dr. wouldn't put me back on it... and even taking Percocet 10's it took me 3 months to get through the withdrawals... just be careful.... Rhonda
  • Hello everyone, I don't have much new yet except i have been off of work since the 26 of Jan. I had another MRI and all the said is that I have gotten worse from the last one. I am methadone because it cheaper, he took me of gapabestine and up the Tampax I am still waiting on my appointment from Cleveland clinic hopefully I will here something this week. I have been in rehab which I found out I have one leg shorter then another. But Friday he worked me to hared and I was up all last night and in so much pain I cried half the night. I slept off and on today and did a little bit of school work and now I can't sleep and I am in so much pain still. I can;t wait for them to tell me what is wrong. I have new symptoms. middle back and I get the shakes I have lost weight no appetite, and hot flashes. This has been all before he took me off the gabs med so it not that. I am getting more depressed as the days go by. However I will keep everyone posted. Oh I am holding of on the RFA until I see Cleveland clinic...OK for now.
    shiela diodati
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