Back Pain, Spine defects and Surgery

Vickie Community Member February 29, 2008
  • I have always been a very positive person, this has been one of the things keeping me going. I was born with Spina Bifida and a Tethard Spinal Cord. I was in a accident 2 years ago, which damage 2 of my disks and at that time they found a tumor. I have had 2 Surgeries ( I am refusing any more). Spinal fusion, untethering of my spinal cord. Had a spinal leak. and now Doc's have determind one of the screws has punctured my cord and hitting a nerve. I am in Pain all the time. I have read some of the posts and surprised that I am seeing that others are going through the same things I am. I hide my pain from my husband, because I feel he is tired of hearing about it. I too have Good days and Bad days. On Good days I am still in pain, I just choose to deal. On bad days, I am bound to the couch, and let me say its demeaning. I just want to find someone to talk too that understands what I am going through. I would like to help others. Sometimes pain is soooo bad and it seems I am all alone in this that I have had thoughts of suiside.  I love my 2 sons sooo much and would not put them through a life without a mom, but its hard to deal with sometimes. I agree with Everyone who has filed SSD and had the run around, I filed 2 1/2 years ago and still on my first appeal, they always want more. I have seen 2 of there doc's and not to mention all of my doc's. To anyone out there who thinks they are alone, you are not........  Heart  VegasSunshyne

13 Comments
  • beakerless
    Mar. 11, 2008
    Sadly I don't really know because her mental illness has come between us. 
  • beakerless
    Mar. 11, 2008
    My sister went through much of the same thing you did.  She also had the tumor that had tethered her cord and they accidently found it after she went through a severe bout of depression when our brother was killed in Vietnam.  By the time they finally decided to remove it it was the size of a large grapefruit and she had lost bladder and bowl control. ...
    RHMLucky777
    Read More
    My sister went through much of the same thing you did.  She also had the tumor that had tethered her cord and they accidently found it after she went through a severe bout of depression when our brother was killed in Vietnam.  By the time they finally decided to remove it it was the size of a large grapefruit and she had lost bladder and bowl control.  She also lost most of the surface feeling in her legs.  She is now 60 years old and has had such a difficult time over the years.  Just keep coming back here when you need to talk about it.
    • Vickie
      Mar. 11, 2008
      They do not want to remove my tumor, as it has made itself part of my spine.  The Doc's were concerned that I would have the same issues with blatter and bowl control at some point, there were surprised I didn't already have those issues.  Its hard. I would have never concidered myself as depressed. I have always been told how upbeat...
      RHMLucky777
      Read More
      They do not want to remove my tumor, as it has made itself part of my spine.  The Doc's were concerned that I would have the same issues with blatter and bowl control at some point, there were surprised I didn't already have those issues.  Its hard. I would have never concidered myself as depressed. I have always been told how upbeat I am. Bubbly and outgoing. Over the past few years I feel I have changed.  My aunt killed herself and left her 2 boys (that are exactly the same age as my boys) behind. I know deep in my heart she is the reason I choose to fight. Everything happens for a reason, Right. However, I can see now how someone would concider that as an option. How is your sis these days???
  • galeyann
    Mar. 08, 2008

    vickie,

    you are a brave gal. Your sons need you!!! i have to remind myself of this too when the pain and all the hassles of dealin with it get to me. i always feel like i have to beg for everything. since i don't like confrontation i get all wired and then i have a meltdown. i think my poor husband thinks i'm nuts sometimes. Do you have anything that...

    RHMLucky777

    Read More

    vickie,

    you are a brave gal. Your sons need you!!! i have to remind myself of this too when the pain and all the hassles of dealin with it get to me. i always feel like i have to beg for everything. since i don't like confrontation i get all wired and then i have a meltdown. i think my poor husband thinks i'm nuts sometimes. Do you have anything that you can do , as a hobby, to take your mind off the pain. I like to make jewelry and to paint. if the pain isn't too bad these are things i can think about for a while. It makes me feel alil more useful when i can accomplish something.

     i also lead a chronic pain support group in my local area, that has been a very positive part in helping me to cope.

    hope you can find someting to help you,

    Gale

    • Vickie
      Mar. 11, 2008
      THANK YOU, I really needed that today. I have had  few bad bad days w pain, today is somewhat better. I also just got denied a reconsideration from SS.  I can't seem to stop crying today. My turn for the meltdown I guess.  I have been taking Cymbalta, I thought that it was helping. I am trying everything I know to get out of this slump I...
      RHMLucky777
      Read More
      THANK YOU, I really needed that today. I have had  few bad bad days w pain, today is somewhat better. I also just got denied a reconsideration from SS.  I can't seem to stop crying today. My turn for the meltdown I guess.  I have been taking Cymbalta, I thought that it was helping. I am trying everything I know to get out of this slump I am in.  I called a lawyer today to help me with SS, I started crying on her.  I don't understand how we pay tons of money into programs that are suppost to help in need, and when we are in need you can't seem to get the help.  A neighbor of mine is one of those sucking the system with no medical issues and very capiable of working and she has everything paid for her from rent to bills to everything. I have a major issue and cant get any help from anyone.  I know what you mean about your husband and getting all wired.  I think we hold so much in and then we are like volcano's and erupt. spew everywhere.  I would love to talk more with you, if you ever need someone I am here.
  • sherry
    Feb. 29, 2008
    First of all let me say, get some help with the suicidal thougts. Many pt's with chronic pain become depressed. I have a wonderful nurse practioner that I see and she routinely asks me if the pain is becoming depressive. I have scoliosis and DDD with resulting left leg pain and chronic left hip bursitis. I had a cervical discectomy and fusion, a L4-5 and...
    RHMLucky777
    Read More
    First of all let me say, get some help with the suicidal thougts. Many pt's with chronic pain become depressed. I have a wonderful nurse practioner that I see and she routinely asks me if the pain is becoming depressive. I have scoliosis and DDD with resulting left leg pain and chronic left hip bursitis. I had a cervical discectomy and fusion, a L4-5 and L5-6 foraminotomy and 4 epidural steroid injectons between L3-4. Now one of the pain management specialist wants me to have a  neurostimulator inserted. I'm not sure yet if I am going to do this, but about 90% of what I have heard about these are postive. I think that the most important thing that a person with chronic pain do is get a GOOD pain management specialist. I am not always thilled with mine but he does listen to me and is open to suggestions. Also, his nurse is a gem! Second, don't feel guilty about having chronic pain. You didn't ask for this and I can't think of a sane person who would. Share your feelings with your husband. I, too, get the feeling that he is tired of hearing about my pain, but how else is he to understand. I've had several people say, "I didn't think that your pain was that bad because you don't complain about it much" Basically, if you complain too much you are whiny and want attention, but if you don't complain enough they don't believe you! It's no wonder we get depressed. I've had a few doctors say, "Well, it can't be too bad if you're able to work." Sorry the bill collectors don't care if my back and leg hurts. Sorry if this sounds like a wondering diatribe but I'm just throwing a few thoughts out there. Please feel free to write back. It definately helps to talk to people who understand, Sherry
    • Anonymous
      vickie
      Feb. 29, 2008
      Sherry you are spot on.... Thank you.  I agree it helps to talk about it.  My friends have no idea how bad I hurt, I usually distant myself from them when Its real bad. I have seen so many doc's one is currently being sued due to lack of attention after a surgery.  My Pain Spec Doc is Awsome he seems to be the only doc who wants to help and...
      RHMLucky777
      Read More
      Sherry you are spot on.... Thank you.  I agree it helps to talk about it.  My friends have no idea how bad I hurt, I usually distant myself from them when Its real bad. I have seen so many doc's one is currently being sued due to lack of attention after a surgery.  My Pain Spec Doc is Awsome he seems to be the only doc who wants to help and not out for the green backs.  I have had 2 injections prior to surgery and 1 one after, unfortunatly with no relief.  I have tried PT with 2 different place's without any relief.  I have that same left leg pain, my damaged disks are L4 L5 as well. Lately the pain in the inside ankle has been unbareable, meds don't relieve any pain. I never want to be a burden and got out of my Turtle shell (brace) so quickly, of course wanted to be healed overnight-who doesn't..... LOL What do you do when to help keep your mind off the pain.  I took up Cake Deco and Pogo (a game website) I find it therapeutic. You are still working?  How do you deal? Thanks for sharing
    • sherry
      Feb. 29, 2008
      My favorite is Word Whomp on Pogo! Yes, I'm still working. 90% of the people at work are very understanding. Last week though one of my co-workers was upset because I'm going from 12 hr shifts to 8 hr shifts (still 36 hrs/week). My boss is actually the one who suggested it. She is very understanding about my back and tries to help in any way she can....
      RHMLucky777
      Read More
      My favorite is Word Whomp on Pogo! Yes, I'm still working. 90% of the people at work are very understanding. Last week though one of my co-workers was upset because I'm going from 12 hr shifts to 8 hr shifts (still 36 hrs/week). My boss is actually the one who suggested it. She is very understanding about my back and tries to help in any way she can. Anyways, this co-worker, who thought was a friend said in front of about 8 other co-workers during a meeting, "you should just have a real back injury so that everyone believes you." I was speechless at the time. I chose to ignore her. Apparently, unless you fall and hurt yourself or lift something and herniate a disc you can't have real back pain. About an hour later we ended up in the elevator together (just us) and she apologized for "how that came out" I told her it shouldn't matter to her if I work 8 or 12 hr shifts as long as I'm working my 36 hrs/week. I did get a kick out of the fact that she made herself look like an *** in front of a group of people, but only apologized in front of me. Anyways, I do find it interesting that i work in the healthcare field and I hear so many uncaring and unprofessional comments about people with chronic back pain. I recently joined the Pain Management Committee so I'm hoping I can bring some insight into the area. I find it hard to keep my mind off of my pain when it's bad. It seems that the only thing that helps is to lay down. Too bad I can't work from bed, but the only profession I can think of that does that is illegal (haha). Are you able to work? How long have you had chronic pain? Talk to you later, Sherry
    • Vickie
      Feb. 29, 2008
      Im vegassunshyne35 if you ever want to play. July will be 3 years of pain. I stopped working in Oct that year and have not  been back.  Cant stand for too long or sit.  Cant lift anything over 5 lbs. I use to sell New Homes and Love that job. I unfortunatly have a weak leg which causes me to trip/fall and I am a huge liability to an employer....
      RHMLucky777
      Read More
      Im vegassunshyne35 if you ever want to play. July will be 3 years of pain. I stopped working in Oct that year and have not  been back.  Cant stand for too long or sit.  Cant lift anything over 5 lbs. I use to sell New Homes and Love that job. I unfortunatly have a weak leg which causes me to trip/fall and I am a huge liability to an employer. I really just like to help people I would like to find a way to do that now. So glad you have understanding boss/co-workers with exceptions of course. So sad for that one girl, so has no clue.
    • sherry
      Feb. 29, 2008
      I work as an RN. I just grit my teeth at work. I'm glad that I'm going to be working 8 hr shifts. I also have a hard time standing or sitting for any length of time. If I can alternate that is the best. I'm off on medical leave right now. I had lap-band surgery on Tuesday. I go back on March 18th. Because the doctor also repaired a hiatla hernia...
      RHMLucky777
      Read More
      I work as an RN. I just grit my teeth at work. I'm glad that I'm going to be working 8 hr shifts. I also have a hard time standing or sitting for any length of time. If I can alternate that is the best. I'm off on medical leave right now. I had lap-band surgery on Tuesday. I go back on March 18th. Because the doctor also repaired a hiatla hernia I can't lift over 10# for 8 weeks. I'm sure that the one co-worker I've been having trouble with is going to love me for that! I'm hoping that by losing weight I can alleviate some of my back/leg pain. My boss is so funny...she e-mailed me today to see how I was doing and then said, "oh yeah, I'd really be interested in all the clothes that you outgrow since I can't seem to stop growing!" I told her it would be awhile, but I'd keep her in mind. It is weird not hardly feeling hungry at all. Today I had a total of 540 calories and I feel stuffed! I haven't done word whomp for a while but maybe I'll try it tomorrow, Sherry
  • Kimberly175
    Feb. 29, 2008

    Hi Girl, My name is kim. Welcome to this CPC site. :) Its always great to talk to new people and get others views on life with chronic pain. You can read in my prior posts that i deal with the same things you deal with. Im in constant pain EVERY DAY. Yes, i do have better days then others, but the pain is ALWAYS there. Do you feel like your pain didnt...

    RHMLucky777

    Read More

    Hi Girl, My name is kim. Welcome to this CPC site. :) Its always great to talk to new people and get others views on life with chronic pain. You can read in my prior posts that i deal with the same things you deal with. Im in constant pain EVERY DAY. Yes, i do have better days then others, but the pain is ALWAYS there. Do you feel like your pain didnt really get bad until after your accident? or have you always been in pain? Are you on pain meds for it? i did so well as far as not having to take the meds, and just trying to get my life on track but its hard!!! i finally just wanted to get my body back to normal. So, after a long struggle (and let me tell you, it was long!!) after being on meds for the last 2 yrs since my surgery, i took myself off the meds completly. Its been just recently that i decided to get one of them refilled and i felt like id be good with them, and only take them when it gets REALLY bad. Ive been doing good so far and i have only been taking it when things are unbearable.

               Im going to see another new surgeon (this will be surgeon #4) to try and get once again another opinon on what to do with my back now. I unfortunatly DONT know what caused my pain, it started slow and then got severe. I went in to my primary doc, he ordered an MRI for me...and then a few days later he called me and said "kim, this isnt good. can you come in to see me?" i was thinking to myself, what could be wrong? its probably a sprain..... well...it wasnt. I had 3 herniated discs, 1 that slipped, 2 pinch nerves on each side, bursitis in both my hips, and ya, more and more things just kept coming up. I was later diagnosed with seziures which impacts a big part of your life. It makes you life in a constant fear that i may have another one at work? or at home? ive fallen many times during them and blacked out....what if im driving and it happens? or im at work and it happens? how embarrassing. I always thought only weirdo's had seizures. lol. After all the tests i had done for them, they really couldnt give me much direction on how long i may have them or what they were caused from. They do know however, that it has nothing to do with my meds or being on or off them the way i am.

    Sorry im rambling!!! i just wanted you to get to know a little about me and some of the struggles i have been through. No they arent exactly likes your's, but the pain is the same for us all unfortunitly. Tell me more about you if you'd like. Id love to hear back from you and continue chatting. 

     Hope all is well with you, and i will keep you in my prayers. Heart -Kim

    • Vickie
      Feb. 29, 2008
      Kim, Thanks for sharing. I hear ya on the good and bad days. And I have learn pain is pain no matter when it is coming from. I was always so glad I didn't get bad Migrains like my mom, husband and friends. or bad PMS. but no matter the source its pain. You know I wanted to be better right away, I am not very patient. but I have learned over the years that...
      RHMLucky777
      Read More
      Kim, Thanks for sharing. I hear ya on the good and bad days. And I have learn pain is pain no matter when it is coming from. I was always so glad I didn't get bad Migrains like my mom, husband and friends. or bad PMS. but no matter the source its pain. You know I wanted to be better right away, I am not very patient. but I have learned over the years that nothing and I mean nothing happens overnight. I got out of my Turtle shell real fast, ditched the walker, skid past the cane, jumped into PT. Refused any more pills. With the mind that I would concour all right away, unfortunalty that did not work. So much pain......  so many different emotions....  recently I started Cymbalta to help me sleep at night (and to help deal with the pain) It really does help mentally, but not a pain reliever,  I am still on that and my Pain Mgmnt doc put me back on pain relievers, I am better for sure but not where I would like to be. I cant believe how nice people are to share their expiernces with me.  I was really feeling alone..  Hiding pain from loved ones is so difficult.  Thank you from the bottom of my heart....
    • Anonymous
      lavender
      Nov. 30, 2013

      Dear Vikie and all,

       

      I am now joining the group. Mine is quite similar to Vikie. I was born with congenital henivertebrae at thoracic level. Started experience pain since my uni days. Got laminectomy 10 years back and now a 2nd surgery with 6 screws inserted. Unfortunately, got a severe major spinal leakage 10 days post op and thus ended up in an open...

      RHMLucky777

      Read More

      Dear Vikie and all,

       

      I am now joining the group. Mine is quite similar to Vikie. I was born with congenital henivertebrae at thoracic level. Started experience pain since my uni days. Got laminectomy 10 years back and now a 2nd surgery with 6 screws inserted. Unfortunately, got a severe major spinal leakage 10 days post op and thus ended up in an open repair surgery again. I thought I would die leaving my 2 sons but God has cured me in a miraculous way, I would say. I am now in 3 wks on the road to recovery, but still traumatised and all the time anxious about the mishap, cos the doctor said it has to be blind sealed without knowing where the exact point of leakage. I still cannot get rid of my pain killers though I try not to take more than twice a day. Just have to live with it the rest of my life. At least I have friends here with same problem. 

       

      L

Helpful Tools and Devices How to Make Life with RA Easier

Most Popular

Costs and Insurance
10 Affordable Pain Solutions