Page 1 of 2 12 LastLast
Results 1 to 10 of 20

Thread: Return to Forever

  1. #1

    Default Return to Forever

    Hello all. I have not posted in many years. I am not sure if any one would remember me. I have been struggling along in constant pain trying to keep my "New life" alive. It was nice for a time. I just could not keep the pace. Little by little it slipped away as I am sure many of you have either experienced or know someone who has. Chronic pain is like a relationship eating cancer.And so I have gone full circle. Once again completely alone. My only constant is the pain that will be with me until I die. Right now I am raw. I hope in the future I will be able to be a helpful member of the forum. It is amazing reading a post from someone who is just beginning their fight with pain. How different their perspective is. How much hope they have. How much fear they have when the realization hits that their whole life is changing. I will need to update my profile to include the many surgeries and procedures. Supposedly I was the second person in the USA to have pedicle screws, clamps, rod, etc. removed endoscopicaly (spelling anyone) Yes it was some many years back....when I was still hoping to return to a "normal" life. I would have done anything, tried any procedure; and so I did.I wound up with a nasty torn Dura for my trouble. Idiots tried to stitch it closed. The dura is like wet tissue paper when it is in the sacral region. The story goes on from there. Spinal fluid drain, "super glue patch", blood getting in the spinal fluid, coagulating the tiny nerve fibers, 911 and an ambulance ride with pain that nothing in the hospital could touch. Morphine, Fentanyl, any more narcotics would have ended my life and it didn't even take the edge off. It came in waves. Screaming uncontrollably. I am not a light weight either. Nerve pain for years at that point, fusion through the anterior, posterior revision and many endoscopic spinal surgeries. Both knees rebuilt prior to that due to dislocations. None of that could have prepared me for the pain of blood drying on the nerve fibers in my spine. Death was a welcomed option at that time. They tried dissolving the "dried clumps" with steroids with some success. Of course that was only until they punctured the patch! Now I have a slow Spinal fluid leak that is buried in scar tissue and hence is in operable, or at least the odds of making me worse are far greater than making and repair or even finding the leak. So now if I move around too much or am "vertical" too much I get a spinal headache. It sounds like a large truck is parked outside in the driveway...but there is not....it's just in my head...Plus as a bonus when you are low on fluid some of the nerve fibers can touch where they are not meant to. that is always a special bonus pain. And there is more...so much more. How can I blame my spouse for getting out. I thought it would be different this time. She knew what she was getting into...She helped me through some of it. But it, I am such a burden. She can't have a "normal" life with me. I can't go places, I can't work, I can't sit for more than 10 minutes, nor stand for more than 10 minutes... And even that little bit I pay for with more pain.I can't get out of this life of pain...but she can. I will miss her horribly...But she is already gone. She is no longer the caring special angel that saved my life...well at least not for me she isn't. the cancer got to her. It is so hard to love someone and know that although they did love you, they now have only anger and resentment in their heart for you. If you love someone-set them free..will I ever be free? I'm sorry for this post. I'm sure it is not appropriate, not in the right forum. I really just wanted to see if any "old timer" remembered me but got off on a rant...I have no one to talk to and it was quite painful writing this as I now realize so I can't just delete!!! Please accept my appologies and to the moderator(s) I won't go off topic again.

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    2,290

    Default

    Hoban, thank you for writing of your situation and your pain. You don't have to apologize to anyone for your honest words. They are heard.

    ANN
    There comes a time when silence is betrayal.- MLK

  3. #3
    Distinguished Community Member Ging's Avatar
    Join Date
    Mar 2007
    Posts
    288

    Default

    Hoban,I am from a different forum, I am sorry you have the one pain that you shouldn't have had...heartache. I know that has hurt you to your very soul for your spouse to bail on you, I hope in time you can forgive her. Loneliness can be very painful in it self...I know this. I hope you find some relief from this pain ,both emotion and physical. You can also post on the emotion forum and you may find others who are in similar situations. :) GING

  4. #4
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    S. Indiana
    Posts
    1,022

    Default

    hoban, I was so hoping that having you missing meant that you had overcome all the spinal issues and living the life you wanted. Sorry to hear that you are back with even worse pain now as the emotional pain of losing a spouse because she can't take any more is tough. Physical pain is bad enough but you are dealing with the emotional pain that comes from chronic pain. Even without losing a spouse CP causes us emotional pain because the life we knew has left. Nothing we can do, at least so far, can bring our life back to us. I wish there was something I could say to relieve your pain but I know there isn't as that peace has to come from inside each of us. It is good to have you back so you can share your experiences and the things you deal with today.
    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

  5. #5

    Default

    I remember you too Hoban, well at least your name, not necessarily the particulars as I have trouble with those things. Like Mark I had hoped your absence meant good things, I'm so sorry it was actually worse than ever. So many people don't realize just how much chronic pain affects EVERYONE, not just the one suffering the actual pain.

    Please know that you are welcome to post anywhere you feel comfortable! You have spine issues so your post is absolutely appropriate here! We have an on-going "Pity Party" thread that touches every part of our lives, some days it's a happy place, others it's ranting! And as other posted, there is an emotional forum. You post wherever you feel most comfortable, there will always be someone to find you :)
    -Fused L3-S1 (3 surgeries, last one 1-12-11)
    -4 Surgeries for infections, last one 2-15-11
    -T-spine 11-12 cyst, 7-8 deformity, DDD throughout, and stenosis at several levels

  6. #6
    Distinguished Community Member Ging's Avatar
    Join Date
    Mar 2007
    Posts
    288

    Default

    Hello Hoban, I do hope you are better today.
    I want to apoliogize if I made you feel you were to post in a different fourm, I have just recently found out that when we have major health issues it affects our whole self. I always stayed in my aneurysm forum until I found I was having other parts of me being affected by it. I have found the people on here to be the most compassionate I have ever come in contact with. I have been going to the new post and hope to welcome people I haven seen before, I am glad you came back because we all have something to offer each other no mater what our health issue is...we all feel pain both in our bodies and in our hearts so we do relate to each other.
    Again I am sorry if I made you feel like you were posting in the wrong place, I am so happy to know you came back to get the support you need . I am one of those people that doesn't word things just right.. like I mean it to be. Take good care, Ging

  7. #7
    Community Member
    Join Date
    Oct 2006
    Location
    Michigan
    Posts
    76

    Default

    Hi Hoban! I'm a little late in posting this, but I remember you!! I'm an oldtimer from way back, like Mark & Melanie -- and I too was hoping that your absence meant that you were doing well.

    I'm so sorry to hear of all the problems you've had. This pain affects ALL areas of our lives, including our relationships --- and it breaks my heart that your wife left. That's kind of hitting below the belt in my book. Jeez, you had enough problems already without her adding to it.

    I PRAY that your pain is better controlled! There MUST be something that can be done. I realize the emotional pain is pretty rotten too, and perhaps counseling can help ease that. Therapy for me has always been helpful for things like that.

    And please don't apologize for your post -- if you can't talk here, where CAN you talk? I'm glad you came to us. We certainly understand. God bless and please keep coming back, ok? Good to see you again. Hugs, Lee
    Recovering alcoholic, sober since 7-29-93;
    severe DDD; sciatica; osteoporosis, osteoarthritis, 2 spinal surgeries, SCS implant & removal, morphine pump trial-didn't work, umpteen injections/epidurals/trigger points,rhizotomy, Racz procedure, etc., therapy, 4 more herniations, now inoperable; lumpectomy, radiation therapy~breast cancer survivor,fibromyalgia;depression; heart attack. On disability.

  8. #8
    Distinguished Community Member puddykat's Avatar
    Join Date
    Feb 2010
    Location
    WI
    Posts
    160

    Default

    Hoban, I don't remember you as I haven't been on BT that many yrs. You're in right place to post, so don't put yourself down. There's also Emotional Support and Under Spinal issues is Pity Party Room....we talk anything there be it good/bad, great place to rant/rave if necessary. I feel so bad for you and your pain levels. Hopefully in near future you'll be able to find some meds that will help you......Please hang in there, hang in here, write as often as you need to; we're here for you!
    gentle hugs, kat :)
    TMJ/shoulder/parotid tumor surgery, Scoliosis, Lumbar fusion for Spondylolithesis; now in entire spine. Herniated cervical disc, no surgery, high risk/Vascular Dementia (VaD), Breast Cancer survivor 12 yrs, Fibromyalgia, Osteoarthritis. Rapid transit small bowel/no weight gain, IBS, 'cusp'/Crohns; Diviculosis; myoclonic dystonia. VaD, my 8th yr, causes tia's, seizures, strokes, Parkinson's, Lewy Body Dementia

  9. #9
    Community Member Smiling Angel's Avatar
    Join Date
    Oct 2006
    Location
    New Jersey
    Posts
    45

    Default

    Hi Hoban, I remember you from the old forum as well, having been around for more than ten years. I am so sorry for all the pain and setbacks in your health that you have been going through. On top of that, you certainly don't need or deserve the extra heartache of having your spouse leave you in the midst of all your pain. When I read about your torn dura and the efforts to repair it, it really hit home for me. Ten years ago, I underwent my second spinal surgery in as many years, the second one being a lumbar fusion at L4/L5. I went to the best, luckily, so when my surgeon was in there working on my fusion, he found a tear in the dura from scar tissue from my first surgery, and, thank God, he was able to repair it without a problem. My only side effect was that I wasn't able to sit up for over 24 hours after my surgery to prevent spinal headaches. I wish there was something any of us could do to help ease your pain, but, rest assured, we are always here to listen and offer the only thing we can - emotional support. Hang in there, and I hope you come back to this thread to let us know you are still around and participate in this forum, or any other forum in which you feel comfortable. Offering you lots of gentle cyber hugs and prayers that we can at least give you an outlet for your 'rantings'. That's the best part of being here, knowing we can express ourselves, complain all we want and still find acceptance here.
    My avatar is of my daughter, Andrea, who we lost in a fire on 1/18/11

    ** Hx of an L4/L5 fusion w/ hardware in April 2002 and taking daily pain meds;
    ** proud Grandma of three grandchildren, Angelo, 11/11/05, and Julianna, 1/3/08, and Penny, 6/20/13

  10. #10
    Community Member marijo's Avatar
    Join Date
    Oct 2006
    Location
    Cumbria
    Posts
    27

    Default

    Hello, I don't post here much either.I sympathise with you pretty much 100%. I had a botched fusion L4/5 in 2003. Screw went through spinal canal just missing cord. Painful, so three years later, at another hospital The metal was removed, and More put in at L3/4. The damage had been done though and all the nerves were jiggered. I had several prolapses, and lost reproductive organs, which I no lover need, and large intestine, and everything below it, so I don't absorb medication well, or food, and I have megaloblastic anaemia and under active thyroid, and chronic chronic neuropathy and mechanical pain, and to crown it all, permanent tinnitus. I agree with you that it wrecks relationships, because pain that doesn't leave you stays in your mind all of the time, and gets you really down. I don't think my husband will leave me, but he never asks me how I am. I've had about ten major ops, and a few little ones also, and only once did he come to take me home. He does work abroad so its not all his fault. The night before I had my bowel removed he called me in hospital, asked me what I was having done, and asked me could'nt I change my mind!!! Now I try very hard not to talk about it, and he never asks, but it still butts into our life, because I don't feel great a lot of the time. I am lucky though because I have four fantastic children, all grown up, and even though I don't see much of them, I get on terrifically well with them. We have moved so far apart that we are like strangers who just happen to live in the same building, which is large, so we can go for hours without seeing each other. All our habit are different. He is not very well at the moment, so has spent most of the last three days in bed asleep. Normally he sleeps for ten hours a night. I sleep for for or five on a good night. For me its not all bad, because most of the time I have a good sense of humour, and I try very hard to distract myself, and keep busy, and it does not take a lot to make me happy. Its great to recognise some of the old names. Hi Jacqui, will mail you soon, and Mark, Hope you are OK. I recognise Your name also Lealle. I first started posting here in 2002. Ten years ago. There have been some changes since then haven't there? Hugs to you all, and Hoban, I hope you feel a bit better soon.
    cardiac ablation 1997. prolapsed disc 1992. L5S1 fusion 2003 (failed, bad screw in spinal canal) Lumpectomy 2005, Carpel tunnel bilateral 2005.Prolapses bowel, bladder, uterus, V. Vault rectocele,repaired.2005. Sacral implant failed 2006. further prolapsed bowel. Subsequent ileostomy, removal of colon, rectum,. 2009. removal of bad screw, more metal work L4/5/S1 to stabilise.2010 cervical ADR 2 levels. Hypothyroid. retired 2003, further cervical stenosis problems. on pension& disability

Page 1 of 2 12 LastLast

Similar Threads

  1. Replies: 6
    Last Post: 03-05-2012, 12:10 PM
  2. Could we face the return of CJD? Experts fear it may lie dormant in thousands
    By flatfish in forum Creutzfeldt Jakobs Disease (CJD)
    Replies: 0
    Last Post: 11-01-2011, 12:30 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.