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Just needing to vent and get it all out to people who understand

Sorry in advance for the very ranting post that is about to follow - I'm having one of those days that has got me to a very low point and I just need to get it all out in the air with people who understand and aren't going to judge me for it.

I've had back issues for the past 5 years since herniating 3 discs at work.... Follow 18months of conservative treatments I finally had a microdisectomy at l5-s1 in January 2011. From there I had almost 2 years of reduced sciatica and leg pains, until December 2012 when my leg randomly started catching fire. Since then I've been bounced back and force between the neurosurgeon and my pain management specialist trying to identify a cause of the problem, and then some form of solution....

For the past 10 months I've been on a combination of lyrica and cymbalta to try and relieve the burning and numbness sensations in my leg and foot - with limited relief. About 4 weeks ago I fell after losing all feeling in my foot - not great when you already have a sore back. I had a SPECT CT done a few days later (it was already planned) which revealed that I have a L5-S1 herniation again... So back to the neuro to see what he wants to do - if it's bad enough he's already flagged that he would fuse it (based on discussions held after an earlier scan which ended up showing no herniation)...

The pain management specialist wants to trial a Spinal Cord Stimulator, which we've just got approval to do - but with the new herniation appearing in the scan I don't know if they'll be able to trial the SCS without first correcting the disc problem.

I thought I was coping well with all of this back and forth, but I've realised today that I'm not... I was due to see the neuro today to get a final decision on if he will operate to fix the herniation, or if the herniation is irrelevant and the SCS is the way to go... I got a phone call this morning to say that the neuro had been called into emergency surgery and hence would not be able to see me today.

I was shattered when I got that call... I'd barely managed to get through the past few weeks with the pain I've been in, but each day have convinced myself I can get through it knowing that an answer was just around the corner - only now it's not just around the corner, it's another 2 weeks away.

That's another 2 weeks of not knowing if I'm going to need 0, 1 or 2 surgeries to fix my problems... It could be that they need to fuse before they can do the SCS implant, or maybe they don't need to fuse, or maybe now they want to wait some more and see what happens with the disc before they make a decision.

2 more weeks of wondering if I should just go ahead with the SCS trial or if I should wait and see what the neuro says... If I call the pain specialist today I could potentially have a date for the trial booked before I can even see the neuro...

I'm just so sick and tired of being in pain and not knowing what's happening... The drugs don't work, they just leave me feeling groggy, yet not enough to allow me to sleep properly. I just want to cry - all the time! I'm at work, but I honestly don't know why I bothered coming in because I would hardly say I've been productive... I'm sitting here watching the hours tick by on the clock, just hoping 5pm will come quickly so I can go home and not have to talk to anyone, not have anyone ask how I'm doing and then tell me that I 'look fine today, what are you complaining about?"

I don't want to have to explain to friends that I can't come out cos I'm so much pain that I can't find the energy to move.

I don't want to have to tell work that I'm sorry I can't come in because the pain is making me nauseous,

I don't want to keep taking the medication that is seemingly doing nothing.

Basically I don't want to keep feeling like this. I want to have my old life back where I was pain free and everything wasn't a toss up between how much extra pain it was going to add to my already horrible pain levels and how much it will upset everyone else if I don't go.

Right now, I don't even care how much it would upset people if I don't go to activities, I don't want to talk to anyone - I've been spending my lunchbreaks in my car down at the local park so I don't have to explain myself to anyone - no one can ask me how I'm going, which means a) I don't have to answer and then mould my answer depending on who asks and then lie to them and say that I'm doing ok, when if I tell them how bad it is they'll just give me a look of pity , and b) I can just be - and if the pain is so bad I want to cry I can without anyone judging me for it.

Most of all I'd like to get back to normal so my husband doesn't have to keep living with his wife the cripple, the mentally exhausted and depressed excuse for a human that I've become... It's not fair on him to have to deal with me being like this... Even though he's been with me since before my original injury, I know it's not easy on him seeing me like this -

Sorry for the rant - like I said, I just need to vent and get this off my chest.

Thanks for reading and I hope you're all having a better day than I am
July 2009 - L1, L3, L5 disc hernation
Jan 2011 - L5/S1 Microdiscectomy
Dec 2012 - return of neural symptoms
June 2014 - fusion recommended - awaiting insurance approval


  • I wish I could reach through the screen and give you a hug, a light hug. I feel similar to you in a lot of ways- I have always been concerned about my relationship with my husband. I felt like a burden- or as you put a mentally exhausted and depressed excuse for human- have you ever talked to him about this feeling? I talked my husband about it several times, and for a while it didn't matter what he said, I still felt this way. I don't know if it clicked, or if it was time that made me feel better, but I do now. But like everything else, there are good days and bad days.
    Talking about work, keeping up with social activities with chronic pain- felt same way you do. Letting people down, and then finally not caring if I let people down, I just couldn't do it.
    Is there any way you could call your doctor (the one you won't see for two weeks) and ask if you might have the surgery with a herniation? I know how desperate you feel when you are close to having a surgery, or a procedure that might help your pain, and plans switched or are suddenly uncertain. I saw you are on cymbta and lyrica, anything else? Heat or ice? Anti nausea pills....anything that might help?
    I hope you are doing better today.
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • Thanks Lmr.
    When I read your reply, and then your list of surgeries I felt bad for complaining about my situation. It sounds like you are having a far worse time of it than I am.

    I am doing better today - mentally at least.. I've come through what I'm hoping is the worst of it and am focussing on trying to get better...

    I found out that I've got approval for my SCS, so we're underway with getting the trial of that organised - all pending the outcome from the appointment with the neurosurgeon in 12 days time.

    I have spoken with my husband a number of times about how I feel, and about what effect it's having on both 'us' and him... He keeps telling me that he'll keep on supporting me and will do what he can to help me get better... I believe him when he says it, but it still hurts knowing how much he's giving up to help me out with things.

    I've decided that I need to do what I can to get through - I've made an appointment with a psychologist to talk things through - just so I'm dumping everything on to my husband - and just to get an unbiased sounding board to talk things through. I did it a few years ago when I was really struggling before my first surgery and I found it useful, so I'm going to try it again and see if it helps.

    No update from the neurosurgeon as to what he wants to do - he wants to see the scans first before he comments - he's been close to wanting to fuse it before, so the question is is this herniation better or worse than the one that was let go last time. Based on the report, it'd say it's worse, it's definitely more obvious to me on the scan than the last one was, and my symptoms have got worse, so based on that I'm preparing myself mentally for the fusion (and then postponing the SCS) until after that settles to see if it's still required... I read somewhere that if there is a mechanical reason for the pain then they won't do the SCS anyway, so if they need to fuse then the SCS will have to wait.

    There's just so many unknowns at the moment... Again I'm at work reading forums, trying to gather as much information as I can about different procedures so I can make sure I have my questions ready for the doc depending on what he says... Also trying to track my symptoms - the burning feeling is spreading through more of my foot - when it started it was just my lateral calf just below the knee with a numb sole of my foot, now the numbness has gone and the burning has spread to my heel and today right down to my 3 smallest toes... Not a great start to the weekend.

    Fingers crossed there is some improvement over the weekend - either that or we can always hope that my GP can get my neuro appointment brought forward when I see her on Monday for extra pain relief... I'm already trying heat/ice/TENS in combination with the lyrica and cymbalta - yesterday I also went to the pool to try and walk in the water - just left me feeling worse - which was upsetting because I love the pool and usually it's the one thing that I can count on to make me feel better... I think I might just have to accept that things might get a little worse before they get better - but hopefully not too much worse, or for too long...

    Thanks again for your words, they really did help me put (and hopefully help) keep things in perspective... Will keep you updated on how I go with all the doctor appointments.
    July 2009 - L1, L3, L5 disc hernation
    Jan 2011 - L5/S1 Microdiscectomy
    Dec 2012 - return of neural symptoms
    June 2014 - fusion recommended - awaiting insurance approval
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  • Lmr106LLmr106 Posts: 117
    edited 05/30/2014 - 8:04 AM
    So glad you made an appointment to talk with a psychologist! I started seeing one (again) when I had to resign from my job. It is great to have a sounding board, and some of her ideas have really helped me. Are you going to one that you saw last time? It helped me to have a relationship already with her. When is your appointment?
    Please don't feel bad! We each have struggles that people, even the people on here, don't know about. It's not fair to compare and say I can't complain because I think my pain is less or more then someone else.
    I'm happy to hear about the SCS being approved! I hope that has helped with the feelings of uncertainy. For me, that's always been the hardest part. What is the trial like for it? Before I got my pain pump, I had a trial, and it was just like a reverse spinal tap. My doctor put the needle into my spinal canal, but instead of taking out spinal fluid, injected the medication that would eventually go in the pump. I then had to stay at his office for several hours. Went very well.
    I'm glad to hear that you are able to talk to your husband- something that my husband told me that might be going on with your husband, family, and friends- it hurts for them to see me hurting. I realized that when my husband tells me to stop crying, it's not because he doesn't care, he just doesn't want to see me in that pain.
    Sorry to hear about the new symptoms for your foot. I didn't use to keep track of my symptoms, but I started about a month ago to try to find a pattern.
    I am a little confused, probably because I have only had one doctor for everything. Who would do the SCS surgery? Do you have a pain management doctor and a neurologist? I did have consultations with other doctors, but one doctor did the surgery, following procedures, and injects the pump when I need it refilled. He also prescribes all my pain meds, but for other meds, including my antidepressants, I still go to my GP, just like before I started to see him. I also had a TENS unit, actually I still have it. Does it help you?
    I hope you are doing okay, sending positive thoughts.
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • So the past few days have been pretty tough. I went and saw my gp yesterday to get a referral to the psychologist (here we can get a rebate/reduced price with a referral).

    I ended3d up breaking down in her office and crying for about an hour after I left there. She's given me a letter to take to the psych to explain what's going on.

    She's also written me off work for a few days to try and give me some time to deal with everything. I told her that I can't keep pretending that I can cope with the pain and what it's doing to me so she suggested that I stop pretending and accept the pain rather than trying to ignore it.

    I'm booked in to see the psych next Wednesday. Same day as the neurosurgeon.

    The SCS is being recommended by my pain management doc. Yhe reason for the neuro appointment is that my latest scan shows another herniation so there's a possibility that the SCS isn't going to be the best course of action right now.

    My husband was amazing with me last night when I started crying again. He told me I don't ever have to pretend to be ok when I'm not and he will do everything he can to help me get better. I am constantly amazed at what he will do for me. Not because I thought he didn't care, just because of how far he will go to help me out.

    I'm still trying to get my neuro appointment brought forward so I can get some certainty. You're right. Not having any certainty on the way forward definitely makes it harder to deal with.

    Fingers crossed we can get some answers soon. I don't want to get attached to the idea of the SCS only to find out that they want to do something else -that will just put me in a spin again.

    Hope your pump is providing you some relief. Will update you again once we've got some developments.
    July 2009 - L1, L3, L5 disc hernation
    Jan 2011 - L5/S1 Microdiscectomy
    Dec 2012 - return of neural symptoms
    June 2014 - fusion recommended - awaiting insurance approval
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