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Feeling like life isn't worth living

Oct 05, 2016 11:16 PM

Hi all. My name is Sam. I'm 37 and I've had severe nerve pain/sciatica from a herniated disc on and off since 2013. I had an endoscopic microdiscectomy in 2014 that fixed the problem. It lasted for a year and then re-herniated last winter. I tried injections etc knowing full well it wouldn't work. Had another microdiscectomy about a month ago. The disc re-herniated two weeks later. I'm now worse off than I was before the last surgery. The pain is so bad I can barely leave my apartment. Luckily I have a job that allows me to work from home for the time being.

My doctor is now telling me that the only thing I can do is have a fusion. I'm desperate to find any other solution, as I don't know a single person who has had a good outcome from a fusion. At this point life doesn't feel worth living. This doesn't feel like living, just existing. How do I keep going?

Oct 05, 2016 11:26 PM

I'm so sorry to hear your in so much pain SamIAm. I can't say I know how you feel because my pain isn't in my spinal cord. And how can anyone say that unless they walk in your shoes even w/ the same condition.
But I can say life is worth living even when 90% is in pain.
Having issues w/ this post timing out.

Oct 05, 2016 11:31 PM

Im sorry this is hapening to you.. i completely understand i the the exact same issue L4 L5. Also had it since 2013. The nerve pain is horrible. Im on lyrica but it doesnt really work. What pain med have you tried? Tramadol works alright for my back pain. I really hope things get better for you. Gentle hugs.

Oct 05, 2016 11:34 PM

My twin brother is disabled do to herniated disc & he had 3 surgeries he said the same as you he feels worse after the surgery. He said the only relief he gets is aquatic physical therapy.

Glad you found all of us here. So when you feeling like throwing in the towel we're here for you. Anytime you want to message me I'll be there (unless I'm asleep unfortunatly I don't hear my phone beep or ring these days).

I'm not here to judge just to listen. I can say everyone else on here is nonjudgmental too. We get enough of that from family, co-workers, Dr.and friends. We don't need that here. We here know despair & ventilate anger.

I say one day at a time. Find an activity you enjoy that can help keep your thoughts on something enjoyable. It helps me. Ik there is not a one fix for everyone. I also have cats and a husband that keep me going. I hope you find what you need.

I'll keep you in my prayers and message if you need to!

Oct 05, 2016 11:48 PM

One day at a time, one hour at a time, one minute, one second....

Sometimes I have to remind myself to just breathe.

Finding the positives in my life helps. Finding at least one thing I can do each day that's just for me. It could be as simple as taking the time to just get lost in music. Or read a book. Or paint my nails, soak in the tub, sit outside - whatever it is that will give me a few moments of "just me" time.

Having a group like this where everyone understands the challenges of living with pain is a huge help. Having a medical team that's willing to work together and open to suggestions is important.

I wish I could take it away. I know how hard it can be and how tempting it is at times to give up. I hope you won't though.

((( gentle hugs )))

Oct 06, 2016 5:30 AM

Hello Sam ⚘

I have had both cervical and lumbar fusions...πŸ€— both of which were a massively possitive πŸ€—outcome on my pain. πŸ€—Completely successful πŸ€—at that time. πŸ€—

Due to the manor of my degeneration, 😏i have now been diagnosed with failed back surgery syndrome πŸ€” (FBSS)... which does not mean my fusions failed...☺ just thatπŸ€— the stenosis and oseo-arthritis have changed the outcome over time. (10 years in fact)πŸ€—

Dont be afraid hunni πŸ˜™ there are pros and cons in any surgery πŸ€—...
For me...it was my saving grace.πŸ€—
Hugs and good karma coming ur way angel πŸ€—

Oct 06, 2016 7:07 AM

Sam, welcome to our community. I'm sorry that you are feeling like you're in such dyer straights. I've herniated virtually every disc in each section of my spine. Have had several spinal surgeries and they want to do fusion in my cervical spine. Due to the fact that it would be from C1-C6, I would lose all motion in my neck so that won't do for me. I've known folks in my pain management office that have had successful fusions with long term relief. There's ALWAYS a reason to keep on living. Too many GOOD and positive things in the world (even though we suffer) to leave before our time). Hang in there Sweetie, try not to be afraid, it may turn everything around for you and give you your life back. Sending positive vibes and good Karma your way. Gentle {{Hugs}} and well wishes.πŸ€—πŸ˜ŠπŸ’•

Oct 06, 2016 10:11 AM

Has anyone here tried SCS?

Oct 06, 2016 10:54 AM

PainPirate - I have one. It helped for a few years. I need to get it re-calibrated.

Oct 06, 2016 11:30 AM

PainPirate, I've had one for many, many years... it was wonderful while it was working. It's broken now and since it's so scarred in and implanted near my brain stem and C1, they can't remove it without causing major damage. I had it revised 5 times over the years.. too many surgeries. If I could get another one I would..

Oct 06, 2016 3:55 PM

SamIAm, welcome to our community family! Though we all have various medical issues, we all understand what it's like to deal with daily chronic pain. And any time you need support or a listening ear you will find someone here. And there is no judgement no matter what our differences are, because we all need each other. As most have found, those closest to us can't understand no matter how hard we try. And so they get tired of hearing about our ailments or depression or feelings and thoughts. They mean no harm. It's like, "out of sight out of mind." Unless you live it you can't understand chronic pain. Here, were all do. You are among friends who both care and understand.

I've been dealing with spinal disc pain since my first auto accident in 1985; I've been in 5 mva's altogether. I herniated twice in the neck, requiring surgery in 1992 & 1995 for ACDF's from C4-C7. I had very good outcome from both. But over the past 21 years I developed other spinal issues in all regions of the spine. In January & March I threw up causing C3 to slip back into the spinal canal, pressing the cord and nerves. In August they did my third ACDF to fuse C3 to the discs previously fused below, and I've had a very good outcome, actually regaining some mobility I had lost. We were afraid I'd lose the ability to turn my head, like AlwayZ fears, but the surgeon cleaned OA growths from the spinal canal which was causing pain, immobility, & great pain. I spent from 2012-2014 having series of 3 ESI's all down the spine on a monthly basis. It helped until last year.

I'm currently 3 for 3, all to the good so far! We still have to deal with C2 & C7-T1, along with the thoracic, and lumbosacral areas. Personally, I'd rather try and fail than not try and wonder if I'd passed up help. The surgeon I used had several doctors and nurses who stated they'd heard of bad outcomes from him. I'd been trying to get my neck taken care of since 2012, because 3 other doc's said "you need surgery but due to your history & the complicated steps that needs to be done, it's too risky and I won't do the surgery." I had to put out of my mind what the rumor mill said about this doctor, as I'd found no actual proof he was a bad surgeon. So I prayed and trusted he would do very good on me, as he was the only one willing to do what needed to be done. I'm very thankful I've done so well, and I'll trust him again with any other surgery. Many who have had surgery on our spine have developed OA/DDD and further weakened discs (tears, bulges, herniations, etc). It's very important not to do the wrong things too soon. My doc lightly scolded me 2 weeks ago about doing mild house chores (laundry & sweeping), which was triggering headaches and shoulder pain again. Of course this is from the C2 & C7-T1 discs. I've not done anything since.

On the flip side, my sister had an ACDF from C4-C7 four years ago. She did not wear her post op brace and did not do what she was instructed to do or not do. Today she quickly admits she failed to follow post op instructions and has no one to blame but herself for her poor outcome. I know a couple who both had the same surgery by my first doctor. The wife did as instructed while her husband did not; his results are poor while her's are good. And my brother in law had low back surgery, went back to work (crawling under and moving houses) too soon, and he had very poor results.

It's important to trust and feel confident in your medical team too. I hope you will consider talking with your doctor to discuss in depth the surgery and potential outcomes & risks before making up your mind. Whatever you decide, know that we support you. Hugs love and prayers you can get the relief you need soon! πŸ™‚πŸ’•πŸ™πŸŒΈ

Oct 06, 2016 8:56 PM

Thanks to everyone for your kind words. It helps to know there are other people who understand.

Mknight - I have been on tramadol previously but it never did much for me. Right now I'm managing (sort of) on a combination of Norco, flexeril and aleve.

Something in my gut is telling me not to have a fusion. As silly as that is, I've started to learn to trust my gut with these things. I knew instantly each time my disc re-herniated. We know our own bodies better than the doctors, most of the time. My biggest worry is that because of my age, I'll just end up with more deterioration above and below the fusion, and end up needing more and more surgeries. I'm going to get some other opinions before I do anything. My current surgeon has a "3 strikes" policy with herniations - basically once a disc has herniated 3 times, he won't do anything but a fusion. I'm just so disappointed because my first surgery (with a different doctor in NYC) was quite successful. He performed an endoscopic microdiscectomy and I was great for a year - virtually no pain at all. It herniated again last winter and all the pain came back. I had moved to Chicago in the interim so had to find a new doc. This guy swore that a regular microdiscectomy would be the right approach. And yet the disc re-herniated two weeks or so later. Now I'm in worse pain than I've ever been. I don't blame the doc, as I'm sure it's just one of those things that can happen. But now I'm stuck in a pretty bad position, so I'm dealing with a lot of anger too.

Anyway, thanks for listening everyone. I hope you all have one moment pain free today.

Oct 06, 2016 10:49 PM

Take each day as it comes, I live by that saying every day!! I have severe spinal stenosis and herniations from L1 all through to L5/S1, Hydrotherapy is the best in my opinion for controlled exercise. Unfortunately I had a Spinal Cord Injury which left me a quadriplegic from C3/4-C6/7 incomplete spinal cord injuries and T7-8 Complete spinal cord injury, it is hard, I'm not gonna lie but we have to take each day, don't try and push yourself, little things we achieve are actually Massive achievements-Always remember to acknowledge every positive, even if it's small. It is important to acknowledge the pain, but that's all...... acknowledge but try and move onto the next thing and learn to Pace your day. 😊

Oct 07, 2016 6:08 AM

Just knowπŸ€— that u are not alone sweetie πŸ€—... whatever happens, we understand 😚

Oct 07, 2016 6:22 PM

SamIAm be brave! Always trust your gut! Maybe call the NY office & see if your old Dr can give you a good replacement Dr!

Oct 07, 2016 6:31 PM

@JAHMAC - Wow. I feel like a jerk for even complaining about my situation, as it's nothing next to what you must deal with. Sending you good energy!

Oct 07, 2016 7:05 PM

Hey Sam. I've had 3 back surgeries, all in the 1990's. my best advice to you is to educate yourself on your doctor and his abilities. What his success rates are, how often he does these procedures that he wants to do. That's what I did when I had my last surgery in '98. I will say that all of my surgeries were successful for a time. I've been dealing with this for over 30 years and with degenerative disc disease, which is what I have, eventually other desks are going to wear out and pain will eventually get bad again. I have a ton of nerve damage that I deal with every day, but overall, it is much better than it was 18 years ago. I would advise researching the procedure and seriously look into it as an option. If the doctor is a good doctor, it could potentially lessen your pain significantly. As for the spinal cord stimulator, I had one of those back in '96 when they first came out. It was not my best experience as I only got about six months of relief but my understanding from my current doctor is that I am a prime candidate for the new ones which are much much more reliable and a much better investment. So this may be something I'll look into for myself in the not so distant future. Pain is just something we deal with, but keep in mind how precious and beautiful life has. I hope this encourages you in some way and I wish you all the best.

Oct 08, 2016 8:57 AM

Everything is relative to each of us, we each deal with what Ourselves have going on, no condition trumps another,it's how we deal with it that is key 😊

Oct 08, 2016 11:10 AM

Well said Jah 😚
And its ok to vent when u need to πŸ€— pain is relavent to each person 🐫and how they deal with it πŸ˜™on a daily basis 😊 we are all in it together giving support when we can πŸ˜™

Oct 08, 2016 6:08 PM

So sorry Sam that a seemingly simple solution turned sour! I have felt like throwing in the towel more times than I can count! I finally found a surgeon that was "Heaven sent" I have C3-7fused, with cage, L3-S1, right SI joint fused. Truly learned to live again after 4 yrs of surgery. Got my life back, Hiking, pottery, diving, pilates and traveling.. Was rear ended by 2 vehicles in July.. I am back where I was - almost every day and now have to fight with insurance companies to prove that my present state is not because of my original diagnosis of DDD ! Bottom line is.. Fusion done by a gifted surgeon is SO worth it! Don't let it go too long or the road back involves learning to stand, sit, move correctly without compensating! Good luck Sam, keep us posted!

Oct 08, 2016 6:35 PM

Welcome Sam, I had emerg surgery eight years ago two fusions and a skilled surgeon who used coral to fuse not a bone graft. That apparently was a great thing. I can't imagine having to considering such an option. But for me it means I live with less pain.
Hoping you get relief today and some rest.

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