1 year post-op, life sucks! Questions and Venting.

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dub1

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Hi all,
I have been so down lately that I haven't had the strength to answer the phone, email, or anything. I am having some classic depression symptoms and then I got thinking about chronic pain and depression and I have come to the conclusion they are one in the same. I was looking at the list of symptoms of depression and they are almost the same as a chronic pain list. Anyway, 1 year post op this month. Still not working and won't be for sometime if ever. I have continued with my ESI's and now we are doing a 4 shot run every two weeks and then some intensive aquatic physical therapy. If this doesn't help I will be going for the spinal cord stimulator. The most frustrating thing about all this is that my surgeon just left me hanging. I guess I didn't fit into his fairy tale spinal surgery story. You all know this one, "oh, most patients are off meRAB in 5 weeks and in 12 you will be skiing and biking and everything else you love to do". What a crock of dudu. He said that "structurally" I am fixed and that was his job, nevermind the burning, tingling, wet feeling legs and still constant pain in my lower back, oh and the weakness in the legs that has me using a cane for short walks and a scooter for anything more that 30 feet. I am so pissed off that they just didn't give me the straight dope on this. I know that most of you on this board know where I'm coming from. Would I have still done it, yes, It was a chance to improve my life and at the time what choice did I or anyone else have. You have a well trained medical professional saying you will be great and after living with so much pain for so long what are you really going to do. I am going to search long and hard for a surgeon that has actually had the surgery they are recommending. Wouldn't that be nice. Sorry to go on but no one understanRAB, how do you explain to your wife/kiRAB that you act like a jerk because every moment of your life hurts and everything you do irritates it to a point of breaking a sweat. Finding that balance is hard which is why I'm turning to the only people I know that have lived through this. I just needed to vent a little and get out some of these feelings, when people ask how come you don't go out anymore? I feel like a baby saying that it just hurts too bad to even want to try. But thats how it is, too hard to even try. I really hope this stimulator works and I can go skiing, just kidding. Seriously though, has anyone had this and give me any advice? I have no post fusion diagnosis yet but I will be seeing a neurologist soon so we will see. The original was DDD, spondy grade 1, osteoarthritis, facet arthropathy, and a collapsed L5. I had a lami, with hardware. One more question, I saw a massage therapist she said i have extreme tension points in my low back giving off a lot of heat, then she says "your in pain all the time, huh"; I'm like yeah, it caught me off guard that this massage therapist could tell me more about my spine than all my other docs have told me in 4 years. Unbelievable. The question, she recommended a sacriliac joint massage? Is this something I should try? Let me know and thank you for reading my anger fueled tirade. Godbless to all.
 
Wow I know exactly 100% what you are saying, I could not put it into better worRAB myself! I too felt hung out to dry after my first lamenectomy, all that he could do, everything was sound and I could go out for a jog! In reality I can barely stand up to walk let alone jog! I am facing another surgery within a month or so. The nerves are being pinched so badly and for so long that I lost a lot of strength in my foot. To get to your point, I did try the medtronics spinal simulator trial period. But, it didn't work for me. From what the doctor told me they really don't know why it works in the first place just that it does on some people. It only helps the leg pain because the electrical signal only travels to the pain and it can not go any higher up ont the back. Again since they really don't know why this works, thats why they don't know how to get the signal to block the pain we are feeling in our backs, again this is accoring to the doctor. I would still go through it because hey you are a different person, might work for ya! The procedure is fairly simple much like a steroid injection. They will only use one lead during the trial and you try it our for a day or two. You do get to adjust it during the trial as well. Another thing that goes along with it is the psych eval to see if you are able to handle an inplant. Hope all goes well!
 
Hi
Sorry about your pain. I was with lots of pain as well. Got surgery done 2 weeks ago and feeling a bit better. Regarding spinal stimulator as others mentioned it does not work for everyone. I do have a friend that got one inserted because he refuses surgery and he is a new person. He is actually now on a long trip vacation. Something I have not been able to do for over a year. They will put a one week test implant on you and if it works then they put the permanent one. ( they cant turn t on for like 3 weeks so you will be in pIn there). Hopefully you can get some therapy to work instead of this. Try also natural antiflamatories like Omega 3. It helped me a lot although it takes about 3 weeks to start working. I hope you can get better soon. I don't know how I survived so much pain and medications. Yuk!
 
Learning to cope with pain is never an easy thing to adjust to and when you are there finally, only then to have to readjust again and again due to changes in your body and spine. And for the lucky, we get relief either short or long term.

Something I always remeraber is to never make my pain belong to someone else. It's not anyone's fault I hurt, and I make darn certain that I dont pass that on to anyone else. I have never once lost sight of that. It's my unfortunate burden. Just living with people like us, is hard enough on our loved ones. I am not preaching to you or anything like that, I was just telling you a bit of how I approach my pain and those I love that surround my life. I have seen the pain in my loved ones eyes as they have watched me go through this process. They are hurting right along with me and I dont have to say a word. Like your children, they just know and feel you.

I truly encourage you to use this board ALOT, especially when you feel overly down. You are right.. we can be a valuable asset to listen to you, feel it with you and help you get on the otherside of that.

Are you on any medications at this time?

I personally do not have a stimulator but there are several here that have or do. Some have gotten some really good results and others not so much.

I know if you get a good massage therapist that you connect with and trust, they can do wonders for you. As to that type of massage, I am not overly familiar with it. You might try it and see how it pans out, and if it's painful, have her stop. But beforehand, have her thoroughly explain the process to you, and what the benefits could bring you.

Whatever you do, don't shut yourself out of life. Do whatever it takes to push that pain into a place (cuz you cant just rid of it we know) and really work toward the goal of getting back into life in small ways and I think you will be amazed at what those "small ways" to lead to for you both physically, mentally and spiritually for you within yourself. Dont ever give up on reaching for that quality we all deserve.

You hang in there and please come more often.
 
Dub, you're right, we here on the board do understand. I've been hurting since I was 14. I'm now 49. I had surgery at 18 which decreased my pain somewhat and allowed me to do at least some "normal" things, although always with pain. When I started my downward spiral physically about 4 years ago, my pain skyrocketed. I went through another fusion, another hardware removal, then had a facet injection that was my turning point, not in a good way. The position they made me lay in did damage to me, though no one is telling me exactly what happened physiologically. I just know that my upper spine and neck pop and crack all the time and hurt a lot more. That's when I finally talked to my family doctor --- well, actually, I cried in his office for 15 minutes, not like me, strong stoic me who people always say is so "brave" because I handle my pain so well. (Ha, if only they knew! I just don't show it to them; no one wants to be dragged down by my pain!) I told my doctor exactly how I was feeling, that I had handled loss after loss --- having to let my professional license expire and face that I could no longer work in my chosen profession, having to give up hobbies like gardening, etc. --- and that I was accepting that I had been in denial for a long time about being depressed. He said that chronic pain very commonly leaRAB to depression and started me on Cyrabalta. He and I were both pretty sure my insurance company would be difficult about it, since they only like to give out generic drugs and we hadn't tried any of the less expensive ones. My insurance company is pretty stinky to work with, but they actually did approve it! The Cyrabalta is the one antidepressant that also helps with pain relief. So far, it's been great for me. I don't feel euphoric, just normal. I don't have the lows I was constantly having. I don't wake up crying or go to sleep crying. It's so wonderful to just feel NORMAL!!!

I hope you will talk to your doctor, too. There's help out there. You're hurting! There's no shame in getting some help for that!

:wave: Emily
 
Dub,
my heart goes out to you. I has absolutely similar experience with my surgeries. My first surgeon told me I will be back to work in 6-8 weeks and that sucess rate on fusion surgeries is 95%.
After I had one, he sent me to PM ignoring any signs of droped foot, nerve damages, etc.
I did not want to give up and went for couple of opinions and finally decided to go to HSS in NYC where i met my second surgeon who told me right upfront the honest truth about my condition and what can expect, but definatelly not a pain free life even after he will fix upper levels.

Don't give up, search for answers. I had my 3 month check up with my surgeon at HSS (I had this done 12/07) and he mentioned to me that ex-ray shows hardware in place and to continue my treatments with PM DR. I think this is how it works with them. Surgeon did the surgery, and if you are not well enought to go on, than PM is your DR.

I know a very nice guy on this board, his name is Shawley, he is the one who has stim and I believe he is doing OK with it. Start a thread, he may be able to help you with your concerns.

Stay strong, go for more opinions, most of us have to do it too. And best of luck to you and your family. Just know we are here for you 24/7
:angel:
 
WOW You took the worRAB right out of my mouth. I am 6-months post ACDF C5/6 and L5/S1 - still in trememdous pain. Can't do family functions, can't do family vacations, stopped my passion of fostercare because it wasn't fair to the kiRAB because I was in pain all the time. Haven't gone back to work as a Social Worker for CPS because of the pain and the meRAB. How do you cope? I am at my wits end. I tried to go back and 2 - four hour days ended me up in the hospital for four days... I know how you feel. My Surgeon says everything he did is "TEXT BOOK" I don't know why you are in pain. Maybe I can offer you a XANAX to calm you down!!!!! UUUGGGHHH I was so pissed at him I walked out of the office and found another doctor. Still in pain but at least my doctor listens to me and doesn't offer me a XANAX:confused:

I know your post was a while ago but as I was reading it I couldn't help but say WOW I am right here right now. The family aspects, not working, not able to work, missing the income, yes STD and now applying for LTD but it's like 1/2 half of what I made w/over time and no social contact....

I feel for you. Let me know how you are doing now and if things are getting better. I hope they are really and truely hope you have found a happy place or at least a place of acceptance.
 
Sorry you are in so much pain Dub1. I have had a major depression, and it certainly can heighten your pain responses. People don't realize how much "depression hurts". Have you thought of going to a doctor to treat your depression. I had cervical ACDF, and know of folks who have had you type of surgery both successfully and not so much. My depression was quite a few years ago, and not associated with my spinal surgery... and I remeraber hurting all over... going to the docs for answers only to be told everything was normal. After meRAB for depression and cognitive therapy and alot of spiritual work, my depression began to lift... a big part of my pain went away as the depression resolved. Godf bless... and keep talking on this board... that's what we are here for. These folks were a GoRABend for me. Denise
 
Concerning your question about massage of the SI joint and area. I Have not been through quite as much as you have, however, as a long-time SI joint sufferer I may be able to help you on this one point. Massage will not help the SI joint itself. It is located deep inside your body and it is a joint not a muscle. That said, an SI joint that is causing a problem will pull the corresponding muscles out of shape and this causes a portion of what is labeled SI joint pain and can be helped with massage. So, as far as massage goes, I guess it depenRAB on whether or not part of your pain is muscular. I have gotten relief from pain in the glute and piriformis muscles via massage therapy. I have been getting a 60-minute massage once per week :-). Best wishes to you.
 
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