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where do I go from here?

Started by sick of being sick on 03/08/2014 10:34am

I need some good advice. I am post my second laminectomy and according to my surgeon at Johns Hopkins headed for a third, which I will do all in my power to avoid! First surgery was a laminectomy with fusion,rods and screws. the condition was termed spondolothythesis (sp ) with spinabifida and scoliosis at the same level,L4,L5,S1. this was termed a failed surgery. Appr. 3yrs. later, after being jerked around by the first surgeon,being refused help from any other surgeon, being told to go back to the surgeon that messed you up. I found a surgeon at Johns Hopkins who agreed to help me. 2nd surgery was preformed, rods were removed,screws were removed and an attempt to relieve pressure and reduce pain level. Rods,screws and a 2nd fusion was preformed. Now after returning to Johns Hopkins for check up, due to increased pain, I was told that 2 problems exists, 1, level above last fusion has failed and needs fused along with more screws and longer rods. 2, one of the rods is broken into appr. halfway down the length of the rod, two screws are broken, one screw has the head of the screw broken and the second is broken into. Surgeon wants to wait until pain meds no longer cover the pain and also use injections preformed by pain management to help control the pain. When all else fails, then he wants to go in and do the necessary procedures. I am so tired of the constant pain. I am tired of the constant use of pain meds., I am tired of the inability to live my life as I once did. I know there are people who are worse than me, that have cancer and other disorders that I am sure cause more discomfort than I, but that doesn't mean that I am no more miserable than they are and very tired of it. Any suggestions
as to what I can do that might stop this misery once and for all?

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5 Responses


I know how you feel i have had 8 spinal surgerys including 2 failed fusions and on the computer now since i cannot get up and walk. i have had so many epidural injections i can do them myself. i have been to NYU and seen the best surgens there are and guess what " pain is very hard to treat" is what i hear from the DR.s Im on Oxy, Lyrica. amiptrilym, and others. im considering a spinal stimulator as we speak, but have heard and read alot of negetive feedback on them.I would suggest talking to a Phyclogist who has experiance in pain management. i know it sounds stupid but it does help Best wishes I know it dont help but you are not alone forgive the spelling spell check dont work


Do the epidural shots hurt? Ive never had any. I hate needles and Ive read somewhere that you can be
sedated before you get this shot n back. plz anyone give me some feed back. thanks in advance. Wanda


Well, you have been through the mill..had a lot of work performed..it will come to a point where they won't be able to fix you with any benefit to you.

I have similar situation.. not gone as far as you, but deal with a lot of medical issues on my spine/. You'll reach a point will they will just be polite to you and maybe give you some stronger meds and send you to PT.

It's tough to do surgency on the same area causes scar-tissue built up.
Hope this helps.. sorry I don;t have a better answer. Bottom line, just like me and many others you just got to live with it.

Try to focus your energy (or anger) on other positive things. Go in the water and do exercises or something that you like and enjoy.....focus your pain on something else.


I can relate. I feel bad for complaining because I know it could be far worse, yet at the same time all I would like is to be able to live the life I did not all that long ago. I'm 34, have 4 children, can no longer work. Since I am self employed, this leaves me with no income. I rely solely on family for help with personal and child care, as well as financial help. I finally have an appointment with the surgeon this week. After months of failed conservative treatments followed by 2 months of being bedridden with only 30 Vicodin and Advil, I am desperate. I have nerve compression from a herniated disk, as well as stenosis at 2 levels. Thickened ligaments are also causing severe compression, though I didn't catch the PA's full explanation of this. All I remember is he said it wasn't like bone spurs or "typical stenosis" and that it couldn't just be scraped out.

On the issue of the ESI, the decision should be yours and yours alone. I had many reasons for not wanting them, but my gut instinct was to refuse them. I did very little "google research" on the topic because I knew that many people take to the Internet to publicize their negative outcomes when things go bad, yet few people seem to feel the urge to find a message board and create an account solely to express their joy when a procedure has worked miracles.

Unfortunately, the PA who works with my surgeon said that I had to have at least one ESI if I wanted to be considered for surgery. I didn't see too many options. With pain at a 9/10 every day with no end in sight, I needed relief. I did not want to go through with the procedure. It terrified me. I am a huge fan of corticosteroids. Having lived with Crohn's disease all of my adult life, I know full well that they can help when all attempts at controlling symptoms have failed. Knowing that, I still wanted to run and hide the minute we arrived, not that it was physically possible to do so.

My injections were done 2 weeks ago. The "side effects" are becoming far less burdensome. I had a migraine for the first time in my life, that lasted 4 days. 4 days of hiding under a blanket in bed was fun, or not. The nausea caught me off guard. I'm not a "puker". Truth be told, I have a very intense fear of throwing up. I would have appreciated some warning on this one. Luckily my primary care doc was able to call in some Zofran when I called him in a state of panic. Even more thankful that my father was able to retrieve it in record time and save the day. The nausea lasted a good 4 days.

All of the above would be fine had the stupid thing provided any relief that lasted longer than a day. If I had noticed any real relief and it had lasted, I would say that it would have been worth it. But it did get me in with the surgeon relatively quickly. That is about the only benefit I have seen. She also found something completely blocked involving a nerve, but heck if I was paying attention, the pain I was in when she was showing me didn't allow me to listen to or make sense of anything. I would recommend doing your research. I think a lot of doctors like to send younger patients for these for various reasons, some of which make a lot of sense. The typical 40-ish patient who has constant 4/10 back pain that is still able to function and has no clear need for surgery maybe should be referred for them. The person who has new onset pain that fails to respond to conservative treatment, has multiple diagnoses, and is prevented from normal daily activities by symptoms should not be made to feel like no one cares or is willing to at least attempt to correct the underlying problem. If you feel like you are being passed off, you're most likely right. Don't expect full disclosure from the person/practice performing the ESI's either. They are in the business of sales. Read their own message boards if you have the time. I have. It's frightening.

Do your research. Trying it once may be a good option if you have no other choice. It can come with some very unpleasant side effects, but for the most part they're temporary. By temporary, I mean a few weeks. Rarely there are permanent effects. I am still awaiting a second round of labs after a new onset of odd symptoms that led to kidney function tests. I also have new onset hypertension. By new I mean one week after the injections. After having oral and IV steroids in the past without a problem, I didn't give much thought to the overall systemic effects of steroids prior to the injections, not that it would have changed much. I'm just hoping that it's temporary or treatable. Find someone who will be honest about the likelihood of any benefit versus possible risks. The numbers in the studies are very skewed. Their patient selection basically excluded all but the typical middle aged guy with chronic low back pain that doesn't interfere with basic daily living. For the most part they exclude any patients with prior surgeries or more than one diagnosis. The reason they do this is so they can tout high success rates.

Psychologists are a valuable resource. I hesitated, too. After years of living with Crohns, I finally decided to sit down and talk to someone who could at the very least listen. I hesitated, because I felt that it implied that there was something wrong with me, or that if I just met with a shrink, my symptoms would disappear. No one likes it when doctors imply, or even hint that the symptoms are all in their head. Being told that a psychologist may help may indeed seem like the old "it's all in your head" thing, but it's not. Coping with chronic pain is hard. Not being able to live the life that you once did is frustrating. I doubt many people fully realize just how hard it is. I know you know what I'm talking about. A psychologist that specializes in chronic pain and/or chronic illness knows too. They can offer valuable insight. At the very least, they are a sympathetic ear when you feel that talking to friends or family is only burdening them more.

I wish you the best. I am anxious about surgery myself, but I know that I can't take the pain any longer. I can't take lying in bed watching my parents raise my kids and my husband do housework after a 16 hour workday. I was also told that I have scoliosis and spina bifuda. Coming across your post makes me slightly less optimistic about my surgery, still unsure of what he intends to do specifically. I would have thought Johns Hopkins' surgeons were better than average. I guess I really shouldn't be surprised by these things anymore.