I wanted to post my story for people, because before my fusion I read quite a few negative stories, and got a lot of negative feedback from the people in my life. I am only 28, so people had plenty of opinions. Most of my peers and family members don't understand what I am going through, but if you are on here reading this you likely are experiencing the same kinds of disabling pain that I was. In the end, my Physical Therapist and my faith in God is what helped me make the right decision.
First of all, the best advice I can give anyone in our situation is to STAY POSITIVE! It gets really hard more often than not with the constant pain, but I truly believe it is CRUCIAL for recovery with a fusion or any other surgery. The other advise I have is to always be completely honest with your doctors and your physical therapists (or as I like to call mine, a physical terrorist
). NEVER suffer in silence. Tell them what is going on, even if you think it is not related - it probably is. Most of the medical professionals I have dealt with through the past few years (I will get to my story soon, if you care to read it) really do care about you and do want you to get better and improve your quality of life. If you are having a surgery, consider doing pre-operative physical therapy. It hurts like heck, but the stronger you can get before surgery the better - I wish I would have done this before my laminectomy. I had to take quite a few meds to make it though PT before my Fusion, but it was very worth it. Also, if you are going to have surgery don't stress yourself out about it. God is in control. Your surgeon and surgical staff do this every single day. It is probably your first surgery of this kind, but don't worry - they are the pros and you will be sleeping. And, shocked at how late in the day it is when you wake up! (I was out from 7:30am until 2:30pm!)
If you don't want to read my whole story, let me just say that I had 2 surgeons telling me not to do a fusion and 1 telling me to do it with a 70% chance of it helping. I thought that was VERY good odds compared to where I was headed so I went for it. I want to have a family some day and knew that was not going to be possible without getting my back fixed. I was fused L4-S1 on Feb 28, 2014 and feel better than I have in years. I am down to only taking Norco once or twice a day (and recently valium again as I dislocated a rib). People will tell you all kinds of horror stories because lets face it, we live in a society where people complain about the bad but don't necessarily celebrate the good. Isn't it said that if someone has a bad experience they will tell 10 and only 3 if it is a good experience? We need to change that. Don't let people's horror stories scare you away from a fusion. Yes there are risks, no they will not help in every situation, but if your surgeon is good (you can find that out by asking your other doctors, therapists, ect) they won't recommend it if it won't help. I still have pain, and I probably always will. I still cannot sit for long periods, and my lower back still hurts but it is NOTHING like it was before. At my last follow up appointment (surgery was 11 weeks ago) my surgeon told me that it takes a full 9 months to see the full benefit from a fusion. I am confident that I will still see more improvement, but happy with my results if I stay where I am at
If you care to read on, I will tell you my story, if not that is okay (It is kind of long!)
My back problems started in 2007. I was 22 and about to get married. I worked at a childcare center and one day I woke up and could NOT stand up straight. I had terrible pain in my lower back. I didn't have insurance or a primary care doctor at the time, so I went to the med center and they gave me my first ever round of muscle relaxers and pain killers. After about a week of that I was back to myself.
Unfortunately, that did not last long. After about a year the pain came back, but stronger. I went back to the med center for more meds and took it easy for a few days.
By the third time, I knew something was wrong so I decided to see a chiropractor. He was highly recommended in the area that I was living. I agree that he was good. I ended up having to see him 3 times a week, and after about... a year, he sent me to an MD.
When I called to make an appointment, literally at a random doctor's office since I had no PCP, they set me up to see a D.O. doctor - if you are not familiar, that is an orthopedist who can do spinal adjustments much like a chiropractor, but with different techniques. They also usually give you something for the pain and a round of muscle relaxers. After seeing the D.O., I was pain free for a full year. I thought I was cured!
In the summer of 2012, the pain started coming back. By this time it wasn't only in my back anymore, it had gone to my buttocks, but not down my leg. It hurt like heck when going from sitting to standing, but after a few seconds, I would be okay. It continued to become more intense so I decided it was time to see that D.O. again. I had moved and it was an hour drive to get there, and they could not get me in for a few months since I was not an "active" patient anymore. I thought I hit an all time low when I went to the ER literally to get refills of my prescription pain killers and muscle relaxers. I told the ER doc my situation and explained I found a new DO closer to home but they couldn't get me in until December since I was a new patient (this was September). Surprisingly, she actually filled the scripts that I requested.
The next week, an opening at the new DO became available and I was in the next day. Thank God because I was miserable at this point! She did an adjustment for me, and I had hoped I would be good to go. The next week I went back - the adjustment didn't help and I felt worse. She didn't want to try another adjustment and wanted me to go to PT. I was young and dumb then apparently because I thought PT was for old people, not people in their prime, like me at 26!
I should have listened because on October 17, I woke up in the middle of the night from the pain in my butt, and decided to get up and walk around for a few minutes. I went to the bathroom (#1) and when I went to stand up something snapped in my back. I thought I had pain before but this was so painful that I couldn't stop shaking, I lost feeling in my toes, and was screaming in agony!! My husband took me to the ER (yes, it hurt that much!) and they doped me up on dilaudid. Worst night of my life, and I am still scared to go to the bathroom sometimes!
The ER doc sent me to a spine specialist here in my small town. They gave me 2 steroid injections. The first one was under an ultra sound, that one was not painful at all - but it also didn't work. They then sent me for an MRI and scheduled me for a Fluoroscopic Injection. As someone who typically avoided doctors and testing, all these appointments and injections were almost enough to put me over the edge. The MRI wasn't bad - just loud (if you get one, have them put a towel over your eyes and don't think about it). The MRI revealed that I had a disc extrusion at L4/L5 - The source of the snap!
The Fluoroscopic Injection with no anesthetic is agonizingly painful. To this day when I think of it it makes me stomach sick. It did help take the edge off my pain, and I was able to get back to work (not comfortably). After the injection, my right ankle would try to roll when I walked, so the spine specialist referred me to a surgeon.
I met my surgeon the first week of November. He immediately ordered X-Rays, and after looking at my MRI knew instantly that I needed surgery. I was scheduled for a Laminectomy of L4/L5 for December 19, 2012.
I didn't know what to expect with my Lami, I had never had any kind of surgery and have always been really healthy. I anticipated being in pain after surgery, and it was manageable. Recovery was rough, but I survived. When I went back to work (8wks post op I believe) I was still pretty miserable. I couldn't sit in my chair so I ended up sitting on my knees a lot. My surgeon ordered another MRI in March, and he said everything looked okay, but that I would eventually need a fusion but he didn't want to do it yet or I would be in for a lifetime of surgery. I asked what do I do in the mean time? He said get used to it. That did not make me happy camper. How was I going to get pregnant with this pain? (Negativity setting in)
At this point I became very depressed, and I forgot my earlier advice - to always stay positive. I was feeling sorry for myself figuring that I was never going to be able to have the family I wanted and boo hoo hoo. My PCP never gave up on me and I saw SEVERAL different doctors in the next few months. I ended up at a pain clinic where I had more fluoroscopic injections. This time, she was kind enough to sedate me so it was no big deal, didn't even feel it! The injections only helped for a week. She tried my 6 facet joints one week, then she tried L4/L5 where my surgery was, then she dropped below and tried L5/S1 twice. The L5/S1 gave me the most relief - but only a week worth. In May, my back started grinding. It was disgusting. No one seemed to be concerned about it, which I thought was annoying because I knew it was real and I knew that backs should NOT be grinding.
After this, my pain clinic doc sent me to PT. She also decided that she wasn't going to do any more injections because there was too much risk involved for a week of relief. She recommended that if I did not get accepted into a local university who is supposed to be "the best" that I get a discogram, knowing that if it was positive I needed a fusion. For PT I went to a different guy then the one I saw after surgery. My new guy is amazing. He is a total advocate and I hope that everyone who needs therapy finds someone like him. PT was not successful and he recommended that I get more imaging studies done to my PCP. So I did. In September, I had another MRI. L4/L5 had re-herniated and there was a small bulge to the left at L5/S1. No wonder the PT exercises he made me do caused so much pain! That is when I started calling him my Physical Terrorist
By this time, I was taking Motrin 800 3 times a day (For almost a year), Tylenol, Skelaxin, Zantac so I could take the Motrin, and my docotor(s) wanted me on a nerve medicine. Tried Topomax but I was allergic to that. Ended up going non Neurontin, which was amazing! Even with all of these meds I was still in loads of pain. I did not want to take narcotics.
I started having other health problems, I believe from all the meds I was on. I HATE taking any sort of medicine. My body doesn't like it and I don't like it. My PCP thought I could have a stomach ulcer, and that was the last straw for me. I decided to see my surgeon again to see if he had any other ideas while I waited to see the neurosurgeon at the university.
On my one year anniversary from my lami, I saw my surgeon and told him everything I have tried - meds, injections, adjustments, etc., and he looked at my MRI from Sept. and explained that the disk re-herniated but that he couldn't do another lami because I would have no stability in my spine. He said I had three options: I could try a nerve block, which is temporary; could continue waiting (he knew that was NOT an option for me or I wouldn't have been in his office); or go through with the Fusion which had a 70% of helping. I thought a 70% chance sounded pretty dang good when compared to the alternative so I agreed to do that.
In January, I went to see the Neurosurgeon for a second opinion, which was a total waste of time and money. This guy was so arrogant and he informed me that the only reason my surgeon wanted to do surgery was because it was $40k in his pocket and that it wouldn't help me. He wanted me to take Oxycontin and go to their pain clinic because the one that I went to apparently wasn't good enough. Bull crap. I wrote him off and I am in the process of writing him a letter telling him how I feel about him (And how good I am doing since surgery - he could be ruining a lot of people's lives!)
Since there is probably no one who read this far, I will end things here. I had my fusion of L4-S1 on February 28, 2014 and I feel the best I have felt in years. My back doesn't grind - he said I was literally bone on bone, I don't get much leg pain (still some as can be expected as the nerves heal), and I can actually walk! And perhaps best of all, he made me taller again I think that I might be as tall as I was before my back first broke down in 2007
I wish everyone the best of luck. I know how much this stuff sucks. If anyone needs to chat or talk please message me. Hang in there!