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Tired of the pain, tired of the doctors!

From: harley72834 - on 04/25/2010 4:09pm

After years of dealing with varying amounts of back pain and leg pain, and trying different forms of treatment like chiropractic care, PT, exerise, and braces, my PCP refered me to a pain specialist, who in turn sugested I see a neurosurgeon. After reviewing my MRI which showed spondylosis, bulging discs of varying degree,canal stenosis, and foriminal stenosis the decision was made to have a two-level fusion at L4-L5 and L5-S1. The first couple weeks, I was seeing improvement in the pain although I still had considerable amount of soreness from the surgery. Then the leg pain started gradually getting worse, and now it is just like before the surgery. My sergeon ordered a mylogram for me which he said would show a detailed picture of my nerves, and what was going on. Now he tells me the results of the test shows that the hardware is all still in place, and theres no need for further surgeries at this time, however it does show scar tissue forming, but he did'nt want to contribute my leg pain to the scarring. The pain meds aren't controlling the pain, the surgeon isn't givving me any anwsers and it is really starting to control every aspect of my lifebecause yhe pain is 24/7. Does anyone have advice for me?

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12 Responses

on 04/25/2010 4:14pm

I failed to mention that I was diagnosed with scoliosis about 22 years ago, but my surgeon doesnt think that has anything to do with my problems. And my MRI showed a moderate to severe case of DDD, which many of us have.

on 04/25/2010 5:41pm

I feel for you. I too had severe pain after my fusion(L2-L5) Pain shooting up and down both legs, and in both feet. I was told that it would get better, which it did. They told me that during the surgery, that had to move lots of things out of the way to make room for the hardware. That the nerves were stretched. So I would have some nerve damage, but the nerves would eventually heals them selfs. And they were rights.

on 04/26/2010 7:43am

Hi, I am 36 years old now, I had a lower back injury in early 2008,,, when i was shifting house, I have done spinal suregy to my L4/5 (herinated disc), replaced disc (full fusion), I had sever pain before the surgery, I was refered to physio who made the pain even worse, I was than refered to specilist who done e-ray and than Mri,, he rfered me to spinal surgon,,he said there are 70% chances that the pain will go after the surgery,, I done my surgery in July/aug 2008 and waited for 3 months tha pain was still there,, than i was refered to wrok hardning exercise propgrame,, I did it for about 6 months but no difference to the pain,, constant 24/7 pain,, Than I was on strong pain killers,,, which was just a very temporary relief,, I went to another surgon,, who recommended me to do another surgery and take out the screws and plates from my back,, I said no and went l to a 3rd surgon who sent me for a bone scan,, which shown inflation to my left joint,, the specialist refered me for a steoride injection which is due in the next 7 days,, I am tired,,very tired,, some time hopeless,, very stressed,, The ACC who dealas with accidents also stopped my help and said that I have to live with it now, most of my entitlements are stopped, ACC own assessor said that my pain is not that bad and I can mananged my office( Looks like he is GOD and knows my pain), I have small daughter to look after also, My business gone in severe losses after this injury, I can hardly work 10 hours a week now..

Ya so just waiting for this steoride injection next week and see how it goes,, I always feel my self so hopeless and helpless,, when i see i always been treated as fit person while what I feel inside is that my life is no more after this injury.
Good luck with ur treatments


on 04/29/2010 3:25am

Hello I am going through the same thing, but I did not have surgery and I don't think I want too I have met a lot of people who had surgery some 2 or 3 times and some just once and the out come is not what they exspected but for some people surgery was a option and it helped them. I been having spine problems for 10 years and I have herniated disc L4-L5 and thoracic spondylosis T-10- T12 and S-1 with hip bursitis and tendinitis of bilateral hamstring. I guess you wonder how that happen , first it started with a domestic abuse got knocked down spine shifted but I went to work as a nurse assistant did not get checked out , did not get the proper physical therapy kept working for 10 years now the pain is so unbearable at times but I am not working as a nurse assistant and going to online school and looking for job training to find a job with out physical labor. so hang in there and stay strong.

on 05/13/2010 6:16pm

I know exactly what you are going through. I had post arterial lumbar fusion of the L5, S1 5 and a half years ago. I felt comfortable for the first 3 years with leg pain but not like before the surgery until August of 2007 when I starting experiencing worse pain than before the surgery I also have numbness and tingling not only down my left leg but now my right and from my shoulders down to my finger tips. After being admitted into the hospital for five days with all the test you can imagine they could not find anything. My surgeon explained to me that there was nothing wrong with the fusion it was that scar tissue had formed in and around the screws/plates and that MAYBE the cause of the pain. I was referred to see a neurologist well the first one told me I had a bad back & just need to live with it (would love to know who issued him a licence) the second doctor diagnosed me 10 minutes into my examination. I was in excruciating pain that my legs were trembling uncontrollably, my diagnosis is Peripheral neuropathy is a problem with the nerves that carry information to and from the brain and spinal cord. This can produce pain, loss of sensation, and an inability to control muscles. This is all a cause of the scar tissue that formed. One of the only treatments that have been offered Immune Globulin (Carimune) which is given through an IV fusion, I have to now get treatment every 10 days for almost 4 hours and it could be lifelong. As of February I had to stop working because my pain is tremendous even with countless medications. It's a very difficult situation and depressing considering I am only 35 years old and to apply for SSI, who would have thought that my surgery would end up with more pain then before.
I would get a second & third opinion with a Spinal surgeon then schedule appointment with a neurologist.
I hope it's not to far after your surgery that you can do something about it. I was too late to file malpractice because it was over 3 years.

on 06/09/2010 5:36am

I haven't had any surgeries as of yet.. but I'm probably going to need one soon. I have been suffering from back problems for years. Being a 37 year old nurse (who's been in nursing for 20+ years), I have killed my back. I have been to doctors and it seems like they are not listening to my complaints and concerns. I have been diagnosed with scoliosis, Thoracic and Lumbar Spondylosis and Facet disease syndrome. My pain is not being managed well at all!! It's getting to the point where I cannot work or function anymore. My pain is shooting down both my legs and all across my lower back like a constant bad toothache pain which is relieved temporarily by bending forward. Not only am I having the back problems, but now I'm having bowel and bladder problems. Recurrent UTI's, poor emptying of bladder (as found on IVP). I have even voluntarily lost 60+ pounds and it is not helping with the pain. I'm in my ideal body weight and no relief! This sucks!! I've had 3 children naturally with no epidurals at all or pain meds.. I vowed that no one will touch my back then. Heck, I don't care now.. they can do a spinal on me to relieve my pain. Been on muscle relaxers, tricyclic's, NSAIDS (to the point that I had a GI bleed- Feldene, Celebrex and Ibuprofen is NOT good pain management)... thanks to all the druggies out there selling narcotics, people who need pain relief cannot get anything without the doctors looking at you crosseyed. Can you see that I'm frustrated??

on 01/14/2011 4:16pm

I keep reading SO many horror stories about surgeries, it's heartbreaking to hear all of you and to feel your frustration. At one point in time about 1 1/2 yrs ago I was unable to function due to excrutiating pain in my spine, hips, legs, hands & feet, and I had said I did not want to live like that any longer. Chronic pain causes so much depression & frustration, and you're not able to make logical decisions because the pain takes all of your energy. It makes me feel like Freddie Kruger just ripped my gutts out. Your whole body responds negatively when your spine hurts.

I was determined to not go under the knife (or the giant needle) after I did about 6 months of research. I even went on doctors sites where they each discussed their own botched surgeries & how to "fix" it, and if that doesn't scare you nothing will. But what I want to share on here is what I've learned from my research, along with a tid bit of my opinion after many many years of medical research regarding the human body. No, I am not a medical professional, I took care of 2 chronically ill parents and spent a sizable amount of time learning about the human body from books & from questioning medical professionals. I also rescue animals so over the years I've had experience with spinal surgery on a dog and other medical situations with various animals. So here is what little bit I can offer to those who are at whits end....

When a foreign object has been implanted in the body, i.e. metal rod, screws, etc, the body wants to get rid of it. Yep, you already know that. But the part that I've experienced is that the body responds with INFLAMMATION, which is caused by the immune system trying to attack the foreign object, just as it would an infection. I did not have surgery, but my own pain was/is caused by a severely sprained lumbar, which turned into 4 bulging & 1 torn disc after going to damaging physcial therapy & eventually led to chronic inflammation of every single joint in my body which ate up most of my cartilage. So after I realized what was happening to me, since I could actually feel the inflammation moving from joint to joint, I set out to find a remedy for inflammation, and have been learning more ever since.

To summarize, I will say that for those of you who are "after-surgery" and are having issues, maybe try keeping your inflammation to a minimum for a tid bit of relief? I know this might sound too simple, and most doctors are not interested in hearing about home remedies but some of them did work for me. I'm far from being pain free, and I do still take Tramadol 2x per day. But here's what helped me tremendously:

1) Zyflamend~ an herbal anti-inflammatory, can be found at health food stores or on iherb.com
2) Portable TENS unit ~can get one without RX on the internet, mine has 2 types of electrical nerve & muscle stimulation, and this might be helpful for those of you with nerve problems.
3) Other natural supplements that treat inflammation are black cherry juice, celery seed, resveratrol, turmeric.
4) Moist heat packs~ use for 10 minutes several times per day, helps loosen up the muscles that get tense from your pain.
5) Morning stretching~ since overnight your body gets tense and frozen, so instead of shocking your muscles with activity right away I find if I stretch a little first it helps me get moving and be more mobile during the day.
6) Memory foam bean bag chair~ I LOVE mine, takes all the pressure off my spine & hips. Its made from memory foam chips & comes in sizes from 2 ft to 8 ft, I got a 4 ft chair & a 2 ft as an ottoman, called CozySac, can find on EBay or Amazon. (no I don't have stock in the company)
7) Also got a memory foam mattress at Walmart, got an 8 inch + a 4 inch so can be flipped easily.
8) A BIG one is a lumbar pregnancy pillow, its a giant candy cane, takes up a lot of space but it supports your head, shoulders, hips & legs, works wonders. They come in various sizes, can find on Amazon, not just for pregnant women, great for those with back problems.
9) Cut out most of your red meat out of your diet. Red meat causes inflammation.

Thats all I can think of right now, hope something I've said helps in some small way. Bless all of you for sharing your stories.

on 02/28/2011 8:01am

The best way to fight this pain is doing daily massage. This includes gels and oils to be applied which will give you a lot of relief.
Doctors Excuse

on 05/26/2011 9:03am

@invion.... I've tried massage and will jump off the table. If anyone even touches my back it kills me. If my husband accidently hits my back at night in bed with his elbow it sends me thru the roof. I've seen a chiropractor and she said my nerves are on fire! She even called them as "hot??" I tried the chiro but she didn't help.. she would crack my neck (which I have a reversed c-spine curvature.. Not good) and my face and throat went numb. After that I stopped.
@harley72834.. I'd like to know if anyone that had spinal surgery had true relief?? I have been finding that no one has and infact sometimes surgery makes it worse. It's a temporary fix and a lot of generating money for the industry. I go see a neurosurgeon in a few weeks and I'm curious to see what he says. What is a person to do when they lose hope in treatment or the lack of?? I turn to God. I know that he will help me. Afterall he is the Great Counselor! I pray that you find someone that will help you as pain is horrible to deal with.

on 06/20/2011 10:03pm

Oh my I feel your pain and your frustration I have been going threw the same abuse I am so tired of being controlled I feel like my pain management Physician Assistant. (I cannot talk to my dr. he will only talk to his patients that are coming in for an injection) just wants to throw me a prescription for my pain every month and get me out of his face he has more important things to do then to answer any questions or help me with my pain. I am not a Drug Addict. I don't want to get high and feel warm and fuzzy from a pill, I welcome relief from my pain. I am not happy to just be a live and barely function so I can lay in bed another day.

on 03/14/2012 11:10am

I agree that pain management doesn't really help. I don't know what they are afraid of. They give you the least affective drug. Mostly they give you psychotropic drugs. I had two lumbar surgeries, the last one four months ago with fusion L3-4,L5-S1 with morphagenic protein injection. I have pain in right hip and can't walk, also pain in both. legs with knee pain & numbness, can't sleep. Going for total right hip replacement 3/12 D/T Avascular necrosis right hip neck. I have two problems and I don;t know what is causing the severe leg pain & numbness. Neurosurgeon said not the back. Hip surgeon said don't think leg pain from hip, but don't know until hip surgery. Also first lumbar surgery was lamenectomy. Is there anyone that can help me walk without pain? Is there a good pain management doctor?

on 03/15/2012 12:55pm

Sorry about your pain in legs. I had laminectomy L3-L5, leg pain. Second Sx Morphagenic Protein fusion L4,L5,SI with outside bone stimulator, still leg pain. Neurosurgeon said not from back Sx. Going for total right hip replacement Marcr22,2012. I have Avascular Necrosis of right hip with colapse. I can't walk D/T pain. Orthopedic doctor said hip replacement might help. Pain management doctors don't help. They want to give shots that don't help,but they make good money on. I understand ,too much cortisone can cause soft bones.I also have arthritis of both knees,very painful. I feel worse after two back surgeries. I am also getting tired of pain unmanagement doctors who are afraid to give you any opiates that might help. Because of this I'm iin constant pain. EMG may tell you where pain is coming from.