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Pain after L5 S1 spinal fusion with disc removal
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Pain after L5 S1 spinal fusion with disc removal

I am 26 years and have had back and leg pain for years.  Every time I would go into my doctor and she would take X-rays and then tell me that I was constipated and send me home with Darvocet.  This went on for years until April of 2008 when an on call doctor said I was to young to be having this kind of pain and ordered an MRI.  It showed that I had a herniated disc at L5 S1.  I went and had two steroid injections that did nothing but put me down for two days afterward.  Then I did physical therapy for four months.  I had a discectomy in September 2008.  They took a quarter of the disc out.  I had immediate relief of the leg pain, it was amazing.  Then a month later I started having back pain all over again.  My doctor sent me to physical therapy confident it would help.  I was in physical therapy for four or five months and then they just sent me home with a tens unit.  The tens unit did nothing for me at home.
I continued to to see my chiropractor for the rest of 2009.  Then in November of 2009 my doctor said it might be a good idea to start adjusting my lower back.  My next visit I asked her to adjust my lower back.  The next day I was in so much pain that all I could do was cry.  I went to work and I had to crawl to where ever I wanted to go.  I called my chiropractor and she said that that wasn't normal and I shouldn't be in that much pain.  She was amazing in helping me get into my doctor right away the next morning.  My doctor gave me a shot of Toradol and sent me home with steroids and pain medication.  My chiropractor go me in to see the PA of the surgeon she works with.  She tried to examine me to her best with how much pain I was in.  She ordered a CAT scan and sent me home with muscle relaxers and pain meds and told me to take it easy until they could figure out what was going on.  The CAT scan showed something that wasn't good but she need to see a MRI so she could pin point what it was.  The MRI show the same disc as before was herniated again.  It was huge.  She then made me an appointment with the surgeon.  I was to see him on a Friday.  The previous Monday I called her and said that I was in so much pain that I couldn't walk, sit or lay down.  She consulted with him and they said that I would probably have surgery that following weekend and to keep his appointment.
He reviewed the MRI and said that I had severe disc disease and arthritis starting to form around my vertebra.  The disc was completely black from being dried out, and that a huge piece had broken off and was pretty much floating around in there and pushing on my nerves causing the leg pain.  He wanted to remove the disc and put a cage in and then do a fusion to stabilize everything.  I had surgery the following Monday.  Surgery was about 2 1/2 hours.  When I finally woke up I was in so much pain I couldn't handle it.  The nurses had to call him and change my medicine.  I didn't get out of bed until the next day.  I was in the hospital for 4 days and 3 nights.  When I got home I was still in so much pain.  I seen her the following Monday and she switched my meds from what she put me on the leave the hospital.  I was also put on Gabapentin and Baclofen.  The pain seemed to get better after that and I felt a lot better.  
Then about 2 weeks after that the pain started to get really bad all over again.  If I was sitting on the couch I had to use the arm of the couch to get up, my knees felt like they were gonna give out and I got very depressed again.  My family doesn't understand and are pretty much sick of me talking about my pain.  I am sick of taking pills to feel better and I don't want my doctor to think that I am addicted to them, but they are the only thing that makes me feel better.  My muscle spasms are absolutely horrible.  I am 8 1/2 weeks out of surgery and wondering when the pain will end.  I don't know what else to do.  They say that everything looks okay, but I don't feel okay.  How do I go about making my doctor understand?  What things should I bring up?
Any ideas would be appreciated.
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8 Comments Post a Comment
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Avatar_f_tn
I'm so sorry for all ur pain!!! *hugs* I know pain and it can be debilitating!!!! I myself am almost 5 weeks post-op from open back surgery at l5/s1, fusion with instrumentation. Surgery was 6 hours, stayed in the hospital 3 days, and have a 6 inch incision. The first two weeks were unbearable. The pain in my back was incredible. My neurological issues in my legs are gone, now its just the pain and stiffness in my tailbone, flanks incision area and around about mid back and below. Its not an easy surgery to recover from and I'm so sorry ur still in incredible amounts of pain. I feel blessed that I'm recovering as well as I am...especially when I hear of stories like yours hun, I hope things get better for u fast, greatest blessings to u!!!
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1260490_tn?1269732892
All your leg pain is gone?  Mine was too, until about 3 weeks ago and it is starting to shoot down my legs again, I am getting very nervous.  My muscles are very tight also.  Just wondering if your muscles are okay.
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Avatar_f_tn
When I had my emg study before my surgery, I was found to have motor nerve root damage in my anterior tibilas muscle and gastro muscle. The pain was in both thighs, calves, behind my left knee region, down my shin bone, into my ankles and feet. It was horrendous...spent a yr with severely compressed nerves at l5/s1 and couldn't move my left foot up or down. Couldn't have anything touch my legs. Since my surgery, the pain in my legs is just a faded memory except for sum pain still occastionally in the tops of my feet. My calves are tight and will take physical therapy to help with. I go to my spine dr appt for my 7 or 8 wk check up april 9th and hopefully he will add new physical therapy besides walking. I understand ur nervousness as there is alwaYs the worry of failed back syndrome. Nerve regeneration is slow and can take 18-24 months to fully rejuvenate to the point where u know what recovery ur going to gain. Just keep an eye on it and keep ur dr posted. Keep me posted too!!! *hugs* how is ur back feeling? How big is ur incision? Have u hit the achy stiffness pain?
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Avatar_f_tn
I started like your post after a auto accident in 1995, I have had 8 surgecial procedures, hundreds of hours of PT (in all types - from experimential 'military style' boot camp - work through the pain, to easy relaxing massage therapy), as well as hundreds of facet, trigger point, and other types of spinal injections. I worked full time up until 2006. I was rear ended while at a stop light by a 18 yr old who slammed into me at 70 mph, went he got out of the his car his cell phone was still glued to his hand - He just didn't see me, can't even try to explain that one. I was 23 when I started my journey and my road seems to be almost identical to yours in many ways. I went thru EVERYTHING your talking about and much more, believe me, I understand.

5 out 7 surgeries- complete failures, I 'acquired' 'intercystial cystius' thanks to a unattentive nursing staff, but didn't know what happened until 2 years later.  I've had a 'BAK' fusion, which is a surgical cage, parts of both my hips were cut to 'wedge' were L5/L4 were removed, facet screws, more hardware added. I honestly forget the technicial terms, you name it, I've had it done. My surgeon is listed as one if the top 100 in the U.S. Anyway my point isn't to brag or boast, my point is this: I had the very best Doctors money could buy, the latest technology, everything a person of priveldge gets, even though I am not a person of priviledge. I got VERY lucky. The man I worked for got me the very best care in New England and in the end it didn't change a thing. I have no career to speak of, I care fit my elderly mother both financially & emotionally. I did have money in the bank, perfect credit, 2 homes alot of toys, all before I was 28. That's all gone. Today I have my beautiful wife, a gorgeous 4 yr old, I'm broke, have lousy credit and can barely get by. I'm on over 1500 mg of combined Oxycotin & Oxycodone, been in pain management for 14 yrs.

I chimed into your post to tell you that I know what your going thru. I'm not proud of my opiate intake levels and I did the whole 'In a drug addict beating to myself, everyday for years. Here's what I have learned in my part of my journey do far.

1st YOU ARE NOT A DRUG ADDICT. if your taking your medications 'as prescribed', your not 'drug seeking', going to multiple doctors to get medication, selling medication, doing other drugs on top of what your prescribed, IE COKE plus your meds, anything then what is prescribed to you, you are taking it in a manner consistent with the directions' - YOU ARE NOT A ADDICT!

An addict does & is everything I just describe., If your like me, take your medication as directed, see 1 doctor for pain medication, you follow the contract you signed if your in PM,, not taking scripts from other doctors.

Basically following the rules and your not a addict, your a patient. A patient with a medical condition that is no different then someone who must take Asthma medication, or a diabetic.

Without medication I couldn't of held my daughter when she was born, remained  a productive member of society for nearly as long as I had been, and I still am - just in a very different capacity with a lot less income. I would be completely useless with ZERO ability to function.

I wish I had anyone who understood half of what I was going through, so I know exactly where your coming from. I can give you all types of advice, but as I've come to learn quite a few times when I struggled with 'myself' and I would ask a friend, family member, spouse for advice, I didn't really want their advice I just wanted validation I am a good person, someone to listen to me, that's all, show their support 'occassionally - even if they didn't understand or couldn't understand, but to know that they were there for me right wrong or indifferent.

This is a amazing forum with great people who honestly seem to care, I've only been her for a couple weeks myself. Just know you've got a friend anytime you need one.

PS You may want to ask your Dr next tine you see him to give you 'skelaxtin' or 'diazepam' to help with the spasms, and make sure (I don't recall you saying what you were being given for pain but if it's anything that aspirin or ibprofren) your doctor is checking your liver function at least  every 6 months, and if your medication is not working TALK TO YOUR DR, you need to trust him and he needs to trust you. He deals with the 'scum & scammers' that make it very tough for legitimate pain patients to get what they need, if you feel nervous or intimidated by him that's normal - they all do that in the beginning to figure you out. If he keeps it up after awhile, find another Dr. If your 'gut' reaction tells you something LISTEN, if your not clear on what he is saying tell him. The only way you can effectively manage your care us thru mutual respect, trust and honesty.

I literally just went thru a giantic crediability crises with my Dr. That issue is actually what brought me to this forum.

Just another side note, it always seemed to me 30-60 days after a surgery I felt great, then I felt like crap. My surgeon called this 'surgical holiday' The only way I can explain it is you literally get so pumped 'up' between the natural chemicals your body produces, the aniexty, that this 'procedure' is the last one, everything will go back to normal, everything will be great, etc. Your mind tricks your body.  So much that even if the surgery failed you want so much to believe it worked, you convince yourself it did. At 1st I thought it was complete BS, but it isn't, at least not for me. It's documented and the technical term escapes me. Regardless though you need to stay positive, and that's tough. If I can help you out in anyway drop me a line, best of luck to you.
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Avatar_f_tn
Wow carjockey, I read and learned thru ur post!!!! U are a surviver who has overcome great trials and journeyed thru much pain and gained yourself in the end!! Altho u kinda scared me bout 'surgical holiday'. Greatest blessings to u both
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1260490_tn?1269732892
Wow it sounds like you have had a rough time.  My muscles behind my thighs are so tight that I can barely extend my legs.  She didn't want to put me in physical therapy for at least 3 months after so the fusion could take.  I am currently taking Hydrocodone 5/325 and I am suppose to take 1-2 every 4 hours for pain, but I find myself taking 2 most of the time.  The Baclofen she has me on is a muscle relaxer and doesn't seem to do anything.  I hate the muscle spasms, they hurt very bad.  When I sneeze or cough I have pain in my back again and that's when my legs feel like they are gonna give out or when I try and bend over they wanna give out.  She says that she wants me to start walking and such but even that sometimes hurts.  I want to have hope that this surgery worked and everything will be okay, but when it all came back 3 weeks ago I have no hope anymore.  After the first surgery didn't help I kind of lost all faith.  I go to the doctor on April 14th, so I will you know what he says.
One more question, how long were you taking medication after your surgery?  
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1260490_tn?1269732892
My back is still bothering me quite a bit.  My son this weekend grabbed my leg and kind of twisted it, and it instantly started bothering me and now my back is swollen quite a bit again.  He didn't mean to and feels bad.  My incision is about 6 inches long.  She let me see the X-rays the last time I was there and it was weird.  I have 4 screws, 2 rods, and a cage in.  To see the graft to was weird also, it was just cloudy where she said it was.  I go to see my surgeon April 14th, and am hoping to go back to work.  I really don't want (I would rather stay home to heal further) to but I can't afford not working, and am starting to loose my mind being at home all day almost everyday by myself.  Let me know how your doctor appointment goes.  Hope all is well.
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Avatar_n_tn
My pain, I think started when I took a tumble while mountain climbing. I am 53, and my tumble was at age 21. During this time I have been married, have given birth to two wonderful boys. And have been thru lots and lots of pain, medications, physical therapy, chiropractors, pain management, steroid injects and a laminactomy. Finally four weeks ago I had a sugary to fuse l5-s1. Anterior, I.e, they went thru my stomach. Out of surgery the pain in my hip area, and my thigh was completely gone, I did still felt pain in my shin and foot. Incision pain is all gone now.

But lo and behold, four days ago the pain in my hip and thigh has come back, same pain! It is even hard to fall asleep.

I am taking Percocet, Robaxin for pain. I am on a pain patch - Duragesic - 50, for last yr and a half thru pain mgmt. And the pain persists!

As for being "drug addict", I had brought it up to my pain mgmt once, and he had said " you are addict if you go out seeking for more drugs, right now you are drug "dependent"." and that is the difference.
I need to change my pain patch every 72 hrs. Sometimes I forget, and then I start getting chills and sweats at the same time. Witdrawal!

Yes, end result might be same, but like the dr said it makes me " deponent" not addict!

Remember, to live productive life if you need help with pain, use it, but use it responsibly! Remember the contract you signed with the dr. And if you feel you are wanting (not needing!) more drugs, get help!

As for me I go back to neuro on Mar 4,2011. Let's see what he has to say!
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