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I am new here and miserable

kateecatkkateecat Posts: 16
edited 01/11/2013 - 6:51 AM in New Member Introductions
Hi Everyone,

My name is Katie and I am 30 years old from Chicago area. I would like to share my story with the hopes of finding others who can relate. I know everything has been discussed many times over in other posts, which I am slowly going through. But, since this is the new member introduction section, I thought I would give a bit of a summary (sorry if it is long).

Back in July of 2003 I woke up with severe back pain that prevented me from being able to move. I did not suffer any injuries prior to this. I went to a chiropractor, because I thought maybe I had thrown my back out and needed an adjustment. My mom has been going to chiropractors forever and has always been helped. The chiropractor, I am convinced, herniated one of my discs during adjustment. Needless to say, this was horrible. I went to see an Orthopedic Surgeon who took Xrays and after examining me determined I strained my back. He gave me a back brace, Rx nsaids, and a script for PT. As I was moving back to college soon after, I started PT near home for several weeks without any success. I saw 2 different PT, neither was able to help me. Once I moved back to school I was miserable, I had to sleep on the floor, couldn't get through more than 5-10 mins of class without having to stand up. I saw 2 more PT on campus, and again no one was able to really help me. Nothing gave me relief from the sciatica that I had developed. I insisted on an MRI and then saw a Neurologist near school. He sent me to a back specialist for PT, and he saved my life. He is trained in Orthopeadic Manual Therapy and after 4 months with him my pain was gone. Something not noticed by anyone prior was that my pelvis was slightly rotated...This incidence gave me a total of 8 months of PT.

Fast forward 9 years to June of 2012. I was at a store and when I was walking in, I tripped over inconspicuous pavement that was unlevel. When I fell I twisted and landed on my back. Extremely angry, I called the police to make a report. As he was taking the report my back started to have increasing pain, so an ambulance was called. They put me on a backboard and almost immediately I started to have the sciatica return, after not having it for so many years. Saw a doctor at the ER who dismissed the issue as some strained muscles. Was given pain meds and muscle relaxer. For several days I felt like I had literally been run over and was in so much pain. I went to see an orthopedic spinal surgeon who after examining me, his impression was Acute left lumbar radicular syndrome post minor trauma. He sent me for Xrays that showed moderate disc space narrowing with marginal osteophyte formation at L5-S1. The dr gave me oral steroids and tramdol with a f/u a week later. I was not improving, so he sent me to get an MRI and for PT. The MRI showed DDD. After no improvement and increasing Tramadol dosage all the way from 50 mg 2x day to 300 mg ER at night time, he sent me for a lumbar ESI in August. The procedure was extremely painful and gave me no relief whatsoever. I continued PT and decided to get a 2nd opinion since the dr was not forthcoming with everything that showed up on my MRI.

I saw a neurosurgeon who reviewed my MRI, examined me, and sent me for a diagnostic facet injection. I continued PT, and had the facet injection in September. It wasn't bad, but very painful afterwards for about 15 minutes. The pain went away completely for several hours, and then came back. On my f/u with the doctor, he said this was pretty indicative that my pain was coming from my facet and that he recommended that I have a rhizotomy. I continued PT and wound up having some zoning out episodes where I was conscious but unresponsive. I was taken to the ER several times, had an EEG study, the rhizotomy rescheduled from mid November to December, saw a neurologist, had a 24 hour EEG, and an MRI of my brain. I had also had a CT scan at one of the ER visits. Everything came back normal, and the doctor believes I was having an interaction with the high dosage of the Tramadol I was on and the Lexapro that I have been on for years and side effects from the Tramadol. Some changes to my meds brought me back down to 50 mg of Tramadol 2x a day. Overall I have had about 10 of these zoning out episodes, including one during the actual rhizotomy operation. This is still a mystery to me. My 24 hour EEG did show some abnormalities, but nothing I guess to be concerned about...

So Dec 6, I went in for the rhizotomy and well no one could have prepared me for the post surgical pain I was going to have. My mom stayed with me for a few days and I needed help with everything from dressing, to turning, to icing, to eating. It was horrible. I was on Percocet and Valium and wound up having withdrawal from the Tramadol since I stopped it cold turkey per pharmacist instructions not to take it with the Percocet……on top of this I wound up having a reaction to the steroids, I was so bloated, was experiencing temperature changes in my back from burning to cold, my heart was racing, and etc. I have gained 16 lbs since the procedure.

I saw the neurosurgeon 2 weeks later with worse pain, and he basically told me he was surprised the procedure did not help since the diagnostic facet injection worked. He said I had three options: fusion surgery (which I am not open to and he doesn't recommend it – I also just researched that it is not recommended for the problem I am having), learn to live with it, or see a pain specialist. He gave me a script for that and more PT. I am sorry but I refuse to live the rest of my life managing pain medication and am tired of seeing doctors who do not have convenient office hours because I work during the day and have already missed over 10 days of work since June due to this issue. I don't want to mask the pain, I WANT IT TO GO AWAY.

After doing a ton of research I decided on seeing a chiropractor who my mom recommended after she saw him years ago and got relief. I had my first visit a week ago and think he can help me. He sat down and showed me my MRI and pointed different things out, he also showed me the MRI from 2003/2004 and showed me the changes. I am going in 3x a week for adjustments, ultrasound, electrical stim, and will start massage therapy/myofascial release at the end of this month. We are also going to do PT there and his office staff are extremely nice and patience. The doctor actually spends more than 3 minutes with me and is very knowledgeable and compassionate. Next week I will start on their disc decompression machine, which I am most excited about. The adjustments don't hurt per se, but where he places his hands to make the adjustments causes pain because my back is so tender. Right now I wish I could go in and get adjusted, because I do feel good afterwards.

I am still experiencing excruciating pain and basically cannot live without my ice pack or meds. I work an office job and sitting all day is the absolutely worst. Prior to the rhizotomy the only time I did not have pain was when I woke up in the morning. That changed quickly, I now have pain when I get up in the morning and all day until I go to bed when I still have it. I go to bed with an ice pack, I rub countless types of creams on my back like icey hot and I have this lotion with arnica in it. (No, don’t use at the same time). I use a eucalyptus Epsom salt soak as well a few times a week. My mattress and bed are brand new and definitely helping in the long run, since I moved into my own place in October (yes at the same time all this has been happening, crazy timing).

Anyways, that is pretty much my story. I am still very lost, depressed, and feeling alone. The chiropractor’s office also does trigger point injections and does injections with lidocaine & sarapin (plant derived anti-inflammatory). I am staying away from injections right now. See below for the medical details from my MRI & diagnostic information, dates of procedures, and medications I am on. The pain I experience ranges from muscle spasms, to sharp shooting pain down my back, through my butt, and behind my knee. I am unable to lift, bend, twist, carry, or pretty much do anything. When I have chores to do, I take ¼ a tab of the Percocet to help me get through the pain.

MRI - T12-L1: Small right paracentral disc protrusion; L4-5: Mild Disc desiccation, broad based disc bulge with moderate-sized left foraminal protrusion, bilateral left neural and recess foraminal narrowing, Minimal spinal stenosis (This level is what my chiropractor believes is the main source of my sciatica pain in addition to again having a rotated pelvis and severe bilateral SI joint pain and tons of inflammation/muscle spasms); L5-S1: Moderate to severe (it is pretty severe) disc desiccation & disc space loss. Mild facet arthropathy. Broad based disc bulge. Mild to moderate bilateral foraminal narrowing.

Dx: Degenerative disc disease in the lower lumbar spine, Discogenic Back Pain, Left lumbar radicular syndrome (sciatica), thoracolumbar back pain, Lumbar Facet Spondyloarthropathy

7/2012 - 11/2012: PT
8/2012: Left Lumbar ESI with no change
9/2012: Left Lumbar Facet Steroid Injection for Dx purposes made pain go away for several hours
12/2012: MAC Bilateral Lumbar Rhizotomy with Facet Blocks at 2 levels caused increase in pain.
1/2013: Started seeing a Chiropractor for adjustments, electrical stim, ultrasound, massage/myofascial release therapy, disc decompression

Tramadol 50 mg 2x/day and PRN
Gabapentin 100 mg in the morning, 200 mg in the evening, and 400 mg at bedtime (I tried to get off the 2 daytime dosages per my doctor since we didn't think it was doing anything, and I started it back up again per my doctor because I started crying and feeling extremely helpless a day after stopping it)
Percocet 10/325 1/4 tablet in the evening PRN
Lexapro 40 mg in the morning
Lorazepam 1 mg in the morning, 1 mg 1 hr before bedtime, 2 mg at bedtime (I have not been sleeping well so my regular doctor increased my dosage to see if it helps)
Nuvigil 125 mg in the morning
Metropolol ER 25 mg in the morning

That is my story. I am in constant pain and will not sugar coat it. This sucks big time, I hurt, am depressed, cranky, and just not enjoying this experience. I don’t even want to talk about the insurance issue with what they will cover and what they won’t and all of the out of pocket expenses I have had…that is for another day.


  • ben_indianabben_indiana Posts: 288
    edited 01/11/2013 - 8:28 AM
    Sorry to hear about your battles. The good news is that you will find many helpful & compassionate people on this site who at the very least can listen and relate to your problems. What I notice from your post is that you have a very defined story. Alot of first posts are very undetailed. It seems like you have a good grasp on the technicals of what is going on.

    Unfortunately though I personally do not have much advice for you maybe other than this:
    Do your docs fully understand the situation you are in?
    If not you need to find one. When you say the neuro had 3 options for ya, thats not good enough. Esp when one of those options is just live with it. It can be so frustrating trying to find the right qualified people who can actually help.

    Good Luck, I hope you find some answers soon. Try searching words that directly relate to your problems. I dont know anything about rhizotomy, im in the discectomy catergory, but I am sure many people on the site are all to familiar with the procedure & its complications.
    L5S1 REMOVED herniation. Years of pain & compression. Microdiscectomy complete!! Trying to be super smart & safe with recovery!
  • Though I have nothing to contribute specifically to you, I want you to know you are never alone, because you found this site and all of us fellow spineys!
    In my 5 years on this crappy rollercoaster ride called back hell, i sure have learned alot! About myself, friends, doctors and "the insurance system", tests, etc... How I think of it....simply put in my corny sense of humour way, is that each of us is a perfect cookie, trying to find that perfect recipe of recovery. There are no two cookies the same, so one thing works for me may not for you, and vise versa.
    The most powerful thing at my disposal is my brain! I have to keep positive, find some kind of joy in a day....I have named my back Bertha..so when i am ready to explode in anger, frustration, whatever.... I take it out on Bertha, not myself. I make up really horrible rap songs to her, which usually just make me laugh. Allow myself little pity parties here and there, then "put on my big girl panties" and move on. I have wonderful places i visit often...in my head. Cheap plane fare! Oh, did i mention my warped sense of humour? As long as i laugh, and a gentle laugh at that, i feel better.
    When all else fails, i admit today just sucked! That can only mean tomorrow gets better. Or the rap songs start again!
    Please know you are being sent positive cyber vibes....and you are never alone, now that you have a whole new spiney family!
  • Thanks for the welcome!! I do have it down pat. I have had to explain it so many times, I guess I've committed it to memory . I was very dismayed when the doctor gave me three options, neither of which are options to me. As a patient, we have a right to get as many opinions as we want to find the right one that will provide hope. Today I came across Salonpas pain patch, and bought it at the store after talking with the pharmacist. I didn't expect it to do much other than make my back feel cold which is a sensation I like. But, gosh it actually helped for close to 8 hrs. You can leave it on up to 12. It has wintergreen in it, which I guess our bodies convert to an nsaid. I put it over where I am having si pain and I'm really surprised. Has anyone heard of or had sarapin injections? It is also a plant extract that works as an anti inflammatory just like wintergreen and arnica. Interestingly enough, all three are toxic.
  • hi katie my story {pain wise} is similar to your the situation is different but the end result the same ..permanent pain and your sick of tit .you can read my story in {{mrs rabbits story intro}} its on this page .i have had 3 operations and the last was the dreaded fusion ALIF at L4/L5/S1 .i also take a lot of pain killers ..but i wont go on and repeat myself .i have done many posts over the last 6 years read them if you want .!! other wise welcome to the club that no one want to be in
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Cath111CCath111 Posts: 3,702
    edited 01/12/2013 - 8:02 AM
    Welcome to Spine-Health.

    This is just my experience before my ACDF, so take it for what it's worth. My problem all started with a sharp, stabbing pain in the middle of my back, so bad that I went to my PCP for it a week before I was already scheduled to see her. This was in May. She had an x-ray of my cervical taken and said "Something's really wrong here and I want you to try PT." So I tried PT and it didn't help. So I went back to her and she sent me for an MRI. She said that Wow, things are really bad and you need to see a surgeon.

    Lucky me, I found a fellowship-trained spine surgeon who only works on spines and specializes in the cervical area. He took one look at my MRI (he never reads the reports) and said it wasn't a matter of if I had surgery but when. So we scheduled it. By this time, I was having tingling and numbness in my right arm 24/7 and my left arm felt like I had tennis elbow it hurt so bad, and I didn' have the strength to even hold a glass of ice water. After everything, I realized that I had been dropping things a lot and running into walls (corners mostly lol) due to what was happening with he nerves in my neck.

    I realize your situation isn't so cut and dry, but I'm hoping you can find that doctor/surgeon that you need to find the underlying problem. Like has been said, there are a lot of tests to try and finding the culprit can be difficult, but be sure you find a doc you really, really trust. Mine doesn't have a great bedside manner, although thankfully his PA does, but he's the best and I trust him completely. And honestly, just because you're seeing a surgeon doesn't necessarily mean surgery, they have a lot of treatments at their disposal.

    So hang in there. You'll find what's happening and someone that can make a plan for you.


    PS My surgeon is an ortho, for what it's worth.
  • I see that there have been some newbies posting in this section as well. I have been sick with bronchitis, which is fun to cough when you have pain in your back every time (sarcasm), so I didn't feel like posting.

    I have been going to the chiropractor now 3x a week since 1/12/13. He is very knowledgeable and patient, and it definitely feels good when he is able to manipulate my spine. I started the decompression machine this week, still not sure how I feel about it. The technology totally makes sense to me, and when I was at PT they tried to do the same thing but manually tying a belt around my legs and pulling. I sometimes feel like my back just needs to pop. I know that my back is all jammed up, yesterday and today are significant pain days. When the doctor palpates my SI joint, oooh it is so painful makes me want to jump off the table...usually makes me shriek. I go back and forth between creams, and recently have been using biofreeze samples that I get from the chiropractor...this stuff works nice to help a bit. Next week I start getting tissue massage, which I am seriously looking forward to and wish I could have it now.

    I noticed that soon after my rhizotomy I developed this area of skin that would itch under the skin randomly and I couldn't quite relieve it. Well recently now when the sciatica pain shoots through my back/butt/thigh, I get the pain sensation along with the itching sensation. I guess it is a common thing to develop neuropathic itching along the tract of the nerve. I did some research and the fibers that transmit pain also transmit itching sensation. So, either the nerves that they burned are healing and causing the itching sensation, or they didn't get completely burned and they are reacting by giving me the sensation of itching (it is annoying).

    I also noticed some postings about lidoderm patches, which I did some research on. Seriously, if there was just something magic that could stop the pain. I just don't understand why doctor's are not able to really help people with back/neck pain. It seems like it is such uncharted territory.

    I am actually meeting with an attorney next week to go through my medical records so she can determine if she wants to take my case on (against the property owners of where I fell). Of course, Doctor's don't actively write in the records that the pain is from falling. Since all the paperwork I had to fill out asked if I was represented by an attorney or in a lawsuit, I had to answer no because at the time I wasnt....when you answer yes, I am pretty sure the doctors pay more attention. I feel like all of the doctors, outside of my PCP and the chiropractor, have disregarded the fact that I fell and twisted by back. They are all focused on the degenerative changes in my back that I have.. But, I was not in pain before falling. This is going on 8 months and I am still in constant pain. Ridiculous. It is so defeating & depressing.
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