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Old 08-20-2004, 02:24 PM   #1
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mel1977 HB User
What do you think?

Just doing some thinking on what my options may be regarding my back. I want personal stories on what your options were, what you chose to do, and your results. I have a posterior protrusion and stenosis at C5-6, bulge and stenosis at L4-5, and bulge, annular tear, and spur at L5-S1. I suffer from pain all over including my neck (headaches and pain that radiates through both shoulders), mid and lower back, hips, thighs, buttocks, groin, abdomen, knees, entire left leg and heels (burning, pinching, spasms, regular pain). I had my partial discectomy at L5-S1 in 2002, and at that time only had DDD in addition to my bulge. I want to apologize for repeating my story, but I am interested. As I have said before I see the back specialist for the first time next Wed. Thank you in advanced, and I look forward to reading your stories

 
Old 08-20-2004, 06:25 PM   #2
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Jenna'sMom HB User
Re: What do you think?

Dear Mel,
I am a 44 year old female with a great husband, and a six year old daughter. One dog, one cat.

I am 4.5 weeks post op from Posterior/Anterior Interbody Lumbar Fusion L4 to S1. I had cadaever bone instead of cages, and have 6 pedicle screws and 2 rods holding it all together.

22 years ago I was posteriorly fused with a harrington rod and bone graft from ilia from T5 to T12 for a 49 curve due to scoliosis. I still have a 19 degree curve in my lower back.

My current fusion is the result of several different problems. Hyperlordosis due to "flatback" from my previous surgery. slightly bulging disc and moderate stenosis at L4/5, and spondylolisthesis with L5 slipping.

I started having pain about 2 years ago, that got worse when I did my morning walks, did PT, no real relief. Had pain blocks, which were more diagnostic than anything else. I got relief for a week max. Due to all things combined, my doctor, who is the head of Spinal disorders/scoliosis at Cedars-Sinai in Los Angeles said he thought I would benefit from a fusion.
Having had great results from my first one, I decided to go ahead with this. It was going to be an eventuality because of the lordosis sooner or later. I thought sooner was better, because I'm only 44 and can recover easier and my HMO insurance would cover it, and I work for a really supportive company that's been behind me all the way.

Everyone's problems and situations are different. You need to make a decision that works for you.

I wish you good luck in your decision.
Take Care,
Julie
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APLIF T4-S1 on july 19, 2004
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Old 08-20-2004, 07:27 PM   #3
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Stormy01 HB User
Re: What do you think?

I have a torn/herniated L4-L5 disc with left leg nerve root impingement. I've had a bad back for about 12 years, but it got real bad when I fell in a weird twisted way while clearing some land we bought. I was tugging on a grape vine when it gave way and I went butt over tea-kettle, so to speak. I also broke my scapula, practically knocked myself out and turned my back into a screaming mess.

After a few years of dealing with quacks trying to find out what was wrong with my back, I finally ended up with an excellent Ortho who wanted to find out just as much as I did. After doing every test in the book, I agreed to a discogram, and that told the tale.

Being afraid of the knife, (especially after the dicogram,) I decided to do the least intrusive thing possible for me. An IDET. (Introdiscal Electrothermal Therapy.) Unfortunately, three weeks after the prodedure, I fell on a twisted rug in the dark. (The cats play with them and I was too lazy to turn on the light.) I sound really clumsey don't I? hehe.

Anyway, I just had another MRI to see what damage the IDET has done as I heard that failed IDETs can have some not so nice effects on the disc. My disc is reherniating or in the first stages of collapsing, which is what happens to failed IDETs. Oh joy. The only thing left for me is surgery and my only option is to decide what kind.

I have applied to the Artificial disc implant clinical trials being done by Flexicore at Brighams and Woman's Hospital in Boston, and I have an appointment to go see them on November 1st. If I'm included, I will either have a Fusion or the Artificial disc. They are doing 2 ADR's to 1 Fusion as a control. Either way, I'll be having the surgery done by the best surgeons in the best hospital this side of the Mississippi. I can't pass that up, and since they've already pre-qualified me, I have high hopes of being invited into the trials. So even if I get a fusion, which I am prepared for, it will be done by the best in one of the best hospitals in the world.

If not, I'll have to find a doctor to do a fusion, as my insurance wont ever pay for an ADR. I am reading these boards and soaking up what seems to be the best fusion types and I love the sucess stories as well as the non-sucess stories. This is information I need to know in order to make an informed decision. Right now I'm leaning towards the caged fusion with bone harvested from me and my own blood. There is one surgeon about an hour away who does this. He'll be my second option after I see the people in Boston in November.

That's why I'm here. Plus I've become to enjoy all your insights and humor in the face of horrid pain. I too am dealing with the pain, and many a day goes by that I get a good laugh from someone on the board. I appreciate that more then I can say.

That reminds me... anyone know anything about a drug called Avinza? It's a one a day, timed release morphine pill. My Primary care just put me on it (They had to order it and I wont get it until Tuesday.) I take 60mg 2x a day of Oxycontin. It's not working anymore. Any suggestions would be fine by me. But this is what I think.... better to take drugs and have a semi-life, then none, and want to jump off a bridge. hehe.

/hugs to all

Stormygale

 
Old 08-20-2004, 07:35 PM   #4
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mel1977 HB User
Re: What do you think?

wow, you two have a lot on your plates!! I have loss of lordosis in my neck, but I don't think it is severe. My main concern is going to school and bending over papers when I study and so on. I need to be able to fully concentrate on that. But, I have to be as pain free as possible in my back too. I didn't mention, but I am only 26. I am very optimistic that I will have good results no matter what they do, I am not scared at all of surgery, I have had 5 (though only one back related) and have always healed well. Though I know surgery is a last and final option, it does not scare me if it is possible I will have one. We shall see.
Keep the stories comin', this is really neat

 
Old 08-22-2004, 02:28 AM   #5
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mel1977 HB User
Re: What do you think?

Am I doing something wrong? Every time I post a topic, I get like two responses and then nothing. Am I over doing the posting? Am I getting,oh, dear I say it, ANNOYING? I hope not, I am on here with the best intentions!! Well, whatever the case, wish me well on my visit to the doc on wed????

 
Old 08-22-2004, 05:50 AM   #6
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colleen b HB User
Re: What do you think?

HI Stormygale!

I tried avinza and unfortunately it did not work for me. Maybe you will have better luck. I had to take 8 percocet a day (10mg) to get relief. I am now on mscotin with the percocet. 30mg, 3x's daily. Still no relief. The percocet is the only thing that helps me. I do not know what to do. I think my pm doc thinks I am an addict.

Good luck!

COlleen

 
Old 08-22-2004, 09:44 AM   #7
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Stormy01 HB User
Re: What do you think?

Well, after being on narcotics for 4 years, I know I'm an addict. There isn't getting around that. I'll probably have to go into some dry dock somewhere to get clean if I ever get better. What is MS Contin in relation to Oxycontin? I take 80mg a day of Oxy. What's the difference? I'd like to know so I will know what to ask my PCP for breakthrough.... I'm not real happy with this change, as I just wanted to go up on the Oxy a bit. /sigh.

Why do we always end up being the guinea pigs for the drug companies and the ADR companies too? I suppose it's because we're so desperate we'll try anything. hehe.

Thanks for the input. I'd love to hear from more who've take this Avinza stuff.

Sorry for hyjacking your thread mel!

 
Old 08-22-2004, 12:04 PM   #8
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Harmony5 HB User
Re: What do you think?

Hi Mel,

I wish you the best as you see the specialist Wed. I always write down a ton of questions for the dr. so I don't forget something. There is so much to ask and consider.

Here's my story:

I started with back pain when I was 16....I am now 51. I have excessive lordosis which has contributed to my early DDD. My L-5/S-1 is now completely collapsed causing me a great deal of pain in my back, hips, legs, and feet. My entire back and neck also hurts due to DDD, fibromyalgia and arthritis.

For years, I was told surgery would not help me and if I had it there would be less than 50% success. I tried the tens unit (helped more than anything), epidurals (did not help), 3 times to PT (did not help) and medications that I cannot tolerate or they just touch the surface anyway.

The past couple of years I have gotten to where I need a wheelchair to walk and cannot stand without severe pain.

I had a disectomy last year. The dr. wanted to try that before doing a fusion to see if it would help since it is less invasive. It did not help. It relieved my foot and leg pain for a few months but not my back pain. The foot and leg pain is now back and worse than last year.

I am now waiting to schedule a fusion L-5/S-1 for October. I have tried everything else and don't want to be in a wheelchair for the rest of my life and continue with this debilitating pain.

My advice to anyone is to not wait as long as I did to get help. I suffered way too long. But do try everything else before considering surgery.

I am not sure if the fusion will help me and I am concerned about having it. On the other hand, I have no other option and if I don't try, I will only get worse. If there is a slight chance a fusion will help, I need to have it.

Take care, and let us know how your dr. visit goes.

Gail

Last edited by gaildw4; 08-22-2004 at 12:06 PM.

 
Old 08-22-2004, 01:24 PM   #9
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mel1977 HB User
Re: What do you think?

gail, thanks for writing! I understand completely. I too have DDD and the lordosis in my neck, as well as the other stuff I mentioned before. I feel so young to have these problems already, especially b/d normally I am in good shape. If you saw me on the street you would not even guess I have the back issues I do havel I am not scared of sx, and these days if you have a good dr and are overall in good health, then the prognosis is usually very good, but a lot depends on how much pain you were having prior to sx. My biggest concerns are leading atleast the next 20 years as pain free as possible. I am going to return to school next fall, and I cannot sit right now for even fifteen mins w/o pain, and I certainly don't want to be doped up while I am trying to get my LPN-MONDO BAD JUJU- so, they will have to do all they can to fix me. I have been reading up on my diagnosis', and most of the sx options are pretty inevasive. They can do an injection at the small bulge (L4-5), another partial discectomy at L5-S1 (don't know how the tear could affect that though), and surgically increase the space in my neck so I can funtion there. I would be willing to wear braces(neck and back,to ensure that I DON"T do something stupid (I tend to not pay attention to the way I move)and to enable me to heal well(though I know some drs think that braces inhibit the ability to heal better, maybe just a neck brace), and even consider in patient rehab if they think I'd be a candidate. I know I am really jumping ahead here, but hey, I am bored these days and I hate the waiting!
I really liked E-Stim when I had therapy a few years ago, but now they don't think that heat is good for back injuries, and my therapist won't even put me on a heating pad or ultrasound. The most he would do is an icepack after each session. I think PT is only good for strengthening to prevent additional injury, but for a disc issue and other forms of back problems, I have found that therapy in no way fixes it. I think it is done to save time(unless you are post-op and need the therapy to get back to normal, then it is awesome). well, blabbed enough-I am getting anxious, and I will let ya know how the appt goes!

 
Old 08-22-2004, 04:45 PM   #10
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colleen b HB User
Re: What do you think?

Hi Stormygail!

MS Cotin is a form of morphine. He is upping my dose slowly. He says he needs to introduce it to my body. I take that as he needs to get me hooked. Isn't this a great way to spend our lives?!LOL

Any other questions let me know!

COlleen

 
Old 08-23-2004, 07:53 PM   #11
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Rampage HB User
Re: What do you think?

Hi, mel1977 -

Here's one more for you:

I was injured in a horseback riding accident in 2000. Within 2 weeks of the injury (which included being knocked unconscious and suffering a concussion), I began a 3-year effort to diagnose what was wrong. I kept telling them it "felt like my pelvis was splitting in two." In the first year, I endured an XRay, an MRI, and 2 rounds of PT. No luck.

The following year, 2001, I had another MRI, to no avail. By this time, I was on narcotic painkillers. I was in so much pain I begged my dr. for an extended visit to "brainstorm" about what the problem might be. This is when he discovered my first problem - sciatica. It took 10 months to diagnose. Once I had an injection, I decided I could stop taking the painkillers (in denial over the length of the shot relief). Plus, I did my third round of PT and tried accupuncture. Again, no luck.

In 2002, I had ANOTHER MRI, my fourth round of PT, a second round of accupuncture, and 4 months of chiro. Pain continued and continued, and any relief I obtained was short-lived and diminished over time. Yet again, no luck.

In 2003, I was referred to an ortho, who conducted several diagnostics - SI joint injections, epidurals - and YET ANOTHER MRI. Since no MRI I'd had since 2000 showed anything, there was no indication other than my word that there was a problem. I continued to repeat the same pain - I couldn't walk, exercise, sleep without pain - and insisted my last option to diagnose a problem, a discogram, be utilized, and quickly. That August is when the discogram revealed what no MRI had...an L3-4 annular tear. Finally.

This year was spent getting my fifth MRI in as many years (just for an updated snapshot), getting an injection when I was just desperate, and trying to figure out who to pay for the IDET (insurance doesn't cover). I somehow managed to figure something out, and had the IDET done 7/23. I have not had a "pelvis-splitting" pain since. The lumbar corset sucks, and I can't sit for 2 months, but I am hopeful I might finally have a normal life.

So, that's my story...a frustrating, but potentially rewarding (I hope), journey.
__________________
Rampage
Accident '00
Sciatica Diag '01
L3-4 Tear Diag '03
IDET '04
SI Diag '04
Stenosis Diag '06
Bulging Disc L4-5 Diag '06
DDD L3-4 thru L5-S1 Diag '06
Laminectomy '06

 
Old 08-23-2004, 09:27 PM   #12
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mel1977 HB User
Re: What do you think?

wow rampage, that is a lot of stuff to go through and not have a diagnosis. I wonder why the MRI never showed the tear? I too have an annular tear at L5-S1, though not the severe pain you described. One question, what is the IDET? I have so many thoughts speeding through my mind on what my treatment will be, why not throw another one in there? One full day to go til I see the MD. Getting nervous, but atleast hopefully I will finally be able to tell people what is going to be done.
I hope you have a good recovery. I am very familiar w/corsets, as I have put them on other's many times, and I know braces SUCK. But, hang in there, and don't do anything that could cause reinjury! Good luck-any plans on getting on a horse again? My mom is an avid horse lover, I think she has six right now, and has been thrown on a number of times. LUckily, a few broken ribs and tailbone bruising is all she has had done, I wish though that she wouldn't ride alone. She is a long way from me and I get worried that someday, it won't be a simple thrown incident. Luckily, she wears her helmet, and since she is an RN, as well as being a Certified Rehab nurse, she is aware of symptoms and stuff. But, enough rambling. I wish you well!

 
Old 08-23-2004, 11:28 PM   #13
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Stormy01 HB User
Re: What do you think?

mel,

Having had one, an IDET is Introdiscal Electrothermal Therapy. A Catheter is injected into the offending disc ( discovered via discogram,) and a small metal heating wire is threaded into the disc so that it coiils around the inside wall. The disc is then heated to 195 degree for 17 minutes. The theory is that it will kill the nerves that are screaming with pain, and as it cools, it will pull the tear together.

It worked for my brother. He'd off playing golf. (Although too much will put him on his knees.)

I had it done August of last year and I fell two weeks into recovery and it did not work for me. They were not at all concerned that I fell at that point, it being so early into the recovery they felt I couldnt have done any damage. So I guess I am the one out of four that it doesn't help.

The good thing about it is that you are still free to have other surgery if this doesn't work for you. You can still have a fusion or an ADR. Good luck with your choices.

Stormygale

 
Old 08-24-2004, 07:39 AM   #14
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Jenna'sMom HB User
Re: What do you think?

Hi Mel,
Personally I think you have the right attitude about surgery. You're right, if you choose a good doctor, have a positive attitude, outcomes are usually pretty good. There is alot of negativity on these boards towards surgery, but like I posted before, it worked for me -- twice.

I am now 5 weeks post op and going back to work the day after labor day. I'm back to doing laundry and stuff around the house (with the help of the grabber --the post surgery fusion mantra -- no bending, lifting or twisting).

School is really important, and like you said you are young. If you do go the surgery route, I would take a semester/quarter off to recover. Then you can go back full force and really concentrate.

btw, my doctor didn't brace me either, and I'm glad. It made me engage my abs that much sooner. My former PT told me to do isometric ab stuff starting the day after surgery, she was right.

Anyway, let us hear what the doc says, okay.
Take Care,
Julie (Jenna's Mom)
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APLIF T4-S1 on july 19, 2004
Harrington rod T5 - T12 1982

 
Old 08-24-2004, 08:12 AM   #15
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out2lunch HB User
Re: What do you think?

Hi Mel, Boy, do you sound alot like me with your symptoms etc.!! I'm only 36, and was injured in a car accident, that wasn't my fault!! All 3 of my kids were injured in the car as well, fortunately not as seriously as I was!!
I've been dx'd with everything listed in my sig below (so won't repeat it LOL), plus sciatica! Also told that surgery's NOT an option for me, though I'm not sure I'd take it if it was......I'm too chicken LOL!!
I've tried just about every med that's available, physio and massage! The most evasive I've tried were kenalog and botox injections! The first had no affect whatsoever, and the botox made me 10x worse, including that I couldn't walk for wks!!
I'm told that I have no choice but to either take meds for the rest of my life, or learn to live with the horrendous pain and physical limitations that I have without it!! When things get really bad, I can't stand up straight, or sit/stand/walk for ANY length of time!!
I just recently lost my primary dr, so now am searching for a new one, but am not having any luck at all! Every dr within a 2hr drive from me, are NOT taking new patients! Walk-in clinics don't want to deal with narc meds either! I had a pm dr, which is the one that gave me the botox and the meds I'm on now, but he doesn't "have time for refilling scripts"!! Afterall, there's more money in doing evasive procedures and injections, then there is in filling meds!!
I have no idea what my choices would be now, 'cause I have no dr to give me any or to refer me to any specialists!! I do feel that things are getting worse with my back and neck, as I've lost complete control of my legs and fell 3x, and my tailbone hurts so bad that even just touching it is horrific! I'm wondering if my falls are the cause of that too! Though, I'm not so sure I'd want to go and stand infront of a dr to have it looked at LOLOLOL!!
I wish you the best of luck tomorrow, and will be thinking of you!! Let us know how it goes ok?? I know that you'll make the right decision for yourself, no matter what the choices are!! As I know you'll be making it on what's right for you, and not on what stories you've heard here! ((HUGS)) take care!

 
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