New here... and researching...
 

Hi everyone! I'm new here and doing A LOT of research. My Dr had said a couple years ago that ADR might be a solution down the road if they came out with better implants. Well, it looks like those are coming out now (hopefully). I have had two discectemies in the last 5 years. Here's my story if you want to read on...

In May of 2004 I was studying for finals to graduate college and started having lower back pain. No injury that I know of, and at first wrote it off as stress due to finals. I didn't really think about how it was my lower back and not my shoulders. When it didn't go away I went to my Primary Care Dr. He put me on Flexerel and 2.5 Loritabs. That didn't work so he sent me to PT. I went through my graduation drugged up. PT was making me worse and I was crying everytime I left. They scheduled an MRI for me. On Memorial day that year I was getting out of the shower, bent over to dry my legs off and shooting pain went through my back. I was holding myself up by my arms and couldn't stand. By that afternoon I was admitted through the ER to the hospital. They did the MRI the next day and showed my disc was herniated at L4/L5 and by that Friday having surgery (discectemy). I couldn't even sit up in the bed until after the surgery. It was amazing! I could get up and walk, full recovery.

Jump to 2 yrs later, October 2005, I start having radiating pain down my left side. PT helped some and epidurals a little. MRI showed the same disc, L4/L5 was herniated again and the epidurals helped me last a couple months until I could get my vacation built up to supliment my STD. I had another Discectemy (January 2, 2007), with the assurance from my doctor I would still be a candidate in the future for an ADR. that post-op was horrible. Worse pain afterward than before, they nicked a nerve sack and I had a spinal headache for 3 days. I was in the hospital for a week.

Another 2 yrs, radiating pain started down left side again. I've been through PT and epidurals again, ended in December. Now pain is going down both sides, and my legs and ankles are starting to feel weak (almost like I've taken a long walk without the aching muscles). My feet and legs are going to sleep easily, but I'm not sure if that's from my back or from the Topamax I'm taking for Migrains. The other day I had two large muscle spasms, and I hadn't had those since after my second surgery. I'm scared. I have an appointment for an MRI Monday with and without contrast and then my appointment with my surgeon is May 11th. I know he'll say surgery, but I'm just not sure what to do. I'm pretty sure there isn't a ADR surgeon in this area (Louisville, KY) and I don't have the money out of pocket anyway. I know I'll have to try to get the insurance to cover it. I just really want to try to get a "normal" life back. I'm 30 and do NOT want a fusion. I just want to try the ADR first... even if it goes wrong, I want to at least try it. I don't want to regret not at least trying it. It's just so frustrating. Especially doing all this research and not able to talk to the Dr yet since the appointments are all scheduled a month out!

just venting....


on a side note.... I blaim my best friends mom for all my surgeries.

When I was 18 I got a "tramp stamp" and showed her. She had back surgery before and the first thing out of her mouth? "You better hope you never have to have back surgery"

They've actually done very good with not messing up my tattoo though:p

Hey Symara
sorry to learn about ur pain. I am new here too. I dont yet have much input for you at this time but I have an assurance for you, you would very soon get a lot of very meaningful suggestions from a very selfless group of patients like us who are very active and senior members on this forum including Rich who started it. I am still working on figuring out what course of action should i take.

wish u luk
will give my inputs if there is something i can suggest
take care

!
 

Hi,

Welcome to this site. Actually, You are probably a good candidate for ADR. I had two discectomies, one at two different levels. One problem you might have is scar tissue buildup from your discectomies that could also cause some problems. However, if your facets are still good and it is definitely the disc that is bulging against the nerve, then ADR is the way to go. I just learned that my company is now paying for one level prodisc so your insurance might be paying for it now.

There is a lot of info on this site and I suggest you research a lot and talk with your doctors and anyone else that could help.

My two level at L4-5 and L3-4 was successful but the recovery was six months and hell. But, I other issues that took awhile to resolve with the new discs but I am now pain free and back flying as captain for American Airlines.

Mark

Welcome! I am glad you found us...I wish I had done the same much earlier in my fight for treatment. Better late than never though ;)

We are full of information here, whether you ask for it or not! I hope you find help soon, and if I can assist in any way, please just ask.

I went on Laurie Todd's website and ordered the insurance warrior book. Hopefully I won't need it, but I'm preparing myself. Today is my MRI. In a way I'm looking forward to it, just to get it out of the way.

Scar tissue is something I wasn't thinking about, is it possible that all this pain could just be scar tissue? Or would that have shown up sooner?

As far as my facet joints, my surgeon has never said a word about them, of course now that I have said that, this will be the time that he does. I had to do some research on facet joints when I kept seeing people on here posting about them since I had no idea what they were, after two surgeries and not a clue. I figure either I'm lucky, or just ill-informed.

The last two days were pretty bad, the pain was going down both legs, all the way to the feet. My feet went numb a couple times, but I don't know if that's the topamax or not, and not having migraines is out weighing wanting to find out.

It's weird, having chronic pain, you don't realize your pain levels until they change. I'd have to say that I probably live in daily pain (here recently) of a 4-5 level (1-10 scale) and the last two days have been about a 7. But on that daily level I think, I don't have it as bad as some people, because I have learned to live with it, until it changes, and you realize just how much pain you have been in. Friday my pain had eased up a little, and then increased dramatically on Sat and Sun, today it's back where it was before Friday (4-5). I just didn't realize how much pain I was actually in.

Enough of my rambling sorry. I just feel like I don't really have anyone to talk to here that it doesn't feel like I'm complaining too or that I just keep going on and on about it too.

New symptom?
 

So since last week my pain has been going all the way down to my feet. But the last couple of days my feet have felt sore, achey (sp?) almost. When I sit for awhile and get up from my desk, my feet hurt when I walk. Is this from my back? Has anyone else experienced this?

Just curious if it's my back or something else.

Welcome
 

Symara.

Welcome to our humble family!

I am glad you got Laurie’s book, it has helped many people, all kinds of patients. How did the MRI go? Don’t forget to request the digital images on CD, and of course the radiologist’s report.

Scar tissue is tricky, and most definitely COULD be a problem. Is that causing your symptoms? This is where a good specialist can help, e.g. an interventional radiologist (hard to find these types…Tim – any ideas?!)

On the facet issues, better to look into these issues now, rather than later. There is TONS of information on this important issue, going back to 2004. Do a search on this. See the links above?!

Your pain issue sounds nasty. Did you have any luck with any natural stuff? E.g. magnesium? Herbs? Did you cycle through all the NSAIDs?

Hope this helps….

I actually have not tried to many different things. The only natural thing that seemed to help that I did try to was fasting. (ducking and running for cover) I think this helped because it cleared out my bowels and there was no pressure in my lower abdomen. I have not tried anything new, medication wise, since my last surgery. I have been on Hydrocodone and that's it. Flexeril and steriods have never helped. Not sure where to even start as far as herbs and such. I have seen people talking about some of the NSAIDS and was going to bring this up at my Dr's Appt on Monday also. What is one I keep seeing? Cymbalta?

as far as the fasting- it was nice to be out of pain, completely, for the two weeks I was doing the Master Cleanse. The first time in years I had felt no pain at all.

Symara,

I never noticed the pain easing up pre-op by being regular but it definitely helps post-operative. Now that's the one time I experience discomfort and it goes away once I have activity in that area.

One thing I was tipped off to was snack chips made with Olean Oil. This oil has a natural laxitive property to it. Although the chips I had tasted like flavored sawdust, I have a small portion daily now.

Good luck to you,

Bob

Olean, is that the fat free chips?

The ones that everyone joked about "anal leakage" for a long time?

I have some smooth move tea at home. I've never been a regular person, so I never really noticed how it affected my pain, that was just my theory on why I was pain free durring the fast. I can't think of any other reason, except for that I wasn't putting any chemicals into my body durring that time either.

So I'm going to pick up my report on my MRI today. I'll post it here and hope someone here might be able to help me figure it out if possible. I e-mailed one of the contacts for the Freedom/Prodisc Clinical trial and they said I am not a candidate due on the fact of where I live of course, but they would let my interest be known. They will be opening other sites throughout the year for the clinical trial. They just have the two right now.

I hope they open up on withint 150-200 miles (their maximum radius), but I doubt it. That's just my luck. I just will have to fight the insurance for this, I'm sure. But I keep getting ahead of myself, I need to wait and see what the Dr says Monday. It's not that far away now.

Scar tissue
 

When MRI is done in patients who have had prior surgery, the major reason is to distinguish between scar tissue and new disk abnormalities. Scar tissue is typically treated conservatively with physical therapy and meds, while new disk ruptures, spinal stenosis, or abnormalities at a different level can be treated in a number of different ways, including surgery.

Surgery generally isn't performed for scar tissue, since it is difficult to separate the involved nerve root from the scarring, and it is likely to recur.

I came across a few articles on microsurgical treatment of scar tissue with injection of compounds that dissolve the scar, and I believe that some surgeons are experimenting with laser treatment of scarring, but I didn't keep any of the references.

It would be worthwhile to ask your doctor about treatment of scar tissue involving any nerve roots, as it can certainly cause significant symptoms.

Mri
 

Here it is:
POST SURGICAL MRI L-SPINE

5/4/2009
History: 30-year-old female with low back pain, previous back
surgeries, pain radiates in both legs.

Procedure: Multiplanar/multiecho sequences were obtained through the
lumbar spine with and without intravenous contrast.

Findings: Vertebral alignment is intact. No gross signal changes are
seen involving the vertebral bodies other than some end plate signal
changes seen at the L4-5 level that could be postoperative in nature.
At this particular level there appears to be a left paracentral disk
protrusion which appears to be more prominent compared to the prior
examination and appears to impinge upon the exiting nerve root. No
other focal protruding disks or significant stenosis is noted at the
remaining levels. No paravertebral soft tissue abnormalities are
noted. Postsurgical changes are seen involving the posterior
subcutaneous tissues posterior to the spinous processes.

IMPRESSION:
1. There appears to be a moderate sized protruding disk in the left
paracentral location at the L4-5 level which appears to be a more
prominent comparison to the prior examination.
2. Postsurgical change is otherwise seen at the L4-5 level,
particularly posterior to the spinous processes.
3. No other focal protruding disk or significant stenosis is noted at
any level.


Is this just a fancy way of saying it's herniated again?????:confused:

I would upload the pics, but apparently work won't let me upload my own pics cuz it recognizes them as data risks.

ankles and feet
 

BTW, as of yesterday my ankles and feet are now swelling huge, has anyone else had this happen???

Meds can cause this...
 

Unfortunately, there are many things that can cause swelling in the feet and ankles, but it should be checked by a doctor ASAP. What meds are you on?

hydrocodone 10 phenegren 25 (break in half everytime I take with a hydrocodone) and topomax 50mg.

I researched the topomax and cannot find the swelling anywhere. I just talked to a nurse I work with and she said that she has seen the pain and swellin in the feet when discs are laying on the nerve root before.

I had swelling in my feet after the initial injury both discectomies. After pregnancy was ruled out, I figured it was due to the disc(s).

So I went to my appointment this morning and he said that he could do another discectemy??!!!:eek2:

He had told me after my last surgery the next step would be fusion or ADR if it was possible at that point. But now he's saying he can do a third discectemy. I'm so confused. He did refer me to a local doctor that used to do ADR but he's not sure if he is still though. I have called and left a voicemail with this one, a Dr Majd, to set up an appointment to discuss the possiblilities. He was envolved in the FDA clinical trial for the Charite disc, and I would rather have the Prodisc though... not sure what he does now, won't know until I go though.

I think I knew more about the ADR procedure than my current surgeon though. He wasn't sure if they could clean out the herniated disc since it was a abdominal procedure????!!! huh? Isn't that what they do? Now I'm just waiting for a phone call from this other Dr's office.

I'm just afraid if I go with a third discectemy I won't be able to get the ADR in the future and then it's also just prolonging the inevitable of fusion or ADR. I seem to be getting a surgeyr every two years it seems.

Discectomy would not proclude ADR
 

Symara,

Having another discectomy would not preclude you from having ADR in the future, buts lets be honest here---they are not really working. The disc continues to degenerate and protrude, and they can only remove so much (a discectomy is where they go in and remove the portion of the disc that is bulging). If your surgeon thinks they cannot remove the disc when they do ADR surgery, he is very very uninformed?! They have to remove the disc in order to put in the artificial disc, I know that without even going to med school!!

In my opinion (for what it is worth) you need to get another opinion, with a different doctor who knows more about ADR and fusion. Do you want to have discectomies over and over for the next several years, only getting temporary relief?? Go to at least 2 other spine doctors and get them to look at your MRI and your medical history, and get a more informed opinion. Your current doctor may be making money from performing discectomies on you, but from what I can tell it is not a long-term solution and is not working.

Good luck,

Charles,

Yes, that is my thought too. i walked out of there and looked at my husband and said " I know more about ADR than he does". My husband replied that he probably had never researched it because he just sends people to the other surgeon that did the clinical trial.

I called the other surgeons office and was told they are understaffed today and put through to voicemail. Called back this afternoon and was told they would get back to me tomorrow since I was a new patient.

I have also sent an e-mail to Dr. Balderston to see if he can do a long-distance consultation if I send him my medical charts and tests.

I know this would be a temporary fix, I know I would not get my life back the way I would have at least the chance at getting it back with ADR. This is only making my bones get closer together. I'm scared if I did a third discectemy ADR down the road would be out. But then again maybe it isn't and down the road the insurance will be approving it. I'm also scared he's going to get in there to do the discectemy and find he can't do it and decide to do the fusion without my consent. He can't do that can he???

The good news is he doesn't want to do a fusion because of my age. He says I'm too young for a fusion, he doesn't think I'm to young for ADR, he just doesn't know anything about it. He's a fairly young Dr... I would say in his early 40s late 30s, you would think he would stay up on new technology.

I've been to a spine doctor who has a teaching position at a medical school, and when I asked about ADR he told me that 'you're not a car, you can't go around putting in spare parts, you know'. When I pointed out that they do knee and hip replacement, he said that they 'have had some success with that, I suppose' :insane:

He knew nothing about it, and told me it was the most ludicrous thing he ever heard of.

So yes, we often know more than these high priced 'experts'. Sometimes it doesn't take much.........

Sorry for the sarcasm...I'm having a rough day, red tape wise.

Well, I just found out that Dr Balderston does not do consultations or appointments ovre the phone:(

Just thought I'd give everyone an update on what I have going on.

I can not get in to see a long term pain management doctor. Apparently no one in this area wants to do it long term :raspberry: The doctor I was seeing does, but he's leaving his practice and doesn't know where he is going right now. So I went to my primary care doctor and he put me on the fentonyl (sp?) patch since the hydrocodone wasn't working. Wow, what a difference. I feel normal again. Very minimal pain, on my 4th day of the patches. I haven't had any side affects really, so I've been able to come off of the phenegran I was taking with the oral pain meds. I'm not as sleepy and more alert now! I feel so much better. I also got a water pill for the swelling in my feet and that has helped a lot also. My feet are normal now. I know all this is just masking my problems until I make my decision, but it's nice to be pain free for a little while.

And I have done my research on the patch. I know it's going to be a pain to come off of. No matter what surgery I have, I'm going to start wheening off of it before the surgery and tell them to not put it back on after I have it.

I have 3 doctor appointments set up, 2 local and one in chicago. The chicago one is first on June 19th.. Watch me get 3 different opinions, even from what my original surgeon said...

So here's a question for ya... Do you think it would be alright for me to walk? I wasn't cuz the pain was so bad, but now with the patch the pain is minimal, so do you think walking would be alright for my disc or could it do more damage?

yes weight bearing movement like walking or ellipitcal is very good. Don't push it but bed rest is bad. It's important to keep as much core muscle strength to support your back. Just listen to your body and watch your posture.

Are you driving while on the Fentanyl patches? I went from Vicodin, to Percocet, to Fentanyl Patches to Morphine pills to deal with increasing pain when trying to return to work post 2 level ADr ...I didn't realize how "fuzzy" I was on these serious meds and I hit a parked car. So I had to seriously re-evaluate the situation. I tried all those hard core meds and they didn't really help. I had better success with a combination of Vicodin and an anti-inflammatory called Relafin. I was surprised how much the anti-inflammatory helped rather than uping the narcotic levels.

I'm not fixed, but I'm trying hard to get off the serious meds. I spent too many years uneducated about my pain and lying in bed as much as possible to minimize the pain. I really didn't do myself any favors. The trick is to learn how to move and exercise in healthy ways for your back and do as much therapuetic exercise as you can tollerate. You probably need PT to help guide you...and if your lucky enough to find a really good pilates instructor...you could try private pilates sessions but things need to be modified in order for you to get good results. I've discovered that there are a lot of pilates instructors who are unable to adjust and accommodate people with back issues, but if you find one, they are priceless.

so here's an update...

I went to my original surgeon Monday to get some answers to as to way he wants to do another discetomy when he said he couldn't and instability issues and all that.

The interesting things was while we were in the waiting room, his nurse was acting as receptionist and tells one of his patients he is getting aways from back surgery and leaving the current practice to start one with a few other specialists, like an oncologist, that focuses on tumors of the brain and spine. All this is to happen in like the next month!

Now I'm just thinking he wants to do a quick fix by doing the discectomy so he can go on to bigger and better things.

we get back there and he goes on to tell me nothing about what i just over heard, but that he doesn't want to fuse, as if I'd let him, since I'm so young, and thinks the discectomy can at least give me some more time. "it could be 1 yr or 20 yrs before you have to have surgery again" instability should not be too much of an issue according to him....

i'm think quick cash grab honostly....

Symara,

I think one discectomy is enough. I don't know if there was a partial laminectomy(hemilaminectomy) that came with your discectomy but if there was, you probably have a lot of scar tissue that doesn't help matters and alo if they took too much of the lamina, their could be some stability problems. I'd skip the offer of another discectomy and go straight for the ADR if the disc is your only problem.

Mark

Mark,

That's what I'm hoping to do, but only if I can get the insurance to cover it. So we'll see what happens.

I have 3 more dr's to get opinions from in the next 3 weeks. Pretty much one every week until July 4th. So That weekend I'll probably be making my decision on what to do and start proceeding that way.

So went to Dr Mather in Chicago...
 

and wow, what a difference between Doctors! Apparently the Dr I was going to doesn't know what he's doing... Even the staff at M&M Orthopaedics seemed to know more.

They did an x-ray as soon as I got there, and then Dr Mather came in. He told me I was not a candidate for ADR for 3 reasons:
1. Weight
2. Nerve compression
3. I have a facet joint cracked

I know the facet joint is the main reason he won't do it, and I wouldn't want to do it with everything I've researched. I'm just mad that my previous surgeon didn't pick this up.

He also said that my disc is completely collapsed and a discectomy would do nothing for me and only make it worse. I'm getting very close to bone on bone. He wants to do a fusion, which at this point I understand completely. I just wish there was another option. He wants to do the fusion with the screws and cage and instead of a full bone graph, he just takes marrow out of the hip. He said I would only be off 4-6 weeks because of that, not longer due to a bone graph healing.

I really trust this Dr, he put me at ease and since he does ADR I know he was being honost with me.

I have two more Drs to see in the next two weeks. I'm going to see what their suggestions are and how they do their fusions. Depending upon that I will make my decision on who to go to.

And for those of you that asked about him specializing in failed back surgeries, yes, he will do revisions. He has only had to do one, and didn't specify if it was his own patient or not, but will work on others who saw another Dr for the ADR.

He has only done 11 ADRs due to insurance not covering them, but I would say if he's only had one revision out of that, it's a pretty good success rate. He was talking about how difficult it can be to place them and having to make sure they are correct, so he seems pretty compitent (sp?) even though he hasn't done many.

Local Dr
 

Went to the local Orthopaedic surgeon this morning. He was also better than my original surgeon.

He wants to do two level fusion though!!! He doesn't think L5-S1 can handle the L4/L5 fusion and will end up going out also.

Oh I think I forgot to mention before, the Dr in Chicago also recognized that my L5/S1 is starting to degenerate, but as long as I lose weight after my fusion I should be good.

I have gone from one disc having problems to two discs and a cracked facet joint. I have learned my lesson about getting multiple opinions, never automatically trust the first Dr you talk too!!!!

I have one more Appointment July 2nd with another surgeon. I guess this will help me decide which way to go.

In the mean time, the local surgeon today has a nerve test scheduled for me to see what kind of permenant damage I may have.

another doc
 

.. but now is the best time to find out exactly what is wrong with you so that you get the right treatment. Hope you are coping ok with all the different opinions and just focus on the fact that you are getting closer to being able to decide properly.

Second & third opinions....
 

AJ, good point -- now is the time to get as many diagnostic opinions as possible!

Symara, which facet is cracked? What imaging did the doctor have that led to this finding -- was it different than the imaging the other docs used? Sometimes, the imaging equipment between different doctors can (and usually does) make all the difference in the world. That's why some patients will travel to other states to get a much closer look -- literally.

I suppose I would be concerned if two different doctors looked at the same imaging, and only one found the cracked facet. Is this the case?

Harrison,

The Dr in chicago and here both did x-rays. That's how the Dr in Chicago saw the cracked facet joint.

My neurosurgeon never did x-rays, just the MRI. His theory was that the discectomy would work because I wasn't in constant pain since my last surgery 2 years ago. I asked him about stability and he said I would be fine. But these two Dr's have stated that is wrong and even implied it could make me worse.

I think the facet he was showing us was the either the L4 or L5, not sure which exactly. It was on the x-ray, not the MRI. I just don't understand why the neurosurgeon never did an x-ray if you got different information from it than a MRI. I feel like he was really just trying to rush the surgery through and wasn't looking at me close enough. I wonder if I had gone to someone else the 2nd time if I would be in a better place right now.