L5/S1 Lessons Learned

[cls]

October 2008 I discovered this site and began my quest for information on DDD and artificial disc replacement. I was impressed by all the research and well educated people posting on the site. I read as many posts as I could find that was related to my situation and began to follow many people through their diagnosis, treatment and surgery all the while trying to determine what would be the best solution for my L5/S1 DDD. It was and is a daunting task to decide what is the best solution for any individual person – ADR, Fusion, NS vs. OS, the list goes on. Until recently, I was an IT business analyst so I approached this problem with the same skills I applied in my business career. First step was requirements gathering and boy did I research this to death. But as you will read, I made so many mistakes that I would surely have been fired if this experience was a business scenario. So for what it is worth, here are MY lessons learned which someone out there starting their journey might find helpful.

I first received my L5/S1 DDD diagnosis in 2006 but this was after 6 years of “dealing with” and doing my best to ignore pain and signs that something was wrong. Let’s face it, it is not normal to have sciatica lasting three to four weeks at a time (so severe that I would get up at night and pace around my room from the pain) and coming on every other month or so. After finally getting myself to an OS and having my first MRI I was sent for physical therapy. I was a good patient and mastered as many core and back strengthening exercises as I could. I was thrilled as this seemed to work well and because I was feeling so good I stopped the exercises. Obviously this was my first and biggest mistake. So first lesson learned – I should have kept up with my PT and known that I needed to do these exercises for a LIFETIME. I often wonder if I had continued my exercises and practiced good posture while sitting at a computer all day could I have prevented the rupture that occurred in May 2008? Who knows.

In May 2008 I began having HORRENDOUS burning, stabbing pain in my lower back and left buttocks. The pain was 24/7. I spent the entire summer icing, applying heat and living off Advil. Knowing that I had DDD, I knew that I had somehow further damaged the L5/S1 so instead of going back to the OS I read everything I could for naturally healing DDD. That summer I was in Whole Foods with my husband and Andrew Weil had an issue on healing back pain. I bought and read the magazine cover to cover and convinced myself that I could master the pain and live with DDD. After all statistics say that less than 10% of back pain sufferers really need or benefit from surgery. Exercising and giving your back time seemed to be the answer to living with DDD. I was convinced that I too could win the battle. But more and more signs said differently. I could no longer exercise, sit or stand for any great length of time and the most frightening thing at the time was that once I laid down I found that it took 3 or 4 minutes in order to get up and be able to stand and walk. I stifled every sneeze and suppressed every urge to cough to avoid the shocks that were sent through my body after doing so. Finally by late August I knew I had to go back to the doctor. This second MRI revealed SEVERE DDD at L5/S1 – not much of surprise really but I was shocked at how close the bones were to each other. The OS offered to fuse. I just could not bear to think of this and told him I wanted to try PT again. After six weeks of PT it was obvious to me that my condition was serious (as if the pain and mechanical limitations were not enough – wake up!) and I had to start investigating surgical solutions. Over a course of three months I got opinions from 2 OS and 1 NS. All were reputable and one OS was a co-inventor of the Maverick disc who “hates to fuse”. I was just beginning my understanding of ADR and after reading all the posts from the ADR Support site I went armed with all kinds of questions. How do my facet joints look, what is the best disc for this level, how do you ensure proper positioning, etc, etc. During my appointment the OS looked at my MRI and asked me some questions and then I started to fire away all my burning ADR questions and he looked at me squarely and said, “I don’t think you are a candidate for ADR.” Stunned I asked why and he said that from the looks of my MRI, I may not have any disc left. So from the OS who hates to fuse he said that he thought I should fuse. I now had three top docs indicating that fusion would be the best course of action although NONE of them pushed this. Second lesson learned – I waited so long to address my DDD that I was precluded from ADR because of lack of disc height. I will add here that even though I was not a candidate for ADR I have to say that even if I was I think I would have gone for a fusion at L5/S1 anyway. For me, it seems like the technology is just not where it needs to be to ensure a good outcome at this level. I’m all for ADR at the cervical level, just not lumbar. JUST MY HUMBLE, NOVICE OPINION.

Even after hearing my prognosis and for the first time truly understanding that DDD is permanent, I still could not go forward with a fusion. This was largely in part due to the horror stories I kept reading. I became fixated on other people’s bad outcomes and it left me “paralyzed”. I continued to ignore some VERY serious warnings. It is not normal to start limping and leg weakness should be addressed. Not at anytime from May 2008 to January 2009 did I have a period where I was pain free or without mechanical limitations. Mid January I began to lose the ability to use my right leg. FINALLY this got my attention, I booked my fusion surgery. Third lesson learned – I should not have ignored very obvious warning signs and I should have had a conversation with my docs about what can happen long term if I don’t do anything. I also should have done my research but not allowed myself to be drawn into bad surgical outcomes. On the balance, those who are posting have unresolved complicated spine issues and yes, bad surgical outcomes but this does not mean that everyone will experience the same. I am two weeks post-op and my right leg still does not function properly but this is not from a bad surgical outcome. This is due to my inability to take action. My right foot turns inward and I can’t engage certain muscles in this leg. My left foot burns and my feet hurt badly by the end of the day from griping the ground in order to balance and stand upright. This is the result of waiting things out – what the h*ll was I waiting for? I guess total loss of leg function. I would kick myself but I can’t use my leg.

After determining that fusion was the way to go, it really paid off to investigate the different
techniques for fusing. For me it was important to know the difference between ALIF, PLIF, TLIF, XLIF, etc.. and decide the pros and cons of each method. For instance, I did not want ALIF because of abdominal nerve damage from a previous surgery, there was no way a surgeon was going back through my abdomen. After much research I determined that MIS TLIF was the way to go for me. The procedure took just over an hour (my surgeon said that the disc was entirely gone so I am sure that this cut down surgical time!) and I was up walking the same day and out of the hospital the next day. I did not take pain meds before surgery so I have been able to get by on 5mg valium and Tylenol 3. I mention this because this was another thing that REALLY scared me when reading other people’s stories. I was scared to death that I would end up on narcotics long term. I am a bit of a control freak and love a clear mind. Fourth lesson learned – know everything you can about the procedure you are having and don’t assume anything. This is the one good thing that I did for myself through this horrible adventure. At least I got one thing right. Although I am only two weeks post-op at this juncture I feel like I chose the right surgeon (he specializes in MIS TLIF) and the right fusion method. I know it is early days and I am sure some nay sayer will remind me that I may still have problems down the road but for now I am pleased. My surgical pain is minimal and I do have new post-surgical nerve pain but it is intermittent so I am hoping that it will be temporary.

For now, I will work hard on my PT and try to have faith that I will again be able to walk without a cane and on the rare occasion that I allow myself to really dream, I fantasize about running again. For all those spinal newbies, I wish you all the best in your journey and hope that you find successful solutions and pain free days.

[Harrison]

CLS, your post is so thoughtful, clear and helpful! Your lessons learned will help many people! I wish you a smooth recovery and a pain-free, athletic future!

[bellyrm]

Hello there,
Question for you... You mentioned you had back pain did you also had at the begining of your injury leg pain and or foot toe pain? I can't imagine to have pain for years ... I have been having pain for 10 months and I can't take it anymore ... I can't walk longer than 5 10- minutes and then pain comes so badly on my leg ankle foot (painful pressure) that I have to leave the mall in a weelchair or stop walking and walk super slow because of pain ....I can't sit because pain gets really bad so I basically eat standing up and go on the passenger's seat lying down ... I am new and very confused if what I have is ADD or a disc herniation ... I'm not sure if I should go for a Discectomy or ADR? What is your opinion after your experience? I'd thank you to share ... Trying for find as much info as I can ...
Arabella.

[CharlesinCharge]

Arabella,

There is absolutely no way for you to know if you have DDD or just a disc herniation from the nature of your pain---you need to see a spine doctor and get an MRI. Some people have back pain only (like I did) and others have leg pain only, and some have both. These pain symptoms can be a sign of DDD (Degenerative Disc Disease) or just a bulging/herniated disc, but there is no way you can know until you have X-Rays and (more importantly) an MRI.

A discectomy will ONLY help if you have a bulging disc that is pressing on a nerve, causing pain (usually down the leg, but sometimes in the back as well). If you have a degenerated disc, having a discectomy is totally useless because the pain is not coming from a compressed nerve, it is coming from the disc itself. To stop the pain you have to remove the degenerated disc(s), and that means a fusion or ADR surgery.

I hope this helps, I speak from great experience and tons of research (I know much more about the mechanics of back pain than I EVER wanted to). Ten straight months of pain is not normal, you need to get to a doctor (Orthopedic surgeon who specializes in spines or a Neurologist) and get an MRI. Based on the results of your MRI, they will figure out what you have or call for more tests (Discogram, Myelogram, etc.). Its not fun, but the ONLY way to find out the cause of your pain.

[bellyrm]

Thank you so much for your message but yes I have already had a MRI done actually 6 months ago...

My doctor then wasn't a surgeon but a non surgeon orthopedist after putting me 3 epidural shots with no success he told me I need surgery and refered me to an orthopedist surgeon who told me to live with the pain and that I do not have to have surgery, because what I have is not cancer.

Then of course, I went to see someone else a neurosurgeon this time who said that he only recommends surgery for people with tumors or that might be paralize if they don't get surgery as an emergency, so I went back to epidural doctor who made electro test or something like that to see which nerve is being damaged and the result didn't show any damage on the nerves but normal levels so he said I might not need surgery, is this by they way(for all of you who have experience and know a lot) a sign that the pain comes from the disc but not from the nerves?

Then I talked to another neurosurgeon who said I need a Microdiscectomy but didn't think fusion was neccesary and went back to the first surgeon who told me to live with the pain by the way he is suppossed to be one of the best surgeons in GA but I guess as I do not have insurance that was his best answer and when I returned to see him he told me that I have ADD and that I need a Fusion or ADR telling me that the Fusion is very expensive $30,000 and that the money will have to come out of my pocket but the ADR will be for free because there is a company paying for a new study here to see if the New Freedom Disc or the Pro Disc is better testing it in 2 group of selected patients then he said that I might qualify and that he thinks I need ADR ...

Because of all of these different opinions I'm so confused and want to see which are the symptoms of people with DDD or Disc Herniation I am really tired and sad of going to see these doctors and not knowing yet which is my problem and solution

I have spent a lot of money in appointments and much more in physical therapy which by the way I have tried 3 times without success and made my pain specially on the leg worse ... I also went to see a pain doctor who put me an unblocking shot to the nerve which made my pain much much worse and I have been taking musle relaxants and pain medicine for sleeping... Going to see a final doctor tomorrow who hopefully will tell me clearly which my problem is DDD or Disc Herniation ...

I have been just crying all these months and feeling that because I have no insurance and I am not from here they tell me whatever ... I am very dissappointed about some doctors here but I must say there is being also great people on the road too that have been generous and tried to help ... so as I am still in the limbo I am glad I joined this site ... Does having pain underneath your buttock on the tight area an indication of DDD or Disc Herniation? Thanks for writing me and reading ... Waiting for your answers and replys ...

friendly
Arabella.

[cls]

Hello Arabella,

Firstly, welcome to the site and to this community of support and education. I am sorry that you are having so much pain and feel in the dark regarding your diagnosis and what your next steps should be. Do you have a copy of your MRI report? Did any of your doctors show you your MRI and/or walk you through the findings? Do you know which level is the problem? I know that this whole process is overwhelming and there is a lot of information to absorb but it sounds like you need to be more clear about what is the problem. I wish that you could get a more definitive diagnosis then you can start researching your options. You mentioned that you are seeing another doc tomorrow. Will you be seeing a Neurosurgeon or an Spinal Orthopedic Surgeon? Have you written down a list of questions to go over with this doctor? I hope you go away from the appointment feeling much more informed and with a greater understanding of your situation. Here is my mantra --- keep asking questions, keep researching. Good luck tomorrow.

One other thought, you may want to start your own thread so that your questions get more responses. I know there are a lot of wonderful folks here who can offer great guidance.

[CharlesinCharge]

Anabella,

If you had an MRI, that should IMMEDIATELY tell if it is a disc herniation/bulge versus DDD. My doctor was able to tell immediately, as I too hoped to have a Microdisectomy but he told me it would be useless. What usually happens is that they do an MRI, and this shows if you have a disc bulge/herniation (which can often be fixed by minor surgery as you said) vs Degnerative Disc Disease, which usually requires major surgery. Once they think it is DDD, they usually do a test called a Discogram, to try to verify that your pain is indeed coming from the disc. The LAST thing you want is to have major surgery (fusion or ADR) and then find out the pain was not coming from the disc they just removed!!

In my humble opinion, if you are offered a free ADR via the trials you should take that versus fusion that you pay for yourself, but FIRST I truly think you need a Discogram to verify that your pain generator is your disc.

[bellyrm]

Charles,
Thanks again for your message ... On friday I went to see a doctor an orthopedist surgeon but instead I talked to his PA because the doctor wasn't there and .... he told me that I have a disc herniation and also DDD ... He said that a Microdiscectomy won't be useful because this might alleviate my leg pain but won't help my back pain ad he also told me that I need an anterior fusion anyone familiar with this? He also told me that the ADR is something new in the USA as we know and it is proven to wear out in time and may have other complications so he would not recommend it at all ... On the MRI it shows a small disc herniation on L5 S1 but as I have a lot o back pain being unable to sit walk and or drive longer then 5-10 minutes and I also have some pain leg but my back pain is more he thinks I have DDD too ... So right now is to have the anterior fusion or have the ADR from this free trial where the doctors are trying to find out which disc is better ( Brand New Freedom Disc or Prodisc) putting in some patients ... It is so hard to decide
Do you know anything about posterior back fusion? The anterior back fusion seems to be very expensive and I don't have insurance ... Also is it necessary for sure to have a discogram? I forgot to ask about this to the PA althought he seemed very sure about my diagnosis small disc bulge L5 S1 plus DDD
Thanks a lot for writing advicing me...

[CharlesinCharge]

Anabella,

I cannot tell you whether or not to have fusion or ADR, that you need to decide on your own with the consult of several surgeons. I do disagree with the doctor that told you it will wear out, many on this board will agree that the artificial discs are made to last a lifetime. There is a person somewhere (Harrison met him) that has a first generation Charite disc in him that has lasted about 25 or 30 years so far!

An anterior fusion means they come through the stomach, it does save cutting through the major back muscles and can avoid some of the hardware (rods, screws, plates) that they use in a posterior (through the back) fusion. But, both are basically the same in that they remove the painful disc and fuse the vertebra together that lie above and below the disc. ADR allows movement because the two vertebra are not fused together, but it is true that the technology is not as long standing as fusion (though fusion only has a 60% success rate and does often cause adjacent segment disease). I personally believe the future is ADR, but you need to decide for yourself what is best for you.

I do VERY STRONGLY believe you need to have a discogram before you have ANY back surgery. You need to verify that DDD in your disc is causing your pain, because it possibly could be something else---the SI joints, the facet joints, nerve damage of some sort, etc. A discogram is not 100% reliable and is somewhat controversial in the spine community, but most agree it is still the best method available for determining if a disc is causing your pain.

Take care,

[bellyrm]

Thanks so much for your messages Charles trying to figure out what surgery I need etc ... and I wish I could have a discogram but without insurance is insanely expensive .... Let's see..
Arabella.