L5-S1 Symptoms and Imaging Question

[cls]

Hello, my name is Christine and I have been reading posts on this forum for the past few months. I have learned a great deal from the users in this diverse community and appreciate the insight, research and compassion shared by all. After struggling for years with pain it is finally time to consider surgical options but I have some lingering questions that need to be answered before I can feel that surgery is in my best interest. Hopefully some of the users on this site will offer their opinion.

Here is a my history -
2000 – Periodic lower back pain, muscle spasms
2004-2006 – Sciatica lasting 3-4 weeks at a time and lower back pain off and on.
2006 - Periods of sciatica and lower back pain began limiting activities. Went to Orthopedic Surgeon. MRI showed bulging disc and degeneration at L5-S1. Started PT and avoided activities that aggravated lower back.
2007 - Moved to a new house. Further damaged something but could still run, exercise, and pretty much anything that did not require lots of forward bending.
Fall 2007 had abdominal surgery that caused EXTENSIVE nerve damage. After surgery, unable to sit up straight for 6 months and lost ability to engage lower abdominals. Difficult to walk more than 10 minutes, swollen, inflamed pelvis.
Feb-May 2008 – Lower back and left buttocks pain, occasional sciatica.
May 2008 – Determined to walk every day 45min and ignore pain. Brought on burning, stabbing pain in lower back, buttocks and nerve pain down back and side of legs. 24/7 pain for 4 months. Used ice, heat and Advil to get through the day.
August 2008 – Returned to Othro. Another MRI revealed further degeneration of disc at L5/S1. Recommended fusion but my brain disengaged after hearing anything about surgery. Started PT again. Unable to flex lower lumbar or sit for more than 30 minutes.
August-October 2008 - Faithfully performed PT exercises 2x/day. Gained more flexibility in lower lumbar. Core strength returning but still limited from nerve damage.
October 2008 – Consulted 2nd Ortho who is pro ADR and does not like fusion (also co-inventor of Maverick). Based on MRI (very little disc height), not an ideal candidate for ADR. Recommended fusion.
December 2008 - Consulted Neurosurgeon specializing in "minimally invasive" spine surgery. Reviewed August MRI and took X-ray. Recommended fusion.

Current symptoms: Grinding pain in buttocks (mostly left side), hips, numbness in left foot after sitting or standing a couple of hours. Knee weakness/pain that strikes at odd times causes me to limp. Difficulty walking, usual gait (kind of teeter-totter). Completely eliminated activity – walking seemed to make things worse. Very stiff in lower lumbar, upper back fatigued by the end of the day. I feel like my back is out of alignment although imaging does not confirm this.

To date I have only used PT, ice, heat and Advil to address the pain. I have not tried ESI because of a positive test result for Factor XI deficiency (discovered 11/07).

My question to the community is does it make any sense to have another MRI before going through a fusion? The Neurosurgeon does not think this is necessary.

I know that symptoms don't necessarily correlate to MRI findings but I am shocked at how my symptoms have changed over the months. The August 2008 MRI clearly showed L5-S1 with little disc height with adjacent segments normal. (When I looked at MRI I thought hey, the bones are so close maybe they will just fuse naturally ) Now that I am having more episodes of my left foot getting heavy and feeling numb I feel that I need to act on this. I am terrified of surgery and feel like I want to know that a fusion will restore my ability to walk correctly and alleviate all the mechanical pain that I have. Any thoughts?

Thank you - Christine

[CindyLou]

Christine, welcome to the forum. Very sorry for the circumstances that have brought you here though. I have said this before but you likely haven't seen it since you are new, I still believe if there is one level that has to be fused, let it be the L5-S1. That said, an ADR would still be my preferred choice, but my L6 (transitional level)-S1 was so messed up and fractured that a fusion was my best option. That was last July 08, and I honestly haven't noticed a major lack of flexibility issue. I don't really see the necessity of having another MRI, since you just had one 5 months ago. I would likely let the Doctor rule on that one. Best to you, Cindylou

[Toebin]

Welcome to ADR Support cls !!

Often people will have low disk height but without pain. In your case it is obvious that you are symptomatic and it's getting worse, despite years of conservative management.

The important question to ask your medical team is what nerve's are impinged and what is causing the impingement. Is it strictly the L5/S1 disk height or is there a degree of stenosis that is causing a problem as well? If so what approach to they plan on using for surgery and how do they plan on fixing the defects. They can do fusion from both the anterior (front) or posterior (back) approach. They both have their pro's and con's and your surgeon should be able to explain why they have chosen one over the other.

Proper diagnosis of the pain generator is vitally important when considering back surgery. Is it disk related, bone spur's (osteophytes) impinging on the spinal column or stenosis (narrowing) of the nerve root foramen where they leave the spine... all of the above ?

Your most recent MRI's should answer those questions and be recent enough to do surgery based on the findings.

Any back surgery is major and should not be gone into lightly. And the Factor XI deficiency is always a concern. However, knowing about it and planning with that in mind should not make it a show stopper.

You'll also want to know if your bone density is healthy and will allow for good fusion after the surgery. Again forewarned is forearmed and there are methods at the surgeon's disposal to ensure you have optimal bone growth after the procedure.

I herniated L5-S1 years ago and had significant pain and my right leg was limp for a long time, but it responded very well to conservative treatment in about 4 months and follow up MRI's show that it has indeed self fused... I notice no decreased mobility from that however .. the important factor in my case is, I do not have pain or weakness from that segment of my spine so no further intervention is needed. I did have a flair up of low back pain recently but it was determined L3 & L4 disk bulges were the cause. ESI's seem to have help immensely with it ....

I wish you good luck with your decision process cls, it's not an easy thing to go through. But feel free to ask as many questions as you can of us and we'll try to help in any way

[cls]

CindyLou and Toebin thank you for your input.

CindyLou, I have read many of your posts and believe you are incredibly courageous. I agree with your thougths on fusing this level (although I still hate the idea of any Fusion or hardware in my body ) After reading so many stories I have determined that fusing L5/S1 would probably have a better outcome than ADR even if I was an ADR candidate. Based upon my limited research, it sounds like they have not come up with an ADR product that is best suited for the lower lumbar. I wish you a pain free journey to sunshine and hope that you are able to enjoy your holiday.

Toebin, you are so right about many points you raised. At the time of my last MRI I did not have any nerve impingement noted on the report. When the MRI was taken my symptoms were different from what they are today which is why I was wondering if new imaging would be relevant. 5 months ago I had more of the grinding pain in my lowerback/butt and incredible stiffness in my lower lumbar. I was in horrible pain but found that if I laid down to rest during the day I had difficulty standing up so I stayed standing or sitting throughout the day until it was time to go to bed. Once I was down I had to stay down for more than a few hours or getting back up was torture. Also sneezing or coughing sent shocks through my spine. I continue to have lower back pain but now I am experiencing more periods of leg weakness and heaviness in my left foot as well as bum pain. The progression of symptoms has me concerned. When I looked at the MRI I could see how jagged the bones were (osteophytes?) and to your point wonder if this is causing the nerve issues/weakness.

I am glad you brought up the question of bone density but I am concerned that folks have had bone density scans only to find out during surgery (yikes!) that they have osteporosis. I am 41 so I am hoping this is not yet an issue. Thanks for bringing this up though, I will ask the NS on Monday what he thinks.

Believe me I have spent the majority of this past year thinking that many, many, many people live with DDD without surgery so I should too. I thought daily how there were many people functioning in the world who clearly limp and appear to get along fine (althougth who knows how they feel). One of the employees at my grocery store appears to have CP and he cannot use his left arm and has a significant limp causing an uneven gait so if this unfortunate soul is out making a living then I should be too. My neighbor has 4 levels of DDD and he is out every day walking his dog, cycling, going to yoga, surfing, etc. Yet here I am at home finding my self "conserving energy" just so that I can get my son to school and his activities and functions. I would love to go back to work but know that I just could not sit all day. I would love to be hiking, snowshoeing, riding my bike and have JUST ONE DAY WIHTOUT HAVING MY BACK INTERFERE WITH LIVING. Friday night my son was in the school talent show and I since he was also testing for his next belt in Tae Kwon Do on Saturday I had to ask him which he prefered me going to as I could not go to both. I knew sitting for 3 hours Friday night and another two and a half on Saturday would keep me down for a couple of days so I could only participate in one activity. Enough venting, I know that I am not as bad off as many of those reading these posts. I do wish that I could resume a normal life though.

I don't like the idea of fusion and I am scared to death that I could actually be worse off after the procedure but I am also worried about losing feeling in my foot. I can't help but feel this is a lose-lose situation.

Monday I meet with a NS and will listen with open ears -all previous visits with Orthos and NS I really did not want to discuss fusion. I would only consider a posterior fusion due to all the nerve damage from my abdominal surgery last year. I have tried to find a surgeon who is up on the latest "minimally invasive" techniques but honestly how can any of us know for sure what is the latest and greatest and who is the best at performing these procudures. It is all so overwhelming but I do appreciate the feedback.

Hi Christine

Welcome
I also have severe DDD at L5-S1 and looking into fusing at that level.
Also have other spine issues,Wating for Dr ,in Germany for answers?

Keep us Posted

Gil

[Harrison]

Christine, a belated welcome to you. Sorry about your reasons to find us, but I hope we help you along your way to your next steps.

There's a lot to learn here from each other. I still learn by reading posts, talking to patients and sometimes doctors. I feel like the more I learn, the less I know (for sure!). At the end of the day, I am just a patient and a person with a compassionate heart who wants to help people like you.

When I was in a similar situation as you back in 2003, I really did worry about nerve damage that could be due to "autofusion." What I did learn from a few patients, and docs, is that autofusion is a risky scenario. There seems to be many variables to consider to determine if a patient will be "OK" after an autofusion occurrs; e.g., no way of really knowing if nerve damage may result. There are some published research papers on this, some of which I believe I posted here in 2004 or 2005.

In 2004, my back pain started to migrate from my back, into my groin and down my leg...it made me very concerned AND motivated. Little did I know that I was already starting to fuse! If I had waited just a few months more than June 2004 to have ADR, it would have been too late...the doctor would have sewn me back up! I don't know what kind of life I would have had after that; but I am sure it would not have been very good.

I may chime back in later, but feel free to email or PM me in the meantime.

[cls]

Thank you for the welcome Harrison.

Now you really have me thinking. I was joking about hoping that I would just fuse on my own, I really did not think this was a likely scenario. What if I am starting to fuse? If the surgeon discovered this would he still perform the fusion? Its funny, I keep delaying surgical options but this really may not be in my best interest?! I see many people considering ADR and are told wait, wait, wait. Well, if this is really the avenue they want to pursue then waiting isn't necessarily in their favor. As in my case, I waited so long that there is not any disc to work with. At my last appointment I asked the surgeon about fibrin sealant, stem cells (magic and he very patiently said, "you don't have disc to work with". Sometime time is not on our side.

[CindyLou]

cls, I believe that, yes, your surgeon could still fuse you if you started to fuse on your own. The body remarkable wants to heal itself, and so, yes, that is what happened to me. My body grew bone and tried to fuse itself at my L6-S1, but unfortunately, in the process it grew very long bone that began to impinge a nerve root. My doc had to clean it up with a laminectomy and ALIF but all came out ok. (I'll especially know more after my 6 month Cat Scan and X-rays on 2/2/09.)