New member here and I really need some advice :)

[hillarymurphy]

Hello, my name is Hillary and I really need some advice. I am really glad I found this site, because making these kind of decisions is weighing heavily on me. I would appreciate some insight. I am trying to decide between surgery, or to continue to live with pain.

Here is my history:
1997- Car Accident chiropractic & massage therapy for 9 months
Various bouts of lower back pain occurring about twice per year
with visits to Chiropractors upon each episode until pain is reduced
2005- several falls learning to snowboard on tailbone
2006- Chiropractic care for several months for periodic lower back pain
2008- Chiropractic care for several months for periodic lower back pain
2009- Sciatic pain begins with lower back pain
2010- Lower back and sciatic pain increases with any activities (working out, running, rock climbing, hiking)
Stopped all activities due to pain and laying down sitting and sleeping now causes severe pain gained 15lbs as a result
2011- Began PT including spinal decompression, stim, strengthening exercises
Physician overseeing my PT orders and MRI- diagnosis is severely degenerated L5 S1 disc and what little is left of the disc a 5 mm herniation on nerve. Advised that they could "regenerate" the spinal disc. PT helped a bit but still in pain.
2011- Consultation with Dr. Bhatia Chief of UCI Medical
Ordered further x-rays- conclusion bone on bone vertebrae with severe disc degeneration- recommended spinal fusion of L5 & S1. Indicated that epidural injections don't work well for my particular case (bone on bone has caused inflamation and will continue to do so without intervention)
2011- Consultation with Dr. John Brown of Newport Medical- same diagnosis and recommendation of fusion but suggested epidural injections first.

I am newly married and my husband and I want to have children in 2 years or so (I am 33 now) The PT (spinal decompression) has helped a bit, but I still have pain. I get around, but have stopped all activities I love (working out, hiking, etc) and worry about pregnancy and caring for children living without a L5- S1 disc.

The 2 orthopedic surgeons I have consulted with so far suggested fusion of the L5 S1. They both believe that I have mechanical pain due to severe disc degeneration and bone on bone vertebrae. I also read up on ADR for my condition, but the doctors seem to push me away from that option. I believe that is because insurance for that procedure is a nightmare, as well as the relatively short time it has been used and the lack of long term study on those who have ADR. Also, I have read that the fusion on the L5-S1 is much better than on higher levels since there isn't much movement there. I have heard that recovery is quite intense with either back surgery, and I am really not sure what to do. I do plan on seeing Dr. Shamie od UCLA medical, and probably a few others too. Any suggestions on orthopedic surgeons in California?

Thanks!

[trkdoc714]

Hillary,

Welcome to SPS. I'm glad you found us but wish you hadn't have had to.

Did either or both Orthos offer any details of the type of surgery they recommended? If memory serves, XLIF or PLIF are viable options for L5/S1. My concern on any anterior procedure (either ALIF or ADR) would be the (minimal) risk of having an effect on the reproductive organs. Although a minimal risk, motherhood sounds like an important part of your plans for the future. If I were in your position, I would put quite a bit of consideration into that risk.

The L5/S1 has +/- 8 degrees of motion while L4/5 has +/- 12 degrees. A concern for fusion at L5/S1 is adjacent segment syndrome which might cause the L4/5 disc to degenerate quicker than if movement were available at L5/S1. There is also a concern of fusion at that level having an effect on your SI joints.

We have a large number of members that I'm sure will do their best to help you find answers to any questions or concerns you may have.

Congratulations on your new marriage! I hope you have many happy (and pain free) years together.

Bob

[hillarymurphy]

Bob,

Thank you for responding and all the info. I did not even know the risks involved in ADR regarding reproductive health. PLIF is what was recommended by both surgeons. Although the first said that epidural injections would not help in my case, and the second referred me to a doc that does the injections. When I spoke to the Anesthesiologist that performs the injections, he seemed to think that the injections might work in my case to avoid surgery. My PT doctor said that they could help regenerate my disk to avoid surgery. Both surgeons told me that the regeneration claim is untrue. I feel as though each practitioner says things that support their own "specialty" and they contradict each other. I am beginning to see this very clear pattern and realize that in the end, it is up to me to decide and to decipher the information I am given collectively. I have an appointment with another ortho and have an appointment in mid October for the injections. The PT seems to be helping, but I still have pain especially the left side sciatic in my buttock and down my leg. I am avoiding activity in fear of more pain that typically follows, and it seems like a sad way to live not to mention unhealthy for my overall health. I'm just unsure that the risks involved with surgery are warranted. Can a person live without a disc in the l5- s1? Both doctors said yes... if you can live with the pain.

In any case, thank you so much for listening.

Hillary

[trkdoc714]

I have doubts that ESIs would help regenerate the disc as it sounds like there's no or very little disc left. My pain management doc performed these to help the nerve roots heal.

You're on the right track in getting more opinions. You might look into a neurologist also. They tend to look at spine problems from a different perspective and might tender a differing opinion regarding surgery or more conservative treatment options. I got as many opinions as possible until I found the common thread and was able to choose my treatment with confidence.

As far as living without the disc, it's possible but it sounds like you're experiencing what life will be without it now. When the vertebrae have no disc between them, you will eventually "autofuse". Then it would be a case of removing bone (such as a laminectomy) to allow space for the nerve roots to relieve pain.

Bob

[KBear]

Hi Hillary,
Welcome and as Bob said, hate that you have to be here. I completely 'get' where you are, as it wasn't too long ago that I was in the same boat. I was in wreck with an 18 wheeler with both of my daughters in the car (2 weeks and 2.5 years old at the time). Thankfully my kids were fine, other than anxiety about big trucks from the older one. I, on the other hand, 'walked away' but with major spine issues.

You can see in my signature below that I tried just about everything conservative before surgery. I was referred at 28 years old for chronic pain management and told I would never have more children. As someone who literally always wanted to grow up and be a stay at home mom and wanted 4 kids, this was a death sentence. Long story short, on my search for a pain management doctor I found out about ADR, was in a clinical trial and had a baby 6 months ago.

My OBGYN is extremely pro-life (which amazingly is not that common), so I knew if he said no to a pregnancy it was a no. I had had other doctors laugh and scoff at me when I had said I wanted another child. Luckily, my OBGYN said go for it and it wasn't a big deal if I had to take painkillers while pregnant, as many women do and many are prescribed them for the first time ever during pregnancy. My family doctor, surgeon, spine surgeon and pediatrician all agreed that I could have another child and that the painkillers wouldn't be an issues since they have been proven to be safe in pregnancy. The main risk was that the baby could be born dependent and need to be weaned off, which my pediatrician said would not be a problem and really doesn't happen that often. I felt great during my pregnancy, though the first 15 weeks of morning sickness did seem to make my back hurt more, but after that I was pain free! I took 1-3 hydrocodone a day in the first 15 weeks, then none through the second trimester and most of the third trimester. I had normal aches and pains at the end of pregnancy, but I don't think it was as bad as had it with my other 2 pregnancies- whether that is because I had went through real back pain and had a tolerance or if it was better is debatable. In the end, I was give hydrocodone for the last 2 weeks for other pregnancy issues not related to my spine... go figure. This is definitely something you would want to disuss with your doctors before getting pregnant, as some are anti. I found a thread on another website with women in chronic pain who went through pregnancies and I did not find one negative problem from them taking meds. My OB felt it would be worse to not take anything and lay around from pain, than to take them. I'm glad that the pain went away and I did not require them constantly, but just know that if it comes to that, it's not the end of the world. Now, this was obviously something I did not share with family/ friends, other than hubby and my best friend who knew my struggle, as most would judge you (just like they do when you are in chronic pain and taking meds.) So, while it's not common to hear of people having babies after spine surgery, it is possible and does happen. Feel free to ask me any questions you may have. Oh and I was a little over a year out from surgery when I conceived. I had ADR at L4/5 and they went in anteriorly (through my front). I think the risk of this damaging any reproductive organs is slim, but of course discuss that with your doctors. My pregnancy was treated as high risk, since it was unusual and I did have a few issues this time that I didn't have before (pre-term labor was the main one). I would just be prepared to be able to not work during that time, just in case. I opted for a scheduled c-section (my first). I did this because I have small herniations on my upper and lower discs and I didn't want to chance messing a disc up during delivery, as I've heard of women with healthy backs doing this. This is really up to each patient and doctor, as some do choose to go through normal delivery. Honestly, the c-section was way easier and recovery as my previous 2 deliveries. I was expecting the pain you experience after back surgery and it was nothing like that. I was back up and doing everything, other than the forbidden lifting, without pain medicine in 2 weeks.

On your surgical options, It's been over 2 years since I fought my insurance for ADR and was denied; but from what I have heard and read on here, insurers are now paying for ADR and refusing fusion in some cases. From what you describe your degeneration as, I would not do ADR. By the time you get to bone on bone, your facets are probably way gone and that is a major contradiction to ADR. Also, as you mentioned, fusion at L5/S1 is not as bad as other levels, because there isn't a ton of movement there. Hopefully I never need more spine surgery, but if I did and my L5/S1 was shot (it is herniated but not a pain generator at this point), I would want a fusion at that level.

It sounds like you are on the right track getting multiple opinions. Your statement:

PLIF is what was recommended by both surgeons. Although the first said that epidural injections would not help in my case, and the second referred me to a doc that does the injections. When I spoke to the Anesthesiologist that performs the injections, he seemed to think that the injections might work in my case to avoid surgery. My PT doctor said that they could help regenerate my disk to avoid surgery. Both surgeons told me that the regeneration claim is untrue. I feel as though each practitioner says things that support their own "specialty" and they contradict each other. I am beginning to see this very clear pattern and realize that in the end, it is up to me to decide and to decipher the information I am given collectively.

I couldn't agree with you more on this.

Best of Luck and feel free to ask any questions you may have,
Kathy

[Phil_b]

Hi Hilary

Cant comment on the pregnacy side of things but I had a lanomectomy done back in 1977/8 and you can see the results from my signautre below. The best thing I ever did was the recent three level fusion - for me it has been life changing whilst not a total cure I can at last get my life back in order. At the end of the day its only you that can make the choice but the doc's wouldnt have offered it if they didnt htink you needed it.

Congrats on the marriage and good luck for the future

Regards

Phil

[hillarymurphy]

Thanks everyone. Wow, what a great group of people on this site. I really appreciate you all who take the time to help, support, and inform those of us who are just beginning to understand the complexities of back pain. I have already learned so much from reading these posts. I hope that my answer will come into focus, as everything seems a bit blurry right now. I feel confused, a little sad, and unsure of the right decision. It helps to know that others have gone through the same thing, and to have the benefit of their experience.

@ Bob- thanks I will definitely set up a consult with a Neurologist. had not even considered that? I feel that the PT is helping somewhat, but certainly isn't giving me the kind of relief I desperately crave to have the life I once had back. They indicated to me that it may just take more PT time to get relief especially regarding the sciatic pain. I will begin discussing the "autofuse" issue with anyone I see from here on out. Some questions come to mind. If the L5 and S1 autofuse, would I need a surgery anyway after the fact? Is surgical fusion better than autofusion? What are the risks of letting it fuse on its own, nerve damage?

@ Phil- Thanks for your input, one thing you said has me thinking. Why would these doctors offer the surgery if they thought I didn't need it? Something to ponder, although I am wondering if I see 10 doctors would they all indicate fusion? I can't imagine that doctors make any money suggesting ADR since the insurance companies deny the claims. So is fusion really the best for me, or the simplest answer for the MD?

@Kathy- thank you so much for your very sincere and heartfelt account of your experience. I really want to be a Mother, and I am determined to give myself the best chance to make that happen. I wonder if I could manage with PT and mild medications relieving enough pain where I could justify not having the fusion surgery? If so and I don't get fusion, once I was carrying the baby would the pain become terrible? It is good to hear that some medication is ok during pregnancy.

Thanks,

Hillary

[Pbchoclovr]

Hi Hilary,

Welcome to the site. Your history sounds very similar to mine in regards to the things you're experiencing with your spine. I'd had problems off and on since I was a teenager. My doctors would prescribe pain killers, anti-inflammatories, and muscle relaxers and I'd be good for a few years. A year ago, my symptoms became permanent. My xrays and MRI revealed a collapsed disc at the L4/L5 level. I have some minor issues at L5/S1 but not enough to need treatment at this point. I had wanted an ADR, but I'm not a candidate due to arthritis in that area, which showed up on the xrays. The ESI's and RSNB's didn't do squat. So I was referred off for surgery. I actually had a consult with both an orthopedic surgeon and a neurosurgeon. I chose the neurosurgeon. Like someone else said, they see things differently. I felt that since my pain was coming from the nerves, I wanted someone who would treat that, as opposed to just treating the bone issues. Was their approach different? Not really. They both recommended fusion for the L4/5 space. I'm about 12 weeks post op this week. I immediately saw a difference in the type of pain. The sciatic pain was gone. I had been told by my surgeon that I was bone on bone when he opened me up. Only you can decide whether you can handle the pre-surgery pain and how much your life has changed. Both surgeons told me that in making my decision to have surgery, the question I had to answer was " Has the quality of your life changed so much that this is the only option you can see to get that life back?" For me, the answer was yes. I don't regret having the surgery. Right now, my life doesn't look too different from before surgery, but the pain is different and I'm still healing. Also, my pre-surgery pain was off the charts, above a 10. Post surgery my pain levels have actually been significantly less and more tolerable. As you decide, realize this is a major surgery and it will require lots of work, time, and patience on your part to go through the healing process, if you decide to go ahead. Healing from this surgery is a VERY slow process. In the end, though, it can be hugely rewarding. You're actually fortunate. My surgeon told me the best level to have fusion on is the L5/S1 level, since it has the most limited movement. You really don't see much difference in range of motion at that level after surgery.

I really hope you're able to find and sort through all the information to make a decision that is best for you.

Linda

[hillarymurphy]

Here are my images of the L5 S1 degeneration, if anyone has any suggestions or comments.

Thanks

[trkdoc714]

Hillary,

Autofusion is a possibility but not a certainty. There are a lot of "ifs" involved in how our spinal issues progress and evolve. In my opinion, if someone experiences pain after fusion it would point to a procedure to enlarge the foramin and/ or lamina to allow room for the nerve root(s).

From a layman perspective, your films appear great except for the L5/S1 disc.

My advice would be to try anything reasonable to avoid surgery but if surgery is indicated, choose the least invasive with the highest track record of success.

The great thing is that you have quite a few SPS members that have been down your road and can offer some great advice.

Good luck,

Bob