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Advice on L5/S1 fusion at young age

Hello everyone, I
wanna share my story with you in order to hear some of your thoughts and own
experiences and any advices you may have.

 I’m a 6’5, 200 lbs,
23 year old male. I played volleyball competitively from age 12 to 20. At age 16
I had severe low back pain and was diagnosed with a L5/S1 herniated disc. Treatment
was standard: physical therapy and pilates. The result was very good, I was pain
free in 3 months and managed to play volleyball all the way through my third
year of college, at which point I decided I wanted to focus more on school and
my future rather than keep going with the sport…Going from a 6 day a week
practice routine to sitting a lot and not doing much exercising made me remember I had
a herniated disc, that was a particularly hard semester as I had just come back
home from the USA to finish school at home (I’m from Brazil). So at this point
I started to have sciatica pain down my left leg. A new MRI in March 2017 revealed
my herniation was now bigger and I was starting to have degenerative disc disease
in the same disc. Conventional treatment was prescribed once again, only this
time the improvements were little, I was able to live a somewhat normal life but
still with everyday pain, I decided I was not going to do the same mistake
again and began exercising regularly. Fast forward a year and a half later, the
sciatica pain is getting worse, still able to function somewhat normally though.
On a stupid attempt to get rid of this pain I made the worst decision of my life,
4 visits to a chiropractor was it took to make my pain go from annoying to debilitating.
I could no longer do any form of exercise other than pilates and no more than
30 minutes of walking without having pain. 
I returned to the doctor and had a new MRI, it all looked pretty much
the same, except the herniation was again a little bigger, back again to conservative
treatment (which was something I really never stopped doing since the sciatica
started). It’s been 6 months now and with no improvements at all I returned to
doctor this week and yet another MRI confirmed that the degeneration of my disc
is severe and I was recommended a fusion of L5/S1. The doctor said he would not do a microdiscectomy on me because the severe DDD requires a fusion.

I am absolutely terrified. At the same time
that I trust the doctor’s recommendation, since he performed a L4/L5/S1 fusion
in my 65 year old mother and she has never been better, everybody else that has
helped me before (Pilates instructor, physical therapist) tell me to hold on
and try more conservative treatment, even though they are the ones helping me
in my conservative treatment for almost 2 years without great signs of
improvement. My doctor denies that a L5 S1 fusion will put more pressure on my
other discs making them start to degenerate and herniate, saying that this a myth
and if it is true how come do I have DDD without never having a fusion? He
claims that doing this now will actually prevent my other discs from becoming “sick”,
which goes in direct controversy to everything I read here on Spinal Health but
it is what happened to my mother, she waited to long to have surgery on her L5/S1 that she developed the same problem on L4/L5.

 I don’t know how to
make a decision, I’m so young and have my entire life ahead of me. Do I wanna spend
my youth in pain and maybe have this surgery further down the line when I just
can’t take it anymore? Or do I wanna get it over with now and endure a 6 months
to a year recovery and possibly be pain free for a long time but have the
possibility of developing even more problems? What sucks the most is that
nobody seems to guarantee I’ll be good other than the doctor.

Hope you guys can help
me decide. Sorry for the long post, good luck to us all.

 

 

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Comments

  • I’d be taking my MRI to 2-3 different neurosurgeons and maybe 1-2 orthopedic spine surgeons and see if there’s any agreement on how to proceed. Good luck. Please keep us posted.

  • Update: had an appointment with a neurosurgeon yesterday. We talked for an entire hour and he passed me a lot of confidence, he said I could benefit from a video assited discectomy, which is basically an entire disc removal without fusion. I failed to understand how one can remove the entire disc and not perform the fusion. Still some research to do for me...if anybody has any info on this it would be greatly appreciated. Thank you

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  • Update 2: Saw another orthopedic surgeon last Friday. This one wants to perform a classic microdiscectomy (not by video) removing only the part of the disc that's herniated. My concerns right now are many: microdiscectomy is usually a band-aid type of thing it seems, fix the issue now but be bothered by it again from a new herniation in the near future; fusion surgery is more guaranteed for the problem right now as it stands, but the massive recovery and the possibility of never being the same person again scares me so much.

  • Hello! Speaking as another young person who spent most of my 20s dealing with insane pain, I would say that sometimes you have to weigh the pros and the cons. A fusion surgery is an invasive surgery, but I honestly wish I didn't wait 6 years to have mine. I had the same fears as you, with the long laundry list of what-ifs, but I have my fusion in September and have honestly had a very smooth recovery. Since you are young and an athlete I think you have that on your side, physical therapy has had a huge impact on my positive progress. But, most importantly find a surgeon you trust who you feel comfortable with - I went through 13 before settling on mine.

  • EMS GuyEEMS Guy Posts: 441
    edited 06/19/2019 - 1:24 PM

    I'm not a doctor, but I would think common sense would suggest the other levels are going to compensate for those not working.  I agree with L4-5, get several opinions.  My 21 yr old son has been told he needs a fusion, but at 22 yrs old, I told him to try everything else first and cut last.  It's a tough decision to make.  At the end of the day, it all comes down to what you can tolerate.

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  • Update 3: First of all, thank you for all of your inputs. I saw a fourth and for me final doctor, another neurosurgeon. All of this search for what to do has been causing me some serious mental issues and I decided to draw the line at four. Going in for an epidural tomorrow. Hoping that the epidural + the conservative treatment I already do can reduce my pain to some degree that I can avoid surgery for a couple of years. I know that that is a long shot and maybe too high expectations but I'm trying to stay positive.

    So to summarize my quest so far:

    Orthopedic surgeon 1: fusion

    Orthopedic surgeon 2: microdiscectomy

    Neurosurgeon 1: discectomy

    Neurosurgeon 2; epidural then microdiscectomy if necessary.

    I'm afraid of the fusion because of the grandiosity of it. But I'm skeptical about the microdiscectomy because of the reherniation possibility.

  • If I were in your shoes I’d like that 3/4 surgeons say microdisectomy vs fusion.

  • I went through this also, but from a car accident. I did the discectomy and laminectomy.... 6-8 months later I was on the table again having a fusion. It’s so difficult to make the decision because you spend years doing conservative treatment and you are just getting worse and frustrated and you want it fixed and then you have the surgery and do well and then bam, it’s all back. I’m 23 and it’s truly been an awful experience I wouldn’t wish on anyone, I did end up having a fusion and I am a year out from that now. 

  • @reagannicolexo thanks for sharing a little bit of your story. How are you doing from your fusion? It's hard to find positive stories around here. Hope you're doing well!

  • Also, to update this thread for anybody following it: I did have a nerve root block injection on January 10th. It worked quite well for my left leg sciatica. I'm not pain free, I'd say I had 7/10 pain most of the time and now it's usually a 3 or a 4. It allowed me to go a little harder in my recovery exercises but it's been tricky, a simple 2 hour car ride or a day where I walk too much or sit a little bit more than normally (albeit still less than the average person) gets the pain back to that 7. One particular day, putting socks on, I must have done a weird movement and got my pain to a level I never felt before, thought I had screwed everything. Had to lie down for the rest of that day and with a couple of painkillers it was gone the next morning like it had never happened (weird).

    I feel like I've stagnated in my improvements. As much as I'm glad to not be in so much pain everyday I feel like the restrictions are all still here. One thing that became very evident with the decrease of pain is the numbness in my toes and the lack of strength I have in my left leg.

    Thinking about joining a gym and getting back to some light weightlifting being super careful with form. I've been living under the motto of only doing what doesn't cause any pain or discomfort but that has me not going forward anymore.

  • Wow such seasoned young kids.  Tough decisions at any age. Yes Reagan tell us how you are getting along.  I’ve been told I waited too long to address compressed nerve issues, or maybe I’d be one of the lucky ones who has surgery and doesn’t look back, including on this forum.  Unfortunately for most who continue on here spine pain continues to get us down.  For some, it’s just a longer journey to feeling no pain.  Or lessened pain to where we can survive most of the time.  Just staying healthy active makes a difference at any age. 

  • I had a discectomy last year.  I was 32 at the time. I had a great recovery and was so thankful I went through with it. I did herniate again, but that was because I was in an accident when I was 6 weeks post-op.  I had a second discectomy in July and now a fusion in 3 weeks because of the accident.

    I like that you have three doctors in agreement. I do not view the discectomy as a band-aid. I am confident I would have been doing well if I wasnt injured so soon after surgery.

  • smartens162smartens162 Manitoba, CanadaPosts: 359

    I've had discectomy at L5-S1, with wonderful results for the first 6 months, then slowly things got worse again.  3+ years ago it was determined I'd reherniated that disc.  I am now 2 weeks post-op from a spinal fusion.  Mine was a minimally invasive TLIF, (MIS-TLIF) and if a fusion is the route you want to go, minimally invasive seems to make the most sense.  I battled long and hard over how to proceed, too.  But beyond this forum, I've talked to many people for whom fusion surgery was a success.  I was told by my surgeon that L5-S1 fusion does not carry the same risks of affecting adjacent discs as most of the other levels.  As for exercise, have you tried aquacise at the pool?  For me, it was a lifesaver while I was waiting for my first surgery.  I was in excruciating pain 24/7, but the 45 minutes in the pool were nearly pain-free, as there's no impact to your joints.  And you can get quite the workout in the water.  I will pray for you @Bon_vieira, I know how heavy these decisions are to make!  I prayed for wisdom to make a good decision, and then for peace in the decision I made.  God granted me such peace once I'd made the decision, and I've not looked back!  

  • did you go through with surgery? im 22 and am considering a fusion in the same spot myself 

  • I hope my story can help...I am 33 years old and had very successful ALIF/PLIF spinal fusion surgery in January 2019.  I just got confirmation 3 weeks ago that I am fully fused.  I had an amazing neurosurgeon. I am happy to answer any questions. Very happy with my outcome.

  • Update for anyone following this. 

    I have not done any surgery yet. I did start these pool exercises at the beginning of April with this 70 year old man in my hometown of Novo Hamburgo, Brazil, that calls his class "Hydro Neuro Biomechanics", The man claimed to have saved a lot of people from having surgery (shoulder, knee, back, etc). To my understanding, the idea behind it is that while in the water you can do most of the things you can't outside with a giant herniated lumbar disc like I have (bend, twist) and that by doing so you'd be reactivating muscles that have been deprived of movement for so long and that should help decompress your spine, taking pressure off of that nerve. He constantly used the phrase "we are going to lift your spine" as a decompression analogy. Well, I did those hour long classes 3 times a week for a month and half and then I moved to the USA as I'd not let this injury stop me from following through with my life plans. I joined the local YMCA and kept going to the pool 3 times a week. So essentially for 4 months now, I've been alternating 3 days at the pool, and 3 days at the gym doing pilates like exercises on the floor, some days when I feel like things are good I'll even adventure myself in some light weightlifting but not too often. I also walk everyday for at least 30 minutes.

    You might be thinking, so is this working? Well kinda, it's more frustrating than anything else honestly, it's a lot of work for a mediocre quality of life at 23 years of age. I can't focus on any normal people things (work, study, wife, friends) all I do is worry about how this or that affects my back, how I can't afford one single day of just waking up and not doing anything that relates to my back. I don't remember the last time I sat down and felt relaxed, I just gave up going to my future brother-in-law's bachelor party weekend because it was 5 hours away and I just can't be in a car for that long. Life is full of compromises and I don't feel young as I should. It has taken an incredible toll in the way I relate to people and the world around me

    Sure, I'm avoiding surgery, but at what cost? It's been a year since things got really bad (almost 8 total since disc herniated) and I still can't live like a normal healthy person. My sciatica is still here everyday, my back pain and stiffness too, it's just not worth it. One day of doing something a little bit different (cleaning, walking barefoot, more than an hour sitting, etc) gets me in enough pain to wanna take Advil. My pride hasn't let me have surgery because I beat back pain once when I was 16 when I first herniated and I believed with such confidence I could do it again but it doesn't seem like it's going anywhere this time.

    I recently found out that the newer M6 disc replacements have been approved in Brazil and there's a couple of surgeons implanting them. Thankfully, my parents still have me on their health insurance there and I'm contacting this one surgeon to see if my insurance covers it. If it does, I'm strongly considering going back for a couple of months and getting it done. If it does not, maybe even going to the original guy that offered fusion and doing it, I'm just sick of living for this pain and not for everything else in life.

    I'm starting to realize that surgery is a risk worth taking.


    SIDE NOTE: This entire year in everyday pain made me realize there's a strong mental component to us chronic pain sufferers. I bought and read this book called Healing Back Pain by John Sarno. It's an old book in which the author claimed to have successfully treated hundreds of patients with back pain and MRI document spine issues with the premise that most back pain is the result of repressed anger and anxiety. Sounds like completely quackery, I know, but it isn't to a great extent. I honestly don't completely agree with what the book says, mainly because my pain is really simple anatomically: my L5 S1 disc has squeezed out a lot, presses on the S1 nerve root on the left side, I have severe left leg sciatica and back pain mainly on the left side, sometimes my leg, foot and toes get numb, simple. Nevertheless, one recommendation of this book makes a big difference when the pain is particularly bad: if you control the apprehension about the pain, it will make it not as bad. In other words, if you get pissed and angry at the problem you have and the pain that it causes it you, it will last longer and it will be worse. In those moments, don't despair, make and effort to be calm, talk to yourself in your head, it's hard, but it helps me, hope it helps you.

  • Hello,

      I feel for you.  I am in a similar situation but 37.  Things started getting out of control 2 years ago.  L5/s1. After about a year of aqua therapy/PT  They did endoscopic discectomy and that failed.  They did that again and that failed.  They did a microsdiscectomy and foraminotomy 5 weeks ago and that failed.  Then I had another endoscopic discectomy and foraminotomy 2 days ago and I am recovering now, although still feel pain down my leg already.   They said this is my last shot to not be fused.  My understanding is you want to try the least invasive procedures you can before you get to a fusion.  Unfortunately like in my situation it isn’t cutting it.   I wish you the best of luck with your decision.  Back problems are the Worst.


    Jen 

  • I had four level fusion surgery in 2016. I was 50 years old at the time. The surgery got rid of all the pain in my legs and buttock. However. It gave me new pain that I have been living with ever since. I would gladly trade this new pain for what I had before the surgery. I have been diagnosed with FBSS or FAILED BACK SURGERY SYNDROME. I am fused and structurally I am healed. However there are complications that no one seems to be able to figure out. I have been in pain management for three years now. My quality of life without pain meds is terrible. Epidural injections no longer work for me, and I am getting ready to try RFA, and pray that it works. I pray that you do not end up like me. Please have a really good and long think about the surgery before you agree to have it. Good luck, and I hope you find relief soon.


    Chris

  • geovanegggeovaneg Posts: 3
    edited 12/29/2019 - 1:27 PM

    Dear Vieira,

    What a coincidence life brings us.  Reading your story, I discovered that you are Brazilian and live in the city where I lived for most of my life!

    Congratulations by quality of your report, it is quite objective and shows that even though you were young you faced this difficult situation in a very mature way.

    My name is Geovane, I live in Porto Alegre, Brazil. I'm 51 years old man, 1.78 meters tall, I weigh 156 pounds (71 kg) and I try to lead an active and healthy life.

    I have been suffering from low back pain for almost five years without relief.

    By the age of 30 I suffered from severe  lower back pain and  sciatica  in my left leg.  I believe the cause was an undiagnosed hernia that was spontaneously absorbed and eventually degenerated my L5: S1 disc.

    Five years ago I had to stop biking due to severe lower back pain. 

    My first MRI performed in December 2014 reported L5 / S1 discopathy with disc dehydration, diffuse disc protrusion with parcial bilateral foraminal extension.

    My symptoms are chronic pain in the lower back (deep), buttocks, and left groin. Sometimes accompanied by a "heaviness" in the legs. The pain is constant. What changes is the intensity. Some periods more strong, in others it decreases a little. Sometimes I wake up at night with pain when I turn over in bed. In the morning, when wakeup, I face a certain pain and rigidity that relieve with the movement. Walking does not increase pain. Staying standing or sitting for a long time causes pain. At the end of the day the pain tends to be greater. Running and cycling for long periods cause pain too.

    My perception is that pain seems to have more inflammatory than muscular origin. Anti-inflammatories help but I can't always use them.

    I have no symptoms of neurological deficits (significative loss of strength or reflexes) and the MRIs show no evident pressure on the legs nerves.

    During these five years I consulted more than twenty specialists in different fields and conducted several exams. Orthopedic doctors say I have to perform fusion surgery between L5: S1 (arthrodesis). Neurosurgeons and physiotherapists say I should not have surgery, but muscle strengthening. 

    I decided to postpone the surgery and follow the recommendation of conservative treatment. I did physical therapy, pilates for a year, acupuncture sessions, injections of cortisone and anaesthetic, osteopathy, massages and took antidepressants. But none of that solved it.

    I investigated hips, sacrum, abdominal hernias, circulatory system, rheumatic diseases (absent HLA-B27 allele, negative rheumatoid factor, non-reactive anti-CCP for rheumatoid arthritis). Nothing justified the origin of the pain.

    I performed x-ray examinations in 2015 and 2018 that found no signs of scoliosis or spondylolisthesis. The 2015 x-ray exam reported interapophyseal arthrosis in L5-S1 and the 2018 did not.

    In those five years, I've done four MRIs. The third one, made in 2016, presented an unknown novelty for me: Modic changes Type 1 and 2 in the L5-S1 vertebral plateaus.

     I thought they might represent an edema and justify the pain, but doctors said it was just a meaningless find. I forgot about it for a while.

    In the last MRI I did (September 2018) I saw that those same white Modic signals on the L5-S1 plateaus appeared again.

    I reviewed all the other MRIs and found that even if the reports did not mention the presence of Modic, the signals were there, minor in 2014, but starting to appear.

    My current status is that I am having to reduce physical activity more and more, my legs have been bothering more and seem to be weaker.  I try to stay active, even with the pain I can still run 5 km.  The disc is very flat and completely dehydrated.  A discectomy does not apply to me and there are no more conservative treatment options left.  My conservative orthopedic surgeons have asked to postpone surgery as much as possible, but due to the loss in my quality of life I think I will have to fuse soon.

    If you want to discuss in Portuguese about our situation please contact me privately that I pass my phone number.  

    Get well!

    Geovane

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