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L5-S1, Surgery options. Help! I need your opinion please.

Sally711SSally711 Posts: 156
edited 06/11/2012 - 7:56 AM in Back Surgery and Neck Surgery
Hi- I am a 38 yr old female with a herniated disk. I am not overweight, and was very active and athletic prior to my injury.

Going to see a neurosurgeon in a week, Sept 8th. I am scared, feel like a little girl again, on a deserted island!

All the information-- this will be one of the most difficult choices in the world for me, all I do know is that I can't live like 'this' anymore.

GP says "all you need is this surgery", and made the appt. with the neurosurgeon. Refuses to discuss any other option with me. except more medications.

As I stated above, neurosurgeon appt Sept 8th, and a naturopath on Oct 11th. Both to gather as much information as I can manage!

What is your experience with your L5-S1?? Any help is greatly appreciated.

I am sad there is a need for this forum. I am grateful that this one exists!

Sally
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Comments

  • Hi,

    I recently had L5/S1 fused due to slipping vertebrae. When they got in to do the fusion it was discovered that the disc had deteriorated so that was replaced with a spacer. This is my 3rd fusion. I am fused L1-S1. Before my fusions I had done physical therapy, cortisone injections, etc with no luck. All my fusions have been successful in that they fixed the problem that caused the pain and weakness, etc. Not to say I am not without some pain. Its a long recovery but I feel well worth it.

    Good luck. Let us know how it goes.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • 3 weeks ago tomorrow I had a micro discectomy at my L5-S1. I had a severe herniated disc, that progressed fast. I lost my ability to walk in a few short days and surgery was my only option.
    I am only 27, and usually very active in biking, swimming, aerobics classes. This injury has basically brought my life to a halt, for now. The recovery seems very slow and gets frustrating, but I could not believe how much better I felt as soon as I woke up after surgery. My surgeon is very confident that I will have a full recovery, as long as I let my body heal and I continue to rest and not push the limits.
    I was VERY anxious, nervous, and terrified of having surgery, but luckily, all went well and I would highly recommend having surgery if that is what is recommended.
    I wish I would have had a few more options or time to prepare and think things through, but at the same time I was very thankful that everything happened so fast that I didn't get to think about it.

  • My first back surgery was a laminectomy, followed by 3 fusions. They recoveries are long but the surgery worthwhile. Just take it easy and follow your doctor's instructions. I started out walking and then returned to swimming when the incision healed. Eventually i was able to ride my bike. I was very active before surgery so that helped in my recovery. I have continued to be as active as possible. It takes time and a lot of determination but it can be done.

    Good luck!! Let us know how you do.



    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • My L5-S1 disc herniation was addressed with endoscopic surgery.

    The doctors made 2 perforations in my side and used flexible plastic endoscopic instruments.

    No bone was cut, no muscles were cut, very very minimal collateral damage. When they finished, they closed the perforations with 2 band-aids.

    It was the procedure with the most benefit and least detriment that I could find, so I went for it. I am glad I did.

    I know I will be a low back issue person everyday for the rest of my life (I am 39) and accept I might need more and bigger surgeries in the future. For now however, I am pain-free, happy, and doing ok!

    I would encourage you to aggressively advocate for yourself.



    -----------------------------
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • I am 1 month l5/S1 micrdiscectomy and mine was in my surgeons top ten surg not that bad but it will take time to heal I'm still sore and L foot is numb your nerves heal last if it's a bad herniation all the shots and therapy in the world won't help I was scared too of the unknown but think I made the right choice please feel free to post me or private message me with any of your ? And I will try to help :-C
  • Did you have a 1 level fusion? If so, I don't get it. I have had 2 , 2 level fusion 25 years apart. came home after 2 nights in the hospital. Used a walker for 2 days only and had a visiting nurse every day for 2 weeks to check my incisions and blood pressure. Your Dr sounds like a total DB and I would absolutely think about going to someone else whom isn't a liar and who will give you a disable sticker!

    Ps and I am not some kid, I am pushing 60 and have had my share of medical problems
  • Hi Sally. I had a L5 S1 fusion with disc removed 5 weeks ago. I have had very little pain since the op and was walking a mile on the treadmill 3 days after the operation. The physios said my level of fitness greatly helped my recovery - I was walking 7 miles a day and doing an hour of cardio boxing on the Xbox each day. I am now walking around 5 miles a day on the treadmill and am not having to take painkillers. The op so far has been a great success for me as the problem I had with the vertebrae moving and making my muscles spasm so I couldn't sleep in a bed for over 5 years has now been sorted. Mine was definitely a mechanical problem with no nerve pain so having the fusion was felt to be the only solution (I had tried alternative treatments: osteopath, massage, pilates, physio etc). I have to say the operation was nowhere near as bad as I imagined it would be and I am very glad I decided to give this a try!

    Meryl



  • Hello-= and a monstrous Thank you to all who posted to help me navigate this 'ocean' of information. I have more reading to do for sure.. hard to sit upright too long though!

    Another question-- did your doctors, the neurosurgeons, specifically know what surgery you all needed? I mean, I see in above posts that endoscopic surgery, microdiscetomy, and fusions. Did you all make those decisions on your own???

    I cant' tell you how much I appreciate this site, and you all for your feedback. Thanks!!!
    Sally
  • I also have the bolt screw from fusion site to pelvis and I think that hurts like mother a mother-fucquer. ( sp. Don't want to sound like a trash mouth/ gutter girl) I was always triple joined and could do ridiculous things with my legs. Now can't even cross leg over other leg. Pathetic. Feel the bolt and it hurts at various times a day. You feel the same thing and it will get better right.. Please say yes and don' t BS me. Would rather deal with the truth.

    Wrote you a great PM last nite and being the retard that I am, lost it and was too tired to rewrite it. .I am the worst typist and am a fab talker on the phone.. If you want to chit chat or just vent, give a call at 305(933)1800. Would love to whine, laugh, talk skiing, etc. Whatever works for you. Absolutely do not want to appear as a creepy stalker, not my style. Feel well, stronger every day

    Xoxoxxoxoox
    Natalie
  • Welcome to Spine Health Sally.

    Did the doctors know what surgery we needed?

    I think you have to understand that most surgeons (orthor or neuro) will specialize in specific techniques. The guys who scecialize in minimally invasive will push that, the ones who specialize in PLIFs or 360's will in turn push that.

    If your doctor think a microdiscectomy will be enough they should do that, but if you have spinal instabilty (that caused the herniation) they would likely want to fix that root cause(fusion or adr).

    This is why it is important to get more opinions and educate yourself about the procedure and treatments.


    My PLIF (posterior lumbar interbody fusion) was excellent for me. I had instabilty and after so many years the disc material was all but gone. Every time I moved the remaining disc material would slide in and out of the spinal canal. I did have a doctor suggest a microdiscectomy... He was crazy.

    I am so glad I didn't follow through with that. When I finally met my NS he said my symptoms didn't make sense with my MRI images. So he ordered a flexion/extension x-ray and there it was "retrololisthis". After 17 month of treatment (ESI's, PT's, Traction) I had a real diagnosis and a fusion scheduled.

    The fusion was brutal, but each day was better and after awhile I was so happy & healthy. I had been in so much pain for so long that it was hard to believe that I could feel so good.

    Then I messed up my neck and then to make matters worse I was T-boned 2 days after being released to go back to work after my ACDF.....

    Life is like a box of chocolates....:)

    Julie
  • After I hurt my back and was in pain, I started looking online for knowledge. From there, I got an MRI. Then I started "shopping" for the right procedure and right surgeon for me.

    8. That's how many surgeons I interviewed/had consults with.
    From Northern California, to SoCal, to Arizona.

    One wanted to do a 360* fusion on me. That's where they open you from hip to hip in the front and in the back too. Some wanted to do different versions of fusions. Others wanted to do outdated versions of a microdiscectomy and some laminectomies thrown in for good measure.
    Finally, I found a surgeon that offered a modern procedure that I liked.

    -----------------------------
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • Hello,
    I thank you all for your valuable information -- I have been reading like a crazy lady-- feel like I am cramming for a final in college! hahaha.

    My appointment is tomorrow--I "think" I know what he may recommend in my particular situation.

    I have felt very isolated and alone for too many years now-- and now feel like there are people who "get" me. The words I read here-- they could have come from ME! It is so comforting.. though awful there are so many in pain... but I found like I have found a life raft in the middle of the ocean.

    I have a new hope that, I am ashamed to admit, I had lost somewhere on my journey.

    So.. Thanks... I have a new cyber home. It feels great...
    Sally
  • Good luck with your appt tomorrow, and keep us posted! My issue is with my t-spine, but I had a thoracic discectomy on 7/6. Remember that you are dealing with the spine, which is major surgery. Regardless of what the surgeon says tomorrow, make sure you get a second, or even third, opinion. I had gotten 3 opinions...an ortho and two neuro's. The ortho didn't think I needed surgery and wasn't even sure my pain was coming from the disc, even though my pain was textbook for a herniated disc in the t-spine. The two neuro's both agreed that I needed surgery because I had two discs that were compressing my spine. I ended up going with the second neuro, because he was affiliated with a larger hospital which ranks #14 in the country for their dept of NS. He also specializes in the thoracic spine, which is a delicate area compared to the cervical or lumbar. In any case, definitely seek multiple opinions and make sure you find a surgeon that you are comfortable with.
  • Hello,
    well, went to the neurosurgeon. After driving 3 hrs each way to the appointment, I find out:
    --he does not recommend surgery- has not seen success in his past, and most likely will not relieve my back pain, infact, I could end up much worse than I am. (I do know it can get worse for me-- but at that moment in time... Worse? how the heck can that happen???....).
    -- he recommends another opinon, and gave me a referall. This second opinion is for a "Spine Specialist". I then ask him--- "what is your specialty?". His is.. brain tumours.
    Yes, my lovely GP, sent me to a specialist for brain tumours, oh, and he does 'some' spine surgeries.

    So.. I feel.. very frustrated. years of this.. stuff. I feel like I am in a Jerry Springer show or something. Three years convincing my GP there IS a problem. Three years of demanding tests.. like Xrays, CT, MRI... Physio referall.. he still refuses, YES, refuses, to send me to a pain clinic. I am not able to get in to this clinic without this GP referal. *and, I live in a small Canadian town that has a Dr. shortage.. at least 10,000 people in my town do not have a family GP. All use the emergency at the hospital.* wee bit of background.
    I have done a self mangement pain course, learned about CBT, Congnitive Behaviour Therapy- (cause this GP said this was "all in my head", "you are a female and just can't handle the pain", oh .. and my favorite-- "you are just depressed and THAT is what is causing yoru back pain....". All statements this GP made, 100% provable. NO exagerations.
    Now-- not to be a pessimist, I am sure it will be atleast 6 months before I can see this ... real... spine specialist.
    Now the tears start... I am just.... sooooo frustrated. My life is on "pause", since Dec 2007. Sigh.


    Thank you for listening to my rant. I will now go put on my "up the mood" CD, and enjoy some positive music. and herbal tea.
  • Sorry to hear that. This is why I fiercely oppose that kind of "system" and the people who want it here in the states.

    Can you travel down here to seek real care?
    -----------------------------
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • I am so sorry to hear about your appointment.A brain surgeon? ~X( and I am sure you probably waited a long time for this appointment.

    I really hope that you are able to get into a fellowship trained orthopedic or neurosurgeon soon. Did you get the name of the doctor that he is refering you to so that you can search them out on the internet to ensure that they are specialized in spines.

    I also live in Canada, and have waited so long for appointments with surgeons. My original surgeon wanted me to have a fusion (but he doesn't do them any longer) so then had to wait a long time for two other opinions from surgeons that do them. Only to be told that they didn't recomend that, only discectomy/lami. Now 9 weeks out, I am worse than before.

    Maybe you could try to get on a cancellation list to possible speed up the wait time?

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Hi Paul and Karen-
    Paul- can't travel to the States- good point though!

    Karen-- I feel for you also-- the "hurry up and wait" game--
    I have checked out the next surgeon referral, and he's a good one. Making sure whom I am seeing now-- such alot to learn, being pro-active in your care- and learning all about backs and all the options available- while dealing with the chronic pain.
    I have no idea when I will see this next guy-- anywhere from 3 weeks to 9 months.
    One second I feel like flying the white flag- others I get so darn frustrated I want to-- well, you all know it. Gotta keep positive, be grateful for what I do have in life, and find a way to live in the here and now.

    Thanks again for your shoulders and ears, and your great advice.!!
  • Hi Paul and Karen-
    Paul- can't travel to the States- good point though!

    Karen-- I feel for you also-- the "hurry up and wait" game--
    I have checked out the next surgeon referral, and he's a good one. Making sure whom I am seeing now-- such alot to learn, being pro-active in your care- and learning all about backs and all the options available- while dealing with the chronic pain.
    I have no idea when I will see this next guy-- anywhere from 3 weeks to 9 months.
    One second I feel like flying the white flag- others I get so darn frustrated I want to-- well, you all know it. Gotta keep positive, be grateful for what I do have in life, and find a way to live in the here and now.

    Thanks again for your shoulders and ears, and your great advice.!!
  • hi i have been looking throu the posts and youve had many great replies.i am new to this forum myself (or any forum for that matter) unfortunatley,ive had only 1 reply from 2 post thingys (not very helpfull or uplifting)..what you wrote about the docter saying about depression..i got told the same thing..what was said about it being in your head..again,i was told the same..going in circles..same...feeling frustrated..same...only difference being that ive been searching for answers and help for 16yrs!!..only last year finally they found an extra bone that descends downwards on the left side of my pelvis..on the screen it didnt look small either..they say i would have been born with it..so how comes after yrs of bone scans/body scans/radio isotopes/xrays etc no one has found it until now!!!.though they hardley said a word about anything except they wanted to try a steroid and anastetic type injection to see if it helps.well,i havent seen them since the ijection as theyve now spend a year rearranging/cancelling my appoinmnts constantly!.im only 31 with 4 young boys,love to keep active but held back,struggling through everyday of chronic pain and discomfort,until the entire left side of my body decides to give way and have a wierd spasmy epileptic bludi fit,EVEN when i'm swimming!!..the one exercise that almost everyone can fall back and rely on,but no,i cant even do that!..anyway,i could waffle on and on (i have adhd and could talk for britain)..i hope all gets sorted soon for you..me,i will continue my search for answers and maybe,just maybe one day i'll get somewhere!
  • If the doctor says depression is in your head find a new doctor. It isn't and there are ways to help with it. After years of seeing a counselor I finally found a good one who sent me to a psychiatrist (who can prescribe) and I got on lexapro which really helps. Mental illness runs in my family and I am this for the rest of my life. It has minimal side effects but they are worth it.

    Sorry you are having such a hard time seeing the doctor. It shouldn't be that way. If you keep pestering them maybe they will do something.

    Good luck and keep us posted.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Hi Sally -

    I had L5/S1 fusion surgery because my surgeon could see on my MRI that my disc was completely blown out and I had bone grinding on bone. He said there was only one surgery option - posterior lumbar interbody fusion. In case you don't know, that's when the surgeon goes in through your lower back, spreads your muscles off the affected area of your spine, cuts off the lamina (part of your spine) at the affected area, grinds the cut off bone into a paste, sticks it in plastic cages, removes what in my case disc debris, sticks the plastic cages between your vertebrae, and then stabilizes your spine (to enable the fusion and reduce pain from friction) with titanium screws and bolts.

    Because the surgery is a big decision, I sought a second opinion from a neurosurgeon. He agreed with my surgeon's diagnosis, but disagreed on the procedure. He said "no" to any form of surgery at first, recommending a nerve block instead (I had already had 3 epidural/steroid shots in my lumbar that did not prove to be a solution). He then said that if surgery is ultimately necessary, he would do a decompression surgery that was less invasive than fusion surgery and wouldn't involve all of the hardware.

    I took this opinion to my orthopedic surgeon and he nixed it. He said that my disc was "gone," so decompression was not a solution for an injury where bone is grinding on bone. He said that even if I felt better after removing disc tissue compressing the nerves, without interbody fusion and stabilizing hardware, I'd be back on the operating table within a few years.

    I had already entrusted my spine to my orthopedic surgeon for C5-6-7 fusion surgery and could not have asked for better treatment, so I decided to trust his opinion with my lumbar, and I do not regret following his advice regarding the fusion surgery at all.

    But I did find the dramatic difference of opinions between the orthopedic surgeon and the neurosurgeon very interesting. The neurosurgeon was, as you might expect, very focused on the nerves and the orthopedic surgeon, again, as you might expect, was thinking about the bones. Every person and every injury is different, so I don't know which might be right in your circumstance, if either. But I encourage everyone to get both perspectives before making a decision on surgery.
  • I sincerely appreciate your feedback! more to research and weigh options!
    I, honestly, had lost all hope in my life. Thought, this is it.
    Now-- after finding this site.. and ONLY THIS SITE-- I do feel.. so much better. I am very lucky with supportive family- but that record gets really old played so long. they just don't know what to do either! I feel like I have found a thousand friends. Real, honest people. On the computer!! yes, I am shocked.

    Didn't know that could happen.:) so very very glad it has.

    yesterday is history-- tomorrow is a mystery-- today is a gift. that's why we call it the present!

    Onwards and upwards. thanks again!!!

  • I felt the same way when I found this site. I was severely injured in April 2008. The first diagnosis was my L5/S1 injury and I spent 8 months doing everything possible to mitigate the pain without surgery. The only thing that had an appreciable effect were the spinal shots. They helped enough that I tried going off the heavy daily prescriptions because they were interfering with work, and tried getting through the daylight hours on Advil.

    It's a good thing that I did, because within a week, a horrible pain began in my shoulder that then spread down my arm into my elbow. My fingers started tingling, and after a couple weeks, I lost feeling in my hand. When it didn't get better, I called my doctor, and he didn't even need to see me to know what it was. When I was injured in April 2008, I had been slammed down on my head (before the guy landed on top of me, bending me backwards and crushing my lumbar). I went for an MRI, and they found two severely herniated discs in my neck, one of which was putting on so much pressure on my spinal cord that it was displaced - virtually invisible on a few slices of the MRI. It looked like my spinal cord had been snapped. The symptoms of the neck injury had been masked by all of the drugs that I had been taking for my lumbar injury. My surgeon told me that if I so much as had a bad fall, I could be paralyzed or even worse.

    So, off for nonelective surgery I went, and six months later, knowing that there was no nonsurgical solution for my lumbar, and unable to take the pain anymore, I was back on the table for L5/S1 surgery.

    No one can understand that pain unless they've been through it. My family tried to be supportive, too, but they just couldn't appreciate what it was like. No one could, nor do they understand the long road of the research and consults to determine the best course of treatment, and the time and personal work involved in recovering. When I got back to work after my second surgery, many people thought I was going to be back to normal, like the surgeries were an instant fix - they couldn't understand why it was taking a year for me to feel somewhat human again, and that I would never be able to pull the all nighters and kill myself the way that I used to to get the job done. They still don't.

    But, the people posting here do. Even reading some of the stories of hardship can be comforting, because at least you know that there are people who can relate, and knowing that helps keep the people around you who think they know how you should be feeling or what you should be doing from making you crazy.

    So keep reading. I think that when things go well for people, they understandably leave the forum and go back to their lives. I try to come back periodically to post updates because, after more than 3 years of dealing with all of this, thus far, I think I'm a success story (knock on wood). Although every injury and person is different, and the road is a long and tough one, it has been my experience that it is possible to get back to a normal life, even if not 100% back to the way you were before the injury. So, hang in there.
  • hi,
    thought I would update:
    I now have an appt with an ortho surgeon later this month and will see what his opinion is. Not much has changed with me physically. I have found an online course about living with chronic conditions- I have learned some valuable tools regarding pain, distraction techniques, and to take the whole realm of health- eating, sleeping, exercising- the basics we all know-- and applying them daily with action plans. Emotionally and mentally I feel stronger, which can only benefit me. Gotta keep positive!

    Thanks:)
  • Hello,
    I saw the next specialist, Ortho- and he agreed no surgery, but wants me to have an ESI- which I will do in early January. Now I am learning all about those short- and others experiences. I am trying to be brave, especially knowing what others have gone through on here, but I am scared. Will keep positive- and keep learning what is out there to help me.
    I feel like I am a perfect cookie but haven't found the right recipe yet! haahaa...
    Happiest of Holidays to everyone!!
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