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Unsolicited Advice from Family/Friends - Help!

Sugaree1209SSugaree1209 Posts: 50
edited 06/11/2012 - 8:31 AM in Back Surgery and Neck Surgery
I've been dealing with a blown L-5 S1 disc (11 mm, according to the MRI) for about 5 months now. I've tried one ESI and one selective nerve root injection and have just started PT per the suggestion of the surgeon.

The last injection DID bring SOME relief, it's still not enough to be fully functional again. I am ready to throw in the towel and have a microdiscectomy. The PT who I've been seeing (and not affiliated with the surgeon) said to me that this herniation is probably just too large for anything other than surgery to help. He also said that I would probably do really well with surgery as the MRI shows absolutely NO other issues. It's almost all sciatica and maybe 5% back pain.

I like and trust this surgeon as well. (I fired the 1st one) He is with the well respected Rothman Institute in Phila.

My problem is the reaction of friends and family members, who practically recoil when I mention having surgery. They then launch into some horror story about someone they know or someone they've heard about. I think the uninitiated think every back surgery is a fusion. I then explain that they will just remove the part of the disc that is causing the problem, and there are no screws, pins or other hardware involved.

They suggest things like chiropractors and massage therapists. When I asked my GP about chiropractors it was not only a "no", it was a "hell no!".

I know it's just that they care, but the stories and the advice make me second guess myself.

Has anyone here faced this, and how did you deal with friends and family?




  • First of all, DO NOT second guess yourself. Your surgeon and your gut is tell you this is necessary so please don't let other influence that.

    I don't really have any suggestions for dealing with these people, but maybe they'll stop getting tired of talking to you about it and finally shut up. LOL

    Anyway, I'm glad you're moving toward a solution to your issue. Take care.
  • I'm sorry to hear that you aren't getting support. You can't change their opinions unfortunately. I had several people, including my primary care physician, ask me if I was sure if I wanted to go to such extremes. My best friend begged me to call her chiropractor. My surgeon said that a chiropractor could make matters worse. One of the PT's that I was seeing before surgery even went so far to tell me about a friend that died in surgery! UUgghhh!!

    I decided that I could not control what others thought or said. I could, however, control the decisions I made. So I trusted in my surgeon and went through with surgery, hardware and all! I am sooooo glad I did.

    You have to make your decision for yourself, with the help and advice of trained professionals that you trust. No one knows the pain that you are struggling with. If they did, they wouldn't be so critical!

    Hang in there!

  • I've had a few of the "rare" side effects from ACDF surgery at C5-7 a few months back...hoarsness, etc. Lots of secondary problems that linger to this day.


    I would have done the surgery again, and would recommend doing the surgery to anyone.

    Because not only was there pain and weakness, there was fear of progressing damage. This is not a hang nail. These are serious exceedingly painful issues that progress into even more serious conditions in many cases. And I think the majority of times, surgery resolves them or at least alleviates the problems. Heck my surgeon even said that at my stage, he didn't much care about the existing symptoms, he was worried about the progression.

    No other person knows the pain you are in, or what is right for you to do. I believe there are few surgeons who offer surgery as the first resort, just so they can cut into you for fun.

    So basically you won't change their minds - you just have to be comfortable with the decisions you've made. Hopefully there are people around you who will support you regardless :)
  • I agree with everyone too that this is your decision. Find out exactly which surgical procedure your surgeon wants to do- the least invasive, the better. I am guessing that it will probably be a microdiscectomy. You can look up the details here at SH.

    I had one back in 2007 but I suffered complications such as a re herniation at L4-5. Nobody can foresee this happening, it's just the chance you take and you also know that there is risk involved with any surgery.

    I would strongly recommend staying away from chiropractors because they are not qualified to treat complex back conditions and they can cause more harm in the process. You don't want to risk permanent nerve damage, take it from me. I'm glad you have a great surgeon whom you trust.

    I'm sure your family and friends mean well but they don't understand fully about back problems. This is complicated to deal with and that's why you need the expertise of a back specialist. Are you seeing a orthopedic surgeon or neurosurgeon? Are you taking any medications?

    My back to leg pain ratio is 60/40. Do you have pain when sitting since your back pain is 5%? I can't sit, stand, walk without pain and I spend my time laying down and I've been this way for over 3 years despite a micro-d and fusion. My situation is complicated and I certainly don't want to make you anxious.

    My concern is that your herniation is large and it's impinging upon your sciatic nerve. This is why your doctor wants to do the surgery to decompress that nerve in order to relieve your leg pain and hopefully the back pain as well. Let us know if you decide to go through with surgery. Take care :H
  • I gotta agree with staying away from chiropractic adjustments.

    11mm is a big one.

    I went for the surgery. I am glad I did.

    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • If I were you, I wouldn't wait too much longer to have surgery. My doctors kept telling me I was not causing myself permanent nerve damage from waiting, because I did not exhibit certain neurological symptoms and I took them at their word. Big mistake. Now, two major surgeries and more injections and nerve blocks than I can count later, I have the very same radiculopathy that I had prior to any treatment.

    After six months, if you have tried various "conservative" treatments, and you have such a large herniation, it very well may be time to take more aggressive action.

    Just do your homework. Be sure you are going to the best spinal specialist you can find and that you are comfortable with. Get more opinions if there is any doubt. Read up on your condition so you can ask good questions of your surgeon and so you'll be able to be an active participant in your surgery and recovery...and not just have to blindly follow doctor's orders.

    Regarding your friends and family, just smile sweetly and change the subject. Everyone knows someone with a horror story and they all think that makes them an expert in the field of spinal surgery. My favorite people are the ones that tell me they too have back problems and that they really know what I'm going through. Every once in awhile they have to take a couple Advil and go to bed for a couple hours or maybe pass up a tennis game. GRRRRRRR. X( Yeah, right.

    If you don't get results soon, don't wait too long for surgery. Most people recover quickly and do very well.

    xx Gwennie
  • I was told that I shouldn't have surgery, everyone gets messed up from back surgery. My response was "if that's what needs to happen to fix me then I'm doing it. If you find yourself in the same situation then you can elect to not have the surgery." That pretty much put an end to the discussion. As it turns out, no one can find what wrong with me, no surgery in the cards at this point to it was all moot. In fact, at work they keep asking me when I'm going under the knife. I have to keep telling them they can't find the problem to operate on so they'll have to deal with me hobbling around with my cane for a while. :)

    In all of my doctor appointments, I've had at least one family member with me. First, the drugs help me forget half the stuff I want to ask the doc (lists help tho) and they can remember. Second, they can hear directly from the horse's mouth and, more importantly, they can ask questions of the doctor. That has been a real eye opener for some of my family members.

    I had some advice from a friend who told me that if I don't have surgery (or any procedure done) that I am guaranteed to have minimal improvement, if any at all. If I do have a procedure at least I have the chance of improvement. Go with what is right for you!

    I hope you can find relief soon and have the full support of your family regardless of your decision.
    Spiney hugs :hug:
  • OK, so one of my favorite(tho it's sarcastic) to make is "do you have a license to practice healthcare?"

    Here's my 2 cents worth-you've done some conservative treatment, you have a larger herniation, and you have nerve issues. Chiropractors and nerve pain-ugh, like nails on a chalkboard for me. YOU are the one who has to live with the decision you make. YOU are the one who has sought multiple healthcare providers' opinions.

    If I had to give a suggestion to say to people I liked, I guess it'd be something like,"Well, I've gotten more than one opinion and the longer I wait the worse it could get. They're the experts and have licenses and I have to deal with the outcome, so I've made my decision based upon those things."

    Good luck, keep us posted.
  • My situation has been just the opposite. My friends and family are advocating for surgery. I have a large herniated cervical disc C5-6 and a small C3-4. Everyone is telling me surgery is a breeze and recovery will be quick....even with an ACDF (mine would be one level). I just don't know though. I have the option of a posterior discectomy or the ACDF. The thought of surgery, let alone a fusion scares me to death........people thinking surgery would be the best bet complicates things further.
  • Hi Everyone,

    Thank you all for your insight. I went to the Dr. today, and the MicroD is scheduled for June 16th. He said my herniation is as big as they come and he is reasonably certain the problem is all mechanical, i.e. remove the disc off the nerve, problem solved.

    I never thought I would actually be happy to have surgery. Hopefully, this will put an end to it!!

    Meyday321, I don't have any pain when I sit, in fact, I do ALOT of sitting these days. My pain is standing and walking. I simply cannot stand for more than a couple of minutes. Standing in line in a store is excruciating. I briefly considered jumping over the counter and strangling a very slow cashier in a craft store one time!! I broke out in a sweat and felt like I was going to pass out, it hurt that much. To answer your other question, the Dr. is BOTH a neurosurgeon and and ortho surgeon. He is the director of ortho education at Thomas Jefferson University Hospital, and was educated at Yale and MIT. I think those are pretty decent qualifications!

    Gwennie17 you are correct about others not understanding this. This is NOT a backache! If pain old Tylenol or Advil worked would any of us go to lengths we have to get rid of it? I really enjoy reading your post as you are very well spoken and level-headed. I'm really cheering for you from here in Pennsylvania!!

    Today, the Dr.'s nurse said to tell anyone that gives me grief that she allowed this doctor to operate on her own mother, that should shut them up!

    Thank you all for your kind words and support!

    Take care and I wish us all a pain free future.


  • Good. I'm glad to hear you are scheduled...and your surgeon does sound very well qualified!

    Has anyone mentioned stenosis to you, or do they think the disk is causing all the pain? The reason I ask is your comment to Meyday describing when you have pain. It could have been written by me.

    Thanks for the kind words. I know you will have some questions as you get closer to surgery. There are many veterans on the board who can provide some perspective for you and try to help with your questions.

    xx Gwennie
  • Sugaree1209,
    I had an open laminotomy/discectomy on the same area you're having your's done. Mine was on 5/19/2009 and so far, so good! I had wretched sciatica for over 2 months that couldn't be knocked down by any drugs...and I tried a lot of them! Did the physical therapy before surgery with no luck. My primary doctor and my ortho spine surgeon didn't recommend the spinal shots. I'm going back to work Monday on light duty. I heard all kinds of different opinions from people as well. You're the one who has to hobble around in severe pain. I have no regrets. I was in bad shape. Good luck to you!
  • Maryanne,
    I hear you about the check out line! I would have to plan exactly what I was getting at the store and go straight to it and then get out...always using the shopping cart as a walker! I know exactly what you are going through! Like you I could not stand or walk for more than a few minutes. I had also lost the reflex in my ankle and my heal was numb when I stood up. All of that's gone now.
  • Family and friends have your best interests at heart, but in this day and age, everyone has heard some horror story or another and are only too willing to share. I think you've made the right decision. There is nothing like the relief of getting the compression off the nerve root. You may likely have some pain following surgery as the nerve begins to "fluff" itself up to its original shape, but I would think you'd be your normal self within a few months. I unfortunately had other problems (DDD, scoliosis, etc.) so removing the disc debris only caused a bit of pulling the rug out from under the rest of the debris. Within six months I needed a fusion. If the rest of your back (vertebrae, discs, etc) are sound, it makes great sense to just remove the offending bit and get yourself comfortable again.

    All the best to you.


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • when i found out i had to have surgery on my neck i decided to tell my sister first since she had the same surgery. she told me not to do it and that i will never go back to my job as a mailman or do normal things. i proceeded to tell her that she was wrong and i would be able to work again!! then i told her i would talk to her after i got better. other friends said the same things. i even had to call my side of the family to tell them my surgery turned out. i got no calls from them to see how i was except my mother! its how you feel about it not friends and family. its been 7 months since surgery and im back to work since march 2nd 8 hours a day 5-6 days a week walking 6-7 miles carrying mail. hey i still have minor aches and pains. but i also knew i wasnt going to come out perfect either. if the surgery takes away most of the pain and problems then its a success otherwise!! Good Luck!!
  • I am glad you are having the surgery. Wish I would have had mine sooner. I waited too long and now have permanent nerve damage as a souvenir.

    I kept putting off the surgery, thinking I was being a crybaby and that this would pass. After all, my husband gets what he calls "pinched nerves" in his back all the time and they go away within a week - 10 days.

    Like you, I too could not stand up straight. I'd have to bend at the waist and lean on a table, counter, chair, etc. if standing were necessary for more than a minute or 2. I could not put pressure on my right leg. In fact, at the age of 43 I was using a cane. A CANE!!?!

    My doc referred me to a neurosurgeon. First and only thing out of his mouth was "when do you want to do the surgery?" I decided I'd rather wait. I was so sure I'd get better. Besides, in my prior job as a disability examiner, I'd heard all the horror stories of failed back surgeries, etc. His parting words to me were "we'll see you soon".

    Finally, I couldn't stand it any longer. I had the surgery. I am not exaggerating when I say I felt 100% better as soon as I woke up; in fact, I was walking that very night. I told everyone who worked with/on me that "I need to be their poster child". I was supposed to stay in the hospital 3 days; but that second day, I felt SO much better, all I wanted to do was to go home and get on with my life. Rather, get BACK to my life.

    Granted, I still have other problems with my neck and back. I am not completely pain free. But that surgery did exactly what it was supposed to do. It took that bulging L5/S1 disc off my nerve.

    Because of my ignorance and reluctance, I am having a trial for the Spinal Cord Stimulator next month.

    I wish you all the luck in the world. I hope you feel 100% better when you wake up just like I did.

    Keep us posted if you don't mind, okay?

  • Thanks SO much to everyone for sharing your own experiences.

    To Gwennie17 about the stenosis, the MRI said "no evidence of stenosis", I even asked the surgeon if he saw anything else on there, and he said no.

    Oddly enough, I am not really nervous about this (yet!). I just feel it is the right time and the right surgeon. I am more concerned about the immediate aftermath, such as the trip home (35 miles) up the Schuykill Expressway (Philadelphia) (world's largest "parking lot", even at 3:00a.m.!) and the nausea from the anesthesia, which based on past experience with a diffent surgery, was the worst part. That, and how do I get any cooperation from two teenage kids! Is there some sort of mental disorder that makes teens leave clothes and towels on the floor despite repeated pleas from Mom, LOL. Oh well, Mom is out of business for awhile.

    I honestly don't know what gets into people with the horror stories. I remember when I was expecting my 1st child, strangers felt compelled to share their delivery horror stories with me. By the time my daughter was born, I had grown used to it, and would just ask the offender, "well, if it was that bad, why did you have 3 more?" I have NEVER done this to anyone, and have always tried to be positive about whatever someone was faced with.

    Again, thank you all Sooo much! This is a great place with great people, and I will certainly be back, hopefully, with a good story.

    Much affection,

  • Hi Everyone,

    I am a week out from surgery, and am very pleased with the results so far. It was like someone threw a switch! Like many of you, the pain was gone when I woke up. I only wish I'd done it sooner. The naysayers were wrong!

    I'm very thankful for everyone's support here!

    My best to all,


    I am trying to "bump this up" for frvryoung to read since he is having the same family issues. I am tech-challenged so I hope this works!
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