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New here, need advice and friendship

pugloverppuglover Posts: 22
edited 06/11/2012 - 8:31 AM in Back Surgery and Neck Surgery
Whatever anyone can share I would love to hear what you have to say. I am 39 , busy mom of 3 teenagers. Three years ago I woke up with terrible low back pain and my life has never been the same. I finally decided I couldn't take it anymore and had a discogram last May...got the dx of grade V annular tear in my L5/S1 disc. The surgeon told me artifical disc replacement was the only thing that would work. I didn't want surgery( I had a major brain surgery 8 years ago & am trying to avoid that at all costs), I wanted something less invasive even though he told me it was a waste of time & $. I had my PCP refer me to a pain mgmt doc and had 2 epidural steroid injections, facet block, rhizotomy..all that failed to give me a drop of relief. The pain doctor told me she exhausted all of her efforts with me and said all that is going to work for me is surgery. She has me on hydrocodone and the pain is so bad I just can't take it anymore. I am working on getting a 2nd opinion now because I want to make sure an artifical disc is the right option and that a fusion isn't the right option. I have read a lot on both and just don't know which is right.
My other dilemma is that my husband has just been transferred and we are getting ready to move in 6 months. There is so much to be done to get ready and I can't do anything right now...I am worthless. I can't decide if it would be better to have the surgery now where we live (OKC/TULSA area) or try to hold off until we are settled (Houston, TX). I don't know how long I will need to recuperate and I also am unsure about having surgery here and then maybe having any issues followup and needing care later and having to find a new doctor.
I feel extremely desperate right now...to have the surgery now. I haven't slept through the night in 2 weeks.

I appreciate any input. Thank you,


Grade 5 annular tear L5/S1 with bulging disc
Chiari Malformation 17 mm herniation - 12/00 decompression surgery


  • hi Annie

    In Texas, you will have the famous and renown Texas Back Institute available to you. (Dallas area I think)

    If you are not inclined to have a major surgery such as an ADR or fusion, can't they try a microdicsectomy?

    Sorry we had to meet under these circumstances.
    This board is quite nice and has really helped me.
    The people here "get it".

    BTW, pugs? Really? Little ankle biters. :))(
    Siberian Huskies rule. :>
    Just teasing you, had to get that in there. Love the doggies!
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • hi and welocme to the forum! :H we are here to offer you support and answer what quesions we can. you are doing the right thing in getting a second or even third opinion. :? you will need quite a bit of time to recover, so being stttled might be best for you.. :D you will need assisstance as well. =D> check out the "Back and Neck Surgery" forum for input on this! :D good luck as you face your pain issues. :D Jenny :)
  • hello and welome,
    by no means are you worthless!!!!....you are a mother of 3 teenagers thats a job on its own as i have the same family set up as you an i am also 39!!!...but i live in ireland!!!
    im rushing off at the minute to drop my 2 girls at school so ill drop by later again... just wanted to say hi.
    once again welcome to spinehealth.

    LOVE P
  • Paul
    Thanks for your reply. Yes, I have heard of the Texas Back Institute and heard positive things. We will be in Houston and they are in Dallas, but it would be an option.

    I am not familiar with microdiscectomy and the doctor I saw did not mention it as a possibility, but I am still new to all this the options available, and am spending a lot of time researching so will look into that as well.

    I appeciate your response and the fact that that there are other people out there in the world that "get it"...as it gets very lonely sometimes feeling as though noone can possibly understand.

    I love ALL dogs but have a very special place in my heart for what you refer to as "ankle biters". My pug Seabiscuit is pretty special! Siberian huskies are beautiful though.
    Thanks again for your kind words. :D
  • I would look into having a discectomy. The recovery from that is often fairly quick, at least compared to fusion or ADR. If this is not an option, if I were you, I would wait until I got settled in Houston. I wrote a message to you on another thread about AxialIF surgery and I just noticed there is a specialist in Houston who is trained in this procedure, if you think it sounds interesting!
  • Thank you all for lending your thoughts and advice. I appreciate all your posts and will definitely look in to the axialaf procedure. It is nice to know I have all of you here to lean on when in need! Thank you so much for all the knowledge.
  • Sorry to here about your long battle with pain. There is excellent advise from people on here. I am about 4 days post op. for repair to my thoracic, T7-8. Last year, I had 3 disc replaced in the neck. Prior to that, I would jog 2 -3 times a week. That all changed. Definetly get a second opinion, it helps to get all the information you can. The Axialif was done on a friend of mine around the L5/S1. It seems to be working pretty good. The microdiscectomy is also possible, the may use a stabilizing system on the back after they remove the part of the disc that is giving you trouble. There is alot of new stuff. Do some homework on it. Good luck.
  • I had my ADR in Wisconsin 6 months ago and I feel great. Great results and a great doctor. I would do it again tomorrow. Please hire someone to pack and move you..it isn't worth the pain and agony. I went home the next day and after the first few days I was feeling pretty darn good. Wherever you have it, do your homework on the surgeon and hospital.
    German Shepherds Rule! I love all animals but when you have 4 Shepherds, you gotta love 'em.
  • I think it would be best to wait until you're settled in Texas. My best friend is from Tulsa! If you aren't having any sciatic (nerve pain in one or both butt cheeks/legs) then I think a discectomy or micro wouldn't be recommended. You are NOT useless. Although you aren't able to be too physical teenagers don't require much of that. They're mostly emotional monsters; taxing isn't it? I love my girl but, can't wait 'till 15 is done. 5 more days! I have two grown kids as well. And a 2.5 year old grand son who I love watching my daughter struggle with. Neener neener! A second opinion will be worth the wait, I think. Good luck and welcome. There are a bunch of kind and knowledgeable folks here.
  • puglover said:

    I love ALL dogs but have a very special place in my heart for what you refer to as "ankle biters". My pug Seabiscuit is pretty special!
    I just wanted to tell you that I meant that in an affectionate way. O:)

    Another thing I wanted to mention was about waiting to have surgery.
    There are consequences to waiting. The longer the nerve is compressed, the more damage it sustains.
    I waited almost 9 months to get my md. In that time, my right calf shrank an inch and a half.
    It then took another 6 months after the surgery to get rid of the residual effects.

    By no means am I saying there is a rush to get into surgery.
    (Cauda Equina Syndrome the exception)

    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • When you are in extreme pain, six months seems like an eternity, especially if you can't sleep at night. I had a large bulging disc at L5 S1 and ended up having microdiscectomy. I am almost 8 weeks out from my surgery and glad I went through it. The recovery has not been bad, but I don't know if I could help with packing in 6 months.

    ADR was not an option for me because my insurance does not cover it.
  • Six months does seem like an eternity when in chronic pain. And the fact that I have been avoiding the thought of surgery and only just finally accepted the fact that in order to get my life back I really do need it. I think now that I have accepted it, I just want it over with. #:S I just want to feel better, and I want my husband and kids to have "me" back. They are so supportive and I feel like such a burden at times. For once, when my son asks me to go play tennis I would love it if I could say yes. It feels terrible when the people you care about the most get the brunt end of things out of your control!
    As far as the move goes, my husband's company has relocation assistance and movers will pack us (thank goodness for that). Our house needs a lot of stuff done to it before we get it ready to sell though.... like indoor and outdoor paint, landscaping, new carpet, a new roof from a hailstorm. So, I will be busy taking care of stuff and when you are feeling so crappy sometimes it is just hard to get motivated [(
    I had no idea the time needed to recoop from surgery, so I am glad I posted for feedback on here. After talking to my husband, I think I probably need to start researching some doctors in the Houston area and go down in a couple of months and get established with a doctor down there so that once I move I can get the surgery right away. I see my pain doctor next month, so maybe she can work with me in getting some better pain relief until we move.
  • Sorry you are feeling so much pain. I had three discs with tears and only 2 with annular tears. I think your idea of finding a Dr in Houston makes alot of sense. I had my surgery in Dec and still am seeing my Dr every six months. He did a discectomey and put in cadavar bone.Also a two level fusion. It is a long recovery and I would hate to start with one Dr and have to go mid way with another. I think your pain Dr should be able to give you something that will give you better pain relief. Just remember that the more pain meds you are on before surgery, the harder it is after surgery to control your pain. I was on fentanyl patches and oxycodone prior to surgery and they did control my pain but it was harder. But I was on these meds for a year before surgery. So I am sure you will be able to get something to help you. Good Luck. If you want to know anything about my surgery and reocvery and what to expect..PM me. I will be happy to help you through this. Also, one more thing, if you havnt had a discogram maybe talk to Dr. They found all my discs that way. My Dr was only going to do one disc first, but discogram showed I needed more, which avoided another surgery.
  • Sorry it was so long...I am a dog lover, 1 Yorkie, 1 King charles cavalier spaniel, 2 mini wiener dogs.
  • Hello Annie,
    Boy do I know how you feel. In 2004 I had an ACDF(C5-C6)on April 11,we moved to Montana from Northern Nevada on April 28.I did not have any after care in place in the small town we moved to.It was not good,I also had a 14 month old baby and a major fixer-upper for a house.My recommendation to you is have the surgery ASAP,but have your post op care set up before you get to your new location.If you know anybody in your new area,alert them of your situation,and if you don't,stay connected to everybody here.Whatever you decide,try to get a pain reliever that works better.Moving is a BIG stressor,and so is pain,so help yourself as much as you can.Tell your kids about your pain and lack of sleep,(I tend to keep my problems to myself)and include them in the work of moving.Like somebody else said,the longer you wait the more chance of permanent nerve damage.I don't mean to come off like a know-it-all,it's just that moving is tough,(I moved my stuff 11 times in 18 months) NEVER AGAIN
    By the way I'm a true Afghan fan,have had them for 30 years,until 2007,had to put both mine down(they were 15 years old)my vet had to carry me to the car!
    My aunt gave me a beautiful golden retriever in need of a home,I bought my little girl a Jack Russel,and we just rescued a rough coat Dachsund,I love them all dearly.I sure hope you can find some pain relif Annie,I'll be thinking of you. Keep us posted on your decision. Take Care Sagehen
  • Thanks for your post. I am on hydrocodone now and probably don't take it enough, at least that is what my pain doctor says. Especially with having to drive my kids all over the place, I try to just take them when I know I will be home and at night time. I hate the idea of pain meds but know I need them to get through this. Lately with the pain so bad I have had to take a lot more of them. I didn't know that about having it harder to control pain later if I take more now. When I am rolled up in a ball in the middle of the night in pain crying, I just don't know what else to do. I live in my bath tub.
    I did have a discogram with the only disc showing bad being L5 S1. That is why he said I was an excellent candidate for the artifical disc replacement because they like to do it on younger people where only one disc is bad. I do have some cervical discs in my neck that are painful but not to the point where I am anywhere close to even thinking about surgery.
    As I get closer to making decisions, I would love to hear about your surgery & recovery and may contact you again later.
    Thank you!
  • What a small world...I was born and raised in Montana and only moved to Oklahoma 8 years ago. AND, my mom raised Jack Russels in Montana for awhile! I love Montana and miss it every day of my life. But now I am moving further south, rather than back north. :<
    I do worry about the stress of the move only causing more pain, I just don't think I can possibly get this surgery done before we move now that I have heard about the recovery time needed for it. I haven't ruled it out yet, but I was surprised when I heard the recovery times. My kids are great....very sufficient and responsible, and very in tune to my pain, my sleepless nights, and what they can do to help me. That is helpful and they will be a great help in the moving process as well. I just wish it was all over. :S
    Thanks for your post and for sharing your story.

  • hello there i am also in a similar situation i am now a year post from a 3 level disc replacement done here in the states . i have never been better aside from nerve damage as a result of herniated disc. please do your homework as you mentioned you have. replacement is not for everyone you have to have good bone structure determined by a bone density test. also i decided on replacement instead of fusion for the range of movement and durability. i have also heard of many that have had to undergo revision surgery to remove or redo fusion over again. that was not in it for me i wanted it done once. i was advised by ortho that in my case i would be back in a number of years to do more levels with having done a fusion. so just another deciding factor in my particular case. so please keep in mind that we are all so different and we all respond differently to healing times . but i will share with you i was back on my feet four days after surgery i actually walked out of hospital and got into front seat of car. in a month i drove. i was doing stairs that same morning i arrived home. with no aides mind you. good luck in whatever you decide to do . just do your homework and stay positive that is half the battle.
  • My name is Meydey aka Pekingeselover :H I love small dogs. You know what they say, the smaller the dog, the smaller the poop :D

    I thought I'd cheer you up a bit. You know, you are going to a great city- Houston has the best doctors in Texas. I hear of people traveling down there because they have complex problems and want the best doctors to treat them. If you can get past the humidity, you'll be alright.

    I never heard of Chiari until I saw that Extreme Home Renovation show, and they fixed up a house for a mother and 3 daughters that had the same condition. My heart goes out to you and others who suffer with this.

    I agree with Gwennie that a microdiscectomy is the least invasive surgery with a quicker recovery. I had one in 2007, but unfortunately I had complications such as a recurring disc herniation. I wound up having a 2 level fusion later on.

    Well, it's good to have you here and I hope you find a nice home and a great doctor in Houston. Take care
  • Thanks for sharing your story. It helps to hear from someone who has gone through it and who has had success as well. When I was referred to the neurosurgeon last May I was very much in denial that I was in need of surgery and even now it comes as a very last resort after all other options have failed. I am of the very same thinking as you in that if I have this surgery it will be the only one. I had major brain surgery 8 years ago and the top 2 vertebra were removed and all of my neck muscles severed. I have never been the same, and the surgery was not a success.I still have blocked CSF flow and deal with chronic neck pain and headaches. I have been told that they can do a revision surgery but doctors say that every time you have a revision surgery the chance of success goes down and they only gave me a 65% success rate, which isn't good enough for me. When my neurosurgeon told me that fusions almost always put strain on the discs above and below the fused disc requiring additional surgery, it was a big scare for me. I know that ADR surgery is relatively new and still comes with risks of it's own, but it is extremely important for me to have only one surgery as well. The research I have done sure seems like ADR has an easier recovery too. I will continue to do my homework....thanks for your input!

  • Hi there...thanks for the nice welcome. I love Pekingese dogs and think they are adorable. Who doesn't love a dog that fits perfectly in your lap? Well, I guess there are some out there that don't! 8}
    Believe it or not, I have never been to Houston but my husband travels there for work all the time. I have heard the humidity is awful, but I have grown a little used to that over the last 8 years while we lived in Oklahoma. Before that, I lived up in Montana where it is never humid, just really mostly dry. I am sure we will do fine there, once I get my kids all settled and my back rid of this awful pain! Sometimes I think that might never happen when I start reading some of the posts on here, but I am trying to be optimistic.
    The Extreme Home Makeover for Julie Carter and her family was actually filmed in my hometown (Billings, Montana). I don't know her, but have corresponded with her quite a bit through email as she has a support group for people with chiari. She is an amazing woman. It is a horrible condition and so hard to find doctors that know anything about it.
    My doctor never mentioned a microdiscectomy, and I am wondering if it because I don't have any sciatica going on. I have a little referred burning hip pain every once in awhile, but that is it. I am worried about having one surgery fail and then having to have multiple others, so I would almost have a fusion or ADR to start with if that is what it would eventually lead to anyway.
    This board has been insightful, I had no idea there were so many types of back surgery or things that could go wrong. I made a lot of mistakes on my brain surgery by jumping in to it uninformed. It feels nice to have this forum available and other resources so I can get myself better educated and not feel so naive about things.
    Thanks for cheering me up :)
  • There are many very good websites now about various spine conditions, treatments, surgeries, etc. Some commercial sites sell a bit of snake oil, but for the most part, you can learn a lot. It is even possible to watch back surgeries. Also we now have access to many medical journals, articles, etc. so there are many opportunities to learn. I imagine the doctors hate having patients who have a little bit of knowledge -- just enough to be dangerous, probably!

    You are right that when you start out with fusion, there is no place to go from there. Once done, you cannot go back.

    I trust you are hiring painters for your house. You really have a lot on your plate right now. Hopefully by this time next year, everything will be smooth sailing and you'll be feeling well.
  • Hi Annie,
    How's things going for you today? My Dr gave me SOMA the other day and I started back on my Diclofenac,I actually got some sleep last nite!What a nice change.
    I just have to know,with your Montana roots (I'm born and raised Sidney)and your Oklahoma and Houston locales,you guys must be "from the patch".My husband and I both worked in the oil patch in Montana(we ruffnecked and later ran my dad's drilling company)then we got into mining.Both of which have no doubt contributed to my spine falling apart.We went home a few years ago to help out my husbands parents(then it turned out they didn't need our help)so we came back to Nevada.I don't do -40 winters very well anymore! I can't believe I used to work out in that!Anyway....hope you get your treatment figured out and get some relief,it can be miserable,I know. Have a nice Sunday, Sagehen
  • What a small world. I was born in Sidney. I didn't live there long, as we moved right after I was born for my dad to finish law school in Missoula, then we moved to Billings where I was raised. Both of my parents were born and raised in Sidney, and my mom moved back there about 3 years ago to take care of my 91 year old grandmother. My immediate family did not work in the oil fields, but I had an uncle and cousin and probably other relatives that did. My husband started working for Conoco when we first got married and that is what took us to OK and now TX. My grandfather on my dad's side was a family doctor in Sidney and delivered lots of babies that were born there over the years.My other grandfather on my mom's side was in construction and built a lot of homes in Sidney. My mom and her husband just bought a farm in Crane.
    I can't imagine the problems you had trying to find medical care when you moved back that way, because it is pretty slim pickens unless you get up to the Billings area. It looks like you have had a lot going on with your back and neck for quite some time. I read all the posts on here, and it makes me scared to have the first surgery in fear that it will only lead to additional surgery. At the same time, I don't know what other options I have when I can't function or sleep through the night.....
    I know what you mean about not missing the -40 winters. Montana had a terrible winter this year and as much as I miss it sometimes I really enjoy the warmer climate that I am in. It especially seems to agree more with me, as I hate being cold and when I am cold I have more issues with pain.
    I am glad you found something to help you sleep...for me when I finally sleep it makes a world of difference on my outlook the next day! I may still have pain but I seem to manage it a little better.
    Enjoy your Sunday also!
  • When I saw you were born/raised in Montana, decided I had to respond. :H We're in Bozeman and I have a wonderful neuro/spine surgeon who performed a foraminotomy on my neck a month ago for herniation at C6-7. When I went to him I'd been on hydrocodone for over a month and he told me that hydrocodone doesn't relieve nerve pain. Even though I hurt all the time, it did seem to help, but he switched me to oxycodone and that was a great improvement. You might ask about a change in pain med if yours is nerve pain, which I assume it is. Also, why don't you ask your surgeon for a referral to a good surgeon in Houston. I don't see how you can stand the pain for another 6 months, but I do recognize your dilemma in trying to make this decision. At any rate, no matter which way you decide to go you will have the name of one surgeon who your doctor recommends.

    Wishing you relief! :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • Funny....I went to school for a year at Montana State, and I have 2 brothers and an uncle in Bozeman.
    All that I have ever been offered is hydrocodone, and I wasn't aware that it wasn't great on nerve pain. I think the reason I haven't tried other drugs is partly my fault, because when I first saw my pain doctor I was stubborn and told her I didn't want pain pills but other methods like epidural blocks and I was very against any type of pain pills, so she told me after everything failed to give me any relief that she couldn't help me and I needed surgery.She fills my hydrocodone, but that is it. I take topamax for my chiari which I have heard is supposed to help with nerve pain but I am not sure. When I see her I will ask about the oxycodone. The hydrocodone takes the edge off, but I still feel the pain quite a bit.
    Also, I did plan on asking her for the name of doctors in Houston. She is actually a neurologist who does pain mgmt so I am hoping she might be able to give some good referrals. Thanks so much for your thoughts, I appreciate it! >:D<
  • Thanks for your nice reply.

    I understand Topamax to be a migraine med, but we all know that many meds are used for other conditions as well. Have you been offered Lyrica? It is not a pain reliever, as such. It is manufactured specifically for fibromyalgia pain and apparently is prescribed frequently for nerve pain due to back/neck problems. I used it for a couple of weeks and it did relieve probably 90% of my pain but I couldn't live with the side effects, dizziness being one. But it might not bother you at all once you get used to it. My surgeon used it when he had a herniated cervical disc and was able to avoid surgery. No idea if it would work for you but it's worth asking about when you see your pain mgmt doc.

    Keep us posted. :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • I was offered Lyrica and tried it for a very short time but hated the way I felt on it. I couldn't function at all on it-- I felt like I was going crazy and having an emotional breakdown; very wierd and unusual side effects where my husband said he felt like he was living with a different person. I also did not have any relief of my pain, but probably did not give it enough of a chance.
    Topamax is used off label for many things, but I take it to manage my chiari headaches.
    So many drugs! If only we all could find the perfect ones. :/
  • welcome to spine health i have been in pain for 15 years now with my back and leg and i have thoracic outlet syndrome .i have just found out that i have facet joint hypertrophy on multi levels .i have also reached the end of the active pain treatment line and there is nothing left for me other than pain killers and at 43 that's not good .having said that i have a fantastic wife and a lovely home i also find spine health a grate source of help and have found some lovely kind people on here i hope that you do too never give up
  • I find that statement unrealistic since the FDA has only approved 1-level lumbar ADR in the USA.
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