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Spondylolisthesis help and support

edited 12/07/2014 - 12:20 AM in Back Surgery and Neck Surgery
Hello everyone ! This is my first post. Some background on me. I am a 30 year old woman no children unless you count my dog. I am a licensed massage therapist in the state of NY. As a teenager (says surgeon) I apparently clean cracked off both transverse processes on either side of my L5. He tried asking me what I had done to myself but hand to god, I've got no idea. He said it's common and probably didnt cause me any pain until my car accident. I have a case in process so can't disclose TMI but I was rear ended at 40 mph at a dead stop unexpectedly in to the back of the car in front of me. The accident forced a severe herniation 7mm into the spinal canal foraminal stenosis, and 5 herniation all very mild,in my neck that thank Jesus have healed. Anyone in a car accident know's that nothing appears for a few days. I started to get Charlie horses, bolts of pain from my butt crack (sorry) across my low back and hips then paralell to my legs down to my ankles that caused jumping legs and explosions of pain across my feet and toes, limping and pain that kept me from doing anything in one position for longer then a 30 minute window. As a deep tissue, sports, and orthopaedic massage therapist, I couldn't afford the pain. Well I started the meat packing cow processing back and forth with MDs. First stop Chiro 3 times a week for three months. Left in more pain towards the later half of the second month and awful headaches. Dr 2 my Angel, ordered xray and MRI and an EMG. He is my ortho surgeon. He referred me to pain mgmt. Tried him and as usual get put on the loratab and Aleve. Aleve kills my stomach sadly. We did an epidural injection that was fantastic for only 5 days. I couldn't take it anymore so I dropped chiro. Met with the insurance chiro and the insurance ortho doc that both agreed I needed help. Amazing right ? Started PT had about 6 sessions. I was "alright" after but the minute I woke up in the morning I felt like I had a boulder in between my backside cheeks just a knot of pain and pressure that would zap me with a strength of a cattle prod trying to bend or twist. Well as of 3 days ago surgeon said continue with PT but that it's time to operate. Being 30 it blows because I don't want to be on pain pills for the rest of my life at some point they just don't work. Massage makes me lock up like fort,Knox even gentle. I am not over exaggerating when I tell you I will sit in a hot hot bath for over 2 hours just to get relief minimally for the pain. I can't drive on days I took the pill and scarily enough I've had my leg go numb and trying to stop my car was like a kick in the pants pushing down on the break. I care about others and myself to much to put anyone at risk of me driving on,these pills.

Anyway, the procedure we discussed is an ALIF PLIF with cage and fusion and a laminectomy of L5 fusing,it to my sanctum. He said usually he does the procedure over a course of 4 days front,first but because of my age and,good health he will do them,on the same day. My surgeon is even letting me,bring my parents free of charge so they can have there questions answered. In the space between once the disk is removed he is putting a stem cell bone grow in to help the fusion.

So yes I'm to scared to poop my pants over this, but I've been trying to maintain a better then ever position seeing as if I've had spondy for half my life. I will be what I was always supposed to be and won't have to worry as much about a fender bender causing me paralyzation. I have quite the swagger limp that baby's my left almost like I'm inches shorter on my L then my R.

I want to know how to stay positive from folks that will have or have had any surgery like this. What got you through from movies to food to mood, books, anything. I try to not complain because I don't want to lose the support from,them,becoming annoyed. I know they wouldn't leave me but still how do I support them. My boyfriend says it's just scars after surgery and is supportive but we don't talk much about it. My mother is being a mother and my dad has had back surgery.

I know I will need the raised toilet seat and the walker, but if you can recommend anything to help it would be fantastic. The anterior approach starts with a C section scar but I don't have children so I don't know what pain that will be. I've read some people swear by holding a pillow to cough or laugh. What about what to wear to stay away from my pubic line or what you have used to avoid irritation to that area at all. Ice packs ? Heating pad ? What about a grabber or a sock helper ? Embarassing as this is ...what helped you clean up after moving your bowels or urinating? Wet wipes for sure. I've seen the tongs to help but that won't make me feel So clean. How did you shower ? How did you travel in a car ? I know it will,be time before I can drive myself. Stool softener ? Drink tons of water ? The only surgery I've had were a,D &C an my gallbladder out but that was lapro. How do you pace yourself walking ? Videos you suggest on YouTube ...

Like I said any wild big small tiny or just helped you tip you can offer will be taken in to consideration. I'm sorry this is so long but I'm trying to find someone to identify with who been or is going through this as a support buddy. We could rely on each other. My next appointment is 12/18 then we schedule surgery then. Just trying to get a jump on things before hand. Thank you immensely for taking the time,to read this. Also any questions you recommend asking the DR at my next appointment that you felt would have helped you to know the answer to,before surgery.
Holly House


  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • littleonellittleone Posts: 77
    edited 12/08/2014 - 12:23 AM
    I can't offer any advice, but I can offer empathy. I'm going through a similar situation and definitely feel the same frustration. you're a few steps ahead of me - I'm waiting to hear it I'm up for surgery. I look forward to hearing others advice and following your journey. hugs to you.
    (oh - I have had a c-section. as far as the pillow held over the scar? works like a charm).
  • How are you holding up ? Didn't want you to think I forgot about you. New development I'm starting to get groin pain from all this stuff !! Met with insurances doctor yesterday so we will see what he says in his report since they don't or can't rather tell you anything. Surgeon appointment Thursday and back to pain mgmt on the 31st ... Fun cycle.
    Holly House
  • littleonellittleone Posts: 77
    edited 12/16/2014 - 4:50 PM
    similar boat - thanks for asking. I think the prednisone had taken down the inflammation, so I was able to go a handful of days without pain meds-yay! but, I over did it (not that I really did anything) and now the pain is back with a vengeance.

    I used to be able to walk to help with pain. not so anymore.

    do you get muscle spasms in your calves? that's one of the hardest things for me to deal with - on top of other symptoms.

    i did meet with the surgeon, and he said surgery is a go; most likely next month. now it's hurry up and wait for insurance approval. i wish these insurance people had to walk a day in our shoes! then maybe things would move a little quicker.

    I hope PM helps you out. my PM dr. is fantastic. he has taken the time to really listen to me; and that was huge.
  • I get them from the bottom of my bum through my hamstrings through my calves around my ankles and across the tops of my feet .. People can tell when I'm having one cause it makes my legs jump .. Not cool ... Everyone says stretch it out but it makes things above or below spasm out. Did they discuss what surgery you'll,be having ? I have an okay on the Dr end .. For a ALIF and a PLIF... He said he does each stage of the procedure over a course of 3 days but because of my health he will do them both in The same procedure to minimize problems from under going major anesthesia. He said doing the full 360 if you will .. Will be better chanced that my fusion will take because I'm a smoker. I'm trying to quit. Im doing well so far. Maybe 3 a day, the hard part is not freaking myself out over Surgery and making me want to smoke. I am still doing PT to strengthen my core muscles and my PT is awesome they push me safely to get the most prepared for surgery. I see PM on 12/31 at noon great way to bring in the New year huh ? Kind of a personal question but my bathroom habits have changed quite dramatically. Sometimes I move bowels 3 times in an hour its the only thing that eliminates abdominal cramping. They say with Spondy to watch for groin numbness and loss of bowel or bladder control. I had my gallbladder out last year from dropping 40 pounds quick and since then my bowels are unpredictable depends on what I eat so I don't chance not being near a toilet which can be hard being a massage therapist ... I guess I don't know if what I'm experiencing is my GB removal or my spondy ... There was never cramping or pain in my low back before this accident . thanks and sorry for being so Frank
    Holly House
  • PM prescribed prednisone 4mg pack to be finished the day I got my epidural injection ... It made me crazy sweat and restless ..
    Holly House
  • I've heard of that problem post gallbladder removal. But, with the potential bowel/bladder issues, that would freak me out too. Have you mentioned it to the surgeon? I have colitis, so I've dealt with similar issues for the past few years. The pain medicine has been helping me though.
    The surgeon told me he wants to do an ALIF with posterior instrumentation done minimally invasively. I'm all for it. He said that where it's just the one level causing all of my problems, it should take care of the problem and be a relatively uncomplicated surgery. (I sure hope so!)
    Oh, one thing that keeps freaking me out - the surgeon told me I had a clean break of the pars (the little pieces off the back of the vertebrae) so my spine is "floating around in there." That fact has made me scared to move or do too much. I'm not even sure what I'm supposed to do with that information?
    I feel your pain on the smoking. I quit when I found out I was pregnant. Quit cold turkey. Post baby, I started up again, but have always kept it to less than four a day. Now, I've quit again. This time is harder than before - the stress is killing me. and that makes me want to smoke, too. (I always smoke outside - never around the baby).
    Prednisone helped me. Albeit it was short lived relief, but it did work for a couple of weeks.
    On new year's eve I have a second opinion scheduled with a neurosurgeon. So I'll be thinking of you too!
  • Yes my surgeon is aware ... I'm grade 2 spondy and it's aggressively deteriorating . He said if I wet my self or poop (sorry) myself that I need to get to the hospital immediately. He said frequency or consistency wouldn't be considered so much .

    I also have the free floating pars If you will. He said if he we're to touch that piece he could,move it any way other then twisting it .. That freaked me out too. The bone that pokes out of my back right about my bum is where it all starts from. Same level of spondy I have a 7 mm herniation. This bull poop is for the birds I tell you. Finally scheduled my appt with my spine doctors surgeon lol ... I guess this guy fixed my surgeons hernia which is a good reference. Pain pills almost make me want to smoke more ... Let alone the dwelling and waiting for this. I just miss my life post car accident. I understand your scared to move but if anything,else gets taken away from my life I'm liable to go bananas ... Walking the mall for Christmas is a joke ... Stopped taking any Motrin or nsaid because that can prohibit you're fusion from taking. Added on 1200mg calcium citrate to help the bones grow back ... On and on ... Tried walking the mall Like I said ... I had to take 2 of my loratabs to continue shopping which blows because pain make s you crabby. My parents finally get it that I'm hurt .. Surgeon did everything to explain what my injuries are and how surgery will fix it. I kid you not that man answered every question I had written down and it's a lined piece of standard notebook paper front and,back. Great guy !
    Holly House
  • sandisandi Posts: 6,343
    edited 12/22/2014 - 5:28 AM
    You and I are in similar positions at the moment.......although my new spondy is a stage 3, according to the last images done a few weeks ago. And I've got some other things going on as well.......but once your surgery is over, you will be on the road to recovery........
    It is a good thing that the surgeon answered all of your questions, that's what you want, and that he listens to your concerns and worries.
    Loosing bladder or bowel control is serious, and the surgeon was right to tell you that if it occurs to get thee to the ER asap.......
  • littleonellittleone Posts: 77
    edited 12/22/2014 - 2:03 PM
    holly - is the prednisone helping you at all?
    sandi, have you had surgeries already?

    I am going stir crazy too! got to go out yesterday to the mall to finish up Christmas shopping. yup it was a joke. ended up sitting on the floor in target in the kitchen furnishings. this stuff is for the birds. I'm 36. this is bumming me out big time!!!
  • and apparently will be facing a third.........consults are in January.......
  • I was on the prednisone only once and it didn't help much neither did the epidural
    Holly House
  • littleonellittleone Posts: 77
    edited 12/31/2014 - 12:21 AM
    how are you holding up?
  • edited 01/01/2015 - 10:04 PM
    I think I'm a wreck but I'm trying to keep it in. Because my stuff is car accident related I'm having a real bard time driving especially riding passenger. Sudden tap of the brakes or unexpected swerve really upsets me. I instantly feel like the wind gets knocked out of me and get super hot and sweaty it sucks. Now when I sleep at night I wake up all upset. I'm having to tell people in my dreams that I will see them in a few weeks and I'll miss them, but I have to have spinal surgery. Literally 2 back to back last night. This whole thing is a mess. Had a drug test yesterday at the pain management office which makes me feel like a slime ball. I know I'm not and I know I need these meds. I also know and can only imagine some of the user and abusers they do deal with and the laws and scrutiny they as prescribers face, but I don't like feeling like a derelict. Oh well what can you do. How are you holding up ? Happy New year by the way !
    Holly House
  • Hi positivevibesLM: I have been reading your history and wanted to give you some help with everything. I have worked mainly for orthopedic doctors, and have had 5 spinal surgeries in the last 10 years. My neck surgery, I think, was the easiest surgery I have had, but still a challenge. I have a plate and screws in my neck. My oldest daughter has the same condition that you have, and it is not uncommon to have pain and problems in the coccyx area and bowel problems. I don't know how much you know about spondylolisthesis, but the vertebrae at the end of the spine juts forward and brings the spine into misalignment. This also makes everything seem pushed out, like your stomach, and after you have children you generally have more pain. She gets tired because she has slight curvature of her spine due to this. Now to get back to the spine area.

    My spine has been operated on in the mid-to-lower area of my spine, and I have had my coccyx removed too because it completely turned backward and the only thing to do was to remove it. I have a rod and screws in my lower lumbar area and they went through the back of my spine, although he did tell me that if I require any further surgery to my back he would have to go through the front of me. I was in terrific pain after this last surgery, and it took a lot for me to recovery, but I did and I am a lot older than you. I would recommend any aid you can get to help keep you from bending, stretching, or doing things you should not do. Get an instrument that grabs things and you don't have to bend over to pick up things. You will need a portable potty that fits over the top of your toilet so that you don't have to sit down too far. This really helps. You will have to use wipes, because it is too hard to try to wipe yourself otherwise. They also sell wipes that are meant for bathing and you can clean yourself up until you can take a shower. Get some dry shampoo too. I was driving my car at about 3 weeks, and I did fine, but had to be very careful. I wore my collar day and night until I saw my orthopedic surgeon in the office, and still had to wear it for about 3 weeks. Each day is hard, but it gradually gets better. They get you up in the hospital and have you walk around by the second day. You will need pain meds, and they will give you that and send you home with a prescription. Back surgery is not a walk in the park by any means, but you have age on your side, so I feel you will do well. Have you sought a second opinion? Just from what I know, I think that you need a second opinion just to make sure there are no other options, then you can go into surgery feeling calmer about the whole thing. Another thing is that when muscles are cut they take quite awhile to heal and there are nerves that are cut as well and they do not always regenerate. I have numbness in my lower back and feel only pressure, and no other feeling there. I am afraid though that I am going to face surgery again whether I like it or not, and am scheduled to have another MRI of my back and neck. If you think of anything you want to ask me, please do not hesitate..I will help you if I can. I saw the date on your post and it said that you were to have surgery in December, and are probably home recuperating now. Let me know how your surgery went. All the best to you, monique
  • littleonellittleone Posts: 77
    edited 01/03/2015 - 1:07 AM
    Have you talked to any of the doctor's about the panic you're having? that really stinks to have to go through that.

    I agree with you about the humiliation with pain management. it's not like we are using these meds in a recreational manner. I have been experiencing crippling sciatica. i spent new year's eve wide awake, curled up in a ball. couldn't sleep, eat or think straight. terrified of moving. i considered going to the ER, but really, what will they do for me other than treat me as a drug addict?

    spoke to the surgeon's office yesterday who refilled my script no questions asked, and told me "once that sciatica pain starts firing up from the disc herniation, there's really nothing we can do for you. take the norco to try and get ahead." i also do ice/heat, showers, etc.

    I guess surgery was approved yesterday. now i'm just waiting to schedule it.

    I hope you are doing better.
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