Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

advertisement

Quick Start Forum Video Tutorial

    Forum-Tutorial-Screenshot
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

The main site has all the formal medical articles and videos for you to research on.
advertisement

We're building a better forum experience with you in mind. Beginning June 26, 2019, all Veritas Health forums will move to forum.veritashealth.com.

Learn More

Post op journey - long fusion T10-pelvis

2

Comments

  • Oh yes!!! Everyone will just have to accept our comfort levels lol. 

    I found a Buckingham collapsible wiper that I'm in love with and bought 2 more so I never have to worry about forgetting it anywhere because I still can't reach. I have seen many that look great as well that have carrying cases or sleeves. 

    I am allowed to BLT as tolerated in a week and lift up to 30lbs. My pelvis and the screws are a real problem so we will see how things are in 3 months and discuss options. I'm scared to do the full fusion of the si joints but think that might be the only thing to stop it for good. If anyone has had the full si joint fusion I'd love to hear your stories! Otherwise movements are getting a lot better! 

    For those of you who are about to go through surgery I hope everything goes well and we can help each other. This forum has been amazing at helping me cope and I'm so glad I can add insight into the long fusions. 

    Robyn,  I'm sorry you had to go through that! Congrats on your progress! We are a strong group of people! We are warriors!  

  • Im about 4 months out now and I feel like i'm just not getting anywhere.  Been doing all kinds of PT and getting moved out of my 2nd for condo cuz I can't handle the stairs anymore. Im sure the added activity and PT is the cause of the increase in my pain.  Im exhausted and mentally fried. I can't keep up my rest or my life and I feel lost and scared. The pain is enough to reconsider removing the pelvic screws but I've read it's high risk for additional nerve injury and I just don't know if the risk is worth it.  If I was in more pain than I am I could no longer function even on meds. I'm so over it but this is my life now so what can I do. 

  • advertisement
  • Hi

    I hated when everyone said "Just be patient", but your really cant do anything but be patient

    I had a 10 level fusion,  these long ones take a lot of time.  PT hurts and it sucks but you have to do it

    Take it easy, and be strong

  • WLLadyWLLady Ontario CanadaPosts: 1,489

    Megs,

    Sorry, just getting onto the forum again.  been so busy...and so sore....argh.  4 months is so early.  i look back and i'm shocked at what i was forcing myself to do.  if i had known then what i know now i would not have been pushing half as hard!  "be patient"  i hated that, my surgeon said it every time i saw him....and he still does!  you may be overdoing it if you are feeling exhausted!  it's okay to feel lost and scared-i'm just now figuring out that things will likely be "ok" for me....there are things i will never do again or will have to do slowly, but i will do mostly whatever i was doing before.  and with less pain in the long run.  pain and fatigue were sure fire signs for me that i was doing too much.  can you slow down a bit?  PT was hard to get into.  it was so exhausting.  my body just didn't have the energy.....so i did what i could.  and make sure you sleep.  rest lots.  And from where i am today, i am fused, so removing pelvic screws etc for me would be an option, but i would not even consider it until the fusion was solid.  and mine wasn't solid until a year.  and i apparently healed super fast according to my surgeon.  have you talked to the surgeon/doctors about pain control and making sure that your pain is controlled...and if can slow down a little bit....talk with your PT about your pain, and see if they can also help....I'm sorry i'm not more help.  i hope things get easier, but please be patient....please be gentle to yourself and on yourself.  this is a huge surgery and a long haul for recovery.

    Kathy
    Veritas-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • at 4 months..yes still painful...but where is the pain...I had a screw sticking out a bit so I had to have a second surgery..talk to doc and pt se what they can help you with..4 months is early still...this is truly a long recovery...hanh in there and don't give up..its ok to feel losy angry and scard..just know we all went through it..and still do some times..i agree with WLLady, you might need to easy up a little on pt, but don't stop..remember 3 steps forwards and two back..that the pattern for the next two yrs...yes...it takes that long..your not even to 6 months so hang in there..where is pain..maybe we know an exercise to help that area

  • advertisement
  • Thanks everyone! I ended up breaking a lot of restrictions because I lost all my help to prep for showing my house due to their injuries so I just had to do what I could.  Pack a box. Get it to my parents house. Clean a room, etc. I was taking it really easy and was only doing 1 task a day. 12 hours of sleep plus naps or just 7 hours of sleep it didn't matter. Maybe it's the meds and the healing but still exhausted all day every day. Im on a weight loss medication because I can't get any cardio to lose some weight and it's kept me from falling asleep multiple times throughout the day but I can't stay on it much longer due to its risks. 

    I've done only manual therapy with my pt for the last month and a half to allow my body to heal after all the damage I caused and got some dry needling done for the tight muscles that caused my scoliosis in the first place. Its getting hard to take deep breaths and I have to really try or change into odd positions to manage it so the dry needling has helped but so far it's not lasting very long and I might have to resort to botox injections soon because the muscles are so tight it's outweighed my pain. 

    I also had no choice but to drop about 6 inches off a small ledge because I had no other way of getting down. It increased my pelvic pain since then and just today I was just standing and I took a step to walk into another room and the top part of my right iliac bone is producing very sharp pains when I walk or move in certain ways, way different than usual si joint pain. My left leg is several millimeters shorter than my right so that causes a lot of pain when standing and walking and ive tried lifts but it only helps so much. 

    Im afraid not following my doctor's orders while preparing my home for sale has probably ruined what he did. I had no choice, I had no other options for help and I couldn't afford to hire anyone. I just do what I have to and deal with the consequences.

    My 6 month follow up is on the 10th. Massage has helped with my range of motion but there are some things I'll never do again like lean forward with my legs together while sitting unless I spread my legs, etc. I still cant get through the day without a multitude of meds or i'd be in bed the entire day. 6 months in I shouldn't be like this every day. We will see what the CT shows. I haven't planned a single thing for the remainder of the year until I know what's going on inside and if I need another surgery. 

    Im so happy to have such wonderful people here who really understand because I lose a little hope every single day. I have no friends and most of my family isn't there or supportive and I barely have a job.  This process has changed my life, me and there's zero joy and it took my whole life to find that and now I can't do any of those things. I can't trust the people around me because every friendship I thought was strong disappeared because I couldn't do what they were doing and who wants to sit around someones bedside all the time,  no one. It's been a very rough road and it seems like that's baseline rather than a slow progression. I so hope you all are healing and getting back to living and loving. This is just my story and I hope I didnt scare anyone because this surgery really does help a lot of people and I see that on here all the time. Some of us are just late bloomers or have more going on that gets in the way of progress. I'll keep yall updated when I know whats going on. Thank you so much!

  • WLLadyWLLady Ontario CanadaPosts: 1,489

    hiya!

    can you talk with the doctor when you see him about options for getting some help at home?  here in canada we have CCAC (community care access center) that will send someone out to help with chores/home care if you are unable to do them.  the other thought i had is contacting a community church or youth group and seeing if they would be willing to help. Many schools have kids that need to do volunteer hours and this would be a perfect thing for them-helping with the housework or helping moving etc.....all it would take is a phone call to the local school board or the pastor of a local church.  and see if your doctor knows of any services and maybe your MT or PT too...it can't hurt to ask....and if they can't, maybe they would know someone that would/could help. 

    I hope everything is okay on your followup on the 10th.  Just please take care of yourself and don't push too hard and set yourself back permanently. 

    Kathy
    Veritas-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • you sound like I was at 6 months. when you still have pain and you think you should be doing more than you can its depressing..i know, I was there. this recovery is such an up and down road. set back happen and as hard as we try to not let it get us down, well forget it we are all human and we get down with big set backs. I too was alone on my journey, and that makes it harder. the pain meds do zap your energy and it is very normal to be zapped the first yr. it takes time and hard work..i agree with WLLady you might be doing too much and need a week of rest. as you get off pain meds, it dose help to get energy back. it is sooooo important to not push too hard until you hear the magic words..your 100% fussed..thats so important.

    at this stag sleep is good, it's the time that healing is taking place. my bottom two srews are in my pelvis, and the one on the right bothers me from time to time and I am at 20 months post. what I remember at 6 months was that was the start of the rib pain or intercostal muscle pain..they say its normal, also said that botox was best treatment for it but I could not get approved for it. I still have that pain now and then, but its so much better then it was..once I was able to start swimming, that made the different for me. swimming helped with a lot of my new pains, plus it just made me feel good to be in the water. ask when you can start swimm ing if that's something you would try.

    hang in there..i feel your pain, I was there. 6 month to one year was an up and down roller coster ride for me..plus I had to have that second operation so that was a bigger set back. we are all here for ya. hope you get answer on the 10th and that your feeling better about all of this.

  • Thanks and 20 months out, you are so strong and patient! I hope for the best for you! 

    My muscle pain really started to get bad about a couple months or so ago and it gets worse at night. I've started to notice times when I feel decent and I can move with ease and then a few minutes or hours later its impossible. I'd love to get off the meds and feel good again. Dry needling has been great for about 2 weeks so i have high hopes for it. It truly is an unexplainable magic! The weightlessness of the pool is my only true solace but I haven't had time lately. I'd live in a tank if I could, maybe one of those dunk tanks would be good to order lol! It's very random but I really try to savor the good moments. 

    My surgeon was called out for emergency surgery and I had to see a PA who fat shamed me the entire time even though I explained to him I was healthy when this all happened and I gained weight after. He made me feel like I was lazy, delusional about my pain, that it was my fault and my concerns were nonsense. That man truly doesn't belong in the medical field! I had a breakdown in the room for an hour after he left. They did a full body xray and he barely looked at it but said everything was in place and there was full fusion but you can't tell that from a side view xray lol! I saw a big change in my right hip density and he didnt even look at it. I set up a new appt with my surgeon for a real post op....persistence, patience and strength are really everything for us. 

  • I do have a question for everyone. Im a side sleeper and I haven't been able to since a month before the fusion. I tried one night with as much support as I could get and i'd wake up in excruciating pain on the side opposite the one I was laying on. At best I can pull a leg up to a figure 4 position and turn my head. 

    Has anyone found a way to make it all night sleeping on your sides? I have an adjustable bed, a u shaped body pillow and many different types of pillows from alternative down, memory+latex to bamboo/charcoal memory foam and I've tried all of them in varying degrees. I miss it sooo much...curling up in fetal position under covers tucked under my chin and that fluffy pillow on the side of my face...awwww it used to be heaven.

advertisement
Sign In or Register to comment.