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It's now been 1 year & 4 months- T3-L4 & Bonegraph

Before reading this please understand I truly want to be that inspiring positive person. I still want to believe there is hope. 


I can't believe I have not been on here
for over a year! I read my post I made one month after my surgery and it made
me think of how crazy this journey has been. I am not going to sugar coat it
because it has not been easy. I am still struggling every day and trying to
figure out a way to live somewhat of a normal life. The quality of my life has
decreased tremendously and I want nothing more than to go back in time. I
always wonder if I am just the only one that cannot recover the way you are
"suppose to". Maybe it was the lies my doctor filled my head with and
me trying to meet expectations that are just not reality. I want to find
someone that can relate with me but in the same breath would never wish this on
anyone. I have been to pt and also chiropractors. 

Here are my
symptoms 1 year and 4 months:

Neck/shoulder
pain ( never had before surgery)

When
sitting on any kind of hard surface I have to get up very slow because my
tailbone feels as if it's going to fall out of my body. (sorry it is very hard
to describe that pressure)

I feel like
there are 20 pound bricks line up and down my spine all the time. 

Chest pain
and sometimes hurts to breath (feels like someone is stabbing me in my
chest) 

Still numb
on pretty much my entire back. 

Range of
motion is not great. No bending and only movement really is in my neck and
hips. 

 

Has anyone
had a surgery similar that has healed a lot better than me and that could offer
some advice. 





















Crazy
question, has anyone ever inquired about taking the rods out?


Thank you in advance for any advice, :)  

Courtney 


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Comments

  • rae1112rae1112 Michigan Posts: 147

    Hey, I just replied to your message too but I wanted to say, th e brick feeling sounds familiar to me and I can relate,  are you taking muscle relaxers? When my stiffness gets unbearable I take a flexeril at bedtime and it helps.  Helps me sleep too. 

    The chest, I would, if you haven't yet, make an appointment and be seen for that. I ended up with chest infections after surgery and I had a lot of chest pain and shortness of breath, nothing to mess with. Also I have been diagnosed with asthma. I made an appointment with a lung specialist. 

    Idk about yours but my surgeon doesn't listen to me much about anything , so it may be necessary, if you haven't, to see another dr.

    My surgeon told me, I didn't even ask, months ago that he never removes hardware and does not believe in it.

    I can bend at the hips and go to a 90 degree bend and then bend my knees to get to the ground. I think range of motion depends on the person and probably a lot of factors. It's still difficult to do many things and it sucks for sure. I try not to let it bug me or stop me, but at times it does.

    I still have a lot of numbness in my back especially around my incision and shoulder blades and it seems to come and go too. 

    I hope you find some relief,  I know how hard this all is. 

  • memerainboltmemerainbolt IndianaPosts: 6,443

    courtallison
    I am so sorry you have been going through this all of this time. I do hate to see that you are gong to a chiropractor. They are not spine experts. Have you thought about a massage therapist instead that could work on the muscles and scar tissue?
    As rae112 suggested, maybe another opinion by another neurosurgeon.

    A few good members to talk to are WLLady (my scoliosis) and xrobynx (my scoliosis and surgery). Read both of their threads, very good information and advice.

    Please take care and keep us posted on how you are doing.

    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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  • rae1112 & memerainbolt

    Yes,
    unfortunately I am still on meds. I try to ease off of them a little through
    the day but by the time I get home and I am trying to keep a smile on my face
    around my 4 kids and husband I have to take a muscle relaxer. It helps a lot
    with the pain in my chest just so I can breath and not tire myself out. I
    really wish I could get answers on my chest situation. It just does not make
    sense to me. I know due to the extent of surgery I still have a long road of
    recovery but I feel like my chest should not be a concern. I'm not a doctor but
    if it’s not the spot in my lung that is causing it then it has to be something
    from the surgery. Maybe like a muscle that is not position right or a nerve
    that swells up and causes this kind of pain. I feel it daily but some days are
    not so bad and I can totally deal with it but then there are days like these
    where I struggle to get out of bed. 

    They told
    me about 4 times that I had pneumonia and it wasn't until I did an
    investigation myself that I found the spot in my lung on the CT scan before my
    surgery. I popped the disk in my computer and examine it myself. Then took it
    to another specialist and he said he was concerned and that surgery should not
    have happen until they determined what it was. I ended up in the emergency room
    about 7 times and had to do a biopsy because they were worried it was cancer.
    It is still undetermined what it is and I get an x-ray twice a year to make
    sure it does not grow or move. So with that being said maybe the pain is
    because before the surgery my lung was larger due to having more room from the
    curvature of my spine but now it is squeezing it. I am reaching... LOL   

    When I went
    to another spine specialist after my surgery he was shocked to hear negativity
    about my surgeon because he was known as one of the best. When I told him what
    he said and how my recovery will go this doctor actually laughed!!!! LAUGHED!
    Girl I almost slapped him... I told him I am glad you find this amusing but
    this is my life and I can’t find the humor in this... He basically told me that
    it was going to be a long road and that this wasn't a basic surgery. Thank you
    captain obvious! He did inform me of something I didn't know that was done to
    me and what should not of been done. He said my doctor did a rib twist, which
    could be causing the chest pain, and also that he should have never done a bone
    graph on my hip during surgery.  

     

    If this
    pain in my chest does not subside over the weekend I am going to call around
    for another specialist next week.    

    Good news
    is that my husband is having to see a specialist right now for his neck and
    back and the guy that is working with him is also working with a few patients
    that are in similar situations as mine. My husband picked his brain a bit and
    really feels like this guy might be able to help me with the stiffness,
    discomfort, and also activating my nerves. :) Happy thoughts!!!!!

     

  • hi courtallison

    wow, sorry to hear about your expriance, I am having some issues with mu doctors and pain and so understand what your feeling, mentaly and physical. can I ask where your fustion is, I am fused with 2 rods from t9 to s2 with pelvic fixation. my surgrey was dec 14 2016, so I am 15 and a half months post. I do not have chest pain, but rather in the chest leave and a bit loer side and rib pain. mine feels muscular and I am working on movements to help streach that area to deal with that pain, thought to be intercostal mussicel pain. for me swimming is really helping with that. it is a big surgrey, and no way to diecet all the back mauscles and move the spine with out some kind of damage. we all hope to come away with as little as possible and doctors hate to talk about that part. I am currently battleing with my primary care doctor in the VA, I had to ask for a new doctors because of how I was treated. now after one visit with my new doctor I see I am doomed, I have been labled and it is hard to get them to just lissen to me. so, you are not alone. there is sevral of us right where you are.

    so to help me understand, when was your surg. and how much was fussed. and have you gotten any PT at all. massage has help me out so much, and with my legs she was able to give me some range of motion back. also to relax those muscles that were stretched and now in a different posttion cuzz of the surg. that alone is painfull but massage can realy help with that. there is a tissue throught our bodys call maya fasisou, wow I have to figure out the spelling on that, I am very dyslexic, lol. that tissue gets cut and can cuz all sorts of pain, I will go look that spelling up cuz there are some massage folks that do this maya fasouse release thing that can also help to kind of reset the muscle and help with pain.

    I hope that helps you a little keep posting so we know whats going on. right now I am fighting for just a few pain meds to use only when the pain is bad. now get this I am talking 45 pills for the yr. not many, but they insite I may not have them but rather they want me to take gavipention mult time a day for every day of my life instead, now that's just stupid and I was on it before, was so high I could not make a sandwich or bal check book. I told then not to that drug. that was exsisting, not living and I refused. I dod not miss use my pain meds, there just there for really bad moments. I have takin 1 in the past month. but I no loner have that option, the va took them away. and because I did not want there other drug, they sent me to a phycologist cuz I was not eccepting my body...lol

    I do understand your frustration and I wish I had an answer on hwo to deal with the doctors, there are some good ones out there, if you have insurance, you can go look for another. with the va cuz I have no insurance, I am stuck. but soon I will be of age I can get insurance and find a real doctor. hang in there, know your not alone. recovery from this surgrey is long, and it is hard. we have to work at it. just sorry the doctors that there are more worried about there reputation the helping. my surgon said he thinks my surgrey was a home run, and he dose not what to discuse any part of it that did not turn out right. lol doctors and there egos. hang in there we are here for you.

  • WLLadyWLLady Ontario CanadaPosts: 1,489

    Hi courtallison!

    Oh this is such an obnoxious painful long journey. I am so sorry you are having so many problems!  The breathing and chest pain is worrying though, can you see another doctor about it?  

    In my own journey i found scar tissue to be enermously restrictive to my mobility. Yes, my back doesnt bend and twist at the waist anymore, but i couldnt get my arms over my head....my massage therapists broke up a lot of scar tissue over a couple of sessions and my mobility improved a lot. I have some wicked rib pain, like xrobynx i think is intercostal right at the top of my bars....my pt and mt says with the bars and how my ribs were moved that they arent expanding right and the joints are inflammed a bit and causing the pain. So i have some physio exercises to try to get them moving better....physio has been my saving grace.  If i hadnt done physio i would never have gotten to where i am today.  My whole body changed with this surgery. My balance, my alignment-hips, shoulders....everything.  and its been a lot of hard work getting it back to something resembling normal.  I still take pain drugs off and on...tylenol and ibuprofena few times a week....sometimes i need the tramadol still....thats perfectly okay!!  If you need it, take it, the pain is crazy enough from these surgeries, do not live in pain.....

    My surgeon says 2 years for the active healing.  We arent there yet.  Hang in there.  And please come back lots, let us know how you are doing....we totally understand what this surgerh is like....i really doubt people that have not been through this can understand...fully understand what goes on in our bodies after this. Gentle hugs.....and hang in there....but please, try and get you chest pain looked at to make sure its not a pneumonia or a spot that has collapsed or something.  Our bodies have a lot of adjusting to do. 

    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. 

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