BoneSmart® Hip / Knee Replacement Forum
Joint Replacement Patient Advocacy
and Online Community
  1. RATE YOUR SURGEON ON OUR NEW JOINT SURGEON LOCATOR

    Your opinion matters so please click on this announcement to find out how to rate the surgeons you have worked with

    You could also go to the Surgeon Locator via the blue nav bar at the top - find the tab "Surgeon Locator"

    Dismiss Notice

[CORE DECOMPRESSION] 1 year post op, how do I know if it worked?

Discussion in 'Hip Replacement Recovery Area' started by PnPnGoAway, May 15, 2019.

  1. PnPnGoAway

    PnPnGoAway new member
    Thread Starter

    Member Since:
    May 15, 2019
    Age:
    33
    Messages:
    2
    Gender:
    Male
    Country:
    United States United States
    Hello everyone,

    First off let me say to anyone reading this that I’m sorry you are here, even though I am happy you have a place like this to come to. I have been dealing with chronic pain for a long while now and I wouldn’t wish it on my worst enemy; although I’m sure my two boys would be happy to take it all away and give it to a bad guy lol.

    I’m here to get some insight from anyone who experienced core decompression or anyone who is knowledagble on the subject. I’ll try to be brief but it isn’t one of my strengths at least when writing (added a little “too long didn’t read” summary at that the bottom.

    I am a 33 y/o male with AVN of both hips I have had a 10+ year history of low back problems and neuropathy in my left leg, that included 3 separate discectomy/hemi laminectomy surgeries on L4-L5 and L5-S1, countless epidurals (something like 12-15 I think), countless medications including prednisone dose packs, many years of physical therapy, nerve burning, spinal cord stimulator trials, and finally a two level fusion in 2017.

    After my recovery from the fusion was almost done and I was finally supposed to get out of my ridiculous back brace, I was still complaining about pain near my hips. Neuro surgeon thought it might be bursitis, but an ortho I went to determined it was AVN. I know it is largely affecting the anterior and superior region on both sides. Never got an exact size of legions or the stage, however it was initially discovered from my xrays so I assume it is likely stage 2 as I do not have flattening/collapse yet.

    First ortho wanted to replace both as he thought it was a lost cause to keep going through more surgeries and recoveries when it wasn’t likely to work. I went to a Harvard educated doctor in another city (whom my mom used to work for and knows personally) that did some stem cell related decompression and he thought there was a good chance it would work. He doesn’t do hip replacements only bone recovery type stuff if that makes any difference

    I had the left done in March of 2018 and the right in June 2018. Recovery was a bit drawn out, likely due to my neuropathy, the fact that I was barely removed from my fusion and still had that damn brace on for awhile, and the overall muscle weakness and irregular gait/limp.

    I have continued to have similar or even slightly worse pain in the hips. The typical grinding feeling, that weird feeling where my hip/leg feels like it’s caught for a second or doesn’t want to go the same direction as the rest of me, etc... On the left side I am not often clear how much is my hip and what is the nerve damage, but my right has no nerve issues really but still has similar pain.

    I went in a month early as I am not feeling better and work/disability stuff is really starting to get stressful given my length of time out of work. The xrays did not show collapse or flattening, but he sent me for my MRI as one was already passed 12 months and the other was at 11 months post CD.

    The MRI also noted no flattening or collapse of the femoral head. On both the left and right it stated that there is AVN of the superior aspect that is minimally more extensive than the pre-surgery MRI from last January. No mention of the anterior that was originally mentioned in both right and left MRI reports (originally stated AVN was most pronounced anteriorly and superiorly).

    Is this normal? Am I wrong to have assumed success would mean at the very least no additional AVN if not actually showing recovery/healing of the original. Not sure if the anterior is gone or this radiologist just didn’t mention it (I would expect a mention of improvement if that actually happened).

    I will hopefully touch base with my surgeon soon once I can drive the 3 hours to get him this stuff and get an appointment. I just really want to have an idea of what I’m looking at here because I know the tendency to dismiss pain or feel that their work was successful if the results aren’t obviously catastrophic.

    TLDR: am 33, male with lumbar fusion, have bilateral AVN of hips (probably stage 2 as X-ray caught it) with no femoral head collapse, did core decompression with stem cell/bone marrow aspirate on both (14 months ago for left, 11 months ago for right). Still have grinding, catching pain and legs that feel like they are filled with concrete. MRI of both hips state that there is still AVN involving superior aspect that is minimally more extensive than pre surgery MRI (with no mention of anterior aspect originally noted). What does this mean? Did it work? Is it only supposed to slow the progression or are they not supposed to find any AVN and certainly not any that’s more extensive, even if only minimally?

    Sorry for the long novel of a post. Any advice would be greatly appreciated. Thank you all and I hope one day you all may be pain free!
     
  2. Jaycey

    Jaycey SUPER MODERATOR Moderator

    Member Since:
    Jan 27, 2010
    Messages:
    28,019
    Gender:
    Female
    Location:
    Yorkshire
    Country:
    United Kingdom United Kingdom
    @PnPnGoAway Welcome to BoneSmart! You have certainly had your fair share of surgery. I am always in awe of anyone who has gone through fusion. I need it but can't say I have the courage.

    Unfortunately if you have AVN in both hips the only remedy is THR. AVN takes holds and does not let go. It can progress from tolerable to horrid very quickly.

    Our medical expert here on the forum has indicated that unless there are little or almost no symptoms, stem cell treatments rarely work. I so sorry you have to go through this long recovery only to find you still have AVN.

    If it were me I would find a surgeon who would do bilateral replacement. One surgery and one recovery. And incidentally a much easier recovery than from fusion.
     
    • Informative Informative x 1
  3. PnPnGoAway

    PnPnGoAway new member
    Thread Starter

    Member Since:
    May 15, 2019
    Age:
    33
    Messages:
    2
    Gender:
    Male
    Country:
    United States United States
    I really appreciate you taking the time to respond. Embarrassingly enough I sat here for awhile refreshing because honestly I am at a point where I don’t know what I should do. Not to mention the stress of work asking me what is going on and up to this point all I could provide is how I feel and that is never fun with these invisible pain issues.

    So would that mean it is likely at this point that they will just say since there is no collapse that it is just a waiting game until I want the THRs?

    I have been preparing myself for the fact that your answer would likely be the reality of it all. But I guess I didn’t prepare too well because it still feels harder now that it is the likely reality and I wasted a year of my life and went through two of the most painful surgeries I’ve ever done just to be back to square one. I’m just ready to be done with it all, be happy and pain free, feel like myself again both mentally and physically, getting back to my career I worked so long to establish and most of all playing with my boys before they are too old to want to anymore.
     
    • Friendly Friendly x 1
  4. Jaycey

    Jaycey SUPER MODERATOR Moderator

    Member Since:
    Jan 27, 2010
    Messages:
    28,019
    Gender:
    Female
    Location:
    Yorkshire
    Country:
    United Kingdom United Kingdom
    If you get someone "old school" they will probably tell you that you are too young for THR. Don't buy this! It's all about quality of life and being able to do the things you want to do. Life after THR recovery is great. And being able to play with your boys and get on with your career is what it is all about.

    You need to find a surgeon who specialises in younger patients with arthritis (AVN). They are out there and more and more patients your age need their treatment.

    BTW- please don't wait for a collapse. My left hip collapsed before I was even diagnosed. Believe me - you do not want that level of pain. Getting this done early means a less complex recovery.
     
    • Like Like x 1
    • Friendly Friendly x 1
  5. Layla

    Layla FORUM ADVISOR Forum Advisor

    Member Since:
    Jun 26, 2017
    Messages:
    15,647
    Gender:
    Female
    Location:
    Minnesota
    Country:
    United States United States
    Hi, Welcome to BoneSmart. Thanks for joining us.
    I'm sorry you're struggling with chronic pain. It's something the vast majority here understands. You lose flexibility, mobility and your world shrinks as you pull away due to pain and fear of the unknown. You decline invitations when you're uncertain of what you may need to navigate or endure if the place is unfamiliar. It's no way to live.

    I haven't experienced what you have but given your situation I'd seriously consider THR. You will lose the pain and be able to move forward. Try not to look at the last year as a waste of your life. It hasn't been...you have your boys and I'm sure other family members, friends and loved ones who's company you've enjoyed and visa / versa.
    While you've suffered pain, I'm sure you've experienced good times also. This may be your path to THR, we all have one. You trusted and tried something to save your natural hip and there's no waste in that. I'm sorry you had to endure the painful surgeries but I believe something good will come out of it, even if it's only that it makes you more relatable to one person that you may be able to help, or offer advice to going forward.

    Given your age, here is an article that may be of interest to you -
    http://bonesmart.org/forum/threads/hips-that-have-lasted-32-40-41-and-45-years.13853/

    I wish you comfort, peace of mind and mental clarity as you make decisions.
    Stop back often, we'll be here to offer support and encouragement. You're never alone here.
    @PnPnGoAway
     
    • Friendly Friendly x 3
  6. Debru4

    Debru4 graduate

    Member Since:
    Aug 11, 2018
    Age:
    65
    Messages:
    522
    Gender:
    Female
    Location:
    Colorado
    Country:
    United States United States
    I can only imagine how discouraged you must feel, but as @Layla said, this whole situation has been a process that has led you to a point where you may find a long term solution to your pain in the form of hip replacement.With very few exceptions, those who chose that path have been pleased.

    I had a somewhat similar experience 10 years ago with my back. I was teaching elementary school and developed such severe sciatica that I could hardly stand, or walk. Even sitting was painful. I received a diagnosis of severe spinal stenosis needing a laminectomy as well as a herniated disc and a couple of bulging ones. I was offered surgery, but I felt I was too young, and wanted to try other options first. I spend almost 1 1/2 years trying the following things: Physical therapy, spinal decompression, chiropractors, massasge, supplements, topicals, acupuncture, and steroid injections. None provided long term relief.

    At that point I knew I needed the surgery. Even though none of the treatments worked, I was still glad I tried them first. Had I not, I would always have wondered if I should have tried something before the surgery. I met lots of interesting people, and was supported by so many in the process. I did have the surgery to correct the disk and the stenosis, and it was life changing. (Just as this hip replacement has been for me.) So, look at it as a year invested in trying alternative treatments, and a clearer choice about the future, if you opt for the replacements. Good luck with your future appointments, and your decision!
     
    • Agree Agree x 1
    • Friendly Friendly x 1

Share This Page

Sponsors
Close X