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  • karob401
    Member
    Post count: 13

    I have MRI doctor orders but he was very specific on Friday that he did not want me to use them. However, I will use the x-ray order today and, in the meantime, I should be able to get an MRI order from another one of my physicians(if I should push faster) – for instance, my pain management doctor would probably write me one immediately.

    Quick question for you on the MRI –Someone told me that perhaps that my surgeon didn’t want me to have an MRI due to the “magnetic” imaging and that it potentially could alter/move the hardware slightly? I have never heard of this but thought I should doublecheck with you before I try to get an order from someone else.

    I understand that physicians don’t want to put you through more tests than are medically necessary (happy this is the case) and I can appreciate this but, I really feel in this case that an MRI is warranted.

    Thank you and will let you know how my X-ray goes!

    Kimberly

    karob401
    Member
    Post count: 13

    Thank you for responding so quickly! I had to post my success status, post spinal-fusion because I believe it’s so important to circle back around and let people know there is life after fusion and the success stories are sometimes harder to find. I believe your forum and email responses helped me finally come the decision that no one else could make and I felt educated, informed ( anxious but, ready) when I went for the surgery. I cannot understate the importance of your information and how it helped me select an amazing surgeon at JH (since I live in MD and insurance wouldn’t approve out of state treatment by you in CO).

    Again, I want others to know that I had L4/L5 spinal-fusion and Day 1 is the absolute worst and excruciating BUT, Day 2 the pain starts to morph into very tolerable incisional pain; I felt immediate improvement and no longer had the debilitating pre-surgical pain. All the hip, leg and foot pain I’d suffered from for 2 yrs had all but, disappeared…only latent numbness in bottom left foot, which was there before and might not go away or, just take longer– Amazing! I want people to know that you were 100% accurate with your advice and if someone still has questions –just weigh them against your current quality of life. I had none prior to this surgery, unless I was medicated, and for me it wasn’t an acceptable quality of life. My chronic pain affected everyone around me -my 12 yr old son, especially. I wish I’d made my decision sooner!

    The MVA on 1/30/14 – I was sore a few days; luckily it was a “mild impact” and my doctors advice was to wait a few days –the muscle soreness disappeared after 4 days and intimately, no changes to my walking routine of 3-5 mi per day.

    The fall on the following Friday, 2/6/14 was different. I was in the air long enough to have 3 distinct thoughts about how to try and save myself. While in air, I felt an extreme pull at left lower back –more than once (only on left, not right side) – after landing and initial shock, I got up quickly to ice but, I just knew –in that moment and way that only people who’ve lived or, are living through this, just know that something bad just happened.

    I emailed my neurosurgeon ASAP and his response was immediate — said give it a few weeks (probably because I hadn’t complained of extreme, shooting pain because I didn’t have it immediately – I just reported the fall, the back pull/strain and that it did hurt a lot). I emailed again Monday to explain the new nerve pain in toes -no response. Tuesday, emailed and included the additional new pain that started deep in my back (feels almost like a bruised bone –one small, very deep, consistent, gnawing pain on left side) and also, I’d been released for out-patient PT this week and so, I asked if I should stay on course with that – still no response.

    I took it easy that week, ignored the pain and I try to be positive –perhaps convince myself it’s a temporary setback and to push through it (reasonably). Went back to old routine; less walking. However, basically, I’m only able to function by aid of pain meds – again. Devastating, really, as I thought these days were over for me, after 2 years.

    Finally, after a week with increasing pain….lightning bolts in 3 middle left toes, combo of heat & burning and numbness in left bottom foot, inability to sit anymore than 5 min without significant pain to both legs (mostly left left and foot), can’t walk up/down stairs or drive anymore without massive pain and then, the walking not just helping at all, was the last straw for me. I emailed the JH team again.

    For some reason, I really had to push them to give me orders for X-ray & MRI (which, I finally received yesterday) and the PA also, ordered a full Epic (not sure what that is). Then, the secretary & PA emailed me frantically afterwards to tell me only have the X-ray right now and not to use the MRI order yet.

    I’m back to sleeping in a recliner (made for my type of recovery) and this morning I woke with an extreme muscle spasm in my left inner thigh. I’ve never had this before and it scares me to death. What could the inner thigh spasm be from?

    I’ll have the X-ray on Monday but, not sure why he wants to wait on the MRI. I can barely get around why not have all imaging done at once, especially if my insurance will cover it?

    Why would I get push back for these tests? Should I get the X-ray and wait for his response? I want an MRI. Maybe nothing can be done…maybe something can –how do you know?
    Should I still try some PT in the meantime or just walk for now? Walk though the pain?

    Should I consider seeing a more local Orthopedist in the meantime for long term care? I’d wanted to see him for knee and drop foot – they have a PT dept., as well. Just seems like with the Neuro’s is once you leave the hospital, you’re done unless you need more surgery.
    I don’t know what is right to do in my case but, I do know that my left leg is getting worse day by day – severe pain, entirely new spasms, more foot drop and numbness.

    I started all of this back in March 2013 with the L4/L5 disc herniations and 2 mico-discektomies (different NeuroSurgeon). Then, went an entire year under care of a pain management specialist who kept giving me stronger medications after cortisone shots, epidurals, didn’t work. Aug 2014, I insisted on an MRI because I still had extreme pain – it showed the enormous 3rd herniation at same level. My JH neurosurgeon said, post-surgery, that he hadn’t seen one so large and it was absolutely crushing my L5 nerve. He couldn’t believe that I was walking at all – lots of meds just masked the problem. I don’t want this to happen again.

    Thank you for your advice and support. Navigating these waters is so scary and lonely. I don’t want my neurosurgeon to be upset (I know I’m high maintenance) but, I can’t let it go so long this time. I had a sliver vision of my old life and I just want it back for my child.

    Thank you again!
    Kimberly

    karob401
    Member
    Post count: 13

    Hi Dr. Corenman,

    I just wanted to check back in and post an update on my status –especially for those who might read and are just as afraid as I was to get a much-needed spinal fusion at L4/L5 after having 2 micro discectomies and then the dreaded, third disc herniation at that same level.

    Your advice to have the spinal fusion, at that point, was the best advice I received. I had my surgery on December 9, 2014 and while it was no cakewalk, I was essentially pain- free! Even the horrible nerve pain had disappeared! After the first two days post surgery the only pain I had, in fact, was incisional pain and this subsided very quickly once I got home and started walking. I could hardly believe that this was possible, even the doctor told me I should expect that I would never have a completely pain-free life. I don’t know if that’s just something they are required to tell you in case it doesn’t happen this way for most people but, in my case, I was and it felt nothing short of a miracle. My surgeon at Johns Hopkins Hospital was amazing and his work is brilliant.

    Your advice over that month before I finally went in for my surgery meant the world to me and I’m so grateful for your responses when I needed them the most! I would tell anyone who has zero quality of life and is struggling with the decision to have a fusion, is just to weigh it against the alternative. I think that’s where I got tangled up and I only wish I had made the decision sooner. I was even able to stop taking pain medication six weeks post surgery after having been on them for over a year.

    At 8 weeks post surgery, I was walking 3 to 4 miles daily and had just started driving and I felt incredible –I felt like I had my life back again and could finally look forward to the future. Then, about three days later, about a week ago , I tripped over an area rug, flew into the air, pulled my lower back and took a very nasty fall. I did what anyone would do and immediately ice and rested. I dialed it back on the walking, stopped driving and returned to my practice of 20 minutes walk, ice, rest, and repeat. None of it seems to be working at all and I have new nerve pain below the left of me same side as before– lightning bolts into three of my toes on the left side. I am truly devastated. I can’t sit anymore without pain. I don’t know what to do now. My surgeon and has ordered an x-ray at my insistence. I am unsure if this is permanent damage I’ve done or, will it simply require a longer recovery.

    Your past advice was the best I received over any doctor I saw before I went to JH and so, I’m hoping that you might be able to tell me something. My doctor hasn’t or isn’t giving me much feedback. I know you probably can’t tell me too much without x-ray or MRI results. But, I’m wondering if this has happened with any of your patients in the past and/or what you think I should or can do, at this point.

    Thank you again so much for your help.

    Kimberly

    karob401
    Member
    Post count: 13

    My PCP has just scheduled me an Orhopedic surgeon at our local AAMC Spine Center in Annapolis, appointment is for Monday morning.
    In the meantime, I’m scheduled for a spinal fusion on December 9th with a neurosurgeon at Johns Hopkins – I wanted to stop putting this off and get on the calendar as soon as possible. I would have made it with my original surgeon, however, he will not do a fusion until 3 months smoke free.

    I have a slightly different question for you. How concerned should I be about recent nightly bed wetting? Does this constitute an emergency? I really didn’t want to move up major surgery so that I am able to put more time between myself and the smoking but, it’s the 4th time in two weeks that this has occurred.

    I have a call into my neurosurgeon but, quick communication hasn’t been his strong point. I guess I need to know whether or not I should be very concerned and be relentless with my phone calls.

    Thank you,
    KS

    karob401
    Member
    Post count: 13

    Spine surgeon? I feel somehow that I’ve approached this situation improperly. Do you mean an orthopedic surgeon or a spine surgeon, specifically? Initially, started this process 18 mo ago was referred to a neurosurgeon because of fragments that were sitting on my nerve and due to the continued nerve damage, I thought I was going the right route for a fusion. Both surgeons said the fusion will not make me pain free – in fact, the 1st surgeon said imphatically I won’t be pain free.

    Looks like the first JH is planning for own and cadaver bone but no cage. (Unless requested).

    I sent the 2nd doc info and he is talking about allograft for everything – bone & cage.

    So, even with the smoking – sounds like 1st JH doc approach would be best and perhaps I should ask for the cage?

    Do you think I should see another opinion from a “spine surgeon?”

    Thank you,
    KS

    karob401
    Member
    Post count: 13

    So, two different JH doctors (both neurosurgeons) who will go in through posterior but, their approaches for the fusion are different. Which one is “better” for me considering my history of the rehernations and background? Is the synthetic bone with a carbon cage better, due to my history of smoking or, is the using my own bone with cadaver bone and no cage the better route?

    I’ll be curious to know what my original surgeon says as to his approach to fusion although, Iikely won’t go to him because of the 3 month wait on the smoking.
    By the time I go in to John Hopkins for the surgery, it will be at least 6wks smoke free and I will not pick up the habit ever again.

    All of this is so confusing. However, I’m glad that I’ve been taking the time to learn and understand exactly what’s entailed this time around. I didn’t do it the first two Micro-D’s and really want to be certain this fusion and the type of fusion is the right thing to do all things considered.
    First, it was the fusion that scared me to death but, now the smoking complications have me wondering if a 3rd disectomy and waiting to see what happens is the best thing while smoke gets out of my system.

Viewing 6 posts - 1 through 6 (of 12 total)