Leg pain + Muscle weakness = Doctors treating me like I am dying? Why?

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I had a microdiscectomy 2 years ago on my L4 and L5 discs, which eventually healed fully, but since I've had semi-annual pain / muscle weakness for ever since, that I've been told by Physical Therapists that it was likely phantom pain and were in fact able to fix the issue non surgically within 3-4 visits.

After a very recent Colostomy Reversal mid-October which has healed perfectly in the last 5 weeks, however I got this striking pain again on my right side, and when doctors / specialists test muscle weakness in that leg by pushing down on my raised toe or walking on that heal they start talking to me like I might be dying.

I don't get why this shocks my doctors, I've had urine and blood analysis at multiple hospitals, and my vitals are consistently good and I heal miraculously from Sepsis and being on the brink of death!

I've gotten fast tracked from:

1 . Colostomy Surgeon Referral to specialist

2. Orthopedic Specialist visit w/xray that showed L5 "looked odd"

3. MRI today

4. Meeting Spine Surgeon Monday to discuss MRI results

I have not been able to do non-surgical options due to risking a Hernia from Colostomy Reversal healing, my walking is getting worse and I can walk less, am I going paralyzed?

I've fully recovered from this before via PT, but I'm not sure if I am getting beyond a point of no return if I don't agree to a surgery, and I'm in a borderline crisis mode about what may be happening to me and if I should jump back to an immediate surgery if suggested?

After the MRI tech cringed at my ability to lay down / get back up / walk after the MRI is now 4 medical providers I've freaked out, and I'm starting to mentally collapse as I can't get out of medical crisis mode 😦

What the heck could be going on with my body?

0 likes, 10 replies

10 Replies

  • Posted

    I forgot to state, every referral to the next level of doctor was purely the push down on both toes to see how much resistance the muscle gave, and they saw I obviously walk limply because of pain.

    Though the muscle weakness is the test that just shocks them, the exam doesn't cause pain and I have some resistance, just not full resistance like my other foot, but they just look like they discovered cancer 😕

  • Posted

    I thought I was the only one with this bunch of stuff. I can no longer get an MRI. I can only walk 5 minutes before the pain in my back makes it difficult to walk. I hope some answers come in. I am so done with surgeries. I figure a back surgery will be the final killer. good luck to you. and me, selfishly.

    • Posted

      Can you explain your symptoms and how long you've had them?

      My primary doctor originally thought it was the IT Band, because it's like just an extremely acute pain between my hip to my knee that radiates down to my foot if the nerve or muscle stays irritated long enough, but it originated from very sharp lower spine pain.

      If noone chimes in, I'll report back on my Monday visit with the surgeon.

  • Posted

    Yup...neurosurgeon to look at the MRI. If the problem isn't clear, they'll order a CT/Myelogram with contrast, the "gold standard" spine test. Gives the docs an excellent view of all aspects of your spine. My guy then pinpointed the egregious spot and did a pain injection. A slight improvement in the next few days followed by back to horrible normal confirmed the location for the surgery.

    When I had leg weakness (both legs), the neuro found foraminal stenosis...two vertebrae closing together and pinching off the nerve roots coming through the foraminal canals. Mine was at L2/L3. Fixed with an LLIF (XLIF or OLIF) fusion (Lateral Lumbar interbody Fusion). Open you up from the side, drill out the bad disk and replace it with a device that works like a car jack. Insert and then use an actual Allen Wrench to open it up to where the vertebrae are now separated and the pressure is relieved on the nerves.

    I had this done a while back. Instant and complete stenosis relief, one night in the hospital, no brace, no rehab. Miracle op. Search YouTube for "Globus LLIF Technique" to see a cool animation.

    If your problem is stenosis, this is the cure...


    • Posted

      Thanks so much for the detailed input, I have been on FMLA for about 6 of 12 weeks for the Colostomy Reversal procedure, and if I don't return full time in 6 weeks my employer will let me go which is a nightmare scenario.

      So I am going to need to make a snap decision tomorrow to schedule surgery as immediately as possible if needed, so I'm glad to hear your procedure was a fast recovery.

      I can work from home sitting down, so I am not terribly worried about recovery time, but 6 weeks is a crunch to schedule spine surgery 😕

    • Posted

      The problem is that you need TWO surgeons for the surgery: 1. A General Surgeon who opens you up and moves "stuff" out of the way so there's a clear path to your spine; and 2. The neurosurgeon who does the actual XLIF. Finally, the GS does the close. The timing problem is that you have to find a neurosurgeon who's done the procedure many, many times. Then he/she has to coordinate the surgery with their GS of choice who's also done this lots of times. Both schedules have to match to secure a firm surgery date.

      I've been in a lot of pain since January when I twisted the wrong way and screwed up L1/L2. After MRI, PT, pain shots and CT/Myelogram, my neuro has decided to do a double XLIF at L1/L2 and T12/L1 (yes, they can do two levels in one op). After the GS closes, he'll flip me face down, open my back and install rods to keep the fusion in place since T12/L1 is a very tricky transition zone from thoracic to lumbar. He's making sure I don't need another fusion 3 years down the road.

      So... Find the right doc, get cleared for the surgery (if the neuro agrees that this is the fix), have them look at their schedules and find a good date. Right now, for me, the holidays have screwed up all their schedules so I'm getting this done 3rd week in January. Gotta wait it out with zero pain meds. Who cares...pain and I are old friends.

      Good luck. I hope this is the right procedure for you but only the neuro can tell you that.

    • Posted

      Yeah if its something that needs to be scheduled out, it would probably be either in 2 weeks or 10 months, anything in between will literally cost my job. I mean at the end of the day I'd have to get the surgery and lose my job if it's going to paralyze me, but really hoping to enjoy that outcome.

      I will report back my discussion at my appointment tomorrow for everyone's knowledge here, it really stinks that these kind of absolutely necessary procedures can cost someone their jobs 😕 Blah.

    • Posted

      And again thanks for your info CHICO, you are an invaluable asset to this community!

    • Posted

      Thanks. I love passing the info on.

      Two weeks is probably not going to happen. If it's scheduled out a few months, you just need to find a temporary pain solution like me. Voltaren Gel (RX in the US, generic diclofenac elsewhere), capsaisin patches, cheap TENS unit, Makers Mark...you know, OTC stuff...

      The key is identifying the root cause and fixing it. Nothing else should do.

    • Posted

      The MRI revealed the same L5 disc has a herniation which is what I had a Micro-Discectomy on 2 years ago he could actually see the previous incision where the last surgeon went it on the MRI.

      No surgery suggested yet, as the strength tests on my feet both showed about the same strength (except walking on my right heel the foot just hits the floor), the surgeon initially recommended an Epidural Cortisone shot to the spine to try relieving the muscle irritation, however steorids drive me absolutely insane (can't sleep / eat / psychosis / the whole 9) so I asked for PT.

      That was yesterday, today I woke up and my left leg cramped to a point I couldn't uncramp it until I put my foot flat on the floor but its still painful and weak, so I called them and get the insurance approval for the Epidural to hopefully happen tomorrow as I have FMLA right now (off work) so I can lose my mind entirely without having to worry about it affecting my work.

      So I will hopefully have the injection tomorrow, have a follow up in 2 weeks, and continue to get better from here as the doctor said the MRI / the tests he administered from strength in my legs appeared to be improving.


      Why doctors turn white @ muscle weakness observed? Its because if it gets worse it can lead to long term leg weakness / paralysis if left untreated, I am hoping I can figure out enough with where the issue is that I can have a surgery scheduled by next fall, as I cannot believe that having this happen twice now is going to correct itself.

      Please let me know you thought @CHICO_MARX or anyone else, I feel this is important information for others that may have this same problem, I will keep this updated as to how things continue to improve or just move along.

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