Weird pain/swelling toes, lower back. MRI done and GP confused

Hi all,

I am currently seeing my GP back and forth and I am seeing a neurologist soon - so I am hoping all this will get tidied up.

But, nobody can place a finger on what on earth is going on.

In brief, I have unilateral pain (left side)

I started having discomfort with my lower left back, in the hip/pelvis area 6 months ago. I saw a physio who couldnt quite figure it out.

Its come and gone over that  time but it got better and didnt stop me from being active.

Then, September came around and I developed this awful pain in the ball of my foot, underneath the 4th toe. 

Googling, you would think Morton Neuroma - long story short, its not.

Then, progressively my 5th toe has started to turn inwards, almost curling under the 4th toe.

The 4th is huge - very badly swollen. 3rd toe is now swollen too but not as tight as 4th toe.

The pain in my feet can be unbearable.

The pain shifts, sometimes its unbearable in my hips/lower back. Sometimes I can not physcially turn around in bed.

I have a significant loss of strength in my left leg. I struggle to bend my toes back or forward.

The left foot is a different colour to my right - slightly more red/dark

The left foot is warm

I can not lift the toes from the floor. The big toe just wiggles on its own.

Podiatrist thought it could be nerve damage in my lower back, pinching a nerve and causing all sorts of muscle dysfunction and swelling

I have had an MRI on my lumbar spine that came back completely normal - absolutely no issues

I also have an XRAY on the foot - absolutely normal.

I have had a full blood count, with tests for ESR,CRP inflammation markers and they all came back normal within range.

I am absolutely confused. Hopefully the neurologist will be able to shed some light. I am preparing myself for the worst. You google all these things and its the worst thing to do.

Can anyone suggest any reason for the swelling, the pain, the shifting in pain and how it can be unbearable on a night time?



  • Welcome JackPr we’re glad you’re here!

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  • Good luck at the neurologist and please keep us posted. Oftentimes back and hip pain go together. It’s good IMO to have a specialist like a neurosurgeon review your lumbar MRI, in addition to the radiologist.
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  • Hi JackPr

    So sorry you’re going through so much pain. You should ask for an MRI on your Thoracic spine. For almost five years, I had symptoms of hip pain, leg pain but hardly any back pain except at night while I’m sleeping. My symptoms were mostly on my left side. The top of my left foot was also swollen. My symptoms started  around 2014/2015 and between 2017 and 2019, I saw no fewer than 7 NS. I had PT, epidurals, none of which helped. I had seven MRIs from 2016 to 2019, all on my Lumbar spine, except for one which I’ll explain later. In Dec 2018, I saw a NS who said I had moderate spinal stenosis in my lumbar spine and surgery (laminectomy) was done two weeks later. That surgery made my symptoms worse and by February, I felt I was going to be paralyzed pretty soon which I mentioned to the NS. He sent me for another MRI again on my lumbar spine but this time the radiologist saw something on my thoracic spine and called him and advised him to do a thoracic MRI with contrast ASAP. An MRI was done the next week with contrast which showed a huge tumor (Meningioma) on my T10 which the NS said was probably there for 10 to 15 years and was severely compressing my spinal cord. Surgery was done in March 2019 but my spinal cord was so severely compressed for so long by the tumor that I have nerve damage and I’m dealing with mobility issues, among other things. I also have Myelomalacia. I cannot walk for more than about 10 minutes or so and I cannot sit for long. I use a wheelchair if I have to go out. I take Gabapentin for nerve pain. 

  • L4_L5LL4_L5 Posts: 1,275
    edited 11/30/2019 - 1:18 AM

    @marisa1985 I’m sorry to hear you’re still having so many issues. Do you still have the swelling on your left foot? 

    You don’t regret having the L4-L5 surgery do you? Did you get a second opinion before the L4-L5 surgery? Did you have any nerve root impingement at L4-L5 that warranted surgery or was it the moderate stenosis that made your neurosurgeon want to perform surgery? 

    If you had to do it all over again would you have both the lumbar and thoracic surgery or just thoracic? Just curious.

  • Hi L4_L5

    The swelling on my left foot is not so bad as before. I do regret having surgery on my Lumbar spine, as I think that wasn’t my problem. The doctors couldn’t understand why I was experiencing all these symptoms and put it down to spinal stenosis in my lumbar when in fact, it was the tumor in my thoracic spine. If they had done an MRI on my thoracic spine in the first place, the L4 L5 surgery could have been avoided.  I did get a second opinion on the spinal stenosis diagnosis, the first NS wanted to do a fusion. The second NS said I didn’t need a fusion, he did a Laminotomy, but as I mentioned before,  it was a needless surgery. No, the MRI did not mention nerve root impingement on my L4 L5, just mild to moderate spinal stenosis. If I had to do it all over again, nope,  I would not do the L4 L5 surgery. Thanks L4_L5.

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  •  I forgot to mention that I had an MRI with contrast last month and my spinal cord is still moderately compressed. The MRI mentioned cord is deformed at the T9 to T10, together with Myelomalacia. Perhaps that’s the cause of my ongoing symptoms? 

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