it’s confirmed! I had spinal cord compression on top of my PA symptoms!

[Scott-rock]

As I’ve mentioned before I was diagnosed with cord indentation at C5/6 , but the surgeons said it was only indentation, I argued that it was basically the same thing as compression . But told to stop using doctor Google!

Well after finally getting decompression surgery, one of the surgeons assisting at my op , yesterday confirmed that it was not just indentation, but actually quite badly compressed on my right side.

Now it’s been released the numbness in my right arm and hand is the worst I’ve ever had. When I think about all the comments they gave about it not showing signal loss and no sign of damage. It makes my blood boil. It’s only mild , not severe like the MRI states .

Anyway I’m still injecting every two days and wonder if supplements of oral methyl daily would be of benefit, I found the BetterYou one help me when I started treatment for PA , I know only some of it will be passively absorbed , but surely every little bit helps heal the damage, or should I try everyday injections for a short time?

I look forward to hearing opinions and will make my own decision as to how much I do.

Thanks everybody for your support

[Nackapan]

It's odd how a report says one thing and a neurologist another.My daughter had an obvious bulge / hernia on s screen shot of an Mri.

L3/4

Causing alot of pain . Some incontience and unable to walk.

Caudia equine was tested for .

Sudden episodes of legs giving way and unabkd to use hands well.

Fortunately with diazipan ,pysio pain killers bed rest it resolved without an operation.

She was very young .

It's awful when mixed opinions and advice.

Glad this will now improve for you .

I imagine every other day b12 is enough.

With a good mix of other vitamins snd minerals.

Time is what you need

Perhaps pysio. .

I hope improvements very soon.

[Scott-rock in reply to Nackapan]

thanks, I was discharged with no advice or paperwork. Absolutely shocking treatment. The junior neurosurgeons were completely at odds with the neurologist , GP , urologist and radiographers. It wasn’t until I saw the head of department that the other doctors were believed. Even after he changed me to urgent the system still screwed around with me. So many directives were breached.

[Jillymo in reply to Scott-rock]

I am sorry to hear of the abysmal treatment recieved but it seems to be the normal these days. At last the compression has been recognise and hoefully resolved. 🙏 I would like to wish you a speady recovery.

Take it day by day and try not to rush things.

[Sleepybunny]

I hope you recover soon.

Do you know if there is a link between spinal compression and B12 deficiency?

[Scott-rock in reply to Sleepybunny]

I know low B12 causes bone loss in the spine, I had hypercalcemia prior to being diagnosed with PA .

Low B12 increase proliferation of osteoclasts which are responsible for drawing calcium from the bones, high/normal B12 increases osteoblasts which put calcium back into the bones. My issue is that I have multiple conditions that can cause this bone loss of calcium, but thankfully with treatment either surgery to correct the parathyroid issues and replacement therapy my hypercalcemia is now back to normal levels. .

My only real concern now is that I’m hoarder line polycythemic. From the testosterone replacement therapy as it and the B12 correct red blood cell function shape and size. But can also increase the amounts of haemoglobin and haematocrit.

It’s so hard getting the right balance.

[jointpain]

I have cervical spinal stenosis at C5 -C6 and saw Professor May at Walton, he was very happy that I was SI B12. He is now retired. My latest MRI after my cycling fall was described as degeneration of spinal discs, the MRIs I have had recently have not been shown to me at all and explanation of them non existent really. I still self inject B12 and I'm on naproxen which I take for the weird pains the stenosis gives me. I have now replaced my GP practice with another, I just hope they are better at explaining things to me.

MRI of spinal stenosis

[Scott-rock in reply to jointpain]

mine is every level affected apart from c1 , my C5/6 cord image actually changed shape and narrowed. They called it contact/indentation, I call it compression and distortion!! Guess who was correct?

I feel the years B12 treatment has helped protect and keep the myelin sheath from real severe damage. They kept saying there’s no sheath injuries.

When you continue down my spine my thoracic is good and stable until T12/L1 then there is basically the same problem as my cervical spine.

Hope you get some results quickly , it’s much better treated early than when it to late and permanent damage is done.

MRI of neck Spinal Cord and vertebrae

[WIZARD6787]

Good on you for advocating for youself and being successful.

[Scott-rock in reply to WIZARD6787]

I had to advocate very hard , letters of complaint to RACS, three to the hospital , three ED trips and finally the head of surgical access for the health board and quoted chapter and verse of the surgical access directive. I am very lucky too, as I have an amazing GP . His patience and understanding has been greatly appreciated. We’ve had our moments too , especially over the B12 , but he realised I do my research and am usually going in the right direction.

I don’t know how people back in the UK are managing, I know I probably wouldn’t have been around trying to get answers by now.

[AirAl]

Interesting. I have herniated disks between C4, C5, and C6. That blinded me to the pins and needles my PA was giving me... Until the tingling hit my legs and torso. At that point I knew it wasn't my upper spine disk issues. Fwiw, my injections had a noticable impact in the first few weeks and by about 6 months almost all the neuropathy symptoms were gone (except the "MS Hug" which still lingers 3 years later). Good luck!