Today was my neurosurgery appointment, and the consultant was really, REALLY lovely. He showed me my MRI, and although the report said I had a bulge in the disc I had the microdiscectomy on, he showed me that it's really tiny and is just a little bit of scar tissue. He said it's enough to cause my sciatica (which I knew) but there's nothing there that needs intervention from a neurosurgery perspective. I asked him what he felt was causing my burning pain and leg weakness and he showed me that the corresponding disc for that area (L2/L3) is absolutely great with no impingement on the nerves. He then asked me if I'd read about CRPS and told me that's what his diagnosis is. I know that's not a great thing to have, but oh my Lord I'm so relieved to know, to just know. All this time with a diagnosis of "lower back pain and radiculopathy" and I don't have radiculopathy at all. I want to dance and tell the GP to shove that in his pipe and smoke it, as my Grandad would've said lol. Not really, I want a good relationship with the GP but at least I have something I can say, "This is what it is, this is me". I'm sure I'll get low about it soon but for now, I'm just grateful to the consultant. Also, the best bit is that he's writing to the pain clinic to ask them to consider me for the SCS. A very very good result today. xxx

Oh Kathy, While I HATE that you have CRPS, I'm so glad you have a diagnosis!!! Now I hope you can get some APPROPRIATE pain treatment. :D I just hope you don't have to wait forever to get approved for the SCS. :(

Now remember that the SCS will NOT help with the back pain -- only the legs. It might help a little, but very little with the back. :( I only got stimulation in the legs when I had mine. But it all depends on where they put the "leads" in your upper back. At any rate, the surgery is a snap -- no problem at all.

PLEASE keep us posted on what happens, etc., okay? We SURELY want to know what's going on with you. ;) Gentle hugs, Lee :winky:

Want to talk
 

Hi kathy,

Im in a similar position to you. I live UK. Struggling to get definitive diagnosis and help. Im chronic now and have been in agony 3 months since onset of what appears to some neurological disorder. Today i cant walk. Seeing neuro and under pain clinic but....... Got another MRI scheduled 4th April. I cant type as in too much pain. If you would like to talk and comfort each other via phone im here for you Ok. Just say.
Stay strong. You are in my prayers and thoughts. God bless x

Thanks both of you! Leesa - it's by no means definite that I will even get the SCS yet. Over here you have to jump through hoops and fit certain criteria, and one is that other methods have been exhausted (I believe). It might be that I have to see a neurologist and/or go through a Pain Management Programme first, and then I would have to wait to be referred *after* that to see if I'm even suitable. It's not the pain clinic themselves that do the SCS you see. If I do get it I will be over the moon but I can't see it being within the next 2 years if I'm realistic after everything I've experienced so far. I'm really grateful for your support and advice Leesa, you've been really lovely xx

Mads - I'm so sorry you're going through what I went through, I wouldn't wish it on anyone. Have you ever been to the painSupport website? Google it, I go on their forum and although it's very quiet compared to here, there are regulars on daily and all have chronic pain. xxx