CRPS, Spinal Cord Stimulation and Pregnancy, Oh My!

High guys,

I'm 34, and I have a Spinal Cord Stimulator which has caused me nothing but problems since I got it in 2017. I'm in the UK. I have it due to severe CRPS which was caused by nerve damage to my arm after a fall, and then nothing being done about it.

My leads are in my cervical spine, I have a percutaneous wire at C4 to T1, and the battery unit is in my left buttock as I didn't have enough tissue in my back/behind my abdomen.

After coming off a shed load of medication, including 40mg of zomorph twice daily, my husband and I discussed trying for a family with my Anaesthetist, Neurosurgeon and GP. We were given the green light as I had managed to wean off my medication with this in mind.

I have to travel 4 hours to get to a hospital that has someone qualified to deal with a Spinal Cord Stimulator, my local hospital has no experience at all. They are not common in adults under 50 in the UK.

I have just found out, after a lot of stress, that I am 5+3/40 pregnant with our first child. We contacted my Neurosurgeon, and they are refusing to give me an opinion one way or another whether to have the Stimulator switched off for pregnancy. They literally sent us some studies done on individuals post-birth in hindsight, stating that they do not have a definitive answer.

What the hell am I meant to do?! If I turn it off, I lose use of my left arm, and I'm in agony.

I am also awaiting an anaesthesia injection due to the insertion of the Spinal Cord Stimulator causing some nerve injuries in my back. They did put another lead in and told me that it would help the pain that the nerve damage the first lead had done... It didn't. Due to the issues caused by the first lead, they refused to remove the second lead that enters my Lumbar region up to the Thoracic level. So they just turned the whole lead off but have left it in place 🤦🏻‍♀️🤷🏻‍♀️ As far as I know, I have leads all the way up my spine which causes issues with access to appropriate epidural sites if required. Due to the leads being positioned where I require my anaesthetic injection, they were going to use continuous x-ray guidance to attempt to place the anaesthetic, however, they are now talking about all sorts of issues, including how X-ray guidance isn't appropriate in pregnancy 🥺

So, I not only do I have no idea what I should do with regard to having my device switched off, I'm now really worried about not getting my anaesthetic injection in my spine. I'm worried because if I turn my SCS off, I lose the ability to live an even vaguely different life (never a normal one)! However, if this means something could happen to our Little Bean, then it needs to go off now!

Does anyone here have any words of advice or experience? I will bake you cookies 🍪 😊