Ever since my surgery got denied, it's been really rough. I have been more depressed lately (I can tell, as can Brian and my family), and the pain has been really bad. My breakthrough pain is really bad, and the doctor had to up my meds again. I just don't know how much more I can take.
At the urging of Brian and my family, I found an RSD message board that has a good amount of traffic on it, so I am able to get some decent answers to many questions I have. So many of my questions my doctor can't answer, which doesn't help me. It often leaves me walking the trail, happening upon many forks in the road, and not knowing which one to take.
One of those forks in the road is about the Spinal Cord Stimulator. When I had my trial done (which went wonderfully), one of the questions my doctor could not answer was about pregnancy. He said he had no data, there were no trials, regarding Spinal Cord Stimulators and pregnancy. And while he said I could give birth, he didn't know about epidurals, C-sections, and how the SCS would affect all of that.
Which left me at a great impass. Brian and I know we want to have a family- I have dreamed about being a mom for so long, I refuse to give it up because of some stupid disease. But with no data, no info, how do I know if I am making the right decision? At the urging of everyone, especially after the positive trial, I decided to pursue the SCS, despite some misgivings I had in the back of my mind. I really thought that this was the best course of option.
Now that I am on this message board, though, I am reconsidering it and reconsidering it more and more. It's been denied once, so we would have to spend the next year fighting it, with no guarantee that I would be granted it. And the research I am doing...well, it's not pleasing me very much. From what I can find out, the SCS may not be the best option. Apparently, when the trial was more than a year before the permanent implant, the likelihood of the permanent implant working as well as the trial implant did diminishes greatly- they don't know why, they just know that it does. And I am reading story after story of the SCS causing RSD to spread to other limbs, making the RSD I have now worse, and just bad things in general- including things from my regular pain specialist. The worst, though, is what I have heard about pregnancy.
Apparently, with pregnancy and SCS, the news is just not good all around. Since my doctor couldn't tell me anything, I asked around to see what others had been told by their doctors. Some patients said (more than one) that their doctors told them during pregnancy, the SCS must be turned off, because of the risk of pre-term labor. Others have told me that I would not be able to have an epidural, which means either doing it without drugs (which I won't be able to do) or if I have to have a C-section for some reason, I would have to be put under general anesthesia. So I have now missed the birth of my child because of an implant that I haven't been able to use for 9 months...something just doesn't seem right here.
So I did a bit more investigating. I had heard rumblings through different articles and such that getting pregnant can put RSD into remission, but I had not found anything conclusive or found any woman who this had happened to. Lo and behold, on the message board, one of the ladies just announced that she is pregnant, and in remission- for the second time! While this does not happen to all women with RSD- some can have their RSD become worse- it seems to happen to the majority of women, from what I can tell. Apparently, it's an auto-immune response, combined with the hormonal changes.
This has made me wonder- okay, now I could, most likely, have children with the epidural and not miss it. But what about the time period when I am not pregnant? What if the remission doesn't happen for me? I can't take the oral pain meds I am on! No, but I CAN take the pain meds through the patch- which I am using right now! Apparently, it is safe to use during pregnancy, as there are a couple of women on the board who have used it during.
Okay, that solves the remission questions. What about the other times? Brian can't keep me pregnant forever, and while the patch would be a short term solution, eventually I would like to be pain free at some point in my life. I had heard of the Ketamine imfusions (you may have too, especially the ketamine comas over in Germany, where they put people into coma for about a week to try and reset the CNS). The coma is not approved for use here in the US, but the imfusion (about 6 hours long) is. It's done in Philly, at Drexel University- not far from where I am. My doctor had mentioned it as an option, and said she would write me a referral if that is what I wanted.
But there are drawbacks, too. My doctor mentioned she had another patient on the imfusions, and while they worked, during the infusions patients experience terrible side effects. My doctor said that she had heard of hallucinations- bad ones. Ones where you are being raped, tortured, killed. But the trade off is being pain free- for a long while. I have heard anywhere from 9 months to two years mentioned. I have to do more research, as this has only recently become a distant possible option.
But where do I draw the line? When do I say, this side effect is better than that side effect? Is the trade off worth it? Brian and I talked about it, and he said he would support me, but that he didn't know if he could be there for 6 hours while I had horrible hallucinations- if he had to, he would tough it out, but he said he couldn't stand to see me go through that. When do I say enough is enough?
I just don't know what to do. I never thought I would have to make decisions like these at 23- decide between missing the birth of my child or hallucinate horrible happenings. what do I do? I have prayed and prayed, and I know there are so many others out there praying for me now (I can't even begin to count the number of prayer chains I am on). I will continue praying, and I know that God will see Brian and I through this. I just wish, for once, I could catch a break from all of this. Maybe, God, it's not too much to ask for a sign of what decision to make? For a little bit of comfort, and alot of healing? I just don't know what to do, and I need some help and guidance.
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