Quote:
Originally Posted by Rrae
You said the Magic Words!  EYE contact!
Ok! This says alot! I'm so happy to hear your first visit with this specialist went this well and that he has won your utmost respect!
That's the other most important part - if he's well-credentialed and confident in what he does. And you have a very good relationship with your family Dr for all these years. This is all good.
It's always good to have someone with you at these appointments.....a second set of ears during an important appointment such as this can be crucial!
I see you post at the PN forum........wonderful folks there. Just the right amount of mix of very informed people, with a twist of humor just for good measure  Humor is such a good thing and you've got it too! But yes, there are those days when it's simply not possible to even smile. Pain can crumble a person from the inside out.
Are you doing ok on the Fentanyl patches so far? They were a LIFEsaver for me when my PN battle was at it's peak. They truly do serve their purpose, so I sure hope they are giving you relief, so you can at least have some semblance of a quality of life. I'm sorry to hear that you've been bedridden for several months tho 
The process of getting a SCS or Pain Pump can drag out for months and months, which I'm sure you've surmised by what you've read here.
The first part of the process is getting insurance approval. Since these procedures are so very (VERY!) expensive, there are several steps in getting approval, one of which is the 'Psyche Eval'. If your Dr hasn't brought that up yet, he will, so don't feel intimidated by that. And don't think that HE thinks you are 'crazy'. It's standard protocol and we've all had to do one.
There are detailed posts on this if you go thru the older threads you'll see alot of discussion on this. The psychological evaluation will help everyone to be on the 'same page'. (Everyone, meaning you, your primary care Dr, your Pain Dr, Surgeon, your family support system, your insurance, the manufacturer of the implant and their representative(s))..... There's quite a team effort involved.
So, I'm very happy for you that you've connected with a specialist who looks you in the eye and will listen to YOU. If he's looking out for your best interest, then so far so good
I'm going to log out so I can go take a gander at your website ok!
It's good getting to know you, Sarah Mae, and you'll enjoy the others here at the SCS/Pain Pump forum. Everyone here is so caring and we all look out for each other like one big family. And yeah, we kid around some....just to keep things a wee bit on the light side  ......but you know as well as any of us how not-fun chronic pain is.
TTYS
Rae
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Yes! Eye contact and he knows his stuff! His last name is Ripperda which makes me giggle a bit--I don't know why... it is just a fun last name. I was blessed with the boring last name of "Nelson" and then the name Sarah to boot--so I love unique names.
I do enjoy the PN forum, but I was happy to find out about this one as well. I also read a lot on the RSD/CPRS forum (at least for now--if it turns out that I don't have it, I will stop frequenting there), the spinal and back forum, and the chronic pain forum. I read, anyway--I don't always respond much because I don't usually know how to answer the questions that other people have. I do like reading, though--and I am finding a lot of people I think I could relate to.
I do like to laugh, and while the last few days have been major struggles, I still try to smile and laugh as much as I can. If I didn't, I would hit rock bottom on a daily basis. Between my back and my neuropathy, I've been told for years that it's a hopeless case and that I will live my life like this. Wonderful! If I couldn't laugh or smile, I would have no reason to live.
Unfortunately, the fentanyl patches haven't done a thing, really. The first one convinced me that it was giving me some relief. My main source of pain is constant lightning shocks every 15 or so seconds through my toes and feet. I went FOUR DAYS without shocks--3 of those days being when I had the first patch on. I was SO excited. Well, I think it was just a fluke, because the second, third, fourth, and fifth (that I just put on about 40 minutes ago) haven't done a thing for me. I am, however, at the lowest dose--25 mcg/hr. When I talk to my doctor on Monday about my vitamin levels (which I talked about in my CaringBridge and a post on the PN forum), I plan to ask how soon I can go up to a higher dose. I've been on this for 12 days or so (I think--3 days times 4 badges) and it just hasn't given me relief. He told me from the start, though, that since I have so much pain, I may not even respond to this dose and he would work me up slowly. So we'll see--I'm holding out hope that a higher dose will work... because without hope, I have nothing.
I am a bit worried about the psych eval. I had to have one before my gastric bypass surgery. I'm just worried that some of my discouragement with lack of pain relief will come off as depression. I've been very lucky and have not struggled with depression (not with this pain, anyway--I did back in high school). My pain management doctor said that studies show that someone with depression will not find much relief with the SCS--but people without depression have a high success rate. I don't understand why that is, but he said it's been proven, so I believe him. I know in my mind and heart that I am not depressed.. but that doesn't stop me from having bad days or weeks--and I don't want that to show through and look like depression. Other than that, I'm not worried... since I've already been through the process before.
My mom does come to all my appointments with me (I'm living with her now) since I am in a wheelchair and can't drive or wheel myself around (it kills my back!). However, she doesn't remember anything really that was said--haha. As time goes on, I will maybe have her take notes or something for me. I came home and wrote in my caringbridge about the SCS several hours after my doctor appointment Wednesday, and remembered almost every detail. Thankfully, I have a pretty decent memory, and am now off of all the medicines that really affected that.
That's nice that you are going to take a look at my website.. I try to update it often because a lot of family and friends read that to keep updated--that saves me from having to repeat myself a million times.
Thanks for your replies--it is so nice to meet people who understand a bit of what I am going through. Everyone here does seem very nice, so I look forward to meeting more people and getting to know you (and them) even more!
Take care--hope you have a great week!
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥
My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.