Originally Posted by Sarah Mae

Hey there everyone

Just wanted to update everyone on my situation, since I went to the doctor today. My appointment was supposed to be this afternoon, but they had a cancellation so it was moved to this morning. I went in and we talked about which of the options (shots, pain pump, or SCS) I wanted to pursue. I told him that he said that the SCS would be most successful, so I would like to start on that process.

From what I've read here, it is usually a long process--I've read stories (not necessarily here.. just online) about it taking a year or two. My doctor said it wouldn't take that long. He said it wouldn't take a year or two--but rather, months. I am excited about that!

His nurse is going to set up an appointment for a psych evaluation for me. Then a week after that, I will go back and see him and we will set up appointments to meet with the anesthesiologist who will do the trial... and eventually set up an appointment with the rep and surgeon. I can't remember exactly the order of the appointments, but that isn't such a big deal--I'll just take it as it comes.

Here's what excited me the most, though it made me a bit nervous. I have two options as far as towns nearby to have the surgery. One is about 45 miles away and the other is 55. The town 45 miles away is smaller, but the reason I originally wanted to go there is because the doctor said that this surgeon uses newer technology. I believe he uses the Boston Scientific SCS. The town 55 miles away has several doctors to choose from, but they use older technology--I believe it is Medtronic. The first time I saw this doctor, he said that the doctor and rep 45 miles away are very good and he knows them personally, but that the ones 55 miles away (where this doctor travels from once a week to my town... his practice is in the town 55 miles away) are also good--he just doesn't work with them as often.

So today we said we'd like to go to the town 45 miles away since it sounded like that doctor is awesome. However, my doctor said that if I go there, he only does the lead wires, not the paddles. I told my doctor that from all the reading I have done since my last visit, the majority of people have the wires, not the paddles. Paddles only seem to be put in (from my reading--though I could be wrong) when a person has always been extremely active or in a few specific situations.

My doctor said that most of the people he sees with SCS implants get the paddles--so it is the reverse. The paddles are used much more. That seemed odd to me, but whatever!

I said that I would be more comfortable with the paddles since they are less likely to move... however, I realize it is a tougher surgery to go through and a longer/harder recovery. The thing is--I haven't been able to be active for all of my life because of pain. I'd love to be able to ride bike, run, have kids someday... all of those things. And since I'm only 24, the last thing I want is to have surgery after surgery because the lead wires slipped. He said it doesn't happen often... but because of my age and because I have a lot of life ahead of me, he thinks the paddles would be a better choice.

Most of the research I've done is on the wires... so now I'll have to look at things specifically for the paddles. They sent two DVDs for me to watch--but they are old. When they get back to the town they usually work from, they said they would send some updated ones as well, along with reports of my last two appointments.

So, I'm a bit nervous about the thought of the paddles... it sounds so much more painful... BUT I think it would be a better choice for me if I hope to become very active in the future. Obviously, it depends on my medical problems, because if I still have the pooling in my legs and feet, I can't get out of bed much even if my pain is better. But we'll see.

So, my process is officially starting. It's becoming real, and he said that as long as the trial goes well, within months I will have a SCS. First step (the evaluation) will be coming up very soon!

I'm excited... but nervous at the same time!

Originally Posted by Sarah Mae

Thanks, Rae. I will take a look at that site as soon as I'm done posting this.

I'm hoping the pooling stops, but nobody is too optimistic about that. I don't remember if I told you that we found out where it is coming from--the POTS?

It's another condition I have (that they diagnosed at Mayo and didn't tell me about). I am on medicine to stop the other symptoms, and I go from 1 pill at night to 2 pills tonight... will work up to 4 each night and then go see my doctor again.

It's a type of steroid and most people are on it for life (if they have POTS). It is supposed to help with all the other symptoms, but doesn't usually do anything for the pooling. Unfortunately, that's a symptom that the pills just do not work for.

According to every doctor I've seen (4 or 5), the pooling is not anything to do with a circulation problem, and it does get much much worse when I am up out of bed and standing or walking. SO that doesn't give me much hope for that... but we'll see. Never know.. and it doesn't hurt to try!

But even if the pooling takes years to go away--or even if it never does, I'd still love the pain relief from the SCS. Even if I'm stuck in bed, being in less pain would mean that I can spend my energy on other things besides fighting the pain all day and night.

I'm volunteering with InterVarsity College Fellowship (I was involved in it all 6 years I was in college). I'm also working with a pastor at my church to start a ministry for people with illnesses/disabilites. So I have plenty to keep me busy--but I could do much more without all this pain.

Of course, I'm still hoping the pooling stops... but unless God takes it away, it probably won't happen. We'll see!

I'm excited about moving forward with this process, though... I just want to get going! =) <3

Originally Posted by Sarah Mae

My psych eval is on Monday at 2 pm.

My follow up appointment with my pain management doctor is October 6th.

Then I think he said we will talk about an appointment with the anesthesiologist who will do the trial.

Just thought I'd update everyone.