Originally Posted by fionab

Just a thought: As I have a difficult time traveling very far, what we've come up with is this: We rent a cargo van from Enterprise and my husband puts a twin mattress in the back. That way I can lay down to and from wherever we have to go...usually a dr. I have to see who is about 2 1/2 hours from the house. There should be enough space in the van for other stuff you need to take with you. We've done this countless times, and the guys at Enterprise rental know us by name now. Again, just a thought on making trips easier on you

Originally Posted by smae

This has to be short because some stuff is going on at my house and I am about ready to explode. If I don't get out of this house VERY soon, something bad is going to happen. Except, I can't take care of myself or drive or anything--so I have no idea how I can leave.

Anyway.. about the SCS...

I think I already wrote that my trial is set for the 26th (Oct.) and the follow up to have it taken out on the 29th. My doctor said he was going to have them set up appointments with the surgeon (consultation and then the surgery) and then if need be, we can cancel them. He would much rather have me get in as soon as possible if the trial goes well, then to wait until that point to schedule it and then have to wait longer because the doctor is booked. So, his nurse was going to set up those two appointments as well as a follow up appointment with their office (pain management doctor). Well, the other day I got a notice in the mail saying that my consultation with the surgeon was set for the 28th. The problem is, that means I have to drive 3 times within a 5 day period an hour away and an hour back home. Right now, I can hardly get across town without extreme pain--to go an hour is excrutiating. My mom said she was going to call and see if we could combine that visit with the time they take the trial stimulator out, so we only have to make two trips. That may not be an option, if they don't have an opening. Otherwise we are thinking maybe we can go the next week... if that doesn't work, I will just have to deal with it somehow.. but 6 hours in a car and that many hours in a wheelchair/doctors office.. is going to be extremely painful.. and not good for the pooling in my legs and feet. So, we'll see.. I may just have to endure it.. and I will if I have to--because I'm hoping that better things are to come and I will do whatever necessary to get to that point.. BUT it would just be a lot easier for me and my mom (whose boss doesn't let her take time off work unless she okays it with her AND finds someone to cover the office, which she isn't required to do.. her boss is just stupid like that.. so my mom has a very hard time getting away from work to take me places...) I will keep everyone updated, but wanted to add in that little piece so I don't forget later on. I am excited to meet the surgeon, though I am nervous about how the surgery will work. I can't even let a blanket touch my toes or it sends my whole feet into major spasms... so how in the world I am going to last through a trial and a surgery where my toes will most likely be touching the table and have a lot of pressure/weight put on them... who knows. I am extremely worried about that, and am anxious to talk to both the anesthesiologist (who does the trial) and the surgeon to see if there is anything they can do to help relieve my fears or my pain.

Originally Posted by smae

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 ChristineElena

i know how u feel mine started 2 yrs ago