[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!

[fionab]

That's great about all this progress. And having more than one good dr. to choose from!! I'm sure the folks on here who have paddles can give you insight as I only have leads, albeit two cervically and two in the lumbar.

By the way, I think you do have your timing correct. First, psych. eval. (to make sure you don't think this is going to 100% make you whole...want to make sure you have realistic expectations), then the trial, then if the trial gives a good pain reduction, you get scheduled for the surgery. I went through two trials and then the final surgery for my two implants. The lumbar trial was in May, my cervical trial was in June and my two implants was Aug. 19. So, not really that long of a time line when one's been in pain so long prior to that.

Will caution you, tho'....several of us on here experienced increased pain between the trial and waiting to get the actual implant. Hard to say if it's because the experience of pain relief during the trial is so awesome or if it's 'cuz they mess somewhat with your nerves when they do the trial. I think it's a combination of both. So you may want to consider pain relief needs for the time between the trial and actual implant surgery.

Good luck and I'll be rooting for you from the sidelines as I'm sure others who have the paddles will be giving you good support and advice.

Thats great news Sarah Mae that you are officially starting the process. I know when I initially went to my pain management Dr it was Sept 08 and after a full year of trying to manage my pain, ie meds, injections, epidurals, rhizotemies, spinal infusions lidocaine & ketamine and Lidoderm patches it was then that we decided we have explored every avenue to no avail and the next step was the SCS. I went for my psych evaluation in November and between Christmas and holidays for my Dr and me etc it was April before we did the trial and then progressed to the final implant in August.
The psych evaluation is to make sure its 'not all in your head' but also to make sure that there are no other issues going on. My psych explained to me that she had a patient who was sent to her for evaluation for SCS but it turned out she had depression also so that needed to be addressed before they could even contemplate an implant etc. Any underlying issues are addressed. Its also good to 'get it all out too'
So the very best of luck to you and keep us all updated on how things are panning out for you........

[tchr012]

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!

That is so great Sarah! And I totally understand how you are nervous and excited because I am the same way right now! I also have been trying to find more information on the paddles but am not having much luck just the regular leads so maybe I am not looking in the right direction? I am very happy for you and I hope this process goes by very quickly! I also wanted to say that it did not take that long for me to get my stim implant I believe it was accident 2/2008, then went through shots, phys therapy, and had the trial done in 4/2008 and then had the pysch eval 6/2008 and then had permanent placement in 08/2008. I had the lapses because I had to find a new doctor to do a permanent and I was also seeing other doctors for other health problems. It did not feel like it was that long since I was in so much pain and just had recovered from a recent partial disk removal the summer before the accident! It is so hard to be chronically ill and in pain when you are young (its hard at any age tho) because you see all your friends living their lives while you have no control over yours, so I can understand where you are coming from about that! I will keep you in my prayers and I know that things are going to work out for you and that you will finally get some relief from all the suffering! Take care 'sTara

[Rrae]

This is wonderful!
I'm thrilled to see that your Dr got right on the ball with this!

I'm sure you've probably read back thru alot of the posts, so most of the process will be somewhat familiar to you.....
There's an excellent thread back a few pages on the psyche eval.....

And here's the VERY informative site that Fiona provided up in the stickies. It's kinda mixed in with some various chatter, so not sure if you had come across this. But now that you've got your 'Official' thread going! yayy! I thought I'd put this here for you.....
It explains EVERYTHING paddle leads, percutaneous leads.......

http://www.nationalpainfoundation.or...e-technologies

I'm so impressed with this site, I'm gonna also go put it on Tara's thread, since she said she was having trouble finding info.....

This will be a wonderful turning point in your life, Sarah!
And I'm hoping and praying that when you CAN start becoming more and more active, maybe the pooling in your legs will start to go away.....especially if it might be a circulation issue or something..... ?

Well, just know, you've got the sky for the limit for support here!

Rae

[smae]

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

[tchr012]

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

Sarah, I know it is really hard when there are multiple things wrong and I can totally relate to you! Even though we have different things I just know its hard because a lot of times one condition will cause the other condition to get worse and also do not get me started on all the meds I take lol. I am so very sorry that you are going through this and I will have to research what POTS is because I do not know what it is but I am sorry that you have to go through it! I am so very excited for us to be getting our stims and you know besides everyone else, you will always have me here too! I am looking forward to us being able to talk more! I don't mind talking about any of my health problems or my experiences with my stim so if you ever have any questions for me feel free to ask! Anyway, now I really do have homework to do so I will talk to you soon! Have a good night and remember you are always in my thoughts and prayers! Love you lots

Big'sTara

[Mark56]

I shoulda come to this thread FIRST!! Great news Sarah. My PJ is Boston Scientific with paddles and I have been most impressed with my situation. As you know from my posts, I have even left pain management meds behind. I look forward to the discussion with my physiatrist next week about the long term. I feel excitement. Hope. Joy.

Lay your little fingers side by side and ponder them, thinking in terms that paddles are a little less than that width. Surgery is never a pain free prospect, but with this one, I was glad to have it, and more so that it was for real once they turned PJ on for me..... actually, I was the one doing the programming under the watchful gaze of my rep, Mike..... whatta guy. Since my body was the recipient of the signals, it seemed only logical for me to take the mouse and "make it so." I set my own programs. Glad for them since, and they have not let me down yet. If I need a tweak, it would be simple to get Mike on the phone, since he and I have spoken since.

I pray much for you, my friend, and hope all will be well with you,
Mark56 PJ Z:circlel ove:

[smae]

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.

[tchr012]

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.

Thats great Sarah, I am so glad they are getting things scheduled Take care 'sTara