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Praying for your trial Oct 26

Dear Sarah-

Here's my message of prayer for you that your preparation for the trial will be well and that you will find through trial that the Oct 26th date was among the best of best blessings to come in your life for a long time. I am hoping and praying that wll will be well for sure.

Blessings on you,
Mark56:hug::hug::hug::hug::hug::hug:

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.

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 :winky:

Quote:

Originally Posted by fionab (Post 704912)

Gosh Fiona 2 1/2 hours to get to a DR:eek: . The joys of living in such a small country I suppose is that the furthest Id have to travel is bout 1/2 hour, but then I do live in the city where all the big hospitals and doctors are. But you know that is such a great idea. I cant drive too far either, or go on long journeys as I cant sit for too long and my legs get cramped. But an absolute fantastic idea;)

Thinking about you

Quote:

Originally Posted by smae (Post 703104)

Hi Sarah, I just wanted to let you know that I am praying hard for you and thinking of you alot! I am so glad that we are able to talk more and I will try to chat tonight. I am so sorry that you are always in pain and I really wish there was some way you could get a doctor that knew about all your health problems and could treat you :( You are one of my best friends and I am so glad we met but I am also sorry we have so many things in common. I really hope that the stim will work for you and if not, that they can find something else to help you! You are very strong and a great person and it makes me so sad and angry that you are suffering so much :( Fiona, had a really good idea with how to travel! Maybe you can try that when you have your doctor appointments. I hope things get worked out in all areas of your life, and I know that God is watching out for you and knows that you are having a very hard time! Take care and like I said I will try to find you later :hug::hug::hug::hug: and :smileypray::smileypray::smileypray:Love you!

Thanks for your replies. I can't really spend much time replying right now because I am having the worst pain day I've had in a long time, or possibly forever.

I slept the day away and am going to take my meds to knock me out again so I can sleep.. but I wanted to thank you for the replies.

Tara, I got my mail! :) It made my day--I love getting real mail. :) I actually got it yesterday, but I haven't hardly been online. I'm going to send you a link on Facebook in a few minutes...

Fiona, I have thought about doing that very thing.. when we were trying to get me down to Nebraska, we were going to try that. I don't have a twin mattress though, or even an air mattress. We also don't have the money to rent a vehicle for now--BUT I will definitely be trying this whenever we can get enough money to try it. Sure wish I could do that for the week of my trial.. I have to go to the town an hour away on the 26th, 28th, and 29th.. three days out of four! I can hardly handle once a month, so I am really worried about how I will tolerate that.. =(

i know how u feel mine started 2 yrs ago

Quote:

Originally Posted by smae (Post 695265)

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! :)

Quote:

Originally Posted by ChristineElena (Post 706194)

i know how u feel mine started 2 yrs ago

Hi Christine

When you say your are the same does that mean you are actually waiting two years for the scs?:eek:

Hey everyone.

I am very hesitant to be posting here right now.. but I just wanted to ask something quickly.

As of right now, this is my schedule for next week:

Tuesday (26th)-Consultation in the morning with the anesthesiologist who is doing the trial
-Trial procedure in the afternoon

Thursday (28th)-Consultation with the neurosurgeon

Friday (29th) -Follow up with the anesthesiologist to have the SCS taken out

And somewhere in there, get my B12 shot.

Some things have come up and there is a possibility that one of two things is going to happen.

1) I will have to cancel the trial and stop the SCS process or

2) I will go through with the trial, but not be able to move ahead with the surgery for many months, probably even years (which then makes the trial kind of pointless, probably.. not sure--if you do a trial and then wait years before doing the surgery, is the trial still valid, or would it need to be redone? I have no idea.)

This is my status on Facebook today: ".:. I woke up this morning with an all new type of pain, and it is the worst yet! Shocking, shooting, stabbing, dull, achy, sharp, throbbing, cramping, spasmodic, pulsing, burning.. those are the types of pain I feel every day, and yet this pain is worse than any of those.. I don't know of any words to describe how horrible this pain is. :( I just pray it eases soon or goes away completely."

This is horrible timing for this to be happening. I just wanted to ask if those of you who pray.. would please pray for me today/this week. I really need wisdom to know what to do to handle this... either way (going through with it or not) is going to cause problems and pain).

Thank you to all you who will pray/send good thoughts, wishes, etc. :grouphug:

This is just my opinion but if you are not sure you can have the permanent surgery pretty soon after the trial, I'd be very tempted to forget the trial for now. I, and some others on this forum, experienced a lot of increased pain after the trial and while waiting on the permanent surgery. We think (it was a big discussion a while back when I was between trials and waiting on my permanent implants) that it's a combination of having relief and then it being taken away from you, AND also having the nerves played with and affected during the trial process itself.

Mark also mentioned that he had a worse time of it after the trial because the trial gets nerves worked up and then you're left waiting for insurance to approve the permanent. The forum was very supportive to me during that waiting process and I was on more pain meds. during that time than I'd ever been on before the trials...but that was my experince. I'm not trying to scare you off the trial but please think it through if you're not sure you can follow up with the permanent surgery as soon as is possible.