The process has officially started!
 

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'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.:hug:

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:rolleyes:' 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........

:)

Congratulations! That is great news
 

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 :hug:'sTara

Congratulations!
 

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! :hug: 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!
:grouphug::grouphug:
Rae

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

I am praying for you!
 

:hug: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:hug:'sTara

Hallelujah indeed
 

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 :hug:Z:circlelove::circlelove::circlelove::circlel ove::circlelove:

Appointments
 

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!
 

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

May all be Well
 

So that you can move on toward trial and get "the feel" whether thia is right for you may all of your preparatory appointments be good, prepared, and all go well at that time!

Hallelujah for you!
ASAP,
Mark56 PJ:)

Annoying little frustrations
 

If Hugs Could Talk.....
 

(((Sarah))) .....
You've had one HELLo of a day and I'm so sorry.....

To be honest, I think those 'psyche evals' are not what they are cracked up to be in a lot of cases. I mean really. Who ARE these people and what gives them the 'right' to think they really 'know' if this procedure is right for us or not?!
You did the right thing by being honest. They won't hold it against you for being honest about the shots. Maybe he is trying to determine, or rather, 'make sure' it's not some sort of actual 'phobia' or something.....
It's human nature to not want to do cartwheels when getting shots.
It won't be the 'deciding factor' in this whole process. It's just that maybe they will feel they need to address the 'anxiety' in more detail, that's all.
Heck, I admitted that YES I am depressed as hell! My quality of life has gone down the toilet since this pain battle began.
I'm betting that as long as you are conveying to 'them' that you simply want your life BACK, or obtain a 'better quality of life' would maybe be a better way to word it.....
The issue with the needles can be discussed in more detail. It's not something that should cause this process to come to a screeching halt.
It sounds to me (at least from what you've shared in your post), that all went pretty standard - with the psyche eval......It's not fun being scrutinized tho, plus, you felt like cr@p because of the B12 shot, plus you had to climb stairs to get to your appt and they didn't accomodate you like you were led to believe (footstool).....it would have been nice if they could have done that for you, so you could be more comfortable that whole time.

It all just kinda goes hand in hand with that all-too-familiar unfortunate reality of how people just simply don't 'get it'......they don't understand what it's like to be in pain 24/7. If 'they' can't 'see' your pain....then to 'them' it's not 'there'. :( Which leaves us feeling pretty dang lonely and .....ya.
I'm so sorry you are feeling like this.
We 'get it' though.....so you are among friends here. :grouphug:

Anyway, I just wanted to (((hug))) you.
You've had quite a day.
You can sure use one.

Caring Always
Rae
:hug:

More Hugs
 

Hugs for Sarah after an awful day.:hug: Yeah, I know the eval leaves you wondering, "did I do OK?" You will or should receive a copy through your doctor unless the therapist sends a copy to you. Sure, you admitted to some anxiety, but then, who would not experience anxiety when in the process of seeking major surgery. Everyone feels some.

I am sorry you were not accommodated better during the appointment. Goodness, I was so bold as to lie on the floor for an eval along the way because the psych person had these awful uncomfortable chairs. I laid on the floor after taking one look at the chair. His opinion included a reference to the horrid pain I was experiencing.

Here is hoping that all will be well.
Prayers,
Mark56 PJ :)

Thanks, Rae and Mark. :hug::hug::grouphug:

I truly hope that that one little comment doesn't stop this from happening.. if it does, I will be very upset.

I'm hoping it's not a huge deal. It sure feels like it is, though.. right now at least.

I hate that I have to wait until October 6th now to hear... waiting is no fun for anyone.

I feel like I was able to be so positive--and not because I was lying, but because I do not struggle with depression and anxiety (except with those shots, of course) and I am hopeful and positive. He didn't seem to think I was in any pain because I didn't bring my wheelchair in. Well, if I would have, I wouldn't have been able to use it anyway! I figured it was not worth my mom having to haul it out of the trunk (she is feeling awful today) for just a few steps inside. I knew I could sit down (and thought I would be able to elevate my legs... but obviously that didn't go as planned). I only went up and down the steps because I didn't have a choice--his office is downstairs. He made a comment as I was leaving about how well I was getting around.

Yes, I am more mobile than I was earlier this summer. Is that because I am in any less pain? Heck no. It's because I have been forced to get up and do things on my own because my mom is at work all day and I have nobody here to help me. I have no choice but to "be mobile" and "move around" when needed. Just because I'm not paralyzed doesn't mean I'm not in pain! People can be in pain and yet run a marathon--I've had friends who have done that! I certainly couldn't... but I digress.

Overall he was nice, and understood most of what I said... he was one of the few who knew what I meant when I said I have numbness yet incredible pain and that doesn't make sense because I always thought numbness=no sensation, even pain. I don't mean to make him out to be a bad guy... he was really kind. But it is frustrating when at the end of all that, the only thing he could recite back to me is that I have anxiety about a shot in my back. So what? It was just a frustrating day.. and I sure hope that this doesn't end the process, but I just have a bad feeling that it may.

Thanks for the hugs, love, support, understanding, and caring. You guys truly are wonderful. I am so thankful that God has put each of you in my life! <3 :hug::grouphug:

Sending more hugs to you!
 

Sarah, I just now got online I am so sorry to hear that. I am a bit confused though because my psych eval consisted of answering a big test (MMPI) and that is all I did. The psych did ask me about my expectations and all that and I even told him I am on antidepressants and have anxiety...but I still was able to get it so I am thinking what you said won't be a huge issue because all of us or at least most of do get depressed and/or anxious because of being in pain. And if your answer does cause you not to get it you can talk to your pain doctor and see if there are other options. And also it is perfectly normal to be nervous about the whole stim process. For me, the trial was not a big deal, I mean I don't remember really anything about it except when the cat pulled my wires out when I was asleep ;) And also the shots were bad for me and caused things to be much worse although it does help some people, and my doctor even numbs/sedates you for the shots. I understand your frustrations and concerns and the only thing I can do right now is send you lots of hugs, prayers, and tell you that I am here for you! Take care of yourself and let me know if there is anything I can do for you! Love, Tara :hug::circlelove::circlelove::grouphug: :smileypray:

Sarah

Im so sorry to read that you are so upset and frustrated with your evaluation.
Im sure that the Dr didnt mean to upset you at all. I too like Tara did an evaluation where I was asked a selection of questions relating you myself, my family, my daily life, my home life, my marriage, my social life. Some of the questions were repeated in different instances. This was how she got a broad insight as to how I am. There were times when I did share some information that I though 'oops' wonder will that go against me, but then it was the truth and needed to be said. There is no point in holding back because you need to tell them everything about yourself, even if you did feel, oh heck wish I hadnt said that, because then you know that you have been true to yourself and not hiding anything. That way a full evaluation can be made.

My psych explained to me that when clients arrive for this 'test' they feel as if they are being tried for something that 'might not be there'. This isnt the case. The referring Dr would have sent you for evaluation because your Dr KNOWS that you are in chronic pain and need to go that step further. They will know that you need something 'extra' now to manage the pain. Be it a pain pump or SCS or whatever. The psych also knows that the reason you are coming is because you are in chronic pain. Dont think they dont know your full background because they will and your Dr would have informed them before you went to meet them.
I was also told by my psych that the reason for these 'tests' prior to your implantation is that they want a full insight into how you are, how you think, how you feel etc. They arent there to catch you out whatsoever. If there are any underlying 'problems' that need to be address before you can proceed with the SCS. For example, she told me about a lady who came to her, who was in chronic pain for years. She was being referred as she was hoping to have the SCS implanted. But on evaluation the psych found that she had some domestic problems. That this lady felt that if she didnt have chronic pain and got the SCS and it helped her, that the domestic problems , which are a result of her not being able to cope in her family life, would basically disappear. So she was banking on the SCS 'fixing' her domestic problem. But the psych said, before they would consider her for the SCS she would have to get help with her domestic problems and not to be depending on the SCS to do so. So here is an example of a lady with 'underlying problems'. She did have many examples for me but Im sure you get the gist of it. They are there for your own good.
When I was finish my psych told me there and then what the report would say, that I was ok to proceed. Im sorry that your psych didnt do the same for you. Im wondering if you could perhaps ring them and ask them what will they be saying to your Dr. Afterall, they would have made their mind up as soon as they spoke with you and finished the evaluation. October is a few weeks away and its no joke waiting and waiting and waiting to find out. Think about ringing.

I hope you feel a bit better today and try to be positive. Im sure we will all be congratulating you too in the coming weeks

Jackie :)

GUESS WHAT????? I WAS JUST ACCEPTED FOR SSI/DISABILITY AND I WILL BE GETTING MEDICAID (and my money!) within a month or so!!!!!! I am THRILLED.. this is a HUGE weight off my shoulders... with no income and being bedridden... and my mom is a single mom with so much debt that she is in the process of filing bankruptcy... I am SO RELIEVED!!!!!! Just wanted to share my news with you all, even though this has nothing to do with a SCS. Except, of course, that all medical is covered so I no longer have to worry about the huge cost of all of this! :D:):D:)

Well HOWDY DOO!!
 

What a WONDERFUL piece of news this is!
I'm so happy for you and your mom! You both are so very close.
Fine example of how God is 'looking out for you'......yes?

And Jackie.... :hug::hug: WOW! What a wonderful post!
VERY informative and with a twist of your genuine love and concern. You are so wonderful!
We should put that post on the "Psyche Eval" thread that has drifted down the line........ it's a 'keeper' fer shure.....

Isn't it amazing, Sarah, how one day can be such a 'downer'.....and then the next day can make all the difference in the world!
What's that scripture.....something to do with 'weeping cometh before joy'.....

Thanks for sharing the great news!
:hug:

What wonderful news
 

For you, Sarah, and for your Mom, this represents a burden lifted. May you see good things begin to shower around you in times to come, and may your eval come back with a positive to proceed with the trial. It is really the trial that is the tell all of the diagnostic conundrum leading up to the potential for permanent implant. The eval is, as Jackie so aptly framed it, a diagnostic means to help determine those who may have other issues which should first be sorted out or those with unrealistic expectations.

ASAP,
Mark56 PJ :)

Yes, Rae! It is a huge blessing from God!

As soon as my mom and I were done talking to the lady who called us, I thanked Him over and over and over again... He always provides and I know it was His doing... to connect us with this lady--otherwise I would have been denied because that doctor had already written a report and was going to deny me.. and because she got a second opinion, I don't have to worry about going through an appeal and getting a lawyer (which I don't have the money for anyway!).

And all in THREE months.. even that felt like forever, since I'm living on NO income.. but I know it can take much, much longer.. so I am grateful.

And today in the mail I got my records from my pain management doctor--the last two visits.

I think I know why the guy yesterday focused so much on this anxiety thing--my pain management doctor had it in my notes that I struggle with anxiety!!!!

I have no idea what gave him that impression (unless it was just the shots--because I did tell him about that, too).

Overall, that is NOT the case. I have one fear about this whole process.. and that does not equate having anxiety issues, in my opinion.

So when I see him on October 6th, I'm going to ask him (nicely) what led him to that conclusion and try to straighten it out and see if it can be removed from my file (if it isn't just about the shots)...

I struggled a lot with depression and anxiety in high school, but half of it was circumstantial and the other half is things that God has healed me of and I no longer struggle... so I know what anxiety is like and I do not have it right now.

And it's not at all that I'm afraid of someone thinking I struggle with it... I don't care (too much) what most people think of me. I care what those who matter to me think... but mostly I care what God thinks and what I think... BUT.. I don't want that in my permanent record if he can't give me a good reason for writing it, just because it can affect the way other doctors see me and what treatments I can get. And that, is not cool--if it's not the truth. SO I will talk to him and see why he says that and work that out with him.

But I am still on cloud 9 from that phone call--this is such wonderful news.

I was JUST trying to decide what to do with my cell phone. I have to pay my bill within a week, and that's the end of my money in savings and my checking account... so I was thinking I'd have to get rid of my phone... which would be fine except the fee to terminate a contract is a couple hundred dollars, which I don't have... so I was really struggling with how to handle this... and boom! Here comes God, providing in the way I certainly wasn't expecting! :)

So COOL
 

Sarah- it is so cool to see with you that God sighting in your life! Now, you might want to hop over to Burntmarshmallow's [aka Tina] thread http://neurotalk.psychcentral.com/thread42577.html and post about you saw God today and how God looked for you! Such thanksgiving goes a long way toward helping others, and that is a place to do it!

Thank God you are receiving affirmation in your life,
ASAP [got that from Calewark aka Cheryl], always say a prayer,
Mark56 PJ :)

That's Great news!
 

Yay Sarah! I am so glad that you were able to get this and were able to get the help you needed! I wasn't on fb or here til late last night and I was wiped out by the time we got home...I will send you a message soon though! Anyway, I am so glad that thing are working out for you and sometimes when there is so much going on that is bad it is so monumental when something good happens and of course it is definitely God that brings us through!
I am sorry about your doctors saying that you have anxiety. And I understand why you are upset about it but I guess I am wondering why is it so wrong to have anxiety or have it in your chart? I have read my doctor's reports throughout my life, and have seen some unflattering things even straight out lies and now my new rule is to only look over the stuff from the records that I need because I can make myself really upset if I do read everything ever written. I am not saying you have anxiety I just was wondering why is having anxiety such a bad thing? I hope you don't get mad at me asking that I was just wondering. I do agree with Jackie that you should talk it over with your doctor about his reasoning's behind writing that in your chart. I will keep praying for you that things keep working out and that the process keeps moving along, I have a lot of faith that things are just going to keep getting better! Take care and we will talk later! Love you:hug:!

Tara,
Absolutely not. There's nothing wrong with having anxiety, and I believe I said that somewhere, though it may not have been in this post. I can't remember.

I struggled with depression and anxiety back in high school--majorly. It was mostly situational/circumstantial, not something that I will struggle with for life like a lot of people.

It's just that I don't want ANYTHING in a permanent record that isn't true. I don't want them saying I have anxiety, or cancer, or a job... anything that isn't correct should not be a part of my records, and I think he should have discussed it with me and asked me if I struggle with anxiety before "diagnosing me" on paper and not even telling me about it. I think it is just because of my fear of the shots, but one fear does not equal anxiety and panic attacks. (Yes, he stated I had panic attacks--I don't.)

I don't want this in my record just as I wouldn't want another mistake, even if it seems minor. If some doctor took me saying "I am helping to start a ministry at my church to reach out to those with disabilities or illnesses" and said "Has a job working with the church/those with disabilities", I would not be okay with that as well.

If a doctor thinks that I struggle with anxiety, that will reflect on the types of care that I can/cannot recieve and how they view the whole situation. It's not that I dislike or don't want to be associated with only anxiety. I think it's perfectly normal with people with a lot of medical problems to struggle with depression and/or anxiety. But, because I do not, I don't want them stating that I do... especially without asking me first.

Yes, I could be "in denial" and then I can see where they would put it in my records anyway--I realize that doctor's aren't required to get permission for the things they write about us.

I just think it's a courtesy issue... he is not a psychologist and isn't properly trained to diagnose those things, so to put that label on a permanent record can affect things in the future.

I will be talking to him about it, and telling him (politely) that I am upset about all of this. The man who did the psych evaluation made it sound as if I will not be able to move forward with the SCS process simply because I have "untreated anxiety" and that to move forward, I would need to undergo treatment or be on medicine.

Since I don't struggle with anxiety daily, but rather just have a few fears like everyone else does (heights, shots in my back, etc), I refuse to be treated and given medicine for something that I don't have! That is ridiculous. And everyone keeps saying "It's not the end of the world--a lot of doctors write things that we don't like." Yes.. but there is a big difference in my mind between writing something that we don't like (taking the truth and making it sound negative instead of positive, or writing things in our records that we wish we hadn't told them) and making up a diagnosis on the spot that is absolutely incorrect. It's frustrating that people don't seem to understand why this upsets me... they all seem to think that I look down on people who have anxiety and that I just don't want to be associated with the term because I think those people are weak... and that is not at all the case.

Okay....I get what you are saying
 

Okay, Sarah I understand why it is upsetting you and this is my understanding...that you are mad because he put that you have anxiety in your file even though you do not and he also is not qualified to make that decision. Is that what you are trying to say? And you also do not want anything untrue in your records, especially like this because it might change or have an affect on your course of treatment. If I am wrong on this then tell me but this is how I understood your last statement. I agree that it is wrong when they put lies in your records and I also understand that you are not trying to say that there is anything wrong with having anxiety, you just simply do not have it. I guess the only way for you to clear the whole thing up and help your peace of mind is just to talk to them about it and see why they put that in your records and also see how it affects you getting the SCS. I only was trying to say that if you did have it (which I know you don't and have said that you did in high school and it was circumstantial) that it would be okay;). I was mainly saying simply that it is okay for people to have anxiety and depression when they are living in chronic pain and/or illness. I went through a long time beating myself up over that and I think other people can still be ashamed of that too so I just wanted to make sure that I said it was okay for anyone reading it to be having chronic pain/illness and depression, anxiety, even panic attacks (which I do have all 3). Hope all this makes sense, if not then let me know. I do hear your frustration and I hope that you can get it worked out with the doctor. I am also sorry that they lied in your records. Love you and take care! BIG:hug:'sTara.

Tara,

That is exactly what I was saying.. thank you for understanding!

I have had depression, anxiety, and panic attacks in the past... but that was, as I said, circumstantial and was 10 years ago. It is no longer an issue and all the records that were sent to my pain management doctor from my family doctor do not include a diagnosis of anxiety--so I just don't understand where he got it from and why he would put something so final in there without knowing for sure if it was true. It is one thing to say that someone seemed anxious during the appointment, but to state that they have an anxiety problem (ongoing) and panic attacks is not okay--it is a lie.

I do plan to talk to him and ask why he wrote that and if it can be removed, or at least if he can state in the records that it is not true at this point. We'll see what he says--he may not go for it, but if so, I may change doctors. He is an awesome doctor and it seems like such a trivial thing to get upset over in the scheme of things if he is providing great care--but I don't want doctors who add things to my file that are not true. So, I want to see if it was a mistake or not.

I was not at all saying that it is bad or wrong to have anxiety--I think it is "normal" for most people to struggle with those things when dealing with chronic medical problems. I just, for some reason, have been blessed not to--and I don't want to be incorrectly diagnosed because it will affect certain things in the future. That's all.

The whole thing with the psych eval makes a LOT more sense now... of course he would think I have an anxiety issue--my doctor's records that were sent to this guy stated I did and was having panic attacks! Grr... I haven't had a panic attack since high school.. 8-10 (closer to 10) years ago.

Editing the File
 

Hi Sarah- Editing it out of the file might be a biggie for your doc, but placing a clarifying note reflecting that it was a historical comment so perspective is gained by any other reader may be a mid point for you both that you can reach. I can't say I have appreciated every last word that was written, such as one doc who declined to treat me referring to my profession in his letter to the file.... it was wholly irrelevant but a part of the file nevertheless.

Oh well.... I hope you and your doc can reach a point where you feel at peace about this.

Prayers,
Mark56:hug:

I feel really bad for doing this once again, but I am just going to copy what is written in my CaringBridge so you can see the update (and so I can read this thread from start to finish someday when it's all said and done). I planned to write something for my CaringBridge and then come and write something else here... but I am exhausted and having the worst pain attack that I've had in a long time. I just need to go to bed. So here's some of what I wrote in my CaringBridge journal--I took out the parts about other aspects of my day/life.. so if you want to read more, the link is in my signature.. otherwise, this is what I wrote relating to this thread.

"So, my big news!!!

My mom came home at noon and helped me shower, she changed my bedding, made me lunch, and then went to lay down until it was time for her to go back to work. She was tired and not feeling well. However, not long after she laid down, my cell phone rang. It was a Sioux Falls number... I hesitate to answer calls from there, since most of the places that are coming after me for money (medical places) are from that town. However, I answered it in hopes that it wouldn't be about money.

Sure enough, it wasn't! :)

It was a lady calling about the "trial surgery" (which is what she called it, but technically its more of a procedure before the surgery). She said that my pain management doctor approved me going ahead with the spinal cord stimulator (SCS) process. This was a big surprise to me. I was so sure that the misunderstanding in my medical records and the psych evaluation (where the doctor said I had anxiety and panic attacks and I do not.. so the guy who did the psych eval had a biased view of me from incorrect records), that I would not be approved. I actually haven't been back to my doctor yet--it is next week. So, I was pretty surprised when she told me that I was approved. I hurried up and walked to my mom's room so I could have her help me write things down. The lady said that my trial surgery (which is not really a full surgery, more like a procedure--but that's what she is calling it) will be October 26th. I have to meet with the anesthesiologist who will do the trial surgery at 11 am. Then, I will have the surgery/procedure in the early afternoon. I have to be there to register at 1:30, but I don't know how long that takes and when the actual thing will get started.

Most of what I've read online says that the trial is usually for 5-7 days. Mine, however, only seems to be 3 days--they scheduled me for a follow up on October 29th. I talked with my friend Tara (who has a SCS) and asked her if she met with the doctor more than once during the trial period. She said no, that when she saw this doctor after the trial, that is when they took the lead wires out. So my understanding is that my trial will only last 3 days and then will be taken out. I'm not absolutely positive about that... but that's how it sounds.

So, this is really happening! Of course, this is just the trial. The next steps will depend on how the trial goes. If it doesn't help enough to make it worth it, it will end at the trial. If the buzzing sensation is something I can't handle (my doctor said that the feeling irritates some people more than the pain they are in does--which I can't imagine), then we won't move forward. Otherwise, it sounds like I will be sent home to heal and then my surgery will be scheduled. I'm still not clear on the time period between the trial and the actual surgery--some say it was a few weeks, some say a few months, and some longer than that. I suppose it depends on a lot of variables and the specific case.

Here's the thing about this trial... I want to be as optimistic as possible and give it a fair chance to work. I'm not planning on going into it saying "this will never work... why even bother... the pain is too bad to be helped"... however... I want to be realistic. I don't want it to only help a little, therefore making it not worth the surgery... but yet convince myself that it is worth it. It sounds like I'm already claiming it won't work, but that's not it at all.

I just want real results. If it works, terrific--let's move forward! But if not, I don't want anything (with other people or within myself) to give me false hope and make me think it's working if it doesn't. Does that many any sense?

The surgery, especially with paddles, is a pretty serious surgery. Most have said that while recovery was painful, it was not worse than any other surgery. However, it is also true that while surgery can lead to death regardless of the type of surgery, the spinal cord is a really scary place to mess around with.. at least that's what I've read a lot. I'm not a doctor and don't have a degree.. but I've read that if something gets messed up or the spinal cord fluid leaks, that's really bad. There are probably hundreds of people having this surgery every week... and I'm guessing that the large majority of them come out just fine. I just don't want to go through it all if it isn't going to help. If it is, though, it will SO be worth it.

I just hope that it does help... and that I can have the surgery and then have the permanent one work, too. That would be the ideal situation. I just don't want it to go the other way around... it helps and then I have the implant, and then it doesn't work or something goes very wrong.

I'm not sure that I explained that very well... but I hope people don't misunderstand me. I'm just in a TON of pain tonight... this is the worst pain I've had in a while...

I still want the trial to go well and still want to pursue the implant. Period. :)"

Hey surgery buddy!
 

Hi Sarah, I cannot believe it is 3 am and I am still up :( I hate not being able to sleep! Anyway, I really enjoyed our talk tonight and I am so happy that you get to have the trial done! I know that you are going through a roller coaster of emotions right now about it, but just try to relax (easier said than done) and like you told me whatever happens is for a reason ;) My hope and prayer is that it does for you, what it did for me so that is what I am praying for right now :) I am sure our other friends on here can also share their trial experiences with you too and give you more insight. Well, I need to get some sleep so take care and we will talk soon! Love you:hug:

Hi Sarah:)

So glad to hear that you have a date for you trial with the SCS. When I had my trial done I only had it in for 3 days also. And I kinda knew straight away that it would help me somewhat. I had 3 programmes for those days and each had a different setting. I would however just say to you that the SCS is not guaranteed to completely cure your pain. Its a means to managing your pain. Some people do feel it helps 100% other lower percentage. It really depends on you. Im not trying to put you off but just to say to you yes have high expectations and go with the flow. I have good relief in my legs where Ive had burning and stabbing pains down my legs, but as Ive written on other threads I dont find it very beneficial for the heaviness and achy feeling in my lumbar area. Again when I have to cover that area I have to turn it high which in turn is uncomfortable. Im guessing thats what your doctor was explaining. But thats not to say that its not working elsewhere. Go in with a positive attititude, I did......and see if it does help you. Im hoping and praying it will and that you too will get some, if not all, relief from your pain. My doctor did say to me, Jackie I cant cure your failed back but with this technology I can help you manage some of the pain...so thats all you can ask really.
Good luck with the trial Sarah and keep us updated

Jackie :)

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:

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
 

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

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.