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!

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

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!

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, 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'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.

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

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. "

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

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