gemtle hugzz

Hi all my new friends, I am having such a hard time right now! I feel like whatever is going on with me be it stim or whatever is getting worse. I am now pretty much in constant pain and since my old doctor was not giving me anything besides neurontin and injections that made things worse I am doing very bad! I am also having more trouble recharging (its like my battery cannot find my implant) it takes so much time and then half the time it still won't work! My implant is actually in my lower back, she had to fix it during the revision because it was sticking out from under my skin and became really painful. But after the revision my charging was fine and I could do it really easy with the belt or the sticky things and I think it got harder to charge after my fall. It makes me cry from frustration and my old doctor the stim doctor laughed at me when I told her. And of course my stim rep still cannot reprogram me so even when I get the stim to work if I turn it up high enough to even give me a little relief it jumps in my stomach or middle and causes too much pressure! And within the last few days I am feeling pain around where my battery is inside and usually I do not even notice it is in there but now there is burning pain around that area too! I had my CT scan on friday and they originally were only going to scan my back and right leg but they also included where my leads are (thank goodness) because I told the tech I was having problems with my stim! I think I am going to try to call that new pain doctor office tomorrow (even though I am scared to) and see if I could get in quicker because I am truly suffering and I cry a lot because that is about all I can do right now! Thanks for listening I will be back when I get an appointment lined up or hear any results. I am feeling really REALLY down right now

Oh Tara- I am crying for you. How things go from bad to worse. If only the CT will reveal to your new doc the information necessary to receive TRULY BENEFICIAL help.

I'll pray more,
Mark56

Praying for you Tara....

Don't be afraid to reach out for help - those Dr's are there to treat pain....
If it gets too unbearable, Tara, consider going to the ER.
No one should be in the condition you are in right now.....
I'm so sorry

Rae

Rrae and Mark56 and pooh_ac and kzlrogue! Thank you so much for your caring thoughts and replies! I really appreciate the prayers as well. So, I called the pain doctor to get my appointment and I found out that I cannot have an appt until my stim doctor (the current pain dr) has sent a referral over! And of course no one had done that even though it was supposed to happen a couple months ago so I was quite upset but I did do something productive. I called her office myself and told them that I needed this referral ASAP because I am so bad and cannot walk and school has started but I am in so much I cannot sit still at the computer! She said that she would fax it over today or first thing tomorrow! So, I have learned that I cannot rely on doctors and offices to send over my paperwork I have to check in very often (even if I feel like a bother) in order to make sure my health gets taken care of! This is very important and it also makes me feel more in control even though everything going wrong in my body makes me feel so out of control! I am also going to finally see that female doctor in a few days and get that situation taken care of too. I am tired of feeling helpless and at the mercy of everyone in charge of my healthcare and treatment! At least I am a step closer to getting the new pain doc appt! I will let you all know what happens when I get anymore news! Take care and have a good week! Tara

So sorry to hear that things are dragging on so much. I understand where you are coming from... I've had many doctors over the years (these SCS implants are just the latest in a long line of health problems I have had to deal with since I was a child), and have "fired" many of them. Now I'm at the point where I go in, meet the dr. and assess whether I will take THEM on as one of my dr.'s or if I'm going to move on to find another doctor. I don't suffer fools gladly, anymore.

I have found that you often have to really stay on top of the doctor (that doesn't sound good ...you know what I mean). At the first meeting I try to get chummy with the nurse and get her name and ask her if I may call her if I have any questions about my care, meds., referrals etc. Then I specifically call her and work with her to make sure things get done in a timely manner.

Also I make sure to get copies of everything...bloodwork, surgery notes, office notes, etc. and keep them in my records at home. Many times I've gone in to see a dr. that I've been referred to, and the only thing he/she has in their hand is my referral from my dr. and that's all. So they are thrilled (well, usually thrilled as my chart is so thick) when I have all this past info. to give them.

Sorry to go on so, but you struck a sore nerve here when you mentioned your dr. not sending your referral and you feeling like you have to chase after them to do it. Having copies from other doctors helps relay and confirm what you say your difficulties are, and when they see other doctors mentioning having treated you for that problem it goes a long way in validating your needing help.

I don't know if it's incompetence on the part of doctors or the fact that a lot of doctors and their staff are overloaded with patients and paperwork. I do know that my having copies of my records from all my doctors has made a huge difference when I go in to see a new doctor or even a current doctor. They can get patients confused and it's easy to pull out a copy of past bloodwork, an office note that another doctor may have made, or a past surgery transcription. I do whatever I can to make the office visit as smooth and worthwhile as possible. Again, sorry to ramble on Hopefully one or two things are helpful to you. Please know that you are in my prayers and thoughts.

Fiona said it all! (with the extra benefit of 'staying on top of your Dr' )

Couldn't have said it better myself!
VERY wisdom-filled girl!!

Hi Tara

Im a newbie here in the past week, I too have a SCS implant in the past 3 weeks , so early days for me.

I been reading your posts and boy have you had so much to deal with in your short life. I hope that you get to see your new Pain Dr ASAP. Its soooo frustating when you find out that ,hey my old DR should have sent on a referral and then they didnt!! that makes me soooo mad And you know at times you do have to DO IT YOURSELF and annoy them so much that they will be sick of your calls and requests and they will get the job done

Good luck with your new Dr and I pray that you will have relief very soon too..

Jackie

I am back again (sorry) because I ended up in another argument with another doctor office because they did not have my records. The lady was extremely rude and told me that if I did not have my records in 24 hours (appt was supposed to be tomorrow) I could not have my appointment! I told her that this appt was important and I wanted to even see if I wanted to continue treatment with this new doctor and just at least talk with her about options and stuff. She then told me this was not a meet and greet and that I would not be able to talk to the doctor at all without those records! I have never been treated like this and I even explained to her that I had given my release to everyone else and that they were supposed to fax it over. I then took a breath and said I would call her back. I decided that I was over this whole thing where receptionists and doctors are allowed to treat me bad and I called her office back and basically told her that I did not appreciate being talked to that way and that I was going to find another doctor, this was the first time I have ever had to do anything like this regarding a receptionist or doctor. I was so angry I was shaking! I am so sick of all of my doctors or front desk people not following through on anything because meanwhile I get worse and feel worse. And it makes things worse when the front desk people or doctors treat you like you are bothering them and you should not even be there! ARGHHHHH!!!! I have to call tomorrow to find out if my new pain doctor even got a referral and if not (again) I am going to have to talk to that other office again I wish they would get it together! I mean, I am having a rough time as it is dealing with constant pain, my stim not charging right, hardly sleeping, and still trying to function and do my schoolwork! This whole episode is why I get nervous to see or talk to new doctors in the first place Just thought I would share that I had to get this out. It just gets me that people in healthcare (who are supposed to want to help us) get to treat us like dirt, I treated people better than I get treated (at the doctor) back when I was in sales and working! I guess I just expect to much from them or people that are supposed to help me. Oh well, I guess I have to get used to firing doctors