Hi everyone, I just wanted to post an update. I have not been around in a few days because my husband and I went on a little get away to brown county in Nashville Indiana. Since we weren't able to do our original honeymoon trip we came up with this alternative one which was very good for us! It was a nice time and great to be away from the city even though we only live an hour away lol. It was sad though because I was in so much pain I did not get to walk around and explore and go to the shops. We did bring my wheelchair but none of the stores were accessible and I tried just using my walker and that was way too painful Luckily, we had a nice room with a hot tub which I spent most of my time in! We just got back and he is going to take me to a romantic dinner tonight so that will be fun.

We also talked to my stim rep and my doctor and she is sending me to some one else because according to her she has done all she can do with me. But my stim guy said he would still be with me which makes me very happy! I guess this is the best thing because she has not been very helpful lately and just makes me more upset and does not seem to care that I am in pain even though she was the one that put the stim in me. I am going to try to be optimistic that this new pain doctor will be able to help me and if this one is not good I will find someone else because I should not have to suffer like this especially after going through all these surgeries! But that is life I guess and I am trying to come to terms with the fact I will probably never have the life I used to have and I may not ever have my stim working as good as it used too either. I have a CT scan tomorrow because my new neuro wanted me to have it after my EMG but he thinks that it won't show anything either so we will see.

I probably won't be around too much because we start school on Monday and I have other doctor/conditions I have to deal with and hopefully get help with. I also am having a very VERY ROUGH time in dealing with all this and am very frustrated, angry, sad, and depressed that my stim has let me down after it was such a great help And when I get like this I am not much help to anyone so I tend to keep to myself. Also, I ended up not being able to take some of my courses I wanted because I just cannot physically do the on campus classes right now and to make things easier on myself I am doing classes online (although classes online are not easy I just meant easy in a physical way). I am hoping to get an appt with this new pain doctor very soon because I am having so much trouble walking due to my stim not working right. It is really hard for me to do much of anything right now because of all this pain but I am still trying to hang in there and to focus on my goals (graduating in May and keeping my grades high so that I can get into teaching program!). I will definitely post back on here after I get that new doctor or if I get any test results.

I just wanted to let you all know this and just because I won't be able to be very active in posting I still read responses and postings and will be keeping you all in my thoughts and prayers! Good luck to all the new stim recipients, I hope that you find the pain relief you need and are able to have better lives I also hope that the whole group of stim users that I have come to know and lean on and learn from are doing great too! You are all amazing and very strong and have helped me so much and made me feel like I am no longer alone Take care!

Tara

Tara, our dear friend-

You are the bravest of the brave. You have forged paths not trod before by we who follow. You know the trauma of a fall, and maybe other traumas, which coalesce into causation for your stim disruption.

Your rep feels as though the leads have moved, then that is a major victory. Going to another doc because the current one did not feel competent to help furher is a definite step into a new and brighter direction. Perhaps new eyes and better hands will notice your needs much more quickly. Aided by your longstanding rep relationship, your new doc should be poised to right the wrong done you in the fall.

I have my doubts about percutaneous leads and the movement risks you and others have pointed out, feeling so blessed myself that my docs, collectively, knowing I am an active athlete wanna return to be, opted for paddles. Already I feel secure in the direction of my healing.

The prayers I utter for you are in the direction of hope, peace, healing, comfort, resolution of your stim and pain profile picture. You and your husband need this and it is my hope and prayer.

Prayin,
Mark56 PJ z

Tara -- I hope in that you going through all this process, you will soon find that silver lining. And hopefully, it will be in the form that the repaired/replaced stim works just as well or BETTER than the previous one. I'll be keeping my fingers crossed for you

Thanks for the update. It sounds like you're on the right road. And don't worry about being upset about not getting back the life you used to have. Totally normal, and I'm sure all of us hurting people fantasize about what our lives would/should be like had we not been burdened with this beast. But, I can tell you this...... through this process, I've learned a heck of a lot more about people and life than I could have in my healthy body. Now, I just hope that this earthbound wisdom grants me some major brownie points when it comes to the afterlife........

God Bless and Good Luck!! Vanna

Tara,

As Mark said, you are the bravest of brave!!! You have experienced things that no one should have to experience; however, you have also accomplished so many things during your struggles that it is truly AMAZING!!! YOU ARE AMAZING!! I seriously don't know too many people who have gone through all that you have yet at the same time achieved so much!

I truly believe that you are well on your way to finding your answers.....you have a new pain doc, a new husband who loves you unconditionally, and this group of crazy bionic butt buzzers that will support you every step of the way. With those odds, you can't lose!!

Take care and my prayers are with you!!

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.