[Patti_Christmas]

Well, I believe that I have experienced a crappy, crappy permanent stim placement, and for the first time since Sept I have a functional, clearer head!

I met with the counselor/shrink at the Pain Management Clinic today and completely unloaded. I even told her that this forum is by far more informative and supportive then the doctors, nurses or my Medtronics Reps (3 of them so far).

She was in complete shock when I told her how things were going, how the Sept surgery was a total failure, the doc put the stim under a stretch mark and it rotated and was sticking out (how the rep couldn't communicate with it and a different doctor in the clinic said I needed the 2nd surgery), and how I feel like a "number" for the device's company.

We also discussed how the latest cortisone injections aren't working, and how I was surprised to find out yesterday from the nurse that the doctor gave me a "bonus injection" (a slower acting cortisone). We talked about how no one has answers as to what is going on, what has gone on over the weekend, how my arms now feel heavy, how I had an "episode" this morning of queasiness, sweating, clamminess, dizziness and all the color in my face was drained. We talked about the fact that I couldn't even manage to get my hands to my mouth to feed myself this morning (hubby had to feed me, arms weren't working, very heavy feeling and I thought I was going to pass out. We thought it might have been because I needed to eat. This was at 8:00am). She told me at my appointment tomorrow (for re-programming) to get the answers to my questions, to insist on having the doctor SIT and talk to me, to not allow him to just rush out of the room and to NOT ALLOW any more injections. We also discussed the stim, the side effects, the chest wall sensations and she advised me to ask them about leaving it off for awhile to see if things settle down. Give my body more time.

I am in terrible pain right now, but I have my brain!!! I hope tomorrow's appointment leaves with answers or some idea as to what is going on and what to expect!

[daniella]

I hope today your apt goes well. It sounds like you talked about a lot in therapy. I encourage you today to have things written down you want to talk to the doc about. In the moment when the doc is making you feel rushed which many do sometimes it is hard to remember all you want to say. This is your health and you deserve time.

[Cricket183]

Patti,
I am so sorry for all you have been through. I am glad you were able to get it all out and talk with the counselor. Just a thought about the episode you had yesterday morning...the queasiness, sweating, clamminess, dizziness, and all the color draining from your face...they can all be side effects of the steroid (cortisone) injections. You didn't mention how long ago the injections were but if they were fairly recent it might have been related to that. Just a thought. I also have a lot of heaviness in my arms (RSD is in both) but never to the extent that I couldn't move them. I do have to have help with anything that requires me lifting my hands overhead (washing my hair, etc.) I hope your apt goes well and you get all of your questions answered completely.
Cricket

[Patti_Christmas]

Originally Posted by Cricket183

Patti,
I am so sorry for all you have been through. I am glad you were able to get it all out and talk with the counselor. Just a thought about the episode you had yesterday morning...the queasiness, sweating, clamminess, dizziness, and all the color draining from your face...they can all be side effects of the steroid (cortisone) injections. You didn't mention how long ago the injections were but if they were fairly recent it might have been related to that. Just a thought. I also have a lot of heaviness in my arms (RSD is in both) but never to the extent that I couldn't move them. I do have to have help with anything that requires me lifting my hands overhead (washing my hair, etc.) I hope your apt goes well and you get all of your questions answered completely.
Cricket

I had the epidural on Wednesday of last week. I'm really thinking that this is what caused yesterday's problems. I will be speaking with them and demanding some answers. Thank you everyone for your support and advise!

[RNcrps2]

Patti, You go girl!! Happy to hear you vented and let one of the professionals know how you were feeling. It's such a terrible feeling to put your faith in people and they arent really listening. It sounds like you stopped them and let them know you are a person and you want answers and control! Good for you. It took me a long time to finally say enough and to see who was really there to help me and not just push a treatment. Hope all goes your way and less pain. momof4

[Rrae]

Originally Posted by Patti_Christmas

I had the epidural on Wednesday of last week. I'm really thinking that this is what caused yesterday's problems. I will be speaking with them and demanding some answers. Thank you everyone for your support and advise!

Yes! Patti! DEMAND answers!
I hope your husband will be with you at your appt? When I have mine with me, I seem to be treated with a bit more 'respect'.....not sure why..maybe his 'silver/grey' hair has some sort of intimidating factors!

I admire your strength and determination!

Anxious to hear how it goes...... give a holler at the SCS forum as well! could sure use a 'boost' over there......many of us are having 'issues' arising with our SCS's.......seems the 'honeymoon period' is over for some of us........

Caring
Rae

[Patti_Christmas]

Originally Posted by Rrae

Yes! Patti! DEMAND answers!
I hope your husband will be with you at your appt? When I have mine with me, I seem to be treated with a bit more 'respect'.....not sure why..maybe his 'silver/grey' hair has some sort of intimidating factors!

I admire your strength and determination!

Anxious to hear how it goes...... give a holler at the SCS forum as well! could sure use a 'boost' over there......many of us are having 'issues' arising with our SCS's.......seems the 'honeymoon period' is over for some of us........

Caring
Rae

Thank you all and thank you for this site!!!! My husband goes with me everywhere, as I can no longer drive. I can barely sit in the car! It's not an uncomfortable vehicle either - it's a Caravan with heated seats.

I feel so clear in my head with the stim off. Could the stim be too much right now and my nerves all need to settle? Makes sense to me, so I will get my answers today!

I really love and appreciate this site! I plan on spreading the word to as many patients that I see in the waiting rooms about this forum! Here we get answers, support and compassion! The doctors "treat us" and then forgot about us until our next appointment - NO MORE!

[Jimking]

Go get'em Patty. I hope you get some good news friday and the pain simmers down. Good luck your way!