[christine1003]

i had a neuostimulator installed 11 days ago and my first follow up is sept 2nd which does not seem right to me considering te fact that they had a difficult time getting the leads in place because my spine is bad now correct me if i am wrong but the lead sits right on my spinal cord in my neck and my pouch is on my right side with a combined 20 stitches and 20 staples with no aftercare instructions except not to shower for 2 weeks, i am still in terrible pain and cant lift anything heavier than a cup of coffee, i do have my mom and boyfriend check my incisions, my boyfriend john cleaned all around the wound for me and it is a little red but they say the cuts loook good, it just seems like it is too long to go before a follow should be done especially a spine surgery 3 weeks? my pm said he cant touch it and the surgeon only sees patients on wednesdays so what am i supposed to do???? i wish i had this done in boston where the medical care is not so primative

any suggestions?????

christine

[Bussey]

Hello Christine,

I'm sorry that you are still dealing with so much pain, but since your surgery is still fairly new, I guess that isn't unusual. However, what is unusual, is that you were discharged without any instructions! What are you taking for the pain, at this time? I'm not sure about the lead being placed directly on your spinal cord, but since your RSD is in your arm, it sounds like the placement in the neck area, is correct.

If your surgeon is only in the office on Wednesdays, he's probably in a different office on the other days. Have you called your doctor's office, since your surgery was done? There should be, at least, a contact person in the office, just in case a patient experiences an emergency! I do agree with you, that three weeks is quite a long time, for a follow-up appointment, after that type of surgery.

Thankfully, your mother and boyfriend are able to check the incision area, and to help to keep it clean.

I would suggest that you attempt to contact your doctor's office, and speak to another surgeon, if your Dr. cannot be contacted.

I hope that you will be feeling better very soon! Hopefully, you will post an update, after your neurostimulator has been turned on.

Take care.

Bussey

[April63]

Hi Christine ~

Glad to see you had the surgery, and I really hope it works for you. I'm 6weeks out from mine and finally starting to feel a little more normal. I had mine in my lower spine so things are a little different for me. I did see the doc 2 plus weeks after surgery and did not get a whole lot of instructions on day of surgery, but I did ask a lot of questions 4 weeks before. Unfortunately I did get very sick after the surgery and I can't really take narcotics either so I didn't really have any questions for the nurse , but they did call the next day to see how I was doing but my husband took the call while I was sleeping so didn't get to ask anymore questions until post op visit. They did not let me take the coverings off of my surgical site until post opp. and there were a lot of staples taken out on that visit and then he put stary tape over the incisions and then I could finally shower! Let me just say that it is only until now my back is starting to feel much better so recovery does take time. As far as my leg goes, it is much much more tolerable as far as the pain is concern. The first few weeks I could not turn up the stim too much because it hurt my back but now it is getting better.

I guess all I really wanted to say was that you just had a very big surgery and you need to let your body heal however long it takes. Maybe you should just have drinks that you can use a straw for for now. I know Christine that it is an inconvenience, but you need to take it slow. This would be a good time to try new drinks like iced coffee or have your honey make you a smoothie ha ha.

Anyway take care and you are in my prayers.

April

[christine1003]

hey I am so happy to hear from you, i was really worried about you it was like you just disappeared, thank God you are ok!!!! i am having a difficult time, the surgery created more problems they put a blood pressure cuff on my rsd arm and it turned purple (mom said it was real bad) but the stimulator helps with that only when i am sleeping the adjustment of my neck does not allow the stimulator to work i need to call medtroics and make adjustments, my surgical site is excruciating at most, i believe the rsd has spread there my skin is aweful to touch my shirt hurts to rub even 8 inches away from the site and i was supposed to return to work tomorrow but I physically cant i am using my vacation time right now but i am supposed to return next wednesday I am very concerned since I am a restaurant manager and on my feet 10 plus hours a day, I dont know how I can do it and my company is a corp and in the recent 2 years lost the human compassion they used to have. I dont know i guess I just have to take it one day at a time

I am so glad you are better, wasent it aweful not to shower? lol i did bird baths in the tub since i could squat ok and my boyfriend was amazing helping me wash my hair cleaning all the nasty tape residue from both my surgery sites i thank God for him and never thought there were men out there like that still!!!
Thank you for coming back have a wonderful day

christine

[April63]

Christine ~ Yah I know I have been peeking in but I also found a site thru Boston Scientific (the type of stimulator I have) Race against pain I believe is the website. I'm still off work thru WC so I have time to heal properly. I pray that you will heal safely even though you have to go back to work so soon. As for me the pain in my back was bad since I could only take Tylenol or Advil, but each day it did get a little better (I can't say the same for my leg!) I even told the doc that it was nice to have pain that decreases over time. (That is something that only an RSDer would say!)

I still can't believe that they let you take the bandages off before your first post-op. They covered mine with a plastic wrap to prevent infection. So I was about 3 weeks before anyone looked at it, and besides I have no one in my family THAT would want to look at it anyway. Not bending or reaching or putting my hands over my head is hard to do. Also, not lifting anything over 5lbs is hard now that I'm finally starting to feel better. I just started to walk the dogs again (2 Pembroke Welsh Corgis) and they are very happy!

I go back in five weeks and I'm sure they will release me back to work, but the requirement for my job is to lift 70lbs. and I don't know if I will ever be able to do that. We will see.

Well enough chatting for now. Take care have I hope you have a less painful week.

April

[April63]

It is "raceagainstpain.com" and most of the people posting have had SCS put in. Take a look my name on that site is jumphi4 (Don't know why I didn't use April?!?) Take a looksie for more info on the healing process. There are a lot of us out there with this horrible condition.

April

[christine1003]

they did not tell me not to change them or to change them but my mom said that there was blood on them so she waited 2 days before she did, yeah i got the ooooo gross from my son and dad and said they dident want to look as they peek with one eye lol, i am terrified that my rsd has spread because it hurts when my hair is down and rubs across the shoulder area of my back i have an appoinment this morning so i can ask the dr all my questions

feel better hon have a nice day

christine

[April63]

Let us know. I could not even let clothes touch my incision area, but now that has changed so I hope it will be the same for you. Just remember, it's only been a few weeks. Try to stay positive : )

[christine1003]

the rsd has spread to my whole uppper back shoulder area and neck from the surgery but medtronics did some adjustments to try for a week to see if it works there it does help a little actually hey I have a question i have something new going on my palms of my hannds are peeling its weird because i use lotion all the time and have no explanation is this the rsd also?

[Bussey]

Do you have RSD in your hand? I have RSD in my right hand. At one time, anytime my hand would become, even slightly sweaty, the peeling that I would experience, was absolutely horrible! It looked terrible. I know that in my case, it was due to the RSD. I am not sure, if that is why your hand is peeling, as well.

Bussey