Tomorrow, October 1st, I was scheduled to have a neuro-stimulator attached to my spinal cord. The procedure is called "Subcutaneous Placement." I waited three months just to see the surgeon, then six months for the actual surgery -- but I came down with a cold and they had to cancel it. I can't even call to reschedule until I'm completely over it. I am devastated. Of all the weird cautions and warnings I knew about, I never pictured this scenario.
My wife and I had mentally prepared ourselves and now have to go through it all again, not to mention the fact that my pain doctor has been less willing to help me control the pain with medicine, especially in anticipation of this surgery.. I know this isn't a good topic "thread," but I just needed to vent among those who have similar burdens. Thanks for being here.
So sorry it was postponed, and that your doctor is not being more helpful. I had a PNS implanted in August, and I am very happy with it. I hope you have a good result, once you are cleared for the procedure!
Sorry to hear Henry, I hope you feel better soon and that you’ll be able to reschedule with not too long of a wait. Insist your doctor prescribe you “something” if you’re currently not taking anything for the TN pain…
Btw, vent away…I completely understand your disappointment…I’m a firm believer that ‘things’ happen for a reason…we may not understand right now, but one day it’ll make sense.
Let us know when you get a new date!
Mimi
Henry, my leads are in my face, (in front of my ear) and in my scalp above my ear, battery in chest. I haven’t heard of PNS for TN in the spine, though.
Henry, I am so sorry. I share your frustration too. After a long wait and procedures to satisfy the insurance company that this procedure would work, my Stim implant that is scheduled for this Wednesday, Oct 2nd, is in its 3rd appeal (that is if they can get around to schedule the appeal, during which time I am supposed to speak). The clinic, Operating room, and everyone else is giving me until 8:30 am to come up with some magic (my husband says that they are all snickering behind our backs, knowing that there is no way we will ever win the appeal)
Forgive me for whining about my own issue. You have to do what your Mama always told you to do and get lots of rest and extra sleep and eat chocolate ice cream (some people say chicken soup but I find good chocolate ice cream much tastier). Take care.
Haaaaa! thanks, TL. I've got the ice-cream covered. Good luck with the stim. Is it going in your spinal chord like mine?
TL said:
Henry, I am so sorry. I share your frustration too. After a long wait and procedures to satisfy the insurance company that this procedure would work, my Stim implant that is scheduled for this Wednesday, Oct 2nd, is in its 3rd appeal (that is if they can get around to schedule the appeal, during which time I am supposed to speak). The clinic, Operating room, and everyone else is giving me until 8:30 am to come up with some magic (my husband says that they are all snickering behind our backs, knowing that there is no way we will ever win the appeal)
Forgive me for whining about my own issue. You have to do what your Mama always told you to do and get lots of rest and extra sleep and eat chocolate ice cream (some people say chicken soup but I find good chocolate ice cream much tastier). Take care.
That's a bummer Henry. In generally I found I had to bend over backwards to rearrange my life (schedule) to see the doctors I wanted to see and get the treatments they recommended. Get a new surgery date and hang in there.
Nope, Henry, mine is going in my head. Or should say it WAS going in my head. Surgery was cancelled by OR scheduler at 5:30 tonight due to insurance denial and my not having a check for $55k to walk in the hospital OR with. All the more reason that you gotta get well and show that stinking nerve who is boss!
Hi Henry,,,Numero Uno..There is no such thing as "not good thread topic". You're receiving a great response. You sent me to the net to learn more about subcutaneous and percutaneous placements. I haven't heard about these surgeries being performed for TN Are they similar to Balloon Compression surgeries? What does the Neuro-stimulator do?. I'm learning something; it is a good topic.
Numero Dos. Don't assume surgeons know everything. Ask about the number of times they have performed the surgery for TN or ATN.. Ask them what they think about other types of surgeries. You can find descriptions of various procedures surgeries by going to the Search Box located in the upper right hand corner of this page. Type in "TN surgical procedures". Learn as much as you can about TN and return to your Surgeon with informed discussion and questions. There is a new adage that says,"Disappointment and Frustration build character."..( oh, ya,sure!). Perhaps the delay is a blessing. Good Luck and let us know if the Surgeon still loves you.
Really sorry, TL. Can't imagine why you can't just go to your checking account and grab $55k! Thanks for your kindness and concern.
TL said:
Nope, Henry, mine is going in my head. Or should say it WAS going in my head. Surgery was cancelled by OR scheduler at 5:30 tonight due to insurance denial and my not having a check for $55k to walk in the hospital OR with. All the more reason that you gotta get well and show that stinking nerve who is boss!
No, the balloon procedure works differently. A nerve stim is like an internal "Tens Unit." Have you ever used one or know what it is? An electrode is placed near the damaged nerve and you can control the level of electricity. The most common type is the "peripheral." I have one in my jaw and another in my leg. The one in my leg (for my foot) works beautifully. The pain is gone and I hardly ever think about the stimulator being there, since the level of electrical impulse deadens the pain without having to crank it up so high it's uncomfortable. The one in my jaw didn't take. The subcutaneous placement is broader -- less precise. Here, they they cut into some kind of cranial nerve but the process is similar. You control the electric intensity.
SF Bill said:
Hi Henry,,,Numero Uno..There is no such thing as "not good thread topic". You're receiving a great response. You sent me to the net to learn more about subcutaneous and percutaneous placements. I haven't heard about these surgeries being performed for TN Are they similar to Balloon Compression surgeries? What does the Neuro-stimulator do?. I'm learning something; it is a good topic.
Numero Dos. Don't assume surgeons know everything. Ask about the number of times they have performed the surgery for TN or ATN.. Ask them what they think about other types of surgeries. You can find descriptions of various procedures surgeries by going to the Search Box located in the upper right hand corner of this page. Type in "TN surgical procedures". Learn as much as you can about TN and return to your Surgeon with informed discussion and questions. There is a new adage that says,"Disappointment and Frustration build character."..( oh, ya,sure!). Perhaps the delay is a blessing. Good Luck and let us know if the Surgeon still loves you.
They did a 7 day trial for my Stim, I had all these wires hanging out of my face and carried around a device that looked like an old fashioned garage door opener. The device itself had issues and I wasn’t able to use all of the 7 programs they put in (very common from what they said and everything I read… the leads in my head were all fine, you could tell that the place where they attached to the trial machine was a bit defective and when they switched it out for another garage door opener it was perfect). My pain was down 75%+ with the Stim on. Several times it got turned off because face it you are not used to carrying around a garage door opener. Other times one of the leads would be loose at the garage door opener-- all those times I knew within 2-3 minutes because the pain came roaring back. Sure enough I would look and a lead was loose or the machine was off. I had my life back. Unfortunately my insurance, with which I have double coverage and we pay over $1800 for as a family a month will not cover the surgery despite my Neuro, NeuroSurgeon, and Pain Management Drs advice and judgment that there are no other treatment options available for me. Sorry to whine!
Unbelievable! Come to think of it....I DO believe it. What a shame that you found help for such hideous pain and they won't approve it. I often wonder what they would do if their wife or mother had to live like this.
TL said:
They did a 7 day trial for my Stim, I had all these wires hanging out of my face and carried around a device that looked like an old fashioned garage door opener. The device itself had issues and I wasn't able to use all of the 7 programs they put in (very common from what they said and everything I read... the leads in my head were all fine, you could tell that the place where they attached to the trial machine was a bit defective and when they switched it out for another garage door opener it was perfect). My pain was down 75%+ with the Stim on. Several times it got turned off because face it you are not used to carrying around a garage door opener. Other times one of the leads would be loose at the garage door opener-- all those times I knew within 2-3 minutes because the pain came roaring back. Sure enough I would look and a lead was loose or the machine was off. I had my life back. Unfortunately my insurance, with which I have double coverage and we pay over $1800 for as a family a month will not cover the surgery despite my Neuro, NeuroSurgeon, and Pain Management Drs advice and judgment that there are no other treatment options available for me. Sorry to whine!