Nervous about the trial.. What do I do??
Posted , 5 users are following.
After going thru 3 years of severe and chronic headaches I have been advised that I do not qualify for neck surgery..
I've already had fusion surgery.. Fused from C4-7.. This was done about 16years ago due to headaches, numbness and tingling in my right hand and pain in my forearm.. The fusion worked as far as the numbness and tingling and forearm pain. However, I now don't have proper control of my hands.. They kinda do their own thing.. I used to have beautiful handwriting but I can no longer control what my hand does.. It tweaks itself while trying to write.. Even trying to take my time.. I now have tremors in both hands when using them.. I didn't have this before..
I am now on more medication than ever before.. My headaches are worse than before..
I now get headaches that go from the Occidental Bone or the base of the skull, to my left temple the my left eye.. I've been complaining about this for 3 years. I've ended up with very heavy duty pain meds that don't work..
So in the past 8 months I've received 3 injections in my neck for the pain.. Guess it's supposed to be a pain blocker. Didn't work..
Was referred to get an MRI of the brain, everything is OK, a CT scan of the neck, didn't really say much, then the MRI of the C spine.. Was told that I am not a candidate for surgery.. Have several disks to are herniated, something with the sac for 3 of the disks, degenerative disk disease and Osteoarthritis of the neck..
The Orthopedic Dr felt that I was a good candidate for the Nuervo hf10 stim unit.. I had never heard of it before.. At this point I'm jumping up and down inside thinking that this was the answer to my prayers..
I talked to my pm Dr and he said there's only a 30% chance success rate and he no longer does the trials.. Thought that strange but oh well..
Now I'm waiting for a referral to go see a Dr that's 50 miles away.. This is for the consultation only..
After reading the responses, I'm scared to have this done. When I had the fusion surgery that was the worse thing I'd ever been thru and I've had a lot of surgery..
Not a lot of comments for having the hf10 put into the neck..
If anybody out there has had this done to the neck, I would sincerely love to hear from you.
Thank you ~
0 likes, 18 replies
allaroundanne linda57344
Posted
I am back, sorry, I have had a rough week with physical therapy for my neck...ie insurance's way of torturing me in every way possible before they pay for a stimulator in my neck. I have to prove I have tried all other methods before I can get it. Ughh. On Friday I came home exhausted and then ended up the day with pain radiating down both arms, the same pain the PM doc had just gotten rid of with his two epidural steroid blocks! It is like I am moving backwards in time!
OK, to answer the original question. First of all, the op must remember the Nevro is NOT the only stimulator out there. So, if you get the OK for the Nevro trial and it doesn't help your headaches, please don't get upset that there is nothing left, there is. I started out with a Nevro trial and it only got rid of about 50% of my pain on a good day. Of course, the Nevro rep was ready to sign my up for a permanent implant, but I asked to try another one and my doc decided that burst mode might hit more of my various kinds of pain. I have hemochromatosis so I have arthritis pain, bone pain, muscle cramps, neuropathic pain, a lot of different pain pathways need shutting down or toning out. Much to my great relief, when I woke up from the sedation from the St. Jude burst trial I had NO pain. I had no pain that entire week. It was great. So, all is not lost if your first trial doesn't go as well as you want it to. I know you are looking for headache relief, if I get it put in my neck I am looking more for neck pain, shoulder and arm pain relief. I really don't get headaches except at PT LOL. However, they handle these different types of pain with different programs they input into the nerve stimulator. So if both of us end up with the same nerve stimulator you would probably be on a completely different program than I would. I think the reason your PM doc doesn't want to do the stimulator is that a lot of the older PM docs didn't get taught to do them in the neck, I didn't. To learn them after residency was over you'd have to sign up for a prolonged multiweek coursed to be taught how to do cervical epidurals with these large needles and then thread these large leads in. It's only the younger PM docs who were lucky enough to learn how to do it in their residency fellowship training. Since you already had a fusion surgery, you will be a tough case, your cervical epidural space is a scarred up mess. I would guess that the new PM doc will attempt the trial with the leads and if he/she has any trouble threading them in, you will be referred to a neurosurgeon to have the leads placed in surgically. I don't think paddles will fit in the neck. If you get them put in surgically it will mean bone cutting again which will mean a prolonged and painful recovery-- ie 6-8 weeks. But, if it works, it is worth it. My lumbar SCS is working pretty darn well with a few exceptions. I ran into trouble last night, but that was after sitting at a 90 degree angle for over 4 hours-- now both hips hurt like crazy. I am going in for a re-program tomorrow, my rep called me right back this morning, I am lucky, Dee can't get her rep to even show up to her appointment!
Well, I hope that ramble all helped, the doc is a bit medicated LOL...between my hips and my neck. It is a darn good thing I am retired! You know, the gossipy nurse at my staples removing appointment on Thursday told me that the practice had to "discharge" 9 patients in the past week for using heroin or cocaine that turned up on random urines. I started thinking today, what if one of those people had an SCS in, how do you discharge one of us? We need follow up for life? Do you rip the thing out? Schedule someone for involuntary surgery???? I'll have to ask that question, but then LOL I may find myself doing random urines every time I go....
linda57344 allaroundanne
Posted
My head is just spinning with all the confusion with what to do.. My PM doctor didn't give me a reason why he doesn't do them anymore.. He just said he didn't.. What upset me about that scenario was that I had called his office 2 days before going and asked if he did the trial. Was told he would talk to the Dr and call me back.. In the meantime I had an appt to see another Dr that did do the trial on May 4th.. So I got a call back from my PM Dr's office and was told he did the trial.. Since I had to have a referral for a consultation for him to discuss it with me I raced around like a mad woman to have the referral changed from the May 4th Dr to my PM Dr.. So canceled the May 4th appt.. I had to have my Primary Care put in for the referral to be changed and spend almost an hr on the phone explaining what I was trying to do.. Had to explain 3 times my appt with PM was in 2 days.. I had everything switched over by Wednesday afternoon.. The appt with PM was at 12:30 Thursday.. I had to see him anyway because of meds.. They can't be prescribed by Primary care anymore.. So after we got the discussion of the pain meds out of the way we went onto the elect stim.. He had asked what the Orthopedic had said.. Told him the Orthopedic said that I was not a candidate for surgery and they suggest the Nuervo.. He said he was familiar with the procedure.. Then goes on to tell me he doesn't do them anymore.. Wait!! What?? Don't do them anymore?? I wanted to say that I was told by his office that he did do them!! So felt all of my effort was for nothing and he got to charge for a consultation.. I my insurance covers it, but had I gotten true information then I would still go see the other Dr on May 4th.. So now I'm starting over again..
Went to see my Primary Care the following day.. He was very enthusiastic about the stim trial and thought it was a good idea.. He didn't want me to have another surgery.. He said if anyone suggested surgery to RUN..
So as I'm leaving was talking with the check out nurse who knows my .. I had told her that I now need another referral to see the May 4th Dr since my referral was wasted on my PM Dr.. She tells me that one of the Primary Cares patients just has the trial done and was extremely happy.. I didn't want to go 50 miles to see a Dr, I wanted to stay where I live but she talked me into seeing this Dr.. So now I'm waiting for the referral to see him. Figure it'll take a week to get the referral then another week or so before I can see him.. I can't book without the referral.. So here I sit..
I'm not happy with the way this was handled with my PM Dr.. He got to charge the Insurance Co for a referral knowing full well he didn't do the procedure.. Kinda upset me and now I see him in a different light.. Sneaky!!
I'll keep you posted on how the stomach turns..
Just so tired of it.. Stress and depression is off the charts..
Keep me informed on how you're doing..
Take Care 💝
allaroundanne linda57344
Posted
Well, it could be an office staff snafu if he just stopped doing the procedure. But then that leads you to wonder, did he lose his privileges to do it? It may be a good thing you are seeing someone else to do this. Especially since someone you trust has given you a good referral, someone she personally knows had a good experience, that is worth it's weight in gold. I hate being retired, I now no longer know who's who in the medical community, I am stuck depending on the same word of mouth as everyone else! It sucks.... LOL.