Here is the latest on my quest for relief.
I saw my pain management physician yesterday. I've decided that I would really like him to primarily treat my headaches. He is young, innovative, takes my pain seriously and treats me as a peer....which I like. I hate when doctors have that holier-than-thou attitude and act so patronizing. Not only have I been dealing with this ailment for 7 years...I have spent countless hours researching signs, symptoms, causes, treatments, diagnostics...you name it. Plus...I am a nurse...I do have some medical background.
So while I told him I was really interested in him being my main "head" guy, he is encouraging me to at least consult one more neurologist. One that he has a pretty good repoire with and one that is usually on board with his plans of care. Which is what I need. I am so frustrated with doctors disagreeing with each other! I see it at work...I see it in my care...it's annoying. No wonder patients get so confused.
So tomorrow I am going to call and schedule an appointment with yet another new neurologist.
Dr. B. also scheduled me to have another MRI of the head just to be on the safe side. I do have a right sided temporal hemangioma, which has been stable for years and is unlikely to be the cause of my headaches.
I am also in the process of waiting for approval from my insurance company for an Occipital Nerve Stimulator trial.
As Dr. B. said...I might as well go ahead with the trial...if it doesn't work or I don't like it...I won't get the permanent...if I do...I will...as simple as that.
One question to my friends out there that have the stimulators...do you all have your leads placed at the occipital nerve and/or in the epidural space? I think he wants to try 4 leads on me if it gets approved...2 in each spot.
My decision to go forward with the trial is that I really would like to eventually eliminate the amount of medication I take, particulary pain medication. I am petrified of being dependant on them, if I'm not already.
Most of the large headache clinics I checked out had a "one size fits all" medication regimen they give to patients. I've done numerous med combos and I am not willing to do more.
So...the saga continues with waiting for approval from the insurance company.
Keep your fingers crossed, my friends!!!
6 comments:
I'm glad you checked out the headache clinics because I don't think many of us are one size fits all.
My lead is under my skin over my occipital nerve, not in the epidural space. I have a cylindrical lead not a paddle lead but have had no problems with shifting.
There has been talk of implanting another at my supraorbital nerve in the front of my face since I have a lot of facial pain, but I have been patient with the stimulator and have gotten "crosstalk" between the occipital nerve and the trigeminal nerve so it helps the facial pain some.
Some people have great success, others not so much. Not sure if it is the type of headache (mine is not a migraine) or the person or the surgeon that makes the difference.
I certainly understand the petrified part. I feared at 51 that opiates (which really didn't help too much) would not last long as an option at the dosage I had to take for pain relief. Glad you have found a partner that will work with you!
You are so lucky to have a great pain management doc! Mine was a jerk, and after 6 months I dropped him. The narcotics didn't work anyway. Good luck with your new neuro, he sounds like a good one. Sending well wishes your way!
Thanks ladies!
Winny...mine will also be the cylindrical leads. I definitely do not want the paddle leads. We have to wait to see where the insurance company will approve placement. I have occipital neuralgia so I really need the leads placed there...but as I said he would like to place 4. If I'm gonna go for it...I want leads everywhere! Haha.
Narcotics don't do much for me either...but make me sleep so I don't feel the pain!
My fingers are certainly crossed for you. Insurance companies can be so difficult to deal with.
I have 2 leads over the occipital nerves and 2 leads over the supraorbital nerves, just under the skin. My migraine pain is all over my head, so it made sense to have the leads in the front and back of my head. I'm not familiar with the epidural space. You may be able to have them place the 4 leads and then set up a program for you that only uses the 2 occipital leads. At least with the trial I had, they let me try multiple programs, so that would allow you to see whether you really needed to have all 4 leads. Just a thought. Good luck, sweetie. Blessings.
I'd love leads in the back and top of my head as well...as I get pain everywhere too. Not sure what the leads in the epidural space will do, but he mentioned it.
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