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Reed Procedure - is it covered by insurance? Does it work?

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Post  Crystal - Age 41 Mon Jul 18, 2016 11:13 am

I have chronic migraine for over 5 years, and am considering the Reed procedure since the drug approach does not give me the relief if need to care for my family and have a real life. I see a number of different things about the insurance payment – sometimes paying for the procedure, and other times not. I need to know: 1) Did your insurance pay for this procedure 2) How much did it cost 3) Did it work. Can you PLEASE help, as I really want to find a solution. I sincerely appreciate any help you can offer. My biggest fear is that the insurance says they will pay, and then they do not. I live in Texas. Thank you again – I really appreciate your help.

Crystal - Age 41

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Post  tortoisegirl Mon Jul 18, 2016 9:34 pm

Welcome! I only have second hand info (from my research in this area for my own medical care), but I thought I'd share anyways. As background, I primarily have a constant headache from NDPH (10 years), and only get episodic migraine. I tried an external nerve stimulaor trial a few years back, but it was only leads in my neck at C1/C2, and didn't get any relief. It increased my pain whenever I turned it on and unfortunately my doctor just didn't have the experience to try to fix the lead placement.

I didn't have the Reed procedure (or Omega procedure, which both have the same lead placement). They are both occipital (back) + supraorbital (front) leads. My doctor couldn't get my insurance to cover any leads considered to be peripheral placement, as peripheral nerve stim isn't FDA approved. He was able to get C1/C2 approved under neck pain, not headache.

In my opinion, if you are going to consider a nerve stim for migraine, the Reed procedure is your best shot. They have the most experience with it for migraine, including getting insurance to cover it. I have no clue how, but I have heard of quite a few folks saying they got it covered. Insurance wise you would get prior authorization for certain procedure codes, so it would be very tough for insurance to deny coverage after the fact.

Its likely you'd still owe a good deal of money though, as most folks have a deductible, then would pay a percent of the total (co-insurance), unless they have hit an out of pocket max for the year. For the trials they bill the device as a rental, and for the permanent I think they bill it as durable medical equipment, which often is covered at an even lower percent than surgery.

Costs can vary wildly, but the permanent procedure itself would usually be billed at least as over $100k. The mandatory external trial can be much much less, depending on how they do it. My trial was a simple in office thing, in & out in under 2 hours even with lead placement issues (no anesthesia, just oral drugs), and I think it was over $20k. They should be able to give you a ballpark out of pocket range at a place like the Reed center as they do so many.

In general an issue some people have with surgery for example is the doctor and hospital being in network for their insurance, but the anesthesiologist not being, so its good to double check that the care at each stage of a procedure (as well as the stim device itself) is covered.

As for the procedure, the Reed center seems to have the best results with migraine patients, not those with other headache conditions (like NDPH). There seems to be a number of folks online at least who don't get as much relief with the permanent than the trial, need lead revision surgery, etc, although I imagine its only got better over time.

It may be worth a try for a patient who has trialed and failed years of treatments, gone through multiple true headache specialists (those who see headache patients all day every day), etc. I'm not sure its the miracle treatment some doctors hype it as though (typically those selling the actual procedure...they have quite the online marketing videos I'm sure you've seen).

If I was seriously considering it, I'd want to see some actual stats on patients with a similar condition to myself, and try to get some informed medical opinions from doctors who don't actually do the procedure. I personally haven't considered it any further as I think I'd need front leads to have any chance it in working, and I don't know of anyone doing that locally.

The one place I did find would do the trial locally but have me go to Dallas for the permanent (and I don't have out of network non emergency coverage), and would require me to be off pain meds. So, I didn't consider it any further after the C1/C2 trial failed. Sorry you are suffering. Are you seeing a good specialist, one who sees you monthly and has multiple new ideas?

Do they combine multiple preventative meds, injections (Botox or nerve blocks), alternative therapies, abortive meds, and rescue meds, and tailor the treatments to your specific migraine type and symptoms? Often when we hit a road block or even when a doctor tells us nothing more can be done, all we really need is another doctor. It may take multiple new patient consults to find a good fit. Unfortunately there is no quick fix / cure. Best wishes.


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Post  Crystal - Age 41 Mon Jul 18, 2016 10:41 pm

Dear Kate,

Hard to imagine how much I appreciate your insight and cogent thoughts. Your ideas are so well organized with so much information.

I have had many different "solutions" given to me including different pharmaceuticals (called rescue by one MD), and once Botox. I try to follow the directions to the letter.

You seem to be in charge of your own care, and I admire this. I would love to hear from anyone else who has had the Reed procedure, just for a few more points about the reimbursement, if that becomes possible. I admit I was a bit shocked about the $100K amount - somehow I had thought it was about $30K.

Thank you again for caring - it means so much!


Crystal - Age 41

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