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queenbee54
07-27-2001, 03:46 AM
Today I received some sad news from my husbands HMO insurance that denied a second unilateral DBS. As I had explained on a previous post, his surgeon wanted to perform a bilateral DBS and the insurance denied it stating bilateral is not under Medicare guidelines and therefore is not covered. The doctor then performed a unilateral in May with the intent to do another unilateral on the other side. Now the insurance states that medical documentation they received on my husband indicates the first implant appears to be for bradykinesia and akinesia, not tremor. They said local policy concerning DBS is specifically approved for the treatment of upper extremity tremors that have failed conservative medical management. My husband just turned 55 and was recommended for bilateral DBS because his meds have not been working well anymore no matter what they have tried with his Sinemet (reg and CR). He has balance problems and has fallen many times, often has uncontroled jerking of the muscles, and then goes through periods of stiffness with heavy feeling in the legs and can barely walk without extreme difficulty and exhaustion. I have been advised by his surgeon at USC and read info on the internet about DBS-STN that have helped these symptoms. I am still new to speaking on message boards but I appreciate the replies I received and find other postings so beneficial. I would so much like to hear from anyone who has had DBS or know someone who has to let me know if it was just for tremor or did it help other symptoms. Maybe there are also sites you can recommend that I can refer to for this because I can not give up as frustrating as it is I will continue to appeal the insurance's denial. I need documentation of it helping anyone with symptoms other than just tremor. The sad part is that my husband has to suffer more because of a medical director's decision.

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Googy
07-27-2001, 06:26 PM
Hi what a lot of misinformation they are giving you.They know nothing.Ruth" Pelican girl" is on vacation now but if I remember rightly never had a tremor. Also Bruce didn't.She had hers at UCLA.Bruce of course is still fighting Medicare.
You have to still appeal this,but you have to get back to the surgeon who did the first part and re submit it.
They make me so angry.I can imagine how your husband feels.

Hang in there,

Googy

Carrotcake
07-27-2001, 10:32 PM
DBS helps bradykinesia, rigidity and Tremors. However, as far as reimbursement from Medicare is concerned, it has ONLY been approved for payment for tremors. They are still in the process of approving payment for other symptoms in this case the surgery is titled DBS-STN. There ARE some states that are already paying on DBS-STN. The problem is finding out if your state is one of them. Only thing I can recommend is talking to the surgical coordinator and/or the reimbursement analyst assigned for the surgery dept to find out if your state's Medicare intermediary has approved payment for the DBS-STN surgery that your husband's doctor has recommended. Hope this helps.

Lory
07-29-2001, 10:52 AM
Originally posted by queenbee54:
Today I received some sad news from my husbands HMO insurance that denied a second unilateral DBS. As I had explained on a previous post, his surgeon wanted to perform a bilateral DBS and the insurance denied it stating bilateral is not under Medicare guidelines and therefore is not covered. The doctor then performed a unilateral in May with the intent to do another unilateral on the other side. Now the insurance states that medical documentation they received on my husband indicates the first implant appears to be for bradykinesia and akinesia, not tremor. They said local policy concerning DBS is specifically approved for the treatment of upper extremity tremors that have failed conservative medical management. My husband just turned 55 and was recommended for bilateral DBS because his meds have not been working well anymore no matter what they have tried with his Sinemet (reg and CR). He has balance problems and has fallen many times, often has uncontroled jerking of the muscles, and then goes through periods of stiffness with heavy feeling in the legs and can barely walk without extreme difficulty and exhaustion. I have been advised by his surgeon at USC and read info on the internet about DBS-STN that have helped these symptoms. I am still new to speaking on message boards but I appreciate the replies I received and find other postings so beneficial. I would so much like to hear from anyone who has had DBS or know someone who has to let me know if it was just for tremor or did it help other symptoms. Maybe there are also sites you can recommend that I can refer to for this because I can not give up as frustrating as it is I will continue to appeal the insurance's denial. I need documentation of it helping anyone with symptoms other than just tremor. The sad part is that my husband has to suffer more because of a medical director's decision.

Please keep trying. I am going to be 55 in September, so can understand, truly, a lot of your and your husband's frustrations. I'm not a candidate for surgery yet, but avidly read this board for cotinuing information,date, resources, and especially the rsults of peopel's DBS/STN surgeries. Please keep us posted, and I'm sure you will get many replies to your post, with good information for you. Lory

Pelicangirl
07-31-2001, 04:08 PM
Hi Queenbee,

I am on vacation and using my son's computer so I'm not real sure this will get there, but here goes.

I had my surgery done at UCLA and it was the DBS-STN, although I don't think the doctors wrote it up that way. All I ever saw on the forms was DBS. Maybe that's where they're going wrong. Anyway, I had bradykinesia, rigidity, dyskinesia, but never had tremors. The DBS alone is for tremors, but the DBS-STN is for everything else plus tremors. Maybe they would pay for a second unilateral if it was only written up as a DBS.

Pelicangirl (aka Ruth)

Bruce
08-01-2001, 05:39 PM
We are in exactly the same situation. We both live in a state where bilateral DBS/STN surgery is not FDA/medicare approved. When they are charging for a unilateral STN surgery, they use the same charge ccdes used for the older DBS thalamic surgery for tremors (unilaeral(. The STN surgery is approved in 27 states wich does not include our state. The DBS/TN bilateral surgery is the procedure of choice for idiopathic pd for all points who qualify for it. This surgery has the potential of improving all symptoms of pd.

The FDA rule at this point is it is the regional carrier's descretion for each state whether or not they will pay for it.

I gambled and went ahead and had bilateral DBS/STN surgery and medicare as expected,paid for only about half of the bill and I was stuck with a $25,000 bill. I have appealed their decision with as much documentation as possible. One key phrase they go by is it a "medical necesity.?

I recently discvered a fantstic web sitefor a reference. Ten pages came up and I only got to pge five and printed out and sent them 28 abstracts. Go tto http.//www.ncbinlm.nih.gov/entrez/query.fcgl?cmd Use DBS/STN surgery for a search word.Don, give up. The have to take our appeal seriously.

Bruce

queenbee54
08-03-2001, 04:32 AM
Thanks everyone for the info so far. I was out of town since Monday and just got a message from the HMO that a second medical director concurred with the first denial so now it is going to CHDR for 3rd party review. I talked with my attorney and he feels we need to sue but wants to consult with a colleague first. I am having trouble with understanding what was ment by the first denial letter from the insurance on the bilateral that said you may want to consider unilateral because "unilateral is under Medicare guidelines when deemed medically necessary". One would think "deemed medically necessary" would mean from the opinion and documention of the surgeon of neurology treating the patient but appearantly to the HMO it is their medical director. Now they use the excuse that DBS is for tremor only. I can not even see these guidelines they use but have to just take their decision? I understand that when they use DBS for tremor the wires are put into a different part of the brain than for STN. I am glad to hear that DBS has helped with Bradykinesia etc. The first time the authorization was written up it said "nervous system surgery" and I am understand that the doctor used a code 64999 given by Medicare. In the meantime my husband has wires in one side of the brain and nothing else has been done (no hookup and nothing to hook up to) It is getting worse by the day but I will not give up for not only my husband but, to help others who read these message boards that this will hopefully help if they ever have to go through what I am dealing with.

Bruce
08-03-2001, 06:07 AM
I can really feel for you, because I was extremely frustrated trying to get the same answers. If you want to get even more frustrated, call the medicare phone numbers and try and get a simple yes or no, to the quetion does medicare covver bilateral DBS/STN surgery. First of all, the medicare rep. you are speaking to hasn't a clue about DBS surgery. So you have to give them specific charde codes. Their answer to that is "we see thos numbers are active" or "we do not precertify." One rep. actually told me "the charge code is payable." and another rep on a different call said "it was "not payable.

If I understand you correctly, the lead wires are not hooked up? I could say that should be grounds for a law suit, but, since we are dealing with the federal government, odds are your chances of wining are doubtful at best.

Like I said before the phrase "medically necessary" is one of the things we have to prove to qualify for the surgery.

I researched this for a long time and I forgot to mention another key phrase medicare uses to deny coverage and that is "their is not suficent long term scientific studies to document whether the surgery is safe or not." (
(long term effects). Yet one of the 28 abstracts I sent to the regional carrier, is surgeons in France have been performing DbS surgeries. Most of these abstracts I sent them, was evidence that their are a lot of scientific studies that have been done proving the bilateral DBS/STN surgery is the surgery of choice to treat all Parkinson symptoms.

In spite of what we do, I suspect medicare will stick to their decision not to cover the surgery in some states and wait until the FDA approves it in all states. As I have previously stated, the Medtronic consultant told me the surgery is approved by the FDA/medicare in 27 states. How can they have enough studies to approve it in 27 states, but not the rest of the country? How can my surgery be "medically necessary" in an approved state, but not in Indiana?

The regional medicare carrier, who has the authority to approve the surgerry in this region, has not given me the courtesy of acknowledging receipt of my appeal and I have sent them documentation twice. In my opinion, these government bureaucrats work for all the people like us who pay their salaries from the taxes we pay. The problem is none of the medicare people I have contacted don't feel they are accountable to people like us.

I omitted from the comments about DBS surgery has been performed for over ten years in France.

Bruce

queenbee54
08-04-2001, 02:13 AM
Yes Bruce, you are so very right. I loved your comment about asking the people at Medicare about DBS. I tried that route too and I said I wanted to know where in writing I could see the Medicare guideslines about bilateral DBS. They were clueless. I had a Medicare rep 3-way call with me into a department who could possibly help and that was useless. I also received different answers to my questions. My husband's surgeon said he has presented the information of how DBS is approved in 26 or 27 states and claims that it is approved in Northern Calif but not in Southern Calif. to the medical director of the HMO insurance but that made no difference to the them. They just don't really care about health, just the money they can save by not authorizing the surgery. I asked Medicare this question and was told it would be the same in all of California but who knows who to believe. Bruce, I did not realize how much you have been through too and I know how you must feel because it is unfortunate to have Parkinson's but we should not be spending our lives trying to convince Medicare and HMO's how important having quality of life is. It makes no sense that it can be ok in different states, because disease is desease no matter where you are. As you get any further information on your work on this subject I would love to hear what happens. I will do everything I can to continue it on my part.

Pelicangirl
08-07-2001, 01:38 PM
Queenbee,

You said your husband's surgery was done at USC. I don't see how the doctor's could be so unfeeling as to leaving him not hooked up to his stimulator, even if it's only one side. Did they put the stimulators in? If not, why not? If they did, have them hook up one side. I know that they say that one side makes you unequal, but I had such good results after my first surgery and I really questioned having the second one.I had very bad symptoms on my right side and they did the left side of my brain first (left side controls right side in the body). I went to a MDS at USC for a while and she was great. Who did the surgery? Who is his neurologist? I understand that Giselle Petzinger took over where Cheryl Waters left off, and she is supposed to be quite good. If you aren't going to her, maybe you should. I'm not trying to tell you what to do, just maybe to offer some suggestions. Keep fighting. We are behing you all the way.

Pelicangirl (aka Ruth)

queenbee54
08-11-2001, 04:43 AM
Hi Pelicangirl; I have been away so just read messages. My husband was originally referred to Sheryl Waters by his local neurologist. When we called to see her we found out she left and so yes he has been seeing Dr Petzinger. She is great. She encourgaged him to see Dr Michael Dogali who is the surgeon who did the surgery. He is furious at the HMO about what they are doing to my husband. He feels it is unethical. The reason he has not had the pacemaker (stimulator) implanted was because we tried appealing the fact that a bilateral was not approved and that my husband should not have to have 4 surgeries when it could have been one bilateral and then another for the 2 pacemaker implants. Anyway, the surgeon wanted to do the other side of the brain and then implant the two pacemakers in one surgery to avoid 4 surgeries. My husband felt he was not ready that fast and then when we tried to get authorization for the other unilateral and it was denied we just have not had him do the stimulator for the one side. The way they do it at USC is after the bilateral they usually implant the pacemakers 4 days later then hook them up 4-6 weeks later making sure they is not infection. The surgeon said one side is not going to help him and now I am in 3rd party appeal on the denials of the second unilateral. His bad side is his right side. Also, Thanks for your questions and input, it is good to hear about all this.

Pelicangirl
10-12-2001, 01:26 PM
Hi Queenbee,

Would you please send me your e-mail address in an e-mail, if you don't want to post it here? I have a tape for you. If you would send it back to me, it would be appreciated. I am sending it to you by way of a Barbara Odom and Eunice McClafferty. So it will most likely be a week or so before you recieve it.

That goes for anyone else who would like a tape.I will send it to you if you promise to send it on to someone else or return it to me.

Pelicangirl (aka Ruth)

Bruce
10-12-2001, 11:48 PM
Here is the latest. I appealed medicare's policy denying Payment for bilateral DBS/STN surgery which I had on April 24.They havn't given me the courtsey of receiving my appeal. Medicare paid for half of the surgery and I paid about $25,000. Indiana is still not approved by the FDA for the surgery.

I was forced to have the surgery done by an inexperienced surgeon and it didn't work.

I have an appointment with Kansas University med center to correct the problem. The surgery is approved at the med. center, and they are one of the best.My advice is go to Kansas to get it done right and medicare will pay for most of it.

brub
10-13-2001, 02:00 PM
I can't believe the hoops you're having to jump through bu then again, it's typical of an HMO. It seems that their primary goal is short term expense as opposed to long term benefit - finacial and/or personal.I had my left side addressed first, (which means the implant was placed on the right side of my brain.)Almost (exactly) six months later, they placed an implant on the left side of my brain. While my primary concern was the tremors that were rampant throughout my body (ie; torso, upper and lower extremities). the procedure rectified far more than the tremors. though the specialists don't speak of or about the other fixes that occur. For instance, my ability to swallow has improved greatly, my problem with constipation is no longer an issue, and best of all, my quality of life has improved to the extent that I'm not dependent on others to prepare meals, and then feed me; or to dress my self, or to drive when necessary. It, the DBS procedure, was performed at a time when I was just about to require in-house assisted living, which would have been a medical/cost nightmare. Does that qualify the DBS procedure as a "medical necessity"?

------------------
Phil of AZ

Bruce
10-15-2001, 09:06 PM
If you are having the the second implant in a state where the bilateral DBS/STN surgery is not approved by the FDA, don't expect medicare to cover the procedure.

Pelicangirl
10-16-2001, 01:54 AM
I might also say that the insurance company is saving a bundle on me when it comes to my drugs!!!!

------------------
Pelicangirl (aka Ruth)

queenbee54
11-12-2001, 05:17 AM
hello everyone, I have not been able to read this site for awhile between being out of town and having lots of computer problems (java script errors etc). I have missed keeping up with it but I see not too much posted lately. Anyway, the latest is I am waiting for the hearing date to go before the ALJ (admin law judge). I refuse to give up and will continue to fight the HMO to authorize and pay for the rest of the DBS-STN for my husband. Pelicangirl, you are so right that the insurance would save a bundle on the meds alone. When I saw you with your pill box in the video, I know what you mean. It looks like what I put together for my husband every two days!

Bruce
11-12-2001, 10:01 AM
Just to update you, I still havn't received any resonse to my appeal and I don't expect one. Everything in a state that does not have FDA approval for bilateral DBS/STN surgery hinges on that approval,because then medicare would cover it in every state.

Their is one other possibility. I know this looks strange, but Indiana U. med center does get medicare to cover the sugery and, as far as I know, IU is the only hosipital in this state to be aproved. So I would suggest you contact the nurse coordinator at your state's university medical center and he/she will give you a reliable answer. This person will also give you the charge codes

I have given up talking to medicare and I just lost my ride to KU so my next try is IU med center.

Bruce

Bruce
11-12-2001, 10:02 AM
Just to update you, I still havn't received any resonse to my appeal and I don't expect one. Everything in a state that does not have FDA approval for bilateral DBS/STN surgery hinges on that approval,because then medicare would cover it in every state.

Their is one other possibility. I know this looks strange, but Indiana U. med center does get medicare to cover the sugery and, as far as I know, IU is the only hosipital in this state to be aproved. So I would suggest you contact the nurse coordinator at your state's university medical center and he/she will give you a reliable answer. This person will also give you the charge codes

I have given up talking to medicare and I just lost my ride to KU so my next try is IU med center.

Bruce

md1817
11-12-2001, 09:13 PM
Bilateral DBS-STN is the prefered surgical procedure for most people with Parkinson's disease. However, at this time, DBS-THALAMUS is the only FDA approved procedure (in all states), and this is specifically for tremor. This is why in several states Medicare will not cover DBS-STN. Even though Medicare is a federal program, it is administered on a state by state basis.

In time all states will cover DBS-STN, and if you write to your state Medicare office in support of this it may happen sooner.

Bruce
11-13-2001, 09:24 PM
I have researched this topic for over two years and I know the FDA commitee has recomended the FDA approve this surgery The words the FDA uses is "it is at the descretion of the reginal carrier"and my appeal has never been answered. Several times I was given the "inside" story that approval was going to happen any day.


After exchanging letters with the carrier and even writting my Senator, my impression is these people don't feel like they have to an snswer to anyone and will make a decision when they are ready.

queenbee54
11-14-2001, 04:37 AM
I don't think I understand how if bilateral dbs-stn is not FDA approved in all states how so many people have had it. I do have written information that DBS-Stn is Medicare approved. I just have and HMO that does not want to pay out the money. Actually, my husband had one side and now needs the other side so it is unilateral. Unilateral was approved by the HMO but then when we went to get authorization for the next side, it was deemed "not medically necessary" by the HMO. I did give the cpt codes to Medicare (here in Calif) and they are authorized so I am hoping to win this. I know UCLA did both sides for Pelicangirl and according to our surgeon at USC, it is Medicare approved and they would have covered the bilateral under a Medicare study but my husband was not approved for the study. If it had been done under that Medicare study, the HMO would not even have been involved. I just won't give up in any case. It gets tiring but I am a fighter. Bruce, how can they ignore your appeal? Don't give up. There are groups that can help you fight it aren't there? Do you have the book on Medicare appeals and grievances and the patient rights book on your rights? Actually the latter is a good reference. Good Luck.

Bruce
11-14-2001, 11:48 AM
I just watched Ruth's video of her surgery (aka Pelican Girl) and she had two unilateral DBS/STN surgeries at UCLA. I am certain her insurance covered both surgeries and California is a medicare approved state. HMO's have a poor record of evading coverage, because they are a for profit outfit

have worked in hospitals most of my life and here are a few tips. Contact the billing department at your hospital. They should have known what billing codes and what information to submit to your HMO .

Next, contact your surgeon's office and talk to whoever does the billing. That person should know what documentation to send to your HMO to prove the "medical necessity" of having a second unilateral sgery. Their isn't any choice, a bilateral should always be done.

You have an excelant case. If medicare approves the surgery in California, and I think they do, the HMO is obligated to pay for the second surgery. If they refuse to pay, sue the hell out of them.

As for me, the FDA does not approve the surgery in Indiana and I probably will have to pay half the bill, about $25,000.

I have said the same thing. How can the surgery be "medical necessery" in one state and not in all states.

Here is the regional carrier's argument. "Their is not enough clinical studies done to prove if the surgery is safe or of benefit to a patient with idiopathic parkinsons disease." Isn' that a crock?

Bruce





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