Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Hi Kat and welcome to the board! I think that somewhere in the files maybe there is something on the insurances.... someone else will probably chime in with that. Have you called your insurance carrier yet to find out if they cover helmets? I did that first, to find out. I have United Healthcare and they said they don't pay for it - but we do have a secondary insurance and they pay (CIGNA). Definately ask. As far as the cost, I am sure it varies, depending on what type of helmet you would be getting. Maybe post where you are from in the subject line and someone from that area could give you more information. I am in MN, my son Jaxson has a CranioCap from Gillette children's and the cost is just about $3,000. That is one time, including the adjustments we go for every week. Again, this can vary for the different helmets. Definately post where you're located, someone will give you more info. Good luck and keep us posted on how everything is going! Kim mom to Kaela (9 yrs) and Jaxson almost 6 months tort/plagio/CranioCap 12/4/03 > Hello all, > > I have been lurking around this board for the past several weeks. I > haven't posted yet because it seems that any question I have had, > someone has already asked with many informative responses. > > I have setup an appointment with a neurosurgeon for my 5 month old > son for early next month (he will be just about 6months when we go). > I had brought his head shape to the attention of his Ped. since about > 2.5 months old. I even setup a seperate appointment just to have her > take a closer look. Well, it won't suprise most of you that her > response was " time will round and hair will cover " . I would guess > his plagio. would be on the mild/moderate side but Im not an expert. > Some days I think its mild and some days it appears much worse. > Probably depends on the amount of time I stare at his head > > Im happy that I found this board and other info. online regarding > this topic. I actually was quiet suprised at how prevelant this > condition has become. Since reading over the past few weeks I > decided to take the next step and see a " specialist " . > > OK on to my question.. I don't know if my insurance will cover a > band/helmet if we find it necessary to go that route. Im curious how > much does this actually cost " out of pocket " ? Do you pay a one time > fee for the helmet and then a fee everytime you go for an adjustment? > I don't want $$$ to be a deciding facture in our decision but want to > be sure this is something we can afford if insurance denies the claim. > > Thanks for your responses. > > KAT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Hi Kat & welcome to our group: Thanks so much for your introduction. The cost of bands/helmet vary from product type. Cranial Tech who makes the DOCband costs $3,000, they have several clinics, you can see their locations at www.cranialtech.com . The STARband, made by Orthomerica, who distributes their product to certified orthotists, vary in price. The orthotist sets their price individually, but I'd say avg cost is $1,500-$2,500 give or take. Their website is www.orthomerica.com Where do you live? Maybe another member is in your area. You can go into our " database " where you'll find both " insurance " info and " helmet/band providers " . There might be info on both locations & ins. that would be of help to you. What ins. do you have? Debbie Abby's mom DOCGrad MI > Hello all, > > I have been lurking around this board for the past several weeks. I > haven't posted yet because it seems that any question I have had, > someone has already asked with many informative responses. > > I have setup an appointment with a neurosurgeon for my 5 month old > son for early next month (he will be just about 6months when we go). > I had brought his head shape to the attention of his Ped. since about > 2.5 months old. I even setup a seperate appointment just to have her > take a closer look. Well, it won't suprise most of you that her > response was " time will round and hair will cover " . I would guess > his plagio. would be on the mild/moderate side but Im not an expert. > Some days I think its mild and some days it appears much worse. > Probably depends on the amount of time I stare at his head > > Im happy that I found this board and other info. online regarding > this topic. I actually was quiet suprised at how prevelant this > condition has become. Since reading over the past few weeks I > decided to take the next step and see a " specialist " . > > OK on to my question.. I don't know if my insurance will cover a > band/helmet if we find it necessary to go that route. Im curious how > much does this actually cost " out of pocket " ? Do you pay a one time > fee for the helmet and then a fee everytime you go for an adjustment? > I don't want $$$ to be a deciding facture in our decision but want to > be sure this is something we can afford if insurance denies the claim. > > Thanks for your responses. > > KAT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Welcome to the group. My daughter wore a STARband. The insurance didn't cover it. We paid 1500. This included everything. I believe the DOCband is around 3000 it also includes all of the appoinntments. I am not sure how local helmets are charged. I think it is great you have done all of this research for your son!! Please let us know how his appointment goes. What insurance do you have? Maybe someone has the same insurance and can share their experiences with them paying or not. Keep us posted. Angie and Jenna(STARband grad 1/21/03) Introducing myself Hello all,I have been lurking around this board for the past several weeks. I haven't posted yet because it seems that any question I have had, someone has already asked with many informative responses. I have setup an appointment with a neurosurgeon for my 5 month old son for early next month (he will be just about 6months when we go). I had brought his head shape to the attention of his Ped. since about 2.5 months old. I even setup a seperate appointment just to have her take a closer look. Well, it won't suprise most of you that her response was "time will round and hair will cover". I would guess his plagio. would be on the mild/moderate side but Im not an expert. Some days I think its mild and some days it appears much worse. Probably depends on the amount of time I stare at his head :)Im happy that I found this board and other info. online regarding this topic. I actually was quiet suprised at how prevelant this condition has become. Since reading over the past few weeks I decided to take the next step and see a "specialist".OK on to my question.. I don't know if my insurance will cover a band/helmet if we find it necessary to go that route. Im curious how much does this actually cost "out of pocket"? Do you pay a one time fee for the helmet and then a fee everytime you go for an adjustment? I don't want $$$ to be a deciding facture in our decision but want to be sure this is something we can afford if insurance denies the claim.Thanks for your responses.KAT For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Hi Kat and welcome to the group. Good for you for pushing to see a specialist. Your son is at a good age if he does need a band/helmet - you should see good results. As far as insurance goes, the band is usually covered under Durable Medical Equipment as and orthotic device. Check your policy and see what your coverage is. It's also a good idea to call your insurance provider and find out if they are in network with anyone who makes a band/helmet. Most of the time they are not - but it's a good idea to check first. Good luck with your appointment and let us know how everything goes. mom to Jake 18mo(DOC band grad 2003) and Tyler 4yrs. > Hello all, > > I have been lurking around this board for the past several weeks. I > haven't posted yet because it seems that any question I have had, > someone has already asked with many informative responses. > > I have setup an appointment with a neurosurgeon for my 5 month old > son for early next month (he will be just about 6months when we go). > I had brought his head shape to the attention of his Ped. since about > 2.5 months old. I even setup a seperate appointment just to have her > take a closer look. Well, it won't suprise most of you that her > response was " time will round and hair will cover " . I would guess > his plagio. would be on the mild/moderate side but Im not an expert. > Some days I think its mild and some days it appears much worse. > Probably depends on the amount of time I stare at his head > > Im happy that I found this board and other info. online regarding > this topic. I actually was quiet suprised at how prevelant this > condition has become. Since reading over the past few weeks I > decided to take the next step and see a " specialist " . > > OK on to my question.. I don't know if my insurance will cover a > band/helmet if we find it necessary to go that route. Im curious how > much does this actually cost " out of pocket " ? Do you pay a one time > fee for the helmet and then a fee everytime you go for an adjustment? > I don't want $$$ to be a deciding facture in our decision but want to > be sure this is something we can afford if insurance denies the claim. > > Thanks for your responses. > > KAT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Kat, Welcome to the group! I see your question was already answered, so I won't repeat it. :-) I just wanted to welcome you. Please let us know how your appt goes. > Hello all, > > I have been lurking around this board for the past several weeks. I > haven't posted yet because it seems that any question I have had, > someone has already asked with many informative responses. > > I have setup an appointment with a neurosurgeon for my 5 month old > son for early next month (he will be just about 6months when we go). > I had brought his head shape to the attention of his Ped. since about > 2.5 months old. I even setup a seperate appointment just to have her > take a closer look. Well, it won't suprise most of you that her > response was " time will round and hair will cover " . I would guess > his plagio. would be on the mild/moderate side but Im not an expert. > Some days I think its mild and some days it appears much worse. > Probably depends on the amount of time I stare at his head > > Im happy that I found this board and other info. online regarding > this topic. I actually was quiet suprised at how prevelant this > condition has become. Since reading over the past few weeks I > decided to take the next step and see a " specialist " . > > OK on to my question.. I don't know if my insurance will cover a > band/helmet if we find it necessary to go that route. Im curious how > much does this actually cost " out of pocket " ? Do you pay a one time > fee for the helmet and then a fee everytime you go for an adjustment? > I don't want $$$ to be a deciding facture in our decision but want to > be sure this is something we can afford if insurance denies the claim. > > Thanks for your responses. > > KAT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi Kat, I'm behind on my posts and I see that you have already received many responses so let me just say welcome and good luck with the insurance battle. I was lucky and mine covered 90% of all the cost. Keep us posted, Natasha > Hello all, > > I have been lurking around this board for the past several weeks. I > haven't posted yet because it seems that any question I have had, > someone has already asked with many informative responses. > > I have setup an appointment with a neurosurgeon for my 5 month old > son for early next month (he will be just about 6months when we go). > I had brought his head shape to the attention of his Ped. since about > 2.5 months old. I even setup a seperate appointment just to have her > take a closer look. Well, it won't suprise most of you that her > response was " time will round and hair will cover " . I would guess > his plagio. would be on the mild/moderate side but Im not an expert. > Some days I think its mild and some days it appears much worse. > Probably depends on the amount of time I stare at his head > > Im happy that I found this board and other info. online regarding > this topic. I actually was quiet suprised at how prevelant this > condition has become. Since reading over the past few weeks I > decided to take the next step and see a " specialist " . > > OK on to my question.. I don't know if my insurance will cover a > band/helmet if we find it necessary to go that route. Im curious how > much does this actually cost " out of pocket " ? Do you pay a one time > fee for the helmet and then a fee everytime you go for an adjustment? > I don't want $$$ to be a deciding facture in our decision but want to > be sure this is something we can afford if insurance denies the claim. > > Thanks for your responses. > > KAT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 In a message dated 1/9/2006 2:56:10 PM Central Standard Time, patricia.overell@... writes: Then the final straw - I go in today for a biopsy for a lump in my right breast. All the docs are sure it's just a cyst, so I'm not too worried, but the stress of one more problem, more appointments, and anticipating more pain, have just about pushed me over the edge. Thanks for letting me vent - it's good to know someone understands! Hi there . Sorry you are having a hard time with meds and everything lately. It can seem like everything is ganging up on you at once. Most of the meds i read here i've never heard of before. HUGS vent anytime. julie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Welcome, ! Sorry you have a lot of frustrating and painful problems right now. I hope your breast lump is nothing serious. I would mention your new hip pain to your rheumatologist or another physician, especially since you have taken (and may be still taking?) prednisone for an extended period. Maybe a pain management specialist could help get your pain under control? Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Introducing myself > Hi, I found this forum about a week ago, and have been reading the > messages. You seem like a great group. And, I could use a little > support right now. > > I'm 57, live in a suburb of Los Angeles, have 3 grown kids, 2 darling > granddaughters just a year old, and another grandchild due in June. > Hubby and I have been married for 36 years, and he's very supportive - > but hard as he tries, he just doesn't understand what it's like to > live with constant pain. > > I was dx with Polymyalgia Rheumatica about 18 months ago, and until > recently, thought I was handling it pretty well. Then everything fell > apart . . . my sed rate finally dropped into the normal range (after > starting in the mid-90s) but the pain and fatigue were as bad as ever. > Fibro. Then, diabetes from long term prednisone use. I started > having short-term memory problems, and couldn't think clearly - my > brain turned to mush. An interaction between my Celexa and Tramadol. > I stopped the Tramadol, it got better, but I still have problems. I'm > a bit worried that the meds fried my brain! > > Tramadol was a last resort pain killer for me, short of narcotics, > nothing else has worked, or can be taken with the methotrexate, etc., > so my rheumy added trazadone at bedtime to help me sleep. It does > that, but doesn't help much with the pain. After a very damp New > Year's, the pain was so bad I took a couple of the tramadol, not > caring what it might do to me. > > A couple of days ago, I started having intense pain in my left hip. I > have OA in my hip and knees from a nasty auto accident a few years > ago. I've been using a cane to walk since the PMR started, but even > that isn't helping much with this new pain. > > Then the final straw - I go in today for a biopsy for a lump in my > right breast. All the docs are sure it's just a cyst, so I'm not too > worried, but the stress of one more problem, more appointments, and > anticipating more pain, have just about pushed me over the edge. > > Thanks for letting me vent - it's good to know someone understands! > > -- > > South Pasadena, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Hello Anne Buzas, welcome and thank you for your honesty. I'll start by giving you the statement that those of us with Lupus, RA, Fibromyalgia, hear ALL the TIME, " But, you don't look sick " ! I will sit back, just lurk a bit too, to see what my friends here wish to contribute. My Prayer is that you will be more than a " ...writer... to stay abreast of trends... " . There are Article all over the place. What we need is an Activist. We do not have the strength and energy to, say, travel to Washington D.C. We do not have the strength and energy to initiate any sort of Action. Sadly we must pray for, rely upon, a " well " person to do the grunt work. I am actually sick and tired of seeing " pink ribbons " everywhere, and my own Niece is battling Breast Cancer. What about the Purple with Gold edging ribbons for Fibromyalgia? What about the plain Purple Ribbons for RA, Lupus and the others that fall under the category of this particular auto immune disease? What about the Red and Purple Ribbons for Chronic Pain. Is the writer Anne Buzas even aware of these various " Awareness " Colors? Well, I ask your indulgence if I seem to loose my temper a bit. Thank you Alice from Alaska http://maryals.blogspot.com/ On Jan 18, 2006, at 11:31 AM, elisabethd7 wrote: > Hello! > > I'm a writer for the National Fibromyalgia Association's magazine, > Fibromyalgia AWARE. I joined this group so I could learn more about > what patients are experiencing, and try to stay abreast of trends in > the patient community (which therapies people are trying, for > instance). I'll probably be more of a lurker than a poster! But > I'll be > happy to answer questions about the NFA and its services, especially > the magazine and the upcoming patient and CME conferences, if any of > you would like to ask me anything. > > Thanks very much! I'm happy to be here! > > Anne Buzas > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Alice, thanks for your note. In answer to your question, I am well aware of the many colored awareness ribbons out there--as well as the National Fibromyalgia Assn's awareness wristbands. You can find more information about them here -- http://www.fmaware.org/may12.htm# -- if you scroll down the page. I absolutely understand this community's need for an activist! The role of the NFA is to act as an activist for the FM community--and I'm just a small part of the NFA, doing what I can to help raise awareness about the realities of living with FM. That's why I'm here! And I'm already learning so much from everyone's messages. Anne > > > Hello! > > > > I'm a writer for the National Fibromyalgia Association's magazine, > > Fibromyalgia AWARE. I joined this group so I could learn more about > > what patients are experiencing, and try to stay abreast of trends in > > the patient community (which therapies people are trying, for > > instance). I'll probably be more of a lurker than a poster! But > > I'll be > > happy to answer questions about the NFA and its services, especially > > the magazine and the upcoming patient and CME conferences, if any of > > you would like to ask me anything. > > > > Thanks very much! I'm happy to be here! > > > > Anne Buzas > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Ms. Buzas, Do you yourself live with any of these conditions, or do you live with someone who does? If not, I certainly hope you lurk a lot before you reply here. Im certain you mean well, but if " keeping up with patient trends " is your only goal, I suggest ordering " Arthritis Today " magazine. Forgive my peevishness, but so-called normal people witness enough of our day-to-day struggles, hearing about our inner struggles with ourselves and how we handle our disease isn't really going to help, since they have no idea what its like. After all, we don't " look " sick. What would really help us, is a " normal " person with the energy to lobby Congress to force the drugmakers to make the drugs we need affordable. Or to make it so we all have access to the health care we need. Maybe you could do an article about the uninsured millions who desperately need the care of a specialist ( in my case, a rhuemy) but can't afford 400.00 for 15 minutes, much less 300.00 for the tests (at least) and then a few THOUSAND a month for arthritis meds. That's where we need help. Public awareness would be nice, but we all know the public is generally like a lot of sheep, and can't see much past the butt of the sheep in front of them sometimes. Good Writing. Jane she1writes <annebuzas@...> wrote: Alice, thanks for your note. In answer to your question, I am well aware of the many colored awareness ribbons out there--as well as the National Fibromyalgia Assn's awareness wristbands. You can find more information about them here -- http://www.fmaware.org/may12.htm# -- if you scroll down the page. I absolutely understand this community's need for an activist! The role of the NFA is to act as an activist for the FM community--and I'm just a small part of the NFA, doing what I can to help raise awareness about the realities of living with FM. That's why I'm here! And I'm already learning so much from everyone's messages. Anne > > > Hello! > > > > I'm a writer for the National Fibromyalgia Association's magazine, > > Fibromyalgia AWARE. I joined this group so I could learn more about > > what patients are experiencing, and try to stay abreast of trends in > > the patient community (which therapies people are trying, for > > instance). I'll probably be more of a lurker than a poster! But > > I'll be > > happy to answer questions about the NFA and its services, especially > > the magazine and the upcoming patient and CME conferences, if any of > > you would like to ask me anything. > > > > Thanks very much! I'm happy to be here! > > > > Anne Buzas > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2007 Report Share Posted March 31, 2007 Wow, that was quite a history. I notice you had rheumatic fever. I think a few others of us have had this as well. Did you have any valve damage from it? I also had my tonsil, and adenoids removed and had chicken pox as an adult. Just diagnosed with asthma too. Congrats on the weight loss that is fantastic. I believe you can still have RA and be negative. At least that is what my doc says. What about your sed rate? Is it high? Joy Deborah Stalcup <debbee8448@...> wrote: Hello, My name is Deborah and I'm almost 59. I live by myself and have multiple health issues. Here is a brief history: as a child: asthma, rhuematic fever, measles, mumps, chicken pox, anemia, thyroid, depression, tonsils and adenoids removed, fainted a lot. I had four children (3 of those by 18yrs. old), I was morbidly obese. From my 20's to this day, I have extreme stiffness especially in the morning. Asthma has been severe to almost extinct at times throughout my life. At this point it is back moderately. My family and I have been through major traumatic events in life that still affects us to this day in differing degrees. In 1990 I got the flu and ended up with pneumonia in 3 of my 5 lobes. I spent 10 days in the hospital because I almost died. 1990 was when I was first treated for my depression with medication and also was diagnosed with Type 2 diabetes and put on oral medication. I also had a D & C that year and in October of that year I had to have a total hysterectomy at 42yrs of age. I went on Premarin at that time. In 1994 I was in a serious auto accident which destroyed my left ankle, I have a rod in my right femur, right breast was injured, left hand broke a bone. I spent 5 of the next 7 months in the hospital. I had 4 surgeries on my ankle with the last one being a fusion. I had two surgerie on my femur. We had a scare with breast cancer at that time because 4 lumps came up in the damage breast but it turned out to be trauma from the wreck. To this day I have twice the mass in that breast and extremely lumpy breast in both. I also spent the next 5 1/2 yrs in a wheelchair. Since then I have had multiple skeletal issues, chronic pain, fibromyalgia, osteoarthritis, tendinitis in elbows, carpal tunned, neuropathy problems, in the last few months I have developed painful elbows, I have had to have 3 vertebra in my neck fused 4 years ago, just found out 1 never fused. No guarantees at all that another surgery would make it better so I have to live with that pain till I can't stand it any longer. Recently found out I have a S.L.A.P. lesion in right shoulder which is a tear from front to back. Can't have surgery as you have to be off any mobility products (walker, cane) for at least 4 months to have surgery. A year ago I had to have the left foot and ankle rebuilt and refused. I was 3 months non weight bearing so it meant a wheelchair again, next 3 months I used a combo of wheelchair and walker, next 3 months a walker and started using a bone stimulator, next 3 months finally out of aircast and went into a new AFO and continued on the walker but also started using a quad cane. My hands are going numb while trying to write this. I can hardly hold a phone for more than a couple minutes w/o hand and arm going numb. I found out 2 months ago that I have nothing under the kneecap on my left, the cartilage is completely gone. Can't have surgery till the ankle/foot is totally fused. Now the othe knee is starting to show the same signs so will be evaluating that knee also next visit. I just had surgery 10 days ago to have my bladder suspended in a sling, pelvic floor repaired and rectum repaired. I had gastric bypass in 1999 and lost 208 lbs. I kept all of it off by exercising in a pool till this past year when I had the surgery on my foot/ankle. I have put on 40 lbs. because I ate out of boredom, immobility, etc. I was 5 months before I could ever get in the pool. But, I had to build my stamina gradually and was finally almost back to where I was when I had this surgery. But I have only been able to get 3 pounds off. The pool and weight loss is what finally got me out of the wheelchair and finally off a walker and then just with my AFO brace on. It took 8 months to accomplish from time of gastric bypass. Prior to the ankle/foot surgery last year. I fell and cracked my sacrum. That was the start of multiple falls over the next 1 1/2 years. Each time I reinjured sacrum/lower back. I have pain injections 3 times in my saciriliac (sp?) joints. I've had cortisone shots three times in right foot for Morton's neuroma, once in right hip. Years ago I had a blood test for RA but it came back negative. Does that mean I would never have RA? I don't know what else too do. I spend a lot of time going to doctors and it sure gets tiresome. Next post I will tell what my routine and meds, etc. are each day, week, month. Maybe some of you will have some suggestions on other steps I could try. This is long and I apologize for that but thank-you for listening. Nana almost 59. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Welcome Deborah man you have been through so much. I was also tested negative but I do have RA and the doctor knew as soon as he did his exam plus my father and his mother has it. My father's started at my age. I am 48. Marsha Deborah wrote: Hello, My name is Deborah and I'm almost 59. I live by myself and have multiple health issues. Messages in this topic (0) Reply (via web post) | Start a new topic Messages | Files | Photos | Links | Polls | Calendar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 Greetings everyone, new here, wanted to introduce myself and say Im glad to be here among everyone. Looking forward to a positive exchange of ideas, sharing and mutual learning. Also, I hope to share, if its of interest, some unique research I have been working on for the last eight years that I feel will be of intense interest to our members here. Best Regards to all D Quote Link to comment Share on other sites More sharing options...
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