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Title: Educating the Neurologist Post by LasVegas on Oct 15th, 2003, 1:18am My HMO approved my Dr's referral to a neuro, my appt is this Thursday. Unfortunately, the scheduling guy says that of the 4 neuros in the office, none of them specialize in headaches, let alone the unheard of CH. Any info you guys think would be most beneficial to bring, ask, educate him/her about, etc.? Every medical professional, ER room, Quickcare unit, pain mgmt office, etc that I visit doesn't know anything about CH and i'm the one suffering prescribing my own meds/dosage/etc. Besides the above answer you may hopefully reply to, here's another ?...what tests are worthwhile to have done...blood/MRI/CAT scan/EEG? If any tests are recommended, why? Thanks in advance of my $50 copay projected waste of time and increased frustration. Gregg in Las Vegas |
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Title: Re: Educating the Neurologist Post by vig on Oct 15th, 2003, 1:28am call your hmo and have them find a neuro that DOES know something about headaches. couldn't hurt. |
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Title: Re: Educating the Neurologist Post by LasVegas on Oct 15th, 2003, 1:38am Took 4 weeks to get this appt. It's the only neuro office avail for my HMO. University of Nevada, School of Medicine, Division of Neurology. Got to keep it and make the best of it. Good suggestion though. Any replies to my questions? Gregg in Las Vegas |
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Title: Re: Educating the Neurologist Post by BillyJ. on Oct 15th, 2003, 1:40am This is probably the shortest (so the doc will read it!) article I have found that gives a good overview of CH treatment.It is also written by a neuro at a HA center witch gives it some authority. http://www.achenet.org/articles/cluste2.php It is from the ACHE website.There are two docs listed in LasVegas that are registered with ACHE(American Council for Headache Education).Maybe the doc you see would be willing to contact one or both of them for advice. Karl C. Fazekas, MD 4797 Woodridge Road Las Vegas, NV 89121-5824 (702) 732-2277 (phone) (702) 732-2277 (fax) James G. Marx, MD 608 South Jones Blvd. Las Vegas, NV 89107 (702) 878-4568 (phone) (702) 878-5214 (fax) >> Email this physician - http://www.achenet.org/physicians/mailphys.php?id=1493 An MRI and Cat scan are needed to rule out any other possible problems,an MRA is also a good idea. here's another link for diagnoses- http://www.achenet.org/articles/cluste1.php Good luck with the doc and PF2U, Billy |
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Title: Re: Educating the Neurologist Post by Woobie on Oct 15th, 2003, 1:40am I totally agree with Vig... but if they wont approve anyone else.. I sincerely hope you get a Dr who is WILLING to be educated!!! and if so ......... RUN WITH IT!!! Educate the beegeeebeees out of em.... If you get a Dr that refuses to be told anything - get yourself to another DR. Seriously. As for the tests... an MRI - to rule out tumors and stuff... I think almost everyone gets those. And if not, they should.. as for things to take with you - i'm useless.. I know someone else will have all the links.. but I dont .. sorry! I know you could go to the OUCH website and pull off a lot of useful info. Tina :-* |
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Title: Re: Educating the Neurologist Post by LasVegas on Oct 15th, 2003, 1:51am Billy, Thanks for taking the time and research for that info on the docs locally. You're a trooper. Gregg in Las Vegas |
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Title: Re: Educating the Neurologist Post by vig on Oct 15th, 2003, 2:14am I think the CT scan was the one my doctor insisted on to rule out brain tumors as the cause. course, they didn't find anything. |
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Title: Re: Educating the Neurologist Post by DJ on Oct 15th, 2003, 2:31am I'd insist on at least a CT (to rule out any type of tumors) and an MRA (to rule out any blood flow problems). Remember, MRA and MRI done with the same machine, but are two completely different tests. Just my 2 cents. |
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Title: Re: Educating the Neurologist Post by Dave_Emond on Oct 15th, 2003, 5:03am Holy Smokes!!!!! I just went through the entire website for this School of Medicine and the Neurology Division ... they don't even study headaches of any type! http://www.umc-cares.org/index.asp Having dealt with HMO's before, this is going to be a pain in the A$$! Most likely, what you'll have to do is go to the appointment, then get a "referral" from the doctor to another neurologist who specializes in headaches. This really sucks as it wastes so much time. But, if you can get the referral from him to the HMO, they should approve it. Your doctor may have to call or write your provider with this referral. I went through this as well. I was turned down by the HMO, but wrote a "Letter of Appeal" and they finally agreed. I assume you were given a booklet of Doctors whom are covered by your HMO? Check again under "Neurology" and see if there are any other options, in fact, considering how far off this is, I'd go through the whole booklet looking for anyone or anywhere that has any mention of headaches under their names. (Hospitals, Family Practitioners, clinics, etc.) An MRI is a MUST for your own saftey, however, when the MRI comes back showing (hopefully) that your brain is "Normal" this tends to cause a problem. My HMO doctor even had a CH patient who cut his finger off trying to divert pain, yet because of the MRI results he didn't accept that I had CH until I got the referral to a Neurologist who confirmed I did. At the time, I didn't even know what CH was and wasted well over a year with this doctor who kept giving me worthless meds for Sinus problems, inflamatory meds, etc., etc. .... Not knowing I had CH, I went to Chiropractors paying them out of my pocket and never finding releif. It wasn't until I finally had enough that I demanded a referral to a Neurologist who specialized in headaches, fought with the HMO, won, and was finally told what was wrong with me. Copy the articles from the links Billy gave you, they are good ones to bring along. I'd also print out the Cluster Quiz and fill it in and bring it as well. When the time comes, and if you run into trouble with your HMO, please feel free to E-mail me and I'd be happy to help you in ways to get the HMO to approve referrals to doctors outside their network. It's a screwed up system, but you can fight and win. Need any help in any area along the way, let me know, I can probably guide you through all the HMO bull. Damn! This kind of stuff kills me! Keep in touch, we'll get you through this. Dave |
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Title: Re: Educating the Neurologist Post by Bob_Johnson on Oct 15th, 2003, 6:31am After your initial visit you should have some idea whether this doc is open to listening to you. If yes, then invest in this book and share with him. Written by an M.D. for M.D.s ----- MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....") |
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Title: Re: Educating the Neurologist Post by LasVegas on Oct 15th, 2003, 12:42pm You guys really are great, thanks again for the input and support. If anybody else has 2 cents to add, add it, need all the worthwhile "Neuro ammo" I can, my appointment is tomorrow. Thanks again. Gregg in Las Vegas. |
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Title: Re: Educating the Neurologist Post by Patrick_A on Oct 15th, 2003, 1:43pm Heres my 2 cents dude! Doctors are already stressed out. Aint like it used to be, ya walk in and have a conversation with them. Especially them HMO neuros. My neuro i have now listens to me, but mainly because he specializes in CH's and he has had numerous CH suicides in his 25+ years of prtactice. My previous neuros basically wouldnt listen to what i had to offer. They put me on their latest medicine cocktail and sent me on my way. Sat in the waiting room for 1 hour just so they could see me for 10 minutes. My advice is......Find a neuro who understands CH, even if ya have to drive 100 or so miles. I drive 75 for mine and he is worth it! Patrick |
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Title: Re: Educating the Neurologist Post by Surf on Oct 15th, 2003, 4:17pm Patrick... you got that right, a conversation, heck some of em turn and walk out before you even get a chance to begin, let alone offering you a chance to begin your history... they back right of the room and it's time to go on...Surf |
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Title: Re: Educating the Neurologist Post by oringkid on Oct 15th, 2003, 4:29pm I don't know, just cus these guys don't specialize in headaches may not be a reason to rule them out... didn't someone say "school" in conjunction with this place? If not... sorry... but nonetheless... perhaps someone who doesn't go into this thinking "headache" might be good! If they are looking for something that is causing this headache, we could benefit! Ok, so it has been assumed that CH is a primary headache... but what if it isn't? How long has CH been considered a primary and what new facts about the brain and the nervous system and the endocrine systems etc. have been uncovered since then? Sometimes it takes someone to look at something from a totally different viewpoint to shed light on a situation! Go, don't tell them anything but your symptoms... Let them try to figure out what is wrong with you. I sometimes think that going to a doctor and letting them know what you have or think you have is not always the right thing to do. It tends to skew their viewpoint. It is time some fresh air was let into this syndrome. Let us know how it goes. Sherry |
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Title: Re: Educating the Neurologist Post by Prense on Oct 15th, 2003, 6:19pm Albuquerque, NM...Dr. Katzman runs the headache clinic at UNM. It's an eight hour or so drive for you, but that's the best I can offer. I'll have more specific info about her after 30 Oct...that is when my appt is for. BTW, the waiting time for her is about 1 month. Why see a doc that doesn't know how to treat you? That's like taking your car to a detail shop because the engine sounds funny. ::) I am sure there are HA specialists over in CA which would be a much closer drive for you. I would think that there would be a few there in LV as well. As far as the tests, definately have a CT and an MRI...preferrably prior to the neuro appt. If you don't, odds are the neuro will want these done prior to any treatment anyway. Why risk that? Many HA specialist require these tests prior to scheduling an appointment anyway. Good luck! Chris |
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Title: Re: Educating the Neurologist Post by romain on Oct 15th, 2003, 11:31pm I would not be worried. First of all, the dobermans at the front desk have no idea what the doctors are trained in. They are just there to make appointments. I would judge your doctor on the following: 1-How much time do they spend with you? An initial visit should be a good session. 2-Who does most of the talking (excluding questions). If the doctor just talks and rambles on and on, walk out and find a new one. Likewise, if they ask 5 questions and then send you out the door, get another doctor. 3-Are they a pill pusher? Is their answer to everything to write a prescription rather than delve into answering questions about the situation? 4-Do they actually evaluate you? I had one doctor who never examined me but wrote out a prescription. I left. 5-Do they keep you waiting or interrupt your session by leaving and coming back several times. I always try to get my initial consultation with any doctor the first one in the morning and the early part of the week. 6-What about explaining procedures, medicines, next steps? Do they explain the direction that they think they need to go? What to expect with medication, how to take it, etc. 7-How easy is it to get ahold of the doctor if you have questions and they told you to call him directly? 8-Do you feel like you are just another number on the turn-stile? Get the patients seen as quickly as possible does not equate quality heath care. 9-Can you understand your doctor? I have had foreign born doctors that I can understand better than American born doctors who cannot put two words together. 10-What is your initial gut feeling on your first meeting? If you dont think that they heard you or really listened to the fact that you feel something is wrong, get another doctor or another optinion. 11-I do this with all of my new doctors, ask the appointment nurse which of the doctors they would send their parent or best friend to? They cannot tell you outright, "who is the best doctor" But if you phrase it the way above, they are usually very nice and will let you know which of the multiple doctors they really like. Take the first name that they ramble off to you. I would recommend that you write down all symptoms, when they most commonly occur,: etc. Take your answers from the CH quiz with you to help answer questions. Also, keep an open mind that may be it is something else. Self diagnosis is sometimes wrong. If a treatment is not working, make sure you bring it to their attention. If you have any adverse reactions, make sure you also let them know immediately. Good luck on your visit! |
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Title: Re: Educating the Neurologist Post by LasVegas on Oct 16th, 2003, 1:08pm Wow, thank you all for the recommendations and kind words of encouragement. My appt is in 1 hour and i'm just finishing printing some research. I will take everything you guys mentioned to this neuro SCHOOL of medicine and see if they know of anything regarding my symptoms, followed by letting them tell me what they know of CH's or similar possible disorders, and then I will hopefully be welcomed to educate them with what I have self diagnosed and learned over the last 24 years, etc., etc. Bringing the quiz, some OUCH and ACHE research and of course great info from the most reliable resource of all...you guys. Thanks agin everybody, will update here with a post later this afternoon. Gregg in Las Vegas |
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Title: Re: Educating the Neurologist Post by Prense on Oct 16th, 2003, 6:48pm on 10/15/03 at 23:31:33, romain wrote:
N E V E R . . . underestimate the power and knowledge of a secretary/receptionist. You would be quite surprised at what they know and the influence they can have. The same holds true when job hunting... Chris |
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Title: Re: Educating the Neurologist Post by 9erfan on Oct 16th, 2003, 7:33pm How did it go Vegas? |
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Title: Re: Educating the Neurologist Post by LasVegas on Oct 17th, 2003, 3:16pm Waiting in the room to be seen and a lady walks in introducing herself as a nurse practi0oner. Asked where the neuro was, she says N/A today, your appt is w/ me, want to reschedule for neuro or see me, said both. She asked alot of Migraine questions, medicines/doasges, past history, triggers, etc, a bunch of reflex, motor sensory tests, says she hears a bit of popping in my jaw and to see dentist for possible TMJ which may be a cause of CH, she asked what I want? Told her somebody who is knowledgeable about CH's and/or somebody willing to be educated and work together as a team. Told her i'm not willing to be a number on factory line. We met for 2 hours and she ordered an MRI and an MRA and wants me to come back in December or whenever the HMO approves these tests and they are complete. Says my CT and EEG from a few years ago is usfficient for now as they came back normal. Says she just wants o rule a few things out first and then meet with me after the test results are in and take it from there. Until then, she upped my Verap from 160 mg/daily to 240 mg/daily with a script for 480 mg daily if I need it. Says everytime I go up or down on Verap, do it for a minimum of 2 weeks. After cycle breaks start weaning for two weeks with the last max dose of 120 mg pill. Said ride out the 60 mg two week script of Prednisone and taper off that. She says the Imitrex is not approved for more than 2 refills monthly because the FDA has not approved this. She did however give me 5 boxes of inj refills, pharmacy cash value locally here in as Vegas....$600 bucks. She says the Verap may cause lower blood pressure and check it often and don't let it get below 110. Says I MUST EXERCISE at least 30 minutes daily, even if that means "marching in place." She listened to me, reviewed the two cluster quizes I completed, answered basic and complicated neuro type (CH type) questions and really seemed to have an interest in helping me. My intial impression of a "nurse practioner" was wrong, I ended the meeting by asking her if she saw the movie "As good as it gets", told her i'm not as neurotic as Jack Nicholson, but am pretty damn close in terms of being compulsive. she remembered the movie and I asked her if she remembered the part where the little boy with the ongoing asthma problems that could never get help and a doctor finally came through for the little boy, she remembered, then I knew she would understand what my next act was, I gave her a big hug and said thank you very much. Think she was a bit shocked and felt like she did a good job with me yesterday. She probably realizes she has a big challenge with me, but willing to invest her time and effort and I left feeling very grateful and have hope back in my mind, instead of so much fear. also gave her the ACHE articles that Billy J posted links to on this thread, thank you, very informative easy credible reading re: diagnosing and treating CH's. BobG, going to get the book you recommend and call you to organize a 1st Las Vegas CH meeting. Everybody else who posted on this, the insight, the questions to ask, the blunt advice, etc have all been acepted with much appreciation. Thank you to all of you who posted on this thread. |
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Title: Re: Educating the Neurologist Post by LasVegas on Oct 17th, 2003, 3:50pm Trying to post picture. http://photoshop.superdownloads.net/uploads/July99.jpg Gregg in Las Vegas |
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Title: Re: Educating the Neurologist Post by BobG on Oct 17th, 2003, 3:55pm Hey Gregg, I think that was Bob Johnson that recommended the book. I'll be waiting for your call.. |
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Title: Re: Educating the Neurologist Post by LasVegas on Oct 17th, 2003, 4:04pm BobG, will call you this weekend. BobJ, thanks for the info on the book. Gregg in Las Vegas |
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Title: Re: Educating the Neurologist Post by Prense on Oct 17th, 2003, 5:09pm I am glad that overall you are satisfied, but this line is bullshit! on 10/17/03 at 15:16:42, LasVegas wrote:
If I can get 26 refills in one month through Triwest (military)... In the samples you received there is a piece of paper that clearly says there is a 2 per day limit, and it talks about aborting meegraine and CH attacks. Some people... |
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Title: Re: Educating the Neurologist Post by Cerberus on Oct 18th, 2003, 11:34am I have to agree with Prense here.....the Immitrex although potentially dangerous to the heart, I have no trouble getting the amounts I need unless insurance disaproves.....I get 8 6mg ampules a month minimum. equivalent to four stat-dose scripts. And that is separate from the pills which I can also get readily. Ramon |
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Title: Re: Educating the Neurologist Post by fubar on Oct 18th, 2003, 8:35pm Getting Imitrex is easy.... it's paying for it that's pretty hard. My insurance actually lets me have 3 boxes (2 per) a month before I have to pay the for whole thing. The other thing that pisses me off is they charge a full copay for each box, when the policy clearly says a copay is for a one month supply. They have a special exemption for Imitrex. -Fu |
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Title: Re: Educating the Neurologist Post by LasVegas on Oct 20th, 2003, 2:02am So is there anything in particular that an MRI or MRA would show of a ClusterHead compared to a non-ClusterHead, providing new tumors, etc? Gray matter? Enlarged Hypothalymus gland? |
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Title: Re: Educating the Neurologist Post by taraann on Oct 20th, 2003, 2:33am What AWESOME advice you all gave to Gregg for his appt!!!! You guys are so great! And Gregg I'm so glad to hear your appt went so well and gave you some much needed hope!!! What a great feeling that must be! |
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Title: Re: Educating the Neurologist Post by Dave_Emond on Oct 20th, 2003, 8:20am Quote:
No, evidence of Cluster Headaches won't show up on regular MRI's. The tests done with MRI's that do show the excess gray matter were done with special dyes, doubt any doctor or insurance company would warrant this type of test, especially an HMO. Most CHer's MRI's come back with marked a brain "Normal" (That is if they don't have another problem to deal with). You may show signs of Sinititis or Mastoiditis so they may try to medicate for that or send you to see an ENT, which usually leads nowhere. Be sure to let us know what your MRI says when you get them back. Keep in touch, Dave |
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Title: Re: Educating the Neurologist Post by Tiannia on Oct 20th, 2003, 12:53pm Gregg - Glad you appt went well. My MRI Came out completly normal. THat is the only alternative test that I have taken. When I saw my new PCP for the HMO that just kicked in for my work, all he will do atm is refill all my scripts and haad me start a headache journal to keep track of the headaches. When I see him in December we will see if he is willing to out me in touch with a neuro. As mine just started in July, I really dont think doctors are willing to call them CH's yet, but every time a doctor asks me "What do you fee" they end up say well it sure "sounds" like a cluster headache. /shrug Hope it all works for you and that we can get a Vegas group together, think that might help my hubby to know that there are others locally to talk to. |
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Title: Re: Educating the Neurologist Post by LasVegas on Nov 1st, 2003, 10:55pm So this past Thursday was 2 ful weeks since my appt and I called and asked when am I getting my MRI and MRA as the insurance company does not have any referral. The nurse to the doc told me that she still hasn't received the doc's dictation so that she could draft up a referral. Holy crap, this is BS. I told her to have the doc get her act together as this is unprofessional that I have been waiting 2 weeks and I have to follow up to find out this crap. She said she will let the doc know I called. This is unbelievably s-l-o-w for me to have to wait this long just for a doc to give her dictations to the nurse. Then i'm going to have to wait an addtl 3 weeks (average) prior to me getting approval from the insurance company. Then who knows how long it will take for me to get the appt once it's approved. The MRI place will not accept appts without prior authorization. Told the nurse the purpose of this is immediate, as there COULD be a tumor or something very serious here. This isn't exactly a basic medical test. Sorry, had to vent. Gregg in Las Vegas |
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