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Topic: Anyone had any experience with MHPNI ? (Read 469 times) |
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Dave_Emond
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Anyone had any experience with MHPNI ?
« on: Sep 11th, 2003, 2:22am » |
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Hi Gang,
Looking for anyone who might have been to or knows someone who has been to the Michigan Head Pain and Neurological Institute?
My doctors are worried that I may have "A manifestation of neurological symptoms caused by Cluster Headaches."
They don't know what to do with me these days. So this place was suggested. Problem is, I live in the Colorado mountains about 130 miles South West of Denver.
I can't afford the trip and accomodations, nor can I even find any type of service, treatment or hospitalization costs on their website.
I also didn't see anything on the website as far as medications I haven't already tried. And I'm not to keen on some of the surgery types and results.
I'm not even sure if what I'm experiencing is CH related, nor are the doctors. For those who may have missed a couple of my earlier posts, I'll give a very brief description. Starting back around the 26th of August, I felt severe pain in my upper arm. Each night it spread, and after a few days covered my whole left side. As my nightly CH attacks hit, the pain increased. I've never in my life had anything remotely come close to rivaling the pain of CH. (That includes the scalding my skin on my face from boiling water directly on my head from the stove, I never even felt the heat!)
But this pain I felt, it's like CH attacks all over my left side of my body along with the head pain. I was suicidal. I made my first 2 trips to an ER ever, no help at all (will spare you those details).
Finally, a local CPN took me in and was able to at least tone down these new pains with high dosage meds. This worked until they ran out, then the pain rapidly spread again. I'm now taking Celebrex, Skelaxin and Predinsone. These ... well ... I believe just the Prednisone are at least covering up the pain somewhat, but whatever is going on, I can still tell is there. (These meds do absolutely nothing for the CH pain.)
I know I need to see a very good neurologist again, because none of these symptoms make any sense. I do think I need another MRI (been 3 years since last one) and maybe x-rays?
I've searched the boards for anyone else mentioning these symptoms, but have come up blank.
Because I'm self employed, I've had to postpone many jobs and can't afford to travel far.
Can anyone personally reccomend a specialist anywhere here in Colorado or maybe a bordering State? Know if MHPNI is really the place to go, no matter what it costs?
I know they can't keep giving me steroids for long, and I can't bear the thought of going through those nights again. I still barely make it through the barrage of attacks that I go through every night of my life. Which, as usual, will be here shortly. Groan. I need to do something quick, open to all suggestions!
Thanks,
Dave
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Smurf
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Re: Anyone had any experience with MHPNI ?
« Reply #1 on: Sep 11th, 2003, 12:35pm » |
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Hi Dave,
I'm terribly sorry to hear about your pain. I can only tell you that it sounds like what my mother goes through. Whereas my pain is limited, TG, to my head and neck, Ma has it go down her whole left side. Now, she has broken a rib or two on her left side and she is osteo-arthitic, but when her HA kick in, all her weak areas like that get hit. Ma is 70 years old. She has had one confirmed TGA, and there are times when she is simply daffy.
I never heard of this MHPNI in MI. What town is it in? If no one who has been there, or who lives in MI responds to you, let me know. I have some contacts over there, but someone here probably knows more.
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vig
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Re: Anyone had any experience with MHPNI ?
« Reply #2 on: Sep 11th, 2003, 2:06pm » |
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Dave,
There's the Diamond headache clinic in Chicago which might do for a diagnosis. It's a slightly shorter drive.
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UnsolvedEquation
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Re: Anyone had any experience with MHPNI ?
« Reply #3 on: Sep 11th, 2003, 11:53pm » |
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BEEN THERE A FEW TIMES. MHNI and Chelsea Hospital. Call them and tell them what kind of insurance you have and they will tell you how much cash you'll need up front. 734-677-6000 or 734-973-3284. It really wasn't that expensive for me. I drove 400 miles to get there this last time. There were people there from all over ( including one girl...Lynn...from RENO ). Any other questions about MHNI ... just ask...I might be able to help you.
http://www.mhni.com or e-mail the billing department for financial question at
Billing@mhni.com
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Pinkfloyd
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Re: Anyone had any experience with MHPNI ?
« Reply #4 on: Sep 12th, 2003, 12:52pm » |
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Dr. Saper and the MHPNI clinic are both considered top notch. None of them are cheap but this one is expensive. They'll wprk with you on insurance, as most will, since few could afford to go to them at their own cost.
Don't bother bringing a supporter along if they want to participate. Last I heard was if your spouse wants to even ask a question of the good Dr. Saper during treatment, she/he has to make an appointment (even if he's in the room talking to you) at a cost of $1500.00
But then, they all have their quirks don't they.
Two of the best places in the US that are closer to you are:
Dr. David Kudrow
California Medical Clinic for Headache, Encino, CA
They see more cluster patients each year than any other clinic. Dr. Kudrow (Sr.) was a pioneer in cluster treatment, though now retired.
Dr. Ninan Matthew (houston Headache Clinic)
Park Plaza Professional Building
1213 Hermann Dr. Suite 350
Houston Tx
77004
713-528-1916
I believe he still uses Dr. Hurt as his "resident" neurologist and is very good also.
Remember, everyone has different views of doctors and clinics. One's savior is another person's hated demon seed. You'll get good and bad reports on everyone so it's best to do a lot of research and try to find a fit for *you* before you travel.
Good luck
BobW
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HypnoticFreddy
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Re: Anyone had any experience with MHPNI ?
« Reply #5 on: Sep 12th, 2003, 1:45pm » |
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You know....I went through the cat scan and MRI routine (twice!). It doesnt seem to show any abnormalities, but (understandibly) they need to check for tumors and other brain problems.
I do know that PET scans have been used and perhaps other types of imaging techniques, which do indeed show some abnormalities.
What I would like to know is, have they triggered CHs in an CH sufferrer during a cycle (alcohol, nitroglycerin), and then done any brain imaging?
-HypnoticFreddy
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UnsolvedEquation
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Re: Anyone had any experience with MHPNI ?
« Reply #6 on: Sep 12th, 2003, 2:03pm » |
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It's actually called "MHNI" not MHPNI. And supporters are welcome there. They did change the policy about having others in the room when the 'crew' walks in, but I'm sure Dr. Saper would be more than happy to answer any questions that family or supporters had. He's a very nice, down to earth man who also happens to be the best ! I know him personally, I can't let anyone put him down or make him sound like he's ALL about money, cause it's not true !
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Dave_Emond
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Re: Anyone had any experience with MHPNI ?
« Reply #7 on: Sep 12th, 2003, 2:48pm » |
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Thanks All,
Some good information here, I'll contact each and see what they propose. I'm on Medicare for the time being, so that will be a factor I'll have to consider as well.
Been unable to work for about 3 weeks now and will soon be facing problems just paying the normal bills if I can't get back.
My Doctor found a neurolgist in Denver he thinks can maybe be of some help, but he too is out of town until the 22nd. Don't think I can stay on the Prednisone for that long. My Doc suggested we might try Neurontin.
I went through the search CH.com and saw several different opinions on this med, which is pretty much the case with all meds.
I guess anyway it goes, no matter which clinic I may end up going to, it will probably take more time than I'd like to get an appointment.
The problem has spread into my right side now, so makes me a little nervous (pun not intended) 
After sitting around for the past few days, I've decided to refocus my attitude and up the fight. Forced myself up early, took my hot shower, had my wife cut my hair and gave myself a good shave. Put on my work clothes and went outside and did some very light yardwork and am now back to working on a bathroom remodel we started months ago in our home. Pretty drained right now, so I'm taking a break. Taking some vitamins and drinking lots of water and Ensure. If I can get an attitude adjustment and keep trying to work around the house maybe I'll find out if I can return to regular paying work early next week. Biggest worry about that is, I'd either have to continue the Pednisone or find another pain killer to even lift small things. I'm allegic to Vicodin or other codiene meds, so they are out. Maybe the Neurontin? My customers who are waiting on me to return are very patient and understanding, but that won't get my bills paid 
Will probably have to take my wife with me to jobs (I install flooring of all types) to "babysit" me though. I have no idea how safe I will be.
I'm rambling on here, trying to get back some ambition to go back and try again on the remodel work.
Thanks again for all the valuable information, the contact info is very helpful, I will look into all of them in more depth and present the info to my Doc on Monday.
Dave
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Pinkfloyd
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Re: Anyone had any experience with MHPNI ?
« Reply #8 on: Sep 12th, 2003, 3:32pm » |
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on Sep 12th, 2003, 2:03pm, UnsolvedEquation wrote:| It's actually called "MHNI" not MHPNI. |
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I know exactly what it's called. I used the same abbreviation the man asking the question that I was answering, used, to avoid confusion.
on Sep 12th, 2003, 2:03pm, UnsolvedEquation wrote:
And supporters are welcome there. They did change the policy about having others in the room when the 'crew' walks in, but I'm sure Dr. Saper would be more than happy to answer any questions that family or supporters had. |
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Then I guess you don't know him as well as you think. He will allow the spouse to SIT there but they can not ask any questions. Including, if the patient is too out-of-it to comprehend what "the crew" is telling him/her.
As I said...if they want to ask ANY questions, they must make a separate appointment and pay $1500.00 up front. Doesn't sound like a big welcome mat to me, but...hey, that's just me.
Unless I guess he gives his friends a discount?
on Sep 12th, 2003, 2:03pm, UnsolvedEquation wrote:| He's a very nice, down to earth man who also happens to be the best ! I know him personally, I can't let anyone put him down or make him sound like he's ALL about money, cause it's not true ! |
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Like I also said...
1. Saper and his clinic ARE each considered to be one of the top in the US. Saper knows his stuff.
2. One man's savior is another man's demon evil seed.
3. There is not a clinic in the world that does not have people that believe them to be "the best" and others believing them to be "the worst."
If you decided that a couple of facts made him sound to be "all about the money," I'm sorry you feel that way.
Believe me, any time you give blanket endorsements of how wonderful a clinic or a doctor is, it WILL come back to bite you in the ass some day. I tried very hard to make it clear that there are some people/doctors that fit well together and others that do not.
I also promise you that if you give a blanket statement that some doctor or clinic is terrible, you will find many people that will swear that they saved their life and are wonderful.
Couple other facts about MHNI. If you have an appointment, including from out of state, to be checked into the clinic there, you may not get in on that day. You get there and IF there is a bed open, you check in. If not, you go to a hotel and wait until a bed opens. They do not have extra beds or a working agreement with the hospital to take the overflow they might book.
This happens if a patient that was to be released hasn't made enough progress and they want them to stay longer. They may have scheduled that bed for you.
The good point of this is that they don't want you to go home without improvement. It is a problem though sometimes for people waiting for the bed after flying in 1000 miles and arranging vacation time etc.
Anything else you'd like to know?
BobW
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UnsolvedEquation
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Re: Anyone had any experience with MHPNI ?
« Reply #9 on: Sep 12th, 2003, 4:07pm » |
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PLEASE....you don't know as much as you think. NEW RULES STATES>>>NO OTHER VISTORS/GUESTS/LOVERS/SUPPORTERS ETC. ARE ALLOWED TO BE IN THE ROOM WHEN THE DOCTORS COME IN. ITS POSTED IN FRONT OF EVERY ROOM ! I WAS JUST THERE, TWICE. THE ONLY EXCEPTION IS MINORS, KIDS OF THE PATIENT WHO ARE UNDER THE AGE OF 18.
AND BY THE WAY ... NOT ALL DOCS ARE OUT JUST FOR MONEY LIKE YOU MAKE IT SOUND. MY NEUROLOGIST SEES ME ANYTIME I WANT...AND FOR THE FIRST 4 YEARS...HE DIDN'T CHARGE ME A DIME. HE EVEN ADMITTED ME SEVERAL TIMES AND I NEVER EVEN SEEN A BILL. HE SUPPLYS ME WITH 100 % OF MY IMTREX INJECTIONS FREE. HE'S GIVEN ME THOUSANDS. MAYBE YOU'VE JUST HAD SOME BAD EXPERIENCES WITH DOCTORS. ?
ANOTHER THING;
Quote:| you may not get in on that day |
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YOU ARE TOLD THAT THERE MAY BE A DAY OR TWO WAIT FOR A BED. I THINK THATS PRETTY DAMN RESONABLE...YOU DIDN'T?
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YOU MUST HAVE GOT PHUCKED THEN...CAUSE I ONLY PAID ABOUT $500 (PLUS INSURANCE) TOTAL FOR A 9 DAY STAY INCLUDING EVERYTHING! I OWE NOTHING ELSE
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NOBODY'S MADE A 'BLANKET STATEMENT' EXCEPT FOR YOU
AND IF YOU'D LIKE TO KNOW ANYTHING ELSE...JUST ASK...I'LL FILL YOU IN
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| « Last Edit: Sep 12th, 2003, 4:21pm by UnsolvedEquation » |
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Pinkfloyd
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Re: Anyone had any experience with MHPNI ?
« Reply #10 on: Sep 12th, 2003, 8:37pm » |
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on Sep 12th, 2003, 4:07pm, UnsolvedEquation wrote:| PLEASE....you don't know as much as you think. NEW RULES STATES>>>NO OTHER VISTORS/GUESTS/LOVERS/SUPPORTERS ETC. ARE ALLOWED TO BE IN THE ROOM WHEN THE DOCTORS COME IN. ITS POSTED IN FRONT OF EVERY ROOM ! I WAS JUST THERE, TWICE. |
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No need to shout. I'm sitting right here.
I know what the rules are there.
So, tell me, how many questions are the spouses allowed to ask, free of charge, from outside in the hallway?
Some spouses are allowed in under some circumstances but, as I said can't ask a question of the good doctor. You didn't dispute that.
If this is acceptable to you, great. Probably is to a lot of other people too. I was just stating a fact. $1500.00 in advance for a spousal session to ask a question? Maybe your insurance covered that too. Most won't. Most spouses would at least like to sit there in the room when the doc comes through. They have their live's on the line as much as the patient does. They're probably responsible for keeping the clusterer alive long enough to even check in to the place. I just think they could be shown a little more respect, thats all.
on Sep 12th, 2003, 4:07pm, UnsolvedEquation wrote:AND BY THE WAY ... NOT ALL DOCS ARE OUT JUST FOR MONEY LIKE YOU MAKE IT SOUND. MY NEUROLOGIST SEES ME ANYTIME I WANT...AND FOR THE FIRST 4 YEARS...HE DIDN'T CHARGE ME A DIME. HE EVEN ADMITTED ME SEVERAL TIMES AND I NEVER EVEN SEEN A BILL. HE SUPPLYS ME WITH 100 % OF MY IMTREX INJECTIONS FREE. HE'S GIVEN ME THOUSANDS. MAYBE YOU'VE JUST HAD SOME BAD EXPERIENCES WITH DOCTORS. ?
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I never made it sound that way, that all doctors are just out for money. I never even said that about Saper. You're just a little sensitive about that for some reason.
Cool off and reread my first post.
WOW, a free neurologist AND free meds. You dating his daughter? I'm glad you have found such a great guy, really. Guess he hasn't helped much with the clusters though if you've been through thousands of free imitrex injections/pills and then you had to go see someone else and go in-hospital at MHNI twice. But then I don't know your story and maybe you'd have been through tens of thousands of imitrex in that time without his help.
Bad experiences with doctors? No, sorry to disappoint you. I know many excellent doctors and really haven't had anything I'd describe as bad experiences with doctors. At least in the last 20+ years since I've been properly diagnosed. I had some winners before that trying to cure me of things I didn't have. But then, they just didn't know any better. I think their hearts were in the right place.
on Sep 12th, 2003, 4:07pm, UnsolvedEquation wrote:YOU ARE TOLD THAT THERE MAY BE A DAY OR TWO WAIT FOR A BED. I THINK THATS PRETTY DAMN RESONABLE...YOU DIDN'T?
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Sorry, no I don't think that is reasonable when people have to plan their stay and try to keep their jobs at the same time.
My point was that some places have agreements with the hospitals they are affiliated with to cover the overflow when this happens. The patient goes right in and is seen on rounds and all else. The program begins when they are told it will begin.
How about the people that are told to detox from ALL their medications so they can start fresh and then sit in a hotel for 3 or 4 or 5 days with no medications, no abortives? Not knowing when they will get the call.
That may be reasonable to you but not to me. Sorry.
I put it out there as information in case this IS important to someone thinking about going. Maybe it's reasonable to you. Maybe not to the next guy. What, too much information about the place or what? If this IS important to someone, I wanted them to know that some places don't have this check-in procedure. If you were planning on providing this information and I said it first,...sorry. I'm sure you want eveyone to know the good and the bad about MHNI.
on Sep 12th, 2003, 4:07pm, UnsolvedEquation wrote:
YOU MUST HAVE GOT PHUCKED THEN...CAUSE I ONLY PAID ABOUT $500 (PLUS INSURANCE) TOTAL FOR A 9 DAY STAY INCLUDING EVERYTHING! I OWE NOTHING ELSE
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No, I didn't get phucked....I've never been there.
I'm glad you only paid $500.00, thats great. How much did your insurance company pay?
How much will it cost someone without insurance?
Your cost has little bearing on what others will pay. Do you know what a 9 day stay would cost?
Be honest so the people that have to pay a $1000.00 deductible and then 20% of the balance can determine what it will cost THEM.
on Sep 12th, 2003, 4:07pm, UnsolvedEquation wrote:
NOBODY'S MADE A 'BLANKET STATEMENT' EXCEPT FOR YOU
AND IF YOU'D LIKE TO KNOW ANYTHING ELSE...JUST ASK...I'LL FILL YOU IN |
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OK. I'd like to know....which blanket statement I made that was not factually correct?
We're all protective of people that help us. Its understandable and deserving.
Tell me, how much better are your clusters after two stays with Saper?
Be well,
may your equation some day be solved!
BobW
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forgetfulnot
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Re: Anyone had any experience with MHPNI ?
« Reply #11 on: Sep 12th, 2003, 9:14pm » |
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Quote:$1500.00 in advance for a spousal session to ask a question? Maybe your insurance covered that too. Most won't. Most spouses would at least like to sit there in the room when the doc comes through. They have their live's on the line as much as the patient does. They're probably responsible for keeping the clusterer alive long enough to even check in to the place. I just think they could be shown a little more respect, thats all.
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What the fuck? Castration is in order for this a$$hole. Then he should be drug behind a car and thrown in the local sewage disposal lagoon.
Thanks for the heads up Bob.
Lee
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| « Last Edit: Sep 12th, 2003, 9:16pm by forgetful » |
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UnsolvedEquation
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Re: Anyone had any experience with MHPNI ?
« Reply #12 on: Sep 12th, 2003, 10:34pm » |
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Well...I can't really argue with what you've said here. I do believe that spouses should be able to be there during rounds. And yes...I guess I have good insurance then...It's government Medicare. Is that considered good? About my neurologist supplying my meds....no...I don't fuck his daughter...he just understands the seriousness of CH and is nice enough to help me out for many years....even though I am poor. As far as him not being able to help me...well...he hasn't been able to stop my headaches this time, but I do feel I owe him my life because without his help...I probably wouldn't be here today. He's helped me more than I could ask or explain to anyone. The only thing I could really argue with is...how could you even reply to this post or say anything at all about MHNI or Dr.Saper when you've never been there or met the doctors ? It is a great place for headache sufferers to seek help...I know...I been there a few times.
And oh yea ... You be well too...
(Didn't wanna leave that out)
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| « Last Edit: Sep 12th, 2003, 10:40pm by UnsolvedEquation » |
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Pinkfloyd
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Re: Anyone had any experience with MHPNI ?
« Reply #13 on: Sep 12th, 2003, 11:08pm » |
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on Sep 12th, 2003, 10:34pm, UnsolvedEquation wrote:| The only thing I could really argue with is...how could you even reply to this post or say anything at all about MHNI or Dr.Saper when you've never been there or met the doctors ? It is a great place for headache sufferers to seek help...I know...I been there a few times. |
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No need to argue about anything really.
The guy was looking for information and I supplied some. I didn't say I hadn't met any of the doctors from there or that have practiced there in the past. I said, again, that Saper and MHNI are both considered at the top in the field. Saper is always on the leading edge of research and treatments.
All the top clinics (and doctors) have different ways of doing things, different theories and treatment plans. That isn't saying one is better than another for a particular patient. They need all the facts and need to find the right fit. I'm willing to bet that 50% of my doctor's patients don't really care for his personality. I like him but when I think his clinic is a good match for someone I know, I often suggest they speak to one of the other doctors that I think would be a better fit for them and let them decide for themselves. I also think the clinic I've been at for 20 years is also one of the best but I've suggested people check out other's first if I think that would be a better fit for them.
In my post here where I suggested a couple of places, neither one is the clinic I've been at for 18-20 years. I do know the people at the other clinics and they are excellent one's that I thought were better fits for Dave.
I suppose Saper has this "supporter" procedure so he has more time with the patients. It may work for him and many of his patients, but I don't like it and I thought it was an important enough bit of info to pass along. As were the others. These aren't issues that should be learned while you're sitting there with your wife, 1000 miles away from home, IMHO.
I don't actually have to have been somewhere or have injested a certain medication to know facts about them that I can pass along.
~peace~
BobW
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Dave_Emond
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Re: Anyone had any experience with MHPNI ?
« Reply #14 on: Sep 13th, 2003, 1:07am » |
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I agree guys ... Peace ~
I appreciate both views.
Actually, your both pretty close to being on the same page about most comments.
The price issues I'm sure are determined by Insurance, Medicare, or other means and would be different for everyone for out of pocket money.
The spouse issue does concern me, I like my wife to be with me at every doctor visit I go to. I feel as if she is suffering from my CH as much as I. Had I known I was going to go chronic, I would not have married her and put her through all this. Then again, had I not married her, I have no doubt I wouldn't be here today. I'll have to look into that area closely.
I came away with some valuable information from both of you. So, I do hope you can remain friends, since I believe I just made two new ones myself
I did ask for personal recomendations and other options, I got both.
I think we can all agree that doctors, neurolgists and other specialists are to us just as are the medications. What works for some, may not work for others. Although none have been able to help me, there were some that cared more than others.
Over the years, I've gone through 40+ meds, none have worked. Imitrex Nasal would cut the edge off along with 15 lbs O2, but even that soon faded away and is of no help anymore. Many doctors, some I liked, some I hated, some overcharged, some undercharged. But in all efforts, still no relief.
I'm actually at the point where I think the only chance I'll ever get is if the CH just disappears for no reason at all.
MHNI was a suggestion by my new doctor, who admits he doesn't know enough about CH or this new sympton that has become a problem.
I'm pretty much past thinking I'll ever find a med that will cure the CH. But I do need to figure out what this other problem is so I can hopefully return to work. I passed on an offer from my previous employer and our healthcare agency to pay me 60% of my salary for the rest of my life, a whole lot more than I make these days. But, I wanted to fight through this for my own self respect. I continued to try to work, and ended up on SSA when I went chronic. I've been trying to get off benefits for a long time now, but can't prove to them to their requirements that I'm capable of being self sufficient. Sometimes I'm not, such as now, and if they hadn't given me Medicare, I wouldn't have a chance at finding out what is wrong now.
I have a possibly off the wall theory, as I'm trying to do as much research as I can. Call me a fool, but I would like to run it by you. Slap me upside the head if this sounds ridiculous
In my research on many neurological disorders, inbetween the lines I notice that spinal cord problems can cause blockages of nerve pathways. These blockages send the nerve impulses off into other areas. Where the paths lead mimic the pain that would normally be sent somewhere else. Since the brain itself cannot feel pain, it does however tell us there is pain, kind of like a defensive warning. Since I have developed such a high pain tolerance over the years, I often can hurt myself at work without even noticing it, someone has to tell me I'm bleeding all over the place. I'm small, but can lift twice as much as someone twice my size, yet I am not in anyway muscular, so I have no idea if I'm causing injury to myself. Since I'm basically in constant shadows while at work and have an average of probably 8 CH attacks during the work day, there's not much room to feel anything else. So now, for the first time in my life I feel pain shooting through my body, and even feel it more during attacks, I don't know where to grab and squeeze! Especially during the barrage of attacks every night usually starting up around 2:00 AM.
So ... if your still following this weird theory of mine (or are laughing histerically), what I'm thinking is that this pain might not really even be coming from my arms and legs. Maybe my brain is reacting to a spinal cord injury or even brain stem problem. And because the brain is trying to relate this to me, but not knowing where it is coming from, I'm feeling it at the same time as my attacks. Because I also believe the brain has no idea where the CH pain is coming from as well, the two mix together and throw it and me into complete confusion and pain unbearable. I can't believe it myself to this day that any pain could rival CH attacks levels 8 and up, but somehow this does. Scares me to death!
Well, I just had to run this by someone, I've got a lot of researching to do before I can either back this theory up or throw it in the trash.
Think there's even a hint of merit of investing the time on this possiblity? Or am I just stretching too far?
Thanks for listening, even though I could be way off
Anyway, I appreciate both your views and comments about my post. Please don't get upset with each other. I love a good healthy debate myself, but always hope to keep it at just that, a debate, not a loss of respect or friendship.
Feel free to give me an honest view, I can take it. Shoot, I'm still working on a huge project studying Magnesium Deficiency as a possibilty as well, but need to be med free and keep a log while experimenting with that.
Thanks, sorry for the long post,
Dave
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UnsolvedEquation
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Re: Anyone had any experience with MHPNI ?
« Reply #15 on: Sep 13th, 2003, 1:57am » |
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I've only got two things to add, maybe it'll make a difference, maybe it won't.
(1)When they do the RF procedure to 'cut off' the pain (or intend to) the nerves that are 'microwaved' are in the neck between vertebrae L C2-C3. Does that seem to have any simularity to what you are maybe suggesting? Maybe.
(2)You are right about us (me & Floyd), I don't hold any 'grudges'....FLOYD > FRIENDS?
Peace & PFD&N to both of you
~UnsolvedEquation~
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Pinkfloyd
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comfortably numb
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Re: Anyone had any experience with MHPNI ?
« Reply #16 on: Sep 13th, 2003, 12:07pm » |
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If I held grudges I probably wouldn't post here much.
No problems here at all UE. Still hope you can solve that equation some day!
As I've said in other forums, most times, the best information comes to light during a debate where it becomes necessary to back up one's claims with facts. Little is learned by anyone when a thread goes:
A:Try this!
B: Thanks, maybe I will.
A: Good luck <hug>
"B" asking "why should I try that?" helps more people IMHO.
Sometimes around here, a "why" is met with; Who are you to question us? If you'd read all the stuff here, you'd know why..."
(yeah, I know, the 80% good posts are a defense of the *other* 20%).......fine, I beleive you.
Anywho, I digress....U.E. I hope your clusters improve/go into remission, soon!
P.S....next time you talk to Dr. Saper, suggest to him he really should consider having a smoking room at his clinic. It's bad enough for people to be hospitalized to break a cluster cycle without having to go through withdrawls from smoking at the same time. As you know, most clusterers are smokers. It has also been pretty much proven that stopping smoking does not help much at all, if any, in breaking a cycle. It appears that some damage to the vascular system from smoking may be one factor in cluster headaches, but once the clusters have begun, the damage has already been done and is not reversible by quiting smoking. No one is sure what that damage actually causes, to trigger clusters but it MAY be a factor. Maybe the change to the vascular system causes some of the changes in the hypothalamus? No one knows at this point. Maybe the people that don't smoke have some other defect in their vascular system that causes a change in the hypothalamus over time. More research is obviously needed.
Just my opinion based upon my understanding of the facts. Not looking to get into a smoking debate LOL. I'd have to take the side of defending smoking and even for a smoker, I know that's a silly position to take!
Dave,
Good luck with your decisions and your clusters. It sounds to me as if your neural pathways are in the middle of an electrical storm of sorts. It could be that your clusters have triggered another form of neurological problem. It could be that you're developing a form of BAM or other type of "transformed migraine." Mixed with the usual cluster symptoms, you may just experience some of the symptoms of rarer types of migraine/neurological disorders.
I'm sorry I haven't read most of your posts or I might know more about your symptoms and what medications you have tried with what results. Its possible that Neurontin may be helpful to you if you haven't yet tried it.
Have you tried imitrex and with what results?
I'm not asking to suggest its use, but would be interested in how it worked/didn't work and any side effects.
I also don't know your views on the following subject of if you've even tried it, but especially if you're detoxing to try the magnesium, this would be a great time to consider....
www.clusterbusters.com
There are significant considerations involved after reading what I have, in regards to your situation, so if you decide to look further into this option, please do write to me directly for further discussions regarding your case specifically.
~peace, out~
BobW
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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