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Hi. I'm sorry to be so late in responding to questions. My computer decided to die in a most thorough way, all through the external hard drive that was supposed to back up my computer when it died. It was like a mass murder. So I'm at the mercy of friends who I can bump off their machine.
I'll try to answer the questions in order, as well as bring you up to date on the latest news with me.
Yes, Michigan is totally appropriate for a teenager. There were 3 there just in my short stay, and we actually got pretty close with one. (Her mom and dad were there, and my husband really bonded with the dad.And the daughter is a gem!)
A few headache clinics were mentioned to me. Cleveland, which would have been handy because we have relatives who live there. But one of them has horrible migraines, and I had not been so impressed with her treatment. It may be the greatest place in the world...but just didn't ring my bells.
Diamond Clinic in Chicago was also mentioned. I looked into that more seriously. A friend of a friend went there in the kind of last-ditch effort from the endless misery. She loved her doctor and has had very positive results. In one year, had only 3 migraines (CAN YOU IMAGINE??"???) However, she said that the experience with staff in general at the hospital was pretty poor...almost like they were clueless about headaches and what people with headaches needed.
In contrast, the headache ward at Chelsea Community Hospital has 24 beds and the staff are SO clued in...very kind and considerate and knowledgable. I felt very nurtured and validated.
Another reason I chose Michigan over Diamond is that, when I read the curriculum from Diamond, there was a whole lot of biofeedback and not much variety. I've aleady had LOTS of biofeedback with no positive results, so that seemed like a big waste of my time.
I was attracted to Diamond's private rooms and worried about sharing a room at Michigan. I tend to isolate (does this sound familiar?), and the worse I feel, the more I want to isolate. The roommate situation gave me an instant advocate and pal. You can't help but hear how your partner is doing and you ask about each other and offer to help in small ways. You feel connected, which is a HUGE gift for those of us who have suffered so alone for so long and being so misunderstood,.
Finally, Michigan was said to be the best in the country. A patient I met there who had been to many hospitals, including Johns Hopkind\s, said that she had been told that the only place in the country that knew more was Michigan.
A hospital stay or not...some depends on where you live, so going as an outpatient wasn't really going to work for us. Their website explains a lot, but I think a typical stay is 15 days, but it can be shorter or longer.
As far as making that decision...that is so personal that I can't begin to advise you. Do I regret waiting over 20 years before going? You bet! I've lost so much that I can never regain...professionally, socially, physically, pschically. How long should pain be unberable until you get the best help available? How suicidal should I feel before I've earned a bed in Michigan? Not to say any of these are your questions...but I say without quivocation...I wish I'd gone 18, 20 years ago. Instead, I raised kids who know the "no blood, no smoke rule"....that is, Mommy's sick, so if therej's no blood or smoke, don't bother me. Those are so many years I can never get (or give) back. My self esteem has been in the tanker for so long because, with a migraine, I can't think clearly (they say it literally lowers your IQ 20 points). How it drives away friends who simply can't cope with chronic illness...and on and on.
So the question really is: How bad does it have to get for you and your daughter to say "Enough!"
Please remember, these are only my opinions and perspectives. I have no medical training, exceptional knowledge, or psychcs insight.
How am I doing today? Well, I've been out of the hospital since 2/13. My last migraine there ended at 11:15 a.m. It is now 2/29. In that time, I've only had to go to bed ONE TIME with the ice, pillows over my head, tears, and abortive meds. No vomiting, and surprisingly, not even nausea (and that's a shock because they have also been the big twins in my migraines!)
As far as liking my stuff to your web page...first, thank you for the compliment. However, I feel uncomfortable for 2 reasons. First, I have no idea what your website is. But 2nd, and really most important to me, is that Kerrie's website has been my right hand, my friend in the night, my comfort, my source of so much knowledge that I'd rather you point people to this website. Don't know Kerrie feels about it, but that's how I feel. I would hope that would be a workable situation for you. And, again, thank you for the sentiment. I think we all wish we could help someone else get through this a little easier than we have.
So where am i now?
Today I had my first visit at the Oregon Health & Science University Pain Center. The original idea was for Michigan to be the main guide & decision maker for my neurologist in Eugene and the folks at OHSU. I will be going to Michigan every 3 months. I am on the phone with them fairly reguarly with questions about my meds, etc.
I am deeply impressed with OHSU. Dr. Kaplan met with me for over an hour...really listened well, knows a heck of a lot, taught me some things I didn't know. I thought I was going in for a cervical epidural, the rationale being that doing a series of 3, 2 weeks apart, really hits the nerve inflammation & irritation in a big way. However, one problem with this is that this particular procedure can only be done 3 times a year, so you pretty much shoot your wad and hope that it lasts the full year. You can see why that can be a problem.
A potential problem with the facet blocks is that (1) the space between the facets is extremely small and even though a small needed is used, it can contribute to some deterioration of the facets and (2) long-term use of cortisone, even in such a localized way, can contribution to bone degeneration (osteoporosis).
Before I proceed, please let me remind you: I am not a medical professional in any sense. What you are getting is my interpretation of what I've been told.
Anyhow, my doctor today suggested doing a diagnostic facet block which lasts 24 hours. If that is positive, then doing the procedure that burns or cauterizes the small nerves that loop over the facets. That tends to give relief for 8+ months. The procedure can be repeated. Nerves are not cut anymore because what happened is they would often grow back with scar tissue, so there was an even bigger problems to solve.
I am having trouble driving, and with my balance. A call to MHNI, a discussion with my dr there, amended dosages. Michigan is FABULOUS about being available right away...with patience, friendliness, and extreme competence. In fact, before I went there, the extent of the professionalism, from the receptionist on up, really helped me feel more comfortable with that choice.
Oh, by the way, the dr at OHSU's Pain Center told me that the head of her department as the utmost respect for Dr. Saper and MHNI. She also told me that they (MHNI) know more about headache than OHSU's Pain Center before MHNI does HEAD PAIN, while OHSU also treats other forms of pain like diabetic neuralgia.
So I hope I don't steer anyone wrong...Ask your dr every question you can think of...do as much research about headaches as you can...keep asking other drs every questions you can think of, even if it's the same one. And be very proactive.
Best of luck to all of you struggling. Yes, my neck is beginning to hurt more...yes, I'm starting to get more headaches...But I am a thousand times better than I was 2 months ago. They, when I first opened my eyes in the morning, I'd think, "Oh xxxx! I'm still alive." Now most mornings, I open my eyes and am filled with so much gratitude about my life.
Hugs to all of you, Vicki
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