Migraine

I tried calling my headache specialist this afternoon regarding this migraine and how long it is lasting and how sick it is making me feel. Other than to let me know that when I can take my Indocin again after Tuesday my CSF pressure should go down a little more the nurse told me, "Other than that.....the doctor has no suggestions."

I guess until I go to Mayo he has washed his hands of me. I can't help it my appt isn't until November!

I am so upset right now.........

I'm so sorry you're being mistreated like this.

My take on it is that I'd be finding a new specialist to go to after the Mayo. If he can't at least try to give you some relief now, he doesn't deserve to be your doctor.

Have you considered asking your GP for help?

Thanks Teri-
My GP is pretty useless...he just tells me to see the guys at MHNI. Well, apparently they are only interested in me on their own terms. He keeps telling me there isn't a headache doc at our hospital. Interesting because the neurosurg resident just told me there is.......

I am actually thinking about calling Diamond. I know a lot of folks are happy there and I am not sure how long I can go this way. I am not sure I can handle a month and a half of this!

Dawn

I say you've got nothing to lose! Surely, it's better than doing nothing in the interim. I'm with Teri. That doctor you've got now that's giving up so easily doesn't deserve the privilege of treating you! You're worth so much more than that! Big hugs, Dawn!

quote:

Originally posted by myachinghead:


I am actually thinking about calling Diamond. I know a lot of folks are happy there and I am not sure how long I can go this way. I am not sure I can handle a month and a half of this!

Dawn

I'm so sorry. Seriously, if he is out of ideas, it's definitely time to try out someone else. Fingers crossed you're able to get in to see someone else right away. Take care.

Diana

Dawn,

Are you going to Mayo about your migraines? I wss there earlier this year. Do you know who you are going to see?

Cyn

I'm so sorry you're dealing with all this right now Dawn. I'm with the girls... definitely look into a new doctor. Even if Mayo does work, you'll want a more local doctor to see all the time. Someone who's willing to try things and not just throw up their hands.



Meli

Cyn-
My headache specialist made the arrangements for me to see Dr Mokri at Mayo for a second opinion. My guy wants to do a VP shunt and he expects Dr Mokri will back him up on that. It is my reluctance to have the shunt done that has caused him to take this attitude with me.

I do want to try to find another doctor I think. I mean, I do understand this guy's frustration but I have only seen him 3 times and he is pulling this power play? It just feels wrong somehow.

I have to talk to my husband about all this. Right now he is pinning his hopes on the shunt dependent on what Mayo says. He just wants me to stop hurting and the doctor from MHNI has indicated that the shunt could be the magic bullet.

I don't believe in magic bullets for migraines.......

quote:

Originally posted by myachinghead:
I don't believe in magic bullets for migraines.......

ITA. Maybe I'm just completely jaded, but I don't trust anyone who is sure he/she can fix me or that one treatment or pill will solve all my problems. I say trust your instincts on that. Sometimes they're all we have to go on.

Diana

DH does not want me to switch doctors at least until I see Dr Mokri at Mayo. The more he reads, the more he discusses this with a friend who is a doctor, the more he feels that the shunt is the right thing to do.

Even if I end up having a shunt I would require a neurosurgeon here for it. I can't be running to Michigan (I assume they would recommend a NS at U of M or St Josephs in Ann Arbor) every time I need an adjustment!

I guess if no one has anything to offer me until after I go to Mayo then I will just try to stick my head under the sand and wait it out. It just seems like such a long time right now.........

Saw my therapist today and she too says to call Diamond. I told her Dh is not wanting that and she said, and of course it is true, that it isn't his head. I told him tonight i am calling tomorrow. He sounded very irritated but told me "if you want to start all over again with someone else be my guest!" I told him if I go to Mayo and agree with whatever they recommend I can always cancwel this appt or quit going. I will call tomorrow. It will probably take forever to get in to see them any way!

Be blessed-
Dawn

Dawn,
I'm glad you made the decision to at least make an appointment with Diamond, even if your DH isn't behind you in that decision. Your therapist is right when she says it's not his head. I understand you not wanting to do the shunt, I wouldn't want to either. It's a good idea to get different opinions from different doctors so you can make the right decision for yourself.

Good luck with everything!

Meli

Dawn,

I'm sorry that DH just doesn't get it. Your therapist is right- it's not his head, not his pain, and you need a doctor who can help you. It's not like you're wanting to start all over again- it's that the doctor you were seeing is no longer able to help you.

If he can't understand it on that level, maybe you'd be able to explain it in financial terms- ie- "do you really want me to be flushing money down the toilet- 'cause that's like what you're getting out of the doctor you have now, and that you'd rather try spending that money going shopping for something that would make you feel good. (a new doctor) Bad metaphor, but you get the gist, I hope.

Definitely try a new doctor- you're going to need a local person anyway, and if you can get established sooner rather than later and hear what they have to offer, it'll give you more options when you get to Mayo and see what they want to do for you. Knowledge is power- and the more knowledge and good docs you can have in your corner, the better off you'll be.


I assume you've seen our list of patient-recommended specialists, but I'll give you the link again-Here! Perhaps there are other people on there other than the Diamond doctors, and you may be able to be able to get in with them even quicker? Worth a look.

Thanks Meli and Jamie-

This will be kind of a long one!

Well, I called Diamond for an appt today and now I have to call back to cancel. DH was not thrilled with a couple of things and I have to say that some things just won't work for me.

I did get a fairly quick appointment with Dr Merle Diamond on Oct 19. But I was told after I was asked some questions to expect to be hospitalized that day for 7 - 12 days. I have an appt at Mayo Nov 3 and they are saying I will be there 7 -12 days.

I just can't be off work for that amount of time. I owe too much on credit cards and my husband can't afford my bills and his as well....not that he would not try. I can't afford that supposed disability insurance the card companies offer and I would guess it isn't as easy to get as the credit card companies suggest.

We get no paid sick days, leave, vacation or for that matter any benefits at all....well we got a discount card for Jiffy Lube. And Oct Nov Dec is the busiest season at work. If I took that amount of time off I would be out of a job. They would say I could come back but then hire in someone to fill my position. It has happened there before.

Also DH (and I admit, me too somewhat) was pretty unhappy with that $250 non refundable, non-reimbursable by insurance up front charge. According to the secretary they don't apply this as some people felt, to the first visit, other visits, other things down the line. They claim this is a charge so that you have the privilege to speak with your doctor 24/7. Interestingly I am sure I have heard people say it took a day or two for someone to get back to them when the called with a question.

They also have no idea if they are or are not "in plan" with BCBS of IL PPO. Trust me, this is something they should, and one can reasonably expect they would know. And you have to get your own hospitalization pre-certified.....but you don't even have a diagnosis code, a definite length of stay, whatever....

So, it doesn't look at least at this time that this appointment will work for me. I have to call tomorrow to cancel my appointment. Back to square one.

Jamie I did check the list of doctors on the site. Other than practitioners at Diamond there are only two other doctors in the Chicago area; the Robbins Clinic which does not take insurance customers, only medicaid, and another doctor whose site sounds like she is mainly into alternative treatments which I agree with as an adjunct but not the main thrust of one's care.

And actually the current doctor I have is new to me- so in many ways I am starting over with him. I have seen him twice. He is at the clinic I have gone to for many years but new there, coming on board when my doctor- the doctor I really loved and trusted- left. And the weird thing about this guy is they give in his bio only two previous clinics he practiced at....both clinics he "founded". Before I ever went to see him I was trying to find out more about him..... I mean I am sure he is reputable, the clinic is one of the most well known in the country. But it is just weird. You can't even google this guy! My old doctor has written papers, attended and then worked at such places as Mayo and the Cleveland Clinic. Has done some studies........ Man I miss that guy!

Oh well. If my head is not better by Sunday evening I am going to the local ER to see if they can perform a miracle and break this sucker. The neurosurgeon I saw there for my "aneurysm" told me they now have a headache specialist....maybe he can help. Sigh.

Oh! And doctors around here have such big egos they don't want to work with or talk with the clinic. Sigh again!

I hope everyone does as well as they can.

Be blessed!
Dawn