need some advice- pain management problem

Hi All


I was supposed to see my pain menagement dr tomorrow; His office called to confirm the appointment ths morning. However, just a few minutes ago, I got another call from his office cancelling the appointment. I asked what was going on thje nurse said, "His PA is out ofthe office, so he has had to move stuff around. Do you want us to mail the precriptions?" I replied that I really needed to see the doctor as the medications are no longer working.I asked if she could work me in or at least leave a note for the dr." She said she would catch upp with him tomorrow and give me a call back. I am not sure what to do in this situation.

The appointment is at 9 am and the office opens at eight thiry. (I am the child of two physicians and would understand completely if he was needed in the OR or something like that. However, he certainly knoe that his PA would be out of town long before this afternoon. I am really frustrated and in a great deal of pain. so far, I have thought of three options to remedy the situation.
1. If I do not hear from his nurse by 10am, I will call ask to speak with her and finf out what the dr said.
2. If when she does call, I will ask to speak to the dr by phone so that we are all on the same page and if he wants to change anything, I would be happy to pick it up.
3. Go to the appointent anyway. I underswtand that this is the most controversial approach, but it my be time to stand up for myself. I just can't live with the uncontrolled pain anymore- it is hurting me and those who love me. (I would of couse call in advance to make sure that the ft is there.

I would love any inpiut or advice on thiw matter.

Pain free dahys,
sailingm

Howdy

If it were me, I would be at his office when it opened with a thick novel. I would tell the receptionist that I HAVE to see the doctor even though my appointment was canceled. I would say that I NEED medical treatment and cannot wait.

THAT is what I would do ... your mileage may differ.

How disappointing! I'm sure you didn't want to hear about a cancellation.

Cheryl

Has this happened before to you SailingM?
If it has, then yeah I would show up at the appointment!
It's not fair to jerk you around like that when you need your meds.

If this isn't the first time this has happened,
I'd try your best to explain to the staff that you truly need to see your doc.
Sometimes they don't understand that your meds aren't working anymore
and you have been anxiously awaiting your appointment in pain.
The people up front are not doctors, they are receptionists.
They are told the schedule changed and they must do A, B and C.
You calling up and requesting something different is confusing
their original directions, and maybe they just don't know how to handle that.

Good luck, and if you are suffering a whole bunch I'd show up anyways just because they called you on such
last minute terms. After all, didn't you sign a paper saying if you didn't give them the courtesy
of 24 or 48 hours before cancellation you'd be fined some crazy amount?

Hi All,

When I told my roommate/driver about this, she said "you are going anyway!" So the current plan is to leave and get to his office at 9am. Yes, both of us are bringing books or something to do, but I cannot go on like this. The medication makes no difference whatsoever and I have been on it for 4 years now. It simply time to take control. I can't control the fainting, but we do have ways f controlling pain.
Someone asked if this had happened before- it has not. However, I still have a problem when i am told that I can't see the dr because his nurse practioner will be gone and he had to move things around. It may be the truth, but he clearly knew of this in advance and made no plans for it. I am hurting, I am tired, I have fainted 16 times today. So yes, I think it warrats a drs visit and if I have to wait a while,. so be it.

painn free days,
sailingm

GREAT decision! It is MUCH easier to blow soneone off on the phone than someone standing in front of you.

May I suggest something by Augusten Borroughs to read? Or perhaps one of the Rome series by Colleen McCullough? Two of my favorite authors that make the time fly!

Keep us posted on what you find out, sailingm. I'm saying prayers the doctor sees you immediately, listens to you, empathizes with you, and works with you to come up with with a plan to help starting now.

Take care,
Becky

hi All,

Thank you so much for the support and kind words. Things did not go as I had hoped. The nurse called me about 8:15 and saild that she had talked to the dr about the problem. He told her that he "had nothing else to offer. I really do not believe this. The only thing that he has ever prescribed for me is MSContin. I know that there are other options for pain control.

I went to his office anyway, in order to pick up my prescriptions. I also gave the nurse a letter to the Dr. Here is an edited copy of it:

Dear Dr X,
I have been seeing you for about three years now and you are, and have been extremely helpful. I understand that you had to move things around this morning due to unforeseen circumstances, as I have several concerns that I feel need to be addressed, I thought I would do so in letter form.
Morphine is doing nothing- it has finally reached the level where pain is overwhelming it and there is little difference between taking it and not taking it. I am currently on MS Contin 30 mg twice a day, with MSIR 15mg as a rescue. This combination has worked quite well for several years; however, it has stopped working or in other terms, is not as effective as it once was.

What can we do about this problem? When I spoke to your receptionist this morning, she said, “You had nothing else to offer.” There must be something that we can do. Could we possibly raise the dose or change medications? The two pain medications that have worked in the past have been Tylenol #3 and aXXX have helped in the past. I would be more than happy to go back to these medications for a time. I will do whatever you recommend.

As you know, in addition to migraine, I am also dealing with Neurocardiogenic syncope/ Postural Orthostatic Tachycardia Syndrome. This causes me to faint or to fall to the floor anywhere from 3-10 times each day. I really feel like I am fighting a two front war here- one against migraine and one against neurocardiogenic syncope. At the moment, even with the best medical care available, there is very little that can be done to treat the neurocardiogenic syncope. However, I think that there is something that can be done to control the pain of migraine. As I stated above, I will be happy to go with either switching medications or increasing the dose. I look forward to working with you on this.

I also asked if I could speak to the dr for jusdt a moment, anytime he was free. I told her that I would be perfectly willing to wait. She replied that if he saw me, it would put him further behind." I also asked what happened and was told "something came ujp and he had to reschedule patients for today." I asked if I waited, could I see him for just a minute, again the answer was no, despite the fact the fact that I told her the pain was out of control. We rescheduled the appointment. However, I am going to call and make sure that he has recieved and read the letter. I have found that letters to doctors might produce more results than a five minute visit. As much as I wanted to stahy, I know that the gatekeepers were not going to let me see him today.

I really do not want to change pain drs, I just want the pain treated. Unfortuately, the only other pain dr in town sees my mother. I suppose I could see his parter, though.

I have notified my neurolgist about the situation. I also located my former neurologist, who is wonderful in Tuscaloosa, though he has changes specialties. I would not mind talking or writing me to get his take on the matter. In addition to migraine, he also took care of pain control. I may be grasping at straws here, but I don;t know what else to do. I am really scared, in pain, and tired of fainting every 3o minutes. There must be another option and I am bound and determined to find it.

I'd love any advice or help in this matter.

Pain free days,
sailingm



I

Sailingm

I'm wondering why you can't see the same guy who treats your mom. I figure thats kind of cool,
because you've already got a pretty solid recommendation. (I've never seen a pain control doc,
so I don't know the rules of this, forgive me if this is an ignorant question.)

I'd be pretty pissed off at your office if I were you, and I'd switch doctors pretty fast.
It seems like your doc isn't very concerned about your pain at all from what i'm hearing.
I could be wrong, but the way he answered you was kind of insensitive.
Instead of a simple, "I understand, and I will do the best I can to accomodate you,
but I cannot do anything at this moment." he says, "I have nothing to offer."
What kind of pain management is that?

Your doctor works for you, and makes a decent living doing so. It puts food on his table,
gas in his car and a roof over his head. The minute I start feeling that he or she looses sight of that
I find a new doctor.

I'm so sorry that you have to go through this SM. I really hope things get sorted out as soon as possible.
You seem too nice a person to have to go through this BS.

Let us know how it goes.

I think your letter was well thought out and I liked the tone of it.

Like Lovegia, I'm wondering why you can't see your Mom's neuro.

Let us know what's happening. Sending hugs your way.

Charlotte

Hi All,

Thanks so much for the suggestions. I am absolutely furious at the Dr and at his office right now. I even tracked down my old neuro, whom I saw for 8 years until he swithed specialities to see if I get his take on the situation. I did call my neurologist's office as well and informed them of what happened. The person I spoke to said," I think I should transfer you to the nurse so you can get some relief in the meantime." So at least I am on the righttrack.

As to seeing the same doctor my Mom sees, it is not the practice policy or anything, she just wants to keep our medical stuff separate. He does have a partner, though, and there is no reason I can't see him. This would allow me to switch drs, try something new, and be separate from my mother.

Right now, I am waiting to see what the neuro sways and will try to make an appointment with the other practice tomorrow.

Y'all are absolutely right. I do not think this dr knows how to treat either headpain or young patients. If I do not hear from his office tomorrow, I am definiytly switching. This is ridculous. Any new ideas for treating my pain have come from somewhere else. Plus, there has to be more to a visist than sticking your head in the door and saying "just refill the prescriptions." This has happened every time, even when i pointed out that the medications were starting to lose their efficacy.

My neurologist, the one who switched specialities, used to take care of all the pain control stuff as well. So did the neuros in Memphis and Alexandria. However, current neuro sent me to a pain specialist when he couldn't handle the amount of pain, which is fine.

I just need some relief. Hopefully the neuro will call back today or early tomorrow. I can at least ask for a referral to the other pain group.

Pain free days,
sailingm

SailingM,

If I were you, I'd be madder at his front office than him. He may not even have known you were there. They may never have told him. So, just take a deep breath before doing anything more drastic.

Yes, I'd be pretty upset too. I've had *almost* the same thing happen to me the past two weeks. The front office told me the doctor would be in with my (STUPID) NP visits and both times he wasn't. When I finally got to the front office, the woman who PROMISED me he'd be there was SHOCKED that he wasn't. She paged my doctor, asked where he was, told him that there was a patient who thought she was going to see him & fit me in for the day of Christmas Eve. She told me that his schedule is light but jammed. My appointment is at 9:00 but she told me to arrive earlier just to be sure. I told her I'd be there at 8:00 when the doors open. And you better believe I'm baking cookies for her!

Wishing you luck,
Rachel

Sailing,
I've been with my pain management dr. for 3 1/2 years now. I read the letter you wrote your doctor, and am extremely familiar with the combo you are on; other replacements that have helped; and different dosages that have personally helped me.
I just feel bad for your circumstances, as there are a lot more meds aside from your current med/dosage that s/he could try.
Feel free to message me if you'd like, so we can compare dosages or variations.
I've been familiar with all you have gone through for years, and am here in your court, along with the rest of this great team. Many of you are more like family by now!
<hugs>
T