The neurologist is trying to postpone my surgery!!!!!!1

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The neurologist is trying to postpone my surgery!!!!!!1

Post  KimbaK on Wed 23 Apr 2014, 11:43 am

I hurt so bad right now I can hardly see. I feel like crap and that makes me want to rip people's heads off if they speak to me. I've been in pain so long I can't remember what the absence of pain feels like. Does it even exist? What am I supposed to do when the medications don't work? I've been awake since 3 am with this pain. Same old, same old. Suffer quietly.

I got a call from the surgeon this morning. My neuro called him and wants to postpone the surgery because she wants me to have more neuroscience testing. What the hell is that???? I had the psych eval as she requested. I wonder what I did that made her do this? I hate this doctor. She is so fired as soon as I can get this situation dealt with.

I have a call into the neuro who hasn't called me back even though she knows I've called several times. I asked the surgeon if he will do the surgery even if she is not in favor at this time. He kind of waffled around so I don't even know if there's any hope of having it done Friday. I called back to ask if he will do the surgery if I fire Dr. Blake if she and I can't work out this problem. I'm still waiting for an answer on that.

Why is this happening to me? First it was the insurance, then the psych eval, now this. I do not have any unrealistic expectations, but I am positive this will work for me. Why is she trying to take it away from me? This is the first hope I've had in 20 years. I just don't understand. This is just cruel to try to pull the plug now. One way or the other, Dr. Pamela Blake is fired.

I have been crying all morning. I'm out of Relpax, my insurance won't pay for it no matter what. My prescript assist program person never ordered my last refill before I had to reapply for the program. I decided to just do it my self, so the meds are ordered and I'm current with the application, but I'm still out. It has cost me $100 for 2 Relpax which I have paid but I have no money right now.

How can the stupid neuro do this to me? What does she want from me? More office visits? She can't order me into psychotherapy just because she can't figure me out. Of course my personality is different at times. When I feel ok I'm cheerful, when I'm starting to hurt badly I'm sad and quiet, and when I hurt like this I am so down that I barely speak or move. She won't even call me back. Stupid woman does not know that I'm going to call her every freaking hour until she talks to me. I'm not letting her smash my hopes. BUt why does everything have to happen when I'm in so much pain that I've been pounding my head on the wall? I'm tired of having to fight because of migraine. Fight for diagnosis, medication, then medication changes, always fight inER's (where I will never go for a migraine again), fight insurance and now I have to fight the damn doctor who recommended it. I feel like I have no more fight left in me. What am I supposed to? This isn't living, this is existing in survival mode. I just don't understand what I am doing wrong.

Kim (who is slowly losing her and wishing I could lose consciousness)

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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  7777Trinity on Wed 23 Apr 2014, 3:46 pm

Kim
I am so sorry that this is happening....
The Neuroscience thing, it has to do with your brain and central nervous system. Sometimes doctors want you to try a Tens Unit implant that send an electrical impulse to the brain when pain starts. The theory is that it will "derail" the onset of migraine. The people that I know who have tried it had it removed within 3-4 months because it didn't help or malfunctioned.

As for why your Neuro pulled the plug at the last minute is beyond me. I think since insurance has already approved, you need to tell your surgeon you want this done whether the Neuro changed her mind or not and you will get a new Neuro doctor.

It's horrible to have that hope pulled out from under you and I am so upset for you. I prayed for you today...
I am in my 3rd appeal with Anthem BC/BS trying to get my surgery approved, it is so frustrating.

I had a terrible run of migraines and I understand your pain and feeling like you have lost yourself. Hold on Kim and I will keep taking your name to the Throne of Grace for this surgery.

Trinity
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Hagning on by my fingernails

Post  KimbaK on Wed 23 Apr 2014, 4:25 pm

Hi Trinity,

This has been a lousy week. I just got a call from Neuro's office and she wants to see me tomorrow at 4:15. I said I'd go, if for no other reason than to explain that I plan to go thru with the surgery no matter what.

I have a call into surgeon's office to ask what my options are even if neuro doesn't want to approve surgeon. I'm waiting on a return call.

I think that doctor is crazy and I hope she doesn't have the ability to block my surgery. I think (hope and pray!!) that the final decision is the patient's. I have an external TENS unit that I have used many times and it doesn't do squat. I'm done messing around. I want my life back and God help the person who tries to stand in my way. My pain management team is willing to handle my medications after the surgery. So if neuro refuses to do medications after surgery, I have another option.

I'm so sorry that you are having to fight with insurance. From a fiscal point of view, it is ridiculous that they cannot see the long-term benefits to their own company when a migrainer finds a more effective solution to their pain. It saves them money. From the more important humane POV, what right do they have to deny an otherwise healthy vibrant person the relief that will drastically improve quality of life. They can all go to ****.

I wish I could make this better for you. I am praying for us both. I know God says no sometimes, but surely not this time. I am just going to pray morning, noon, and night. This is going to work out for both of us and we are going to be better than okay. Thank you for praying for me. I feel like I am alone in a very dark place right now and its hard to see even the smallest ray of light. You made a huge difference today!

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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  7777Trinity on Wed 23 Apr 2014, 6:25 pm

Kim
You are not alone, although often it feels like we fell down a deep well and can't get out. Most Neuros don't recommend Nerve Decompression surgery because they get kickbacks from the Pharmaceutical companies. Relpax 40mg is what I take, its $137.00 for 4 pills here and we have a $1,500.00 prescription deductible, so I understand completely about that. That medication is still under a 5 year patent, so no one can make a generic of it until the patent runs out. Its their way of getting the big bucks.

If you have Xanax or some kind of anti anxiety medication, can you take a couple of those to help you sleep with an icepack on your head? That's what I do because I cannot afford to buy more than 4 and if I am lucky 8 Relpax in one month. That leaves about 10-12 other migraine days that I have to use Stadol Nasal Spray and Xanax for with Phenergan.

You are not going through this by yourself and I will keep praying for God's mercy and intervention for you.
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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  30yrsofheadache on Thu 24 Apr 2014, 6:49 am

Kim, I hear you and feel your pain. I do not understand why Dr.s do these things. I really hope the surgeon will carry on with the surgery for you. Spring is always a bad time for a lot of us (including me). I have been trying some crazy remedies lately affraid .

My Dr. is not returning calls about my rescue med. I am worried that she doesnt want to go to the trouble of doing the extra paperwork attached to it. I see her next week and am praying she will go ahead with it then. I have been doing so much more when I am able to use this med. I am out now and so worried if I have a really bad one I will end up in ER. My last experience was not good. I am praying for you and Trinity to get the surgery.
Hugs,
Cindy

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its ok - surgery on schedule

Post  KimbaK on Thu 24 Apr 2014, 8:39 pm

I saw dr today. She had what I call a pre- op visit with me. I'm having surgery at 10:30 am Friday. For those who pray, please think of me. For those who don't feel free to break out the voodoo chickens. If all goes well, I may be pain free in less than a month. I'll keep posting my progress.

One small step for the surgeon, one giant leap for migraine kind. Cool 

See you on the other side.  Very Happy 

Limbs

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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  tortoisegirl on Fri 25 Apr 2014, 6:13 am

Awesome! I'm glad they are allowing you to go forward with the surgery. Good luck today! Best wishes.

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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  30yrsofheadache on Fri 25 Apr 2014, 6:42 am

Good luck today. Sending good thoughts for a speedy recovery.
Hugs,
Cindy

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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  7777Trinity on Fri 25 Apr 2014, 7:06 am

Kim
I am so HAPPY!! As I write this you are probably in pre-op getting ready to go in. You must be a ball of nerves and excitement combined Smile

I am dancing my happy dance for you today and will keep you in my prayers that your recovery is fully complete and the monster is gone forever!!!!

((((HUGS)))) Trinity  sunny 
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im cursed and probably damned

Post  KimbaK on Fri 25 Apr 2014, 8:57 am

So I get to the hospital at 8:30 as planned. Lo and behold, I'm not on the schedule. No one can help me and they pretty much don't care. I page the surgeon and he never answers. I just spoke to his office manager and they cancelled me late yesterday because they never heard from the Neuro. Today the get note from Neuro approving it I have to res schedule.

I explain that hospital confirmed with me yesterday and collected my copy. I pulled my kid out of school. Paid for hotel and haven't taken any pain meds in anticipation of surgery. I can't afford this. She says she'll page doctor and call me. So here I am in the waiting compositing to be til that I'm 100% screwed before I give up and leave.

I feel broken. I'll get thru this but I feel broken and hopeless. I did everything right followed l the rules and it doesn't count for squat. I don't count & the people who can help me don't care. If I had any other surgeons I would walk but I don't.

This is a nightmare and I'm not asleep.

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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  7777Trinity on Fri 25 Apr 2014, 10:15 am

Oh God no! Kim I have been praying all morning for you. Please let us know what happens today!

Trinity
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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  tortoisegirl on Fri 25 Apr 2014, 7:53 pm

Wow. Thats all I can say. So sorry you're having to deal with this, and hope you can get rescheduled soon. Best wishes.

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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  Migrainegirl on Sat 26 Apr 2014, 6:41 am

So bummed for you! It sounds like a beaurocratic screw up. But really, it's such a problem for people who already aren't well and have trouble coping with it all. The saddest thing is that the medical people who should care and should being trying to fix things are not.

This is why Americas health care system is screwed up. It's totally disjointed and it's the people who are sick who have to find a way to piece it together to get the treatment they need.

I hope they get you rescheduled ASAP. Hugs!
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Re: The neurologist is trying to postpone my surgery!!!!!!1

Post  Platypus on Mon 28 Apr 2014, 12:26 am

Hope they reschedule you ASAP Kim!
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