March 23, 2005

No Luck in New York

My trip to New York was a bust. It was a very long day only to be very disappointed in the end.

We left Baltimore at 7 AM. We arrived in New York just about noon. After fighting traffic and being in pain my nerves were already shot. We found a parking building at the hospital, and found it was going to cost us $52.00 for 4 hours.

Once in the hospital they sent me right away to get x-rays. That was the quickest part of the day. I took them back to the doctor's office and then we waited about 3 1/2 hours to see the doctor. He looked at my films and said there is nothing anyone here can do for you.

Let me start by saying those doctors do not believe in Core Decompressions and because I have had so many they said my bones are SWISS CHEESE. After their explanation I understand what they are saying, but that doesn't help me now. My bones that are already dead are now even more frail from all the holes drilled in them. The doctor did say he would look at new MRI films and suggest what he thought may be my next step, but they wouldn't do it. He also said I might as well come to terms that I will always be on pain medicine. He said my AVN was bad but having Osteoporosis as bad as I do, only makes matters more complicated.

Needless to say by the time we left the hospital at 6 pm I had had it. It was rush hour in New York. I was upset and it wasn't a pleasant ride for my husband at all. I must say he is a real trooper and never complained once. He kept telling me we would find someone to help me. We arrived home a little after midnight and both dropped into bed.

Please think long and hard before having more than one Core Decompression. Ask the doctor what this will do to you if you do have to have replacements later down the road. If only I had known.

Well back to square one, I won't give up.

Posted by Karen at 04:22 AM | Comments (0)

March 06, 2005

Getting Excited

I am starting to get so excited about my trip to New York next week. You know it's bad when you get excited over seeing a doctor. All I keep saying to myself is I would not have won the appeal to see the doctor for it to be a bust. I have all my paperwork and films ready. Now all I need is for the 15th to get here.

My pain has really not let up at all. My Rhuematolagist has written a script for Avinza, a new medicine for me to try. He said it is a different form of morphine and it may help me more. I have been on the same strength of morphine for over a year and it is no longer helping at all. I am getting it filled tomorrow, so let's pray it helps. If it helps maybe I will be able to get some sleep. I forget what that is like. The pain is so bad at night that I don't think anything will help.

I just made our summer vacation reservations, and I want to be able to enjoy it this year.

I will keep you posted.

Posted by Karen at 08:27 PM | Comments (0)

February 28, 2005

Finally an appointment

Well it seems like it has taken an eternity but I finally have an appointment with a doctor in New York, at HSS. I will leave Maryland on March 15th early in the morning and my appointment is at 4 PM. I am praying that this is the answer I have been praying for.

I have been in so much pain lately with all the snow and weather changes. I just want to make a doctor understand that waiting is not always best. I would rather have the replacements NOW than wait and stay in pain. I would rather enjoy my life now while I am younger than wait. OK so what if I do have to have another replacement in 20 or so years. I would rather enjoy my life now while I am still young. This is what I am hoping to get across to this doctor. From what I am told he believes the same.

I still have the right hip and both knees that need to be replaced along with something done to the left femur. I don't want to live on pain medicine and wait for collapse. I want some of my life back now.

The morphine has quit working and I don't want to have to keep raising the dose. So keep your fingers crossed that this will be the answer to a long awaited prayer.

Posted by Karen at 07:12 PM | Comments (0)

February 12, 2005

Another Doctors Opinion

I went to see my Rhuematologist on Friday and he has yet another take on this whole matter. He wants me to see a new pain doctor instead of the one that I had seen. He agrees that I should go to HSS in New York for there opinion. I am glad someone is finally listening to me.

He x-rayed my hip and said there is some swelling and if the pain in the groin has not changed by the end of the month we will do an MRI. He really thinks it's OK, just trauma from the fall. Oh and he insisted on the flu shot.

I have had little to no sleep in the last couple of weeks and my body is rebelling. There has to be an answer to this.

Well, I am off for a soak in the hot tub. At least I am pain free for about an hour.

Posted by Karen at 02:39 PM | Comments (1)

February 08, 2005

Same Old Thing

I haven't written in such a long time because I seem to keep repeating myself. I have been in constant pain for the last couple of months. I have been to two (2) new doctors and both have said I am too complicated for them and sent me on my way. I saw a pain specialist who seems to think that this is something that can be fixed with little to no meds.

Then last week I took a very bad fall on the ice landing on my replaced hip side. I had x-rays of the knee but they didn't x-ray the hip. I have been in horrible groin pain since. I am calling my family doctor today to see if we can get an x-ray of the hip.

It looks like I may have to travel outside my home state to see another Ortho. I am in contact with my insurance company now to see if this is possible. There are 3 good doctors in my state for AVN, but they all believe in the same treatment and that is repeated Core Decompressions. I have already had 7 and in my opinion each one is weakening an already dying bone.

On top of all of this I was just diagnosed with severe osteoporosis. I have started taking Forteo injections daily to help rebuild the bone. The pain I have been in is unreal.

I try to put on a happy face and not let on how bad it is but that is becoming harder and harder to do. I only sleep about 2 hours a night and that has been for the last 6 or so months. That is taking it's toll on me too. Sleeping pills don't work. Tthe pain outweighs them. I am still on the same pain meds I was on a year ago and my body has built up a tolerance to them so they are barely working.

I feel so lost and really need a good doctor, even if it mean starting from from the begining.

Posted by Karen at 06:23 AM | Comments (4)