Not doing well

[Linda]

Hello,

I was doing great until a week ago Tuesday when I started physical therapy. All they did was ultrasound and some gentle massage and about 4 hours later the pain started and I have been in extreme pain since then. Last weekend the pain got unmanageable. By Tuesday my blood pressure went up to 205/133. I went to the emergency room and they started an IV and gave me 4 shots of dilutod(sp?) through the IV and put a 50mcg Duragesic patch on. I had been throwing up really bad and so they gave me phenargan and another drug to counteract that. I went to TBI Wednesday morning and they wanted to do a Myelogram that afternoon but they couldn't because of the Phenergan I had been taking for the nausea. Anyway, they are going to do a myelogram tomorrow morning and are looking for a hematoma or a problem at the disk above or below the C5/C6 and C6/C7 levels I got my artificial disks. The pain started across the upper back and now it has gone down into the arms and is especially painful in the left arm and shoulder. I am very discouraged. The Duragesic patch has knocked the edge off the pain somewhat but I feel so drugged. I don't know what I am going to do if I need more surgery to fix whatever the problem is. I don't know if a US doctor will touch me or will even be able to. I can't afford to go back to Germany. As many of you know, I have ADR at 4 levels. What do I need to know about compassionate use exemption?

Linda

[ReachtheSummit]

Linda,
I just wanted to let you know of a rare condition I developed following ADR that mimics your symptoms just in case they don't find anything. It has many names, Long Thoracic Nerve Palsy, Brachial Neuritis, Neuralgic Amytrophy Parsonage-Turner syndrome. The symptoms are sudden onset of severe upper back/shoulder pain often only heavy narcotics can even touch. Lasting for a few days to several weeks, then lessening pain but muscle weakness. Mine led to a severe winged scapula and weak left shoulder. The preceding events to this condition are viral illnesses, vaccinations, surgeries etc. It's exact etiology is unkown. It was explained to me that it is basically a virus has gotten into the nerves in the brachial plexus, which for me not everyone, caused paralysis of the anterior serratus muscle. People do recover from this condition although it varies. I had to see a neuroligist before anyone could figure it out. I have no idea if this is helpful or applies at all but I read your post and saw the sudden onset of upper back/shoulder pain and recognized my own syptoms.

[Harrison]

Linda, I am beyond words right now and can not even express the words to offer support! Your friends here care about you, our prayers are with you.

Jenny, pls let us know how you are doing in a separate (or previous) topic - you've been through a great deal and I hope you are better.

[cervie queen]

Linda: It sounds like a smart move to have checked into the ER. The blood pressure is especially dangerous. I hope that by now your pain has quieted down and TBI can get to the root of things.

[andromeda1111]

Linda

Sorry to hear you are going through a rough time hope everything gets better soon for you.

Laura

[Nichole]

Linda,

I'm sorry that you are suffering. My prayers are with you. Your not alone.

[Linda]

Thanks to all for your kind words of care and concern. I had my myelogram this morning. What a rotten procedure to go through on Valentine's Day. Oh well. The radiologist did tell me that there was not a hematoma and that was good news I guess. He has no idea what is causing the pain. I have a little extra pain in rear and legs and shoulders tonight. He said it is from the extra dye in the spinal canal. The radiologist said he needed to study the CT scan in greater detail, but it didn't look like the problem was a hematoma and since I had pain in both arms it was probably not due to a root problem. Jenny, thanks for sharing the info you shared. I will run it by the doctor at TBI Wednesday morning when I go in to see him. Thanks again for all the kind words of encouragement.

Linda

[annapurna]

Linda,
Sorry to hear you're going through such difficulties. A good thing you live near TBI where they can really investigate your problem. Have you also e-mailed Dr. Bertagnoli about your problem? The more minds the better with these "mystery pain" issues. Please let us know what your TBI doc says on Wendesday. In the meantime, I'll be sending lots of prayers up for you.

Hang in there!

[Linda]

Yes, I emailed Dr. Bertagnoli. Attached is Dr. Fenk-Mayer's answer:

Dear Mrs. Roberts,

we of course are concernd on the developement.

Most important now is to get a fresh X-Ray:

Most likely is just a functional problem like a blockade, which will wean.
Bone spurs etc cannot be the reason.
Rare, but possible is acute subsidence of the implant - this is why we need fresh X-Rays ap, lat and flex/ex - I am sure Dr. Guyer will obtain those.

If these are non-conclusive, and the pain does not stop by itself, we recommend an MRI (which will show adjacent segments without artefacts).

Please keep us informed.

Yours respectfully
Dr. Andrea Fenk-Mayer
spinal surgeon
consultant with Dr. Bertagnoli, Straubing, Germany
www.pro-spine.com
fenk-mayer@pro-spine.com
new fax: Germany - (0) 180 540 252 547 79

The pain level is better today. I am not sure why, but I will receive it and be glad. I go back to see Dr. Guyer in the morning. I will be surprised if he has any answers though, after speaking to the radiologist yesterday. I will let you know what I find out. Thanks again to those of you who have written expressing support.
I do live very close to TBI and if anyone on the board goes to the Docs there and needs a ride from the airport or a place to stay, I would be glad to help in any way I can. We have an extra bed and bath but we have a 2-story home and you will have to be able to do stairs.

Blessings,
Linda

Linda