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-   -   Medical Apathy (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/239331-medical-apathy.html)

jamie's mom 08-25-2016 01:44 PM

Medical Apathy
 
Please Help!! My daughter was seeing a Pain Management doctor for her RSD for the past 8 years. He is now retiring because of the new laws in Wisconsin on dispensing of pain meds. She had a Medtronic's spinal stimulator surgically implanted in June of 2015 after having 2 inserted that over 4 years that pulled out. After having the last one in for less than 6 months she had to turn it off because of the pain it was causing in other areas of her body. After x-rays it was determined that the leads were not placed in the proper place for the coverage that she needed. The operating neurosurgeon wanted to go and fish the leads up from the top of her spine. She was told by her doctor not to let him do it as it could paralyze her. The problem is now no one will see her for pain management as long as the machine is in but she can not find someone to take it out. This doctor who is retiring had raised her pain medication so high that there is one pharmacy in town that refused to fill her scripts because they didn't agree with her doctor. I do agree...they are to high. She needs someone to help her get off the opioids but no one seems to care. Today was the last straw when she went to establish a primary physician and they would not even see her because this doctor did not prescribe pain meds. She was not going to this new doctor get pain meds. She needs all of her other meds like anxiety meds, sleeping meds, gabapentin etc. They told her to go to the ER. OMG.....What is happening to the medical field. In the last month she has seen a doctor she waited to get into for 5 months at the UW Clinics. He dismissed her and said maybe he could get one of his neurosurgeon colleagues to take out the machine. He prescribed pain patches and some pain pills for a month. When she went to fill them the pharmacist called and the doctor cancelled the scripts. Now he will not even take a call from her or call back. He did call her pharmacy and prescribed 30 pills of anxiety medications of which she did not know about until the pharmacy called. She can not get in anywhere with the machine in and can't get anyone to take it out. Please help!!! She has called every where and is ready to go out of her mind. We are ready to go anywhere!!

CRPSbe 08-25-2016 02:34 PM

Quote:

Originally Posted by jamie's mom (Post 1221659)
Please Help!! My daughter was seeing a Pain Management doctor for her RSD for the past 8 years. He is now retiring because of the new laws in Wisconsin on dispensing of pain meds. She had a Medtronic's spinal stimulator surgically implanted in June of 2015 after having 2 inserted that over 4 years that pulled out. After having the last one in for less than 6 months she had to turn it off because of the pain it was causing in other areas of her body. After x-rays it was determined that the leads were not placed in the proper place for the coverage that she needed. The operating neurosurgeon wanted to go and fish the leads up from the top of her spine. She was told by her doctor not to let him do it as it could paralyze her. The problem is now no one will see her for pain management as long as the machine is in but she can not find someone to take it out. This doctor who is retiring had raised her pain medication so high that there is one pharmacy in town that refused to fill her scripts because they didn't agree with her doctor. I do agree...they are to high. She needs someone to help her get off the opioids but no one seems to care. Today was the last straw when she went to establish a primary physician and they would not even see her because this doctor did not prescribe pain meds. She was not going to this new doctor get pain meds. She needs all of her other meds like anxiety meds, sleeping meds, gabapentin etc. They told her to go to the ER. OMG.....What is happening to the medical field. In the last month she has seen a doctor she waited to get into for 5 months at the UW Clinics. He dismissed her and said maybe he could get one of his neurosurgeon colleagues to take out the machine. He prescribed pain patches and some pain pills for a month. When she went to fill them the pharmacist called and the doctor cancelled the scripts. Now he will not even take a call from her or call back. He did call her pharmacy and prescribed 30 pills of anxiety medications of which she did not know about until the pharmacy called. She can not get in anywhere with the machine in and can't get anyone to take it out. Please help!!! She has called every where and is ready to go out of her mind. We are ready to go anywhere!!

I'm so sorry to hear all this. But I agree, this "thing" needs to come out if it's totally useless.

Then it might be easier to find a doctor willing to take her and her CRPS on.

Littlepaw 08-25-2016 04:07 PM

Hello and Welcome Jamie's Mom. I am sorry your daughter is going through so much.

I can only imagine how frustrating this is. Is the unwillingness to take it out based on the risk of paralysis? I could see not wanting to do it then but perhaps the battery unit could still be taken out.

Is her current doctor aware of the difficulty getting further care? Did they have no recommendation at all?

I did best getting my surgical and treatment needs met by going to Houston, 3 hours from my home, where specialists in large academic centers were accustomed to challenging cases and not afraid of me. It was a pain, literally, but completely worth it. They had answers and help for me when no one else did. Traveling for care can make a difference.

Don't give up, there may be help yet. Did UW neurosurgery get a referral for consult? or could you just make the appointment with them? If they will not treat her, Mayo might be a somewhat nearby consideration.

Hang in there Mom. I hope your daughter finds relief and healing soon, :hug:

catra121 08-27-2016 03:55 PM

Where are you located in Wisconsin? Have you tried some of the teaching hospitals and stuff? If you are close enough...maybe you could try one of the hospitals in Chicago? It might be a hike...but if you could get someone to see your daughter and treat her...it might be worth the trip and possibly and overnight stay somewhere.


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