Originally Posted by keep smilin

Hi Sandy...

Thats aweome news about your RI friend..Plz. congrats to him when you can and his wife..also keep us up to speed how long he has his pain relief....

Yea, I have exausted all of my other attempts for help to this point.... UGH/... yes, I thought it was strange also that the insurance company called and chatted with me..She is from another area of the company..When I inquired she explained this is another part of my benefit that when a person is diagnosised with a serious illness they try to help you out and monitor you both physically and mentally... hummm..lets see the cash but she said that is not part of her obligation there...she has called several times, today being one of them... As far as the 10 day outpatient..great thought..I did ask about that instead and Dr. S said he felt I would not benefit from the low dose so he zoomed right past that...I thought it too would be a possibility...Yea..I 'd give my front teeth to be able to go back to work..I have mentioned that to the Dr. and plan to mention it in my negocations too...it's lonely at home..

Jim..To clearify..the 5 day in patient in the US is done @ Drexel..the Heineman Hospital..although it is a "sleep" but not a coma, it's the moderate dose level ..The coma, higher dose of Ketamine is done outside the US in Germany, possibly Mexico still...

I love visiting with you all..Thank you for such thoughtful questions and concerns....

Sleep well and rest without pain...

Hugz, Kathy

Originally Posted by Wilbyfree

Sooooo, exactly what is her obligation? Is it like, how is your pain today, and how does that make you feel type thing? Tell her exactly how you feel every moment of every day, tell her about the debilitating pain that you have to live with because they will not give you your American Right, tell her the effects this has on you as a wife, mother, human? Tell her they euthanise dog's in America for this type of torture!!! (No punt intended, I love my dogs).
ask her if she has a family, a job, a life, ask her if she enjoys her freedom to choose, ask her how she would respond to your situation. Tell her what she needs to hear not what she wants to hear.

Jeanie

Originally Posted by fmichael

I would swear that someone mentioned, about 5 - 8 weeks ago, that Dr. Schwartzman's German operations were no more. Does anyone recall?

And let's not underestimate the abilities of our favorite Philadelphia doctor to be delivering what he believes are truly therapeutic doses, especially in an ICU unit. Granted, people may not be intubated, but I am curious as to the doses that - for instance - Sandy's friend was getting.

And don't get me wrong, he's one of a very few doctors I've had in whose hands I would willingly put my life. (Just with my glaucoma, ketamine isn't an option. A "nontransmural" MI a few years back didn't advance the cause either.)

Mike

Originally Posted by SandyRI

It is my understanding that the Germany facility, where the ketamine comas were performed under the care of Dr. Rohr (in cooperation with Dr. S.), has been closed indefinitely due to one death and one paralysis, both attributed to MRSA. They are still doing the comas in Mexico, that program is in cooperation with Dr. Fitzpatrick.

I asked my friend's wife what his daily dose was - she didn't know. I will try to find out when he comes home and will post that info if I can get it.

Kathy - keep trying. Go for whatever you can get. There is a woman in our support group who goes to the Beth Israel in Boston for really low doses of ketamine only once every 4-6 weeks - it took her 10 months to get up 100 mg. It has changed her life. It isn't a cure for her. But things are so much better. She can walk again. So try to get whatever they will approve!! Don't let up on them.

I am leaving for NJ for my ketamine treatments in 4 days....feels like I have been waiting half a lifetime for this to happen.

Love and peace, Sandy

Originally Posted by Wilbyfree

Sooooo, exactly what is her obligation? Is it like, how is your pain today, and how does that make you feel type thing? Tell her exactly how you feel every moment of every day, tell her about the debilitating pain that you have to live with because they will not give you your American Right, tell her the effects this has on you as a wife, mother, human? Tell her they euthanise dog's in America for this type of torture!!! (No punt intended, I love my dogs).
ask her if she has a family, a job, a life, ask her if she enjoys her freedom to choose, ask her how she would respond to your situation. Tell her what she needs to hear not what she wants to hear.

Jeanie

Originally Posted by Jimking

So very true!!! (see bolded above). One of the sticking points with my wife's older doctor records,for the upcoming SSDI judgement, is his low amount of pain control he provided for my wife. Cymbolta and, this is true, one vicodin a day that my wife broke in two, one for the morning and the other half for the evening. She ate advil all day. Pathetic!

Originally Posted by Wilbyfree

You said it....he provided. Did she have a choice in that matter. What were the side effects of her managing that pain without the medication. That should not be relevant as she had no choice in that matter. Pathetic is putting it lightly, Express the impact on her life due to the fact that she was not able to properly control her pain. I will pray for you and Suzy for a positive outcome. This should just be the least of our worries.

God Bless

Jeanie

Originally Posted by Jimking

Thanks, Wilbyfree! The side effects that I could see was the spread of RSD from her arms into her legs and feet. Swelling in her hands, knees, red and blue feet and toe nails that now grow out of her feet on a 45 degree angle. Her mental state throughout wasn't good. Many of her earlier doctors focused on her mind instead of her pain. One particular doctor's record reflects this when he states that her psychological issues is effecting her physically. I will say my wife took both lyerica and Cymbalta and it made her feel very bad and stopped using them. Having known my wife for 30 years I can say without a doubt that the pain was effecting her mind, not the otherway around, I am absolutely convinced of this and was the driving force that got me motivated to go to every doctors visit with her.

When my wife first contracted RSD she kept it a secret from me for two years, fearing I may leave her. The first four years she had very little treatment and was ignored by many doctors. Another words her early management of her pain forced her to go to many doctors which opens another can of worms for those with this desease.

Originally Posted by Jimking

Thanks, Wilbyfree! The side effects that I could see was the spread of RSD from her arms into her legs and feet. Swelling in her hands, knees, red and blue feet and toe nails that now grow out of her feet on a 45 degree angle. Her mental state throughout wasn't good. Many of her earlier doctors focused on her mind instead of her pain. One particular doctor's record reflects this when he states that her psychological issues is effecting her physically. I will say my wife took both lyerica and Cymbalta and it made her feel very bad and stopped using them. Having known my wife for 30 years I can say without a doubt that the pain was effecting her mind, not the otherway around, I am absolutely convinced of this and was the driving force that got me motivated to go to every doctors visit with her.

When my wife first contracted RSD she kept it a secret from me for two years, fearing I may leave her. The first four years she had very little treatment and was ignored by many doctors. Another words her early management of her pain forced her to go to many doctors which opens another can of worms for those with this desease.

Originally Posted by Wilbyfree

Jim, I do not find it uncommon to be underdiagnosed and under treated at the beginning stages of this illness. For three years I worked 10 hour days, 2 Vicodin, 1 Zoloft. I suffered immensely from this. I mentally broke down due to the pain. My doctor knew what I had, but did not know how to treat it. He then, just to keep me doing "jumping jacks" prescribed me Valium. (that was a combination). Now they know that if they respond quickly with injections, there is a possible remission. But five, ten years ago they did not know that. Focus on the progressive effects mentally and physically this has had on your wife, the slow decline, the losses that she had to endure and may still have to endure. I was not depressed until the unrelenting pain began to take away all of the things in life that I loved and was working for. We have to make choices, moral choices as to what is really important, we have to make lifestyle changes in order to cope and stay saine. We have very little room for error in our days. Some days we don't even have that. In the winter, I do not leave the house, it is just not possible, that is not a choice for me. And then we have to accept all of this and try to convince ourselves that we are okay. We cannot give something that we don't have.

Best Wishes,

Jeanie