Originally Posted by SandyRI

Dear kathy d,

How horrifying. I am so sincerely sorry that you were so poorly treated. My sister (who has her masters in critical care Nursing from the University in Penn in Philly) recently told me that the nursing care at Hahnemann is simply awful - perhaps some of the worst you can get in the whole city. For example, the infusion pumps they use for their IV's are the ones that Penn got rid of 10 years ago. So tell me why Dr. S even practices there???? How can a man, a noted Neurologist, who is reputedly the best in the profession for RSD, associate himself with such an institution? And put his patients there? I have recently become familiar with another case of a patient from my home state that went into Hahnemann for the 5 day inpatient ketamine treatment and almost bled to death due to the horrific neglect of a nurse. His parents told me the difference between Hahnemann and the HSS in NYC, where their son has also been treated for his RSD under the care of Dr. Richman, is night and day.

I've never had more than 200 mgs. of ketamine at a time, and it's infused at a rate of 50 mg. per hour. I've have 26 outpatient infusions. Ketamine gave me my life back. Not at all a perfect life, but very much different than what it was. My head hurts every single day, and my shoulder and my leg, but I can move around and get stuff done and I've decreased the amount of meds I take. I haven't had any terrible side effects, but it could be that there's a huge difference in side effects between the low dose and high does treatments.

When you go off of high levels of Fentanyl you need to be treated - Dr. Getson took care of me for that. I do not know why Dr. S did not care for you, or one of his associates, or your PM doc, or your primary care doc. Withdrawal from strong opiod meds can be dangerous, and my sister recognized my symptoms and was instrumental in getting me to seek the help I needed. Even with meds to treat the withdrawal I still had a tough time for at least a month. I hope to never to have to touch the stuff again....yuk.

Your experience sounds like a total nightmare. If you live near Philly, and you are Dr. S - phobic at this point, you may want to see Dr. Getson over in Marlton, NJ, only 14 miles over the bridge. He knows RSD very well, is profoundly compassionate, and may have something else to offer you.

Please take care of yourself and never give up trying to get better, XOXOX Sandy

Originally Posted by Reddawn600

On my way to the hospital now, will be happy to share info with others if anyone has questions on the ketamine 5 day.

I would greatly appreciate prayers. I'm still somewhat skeptical but so very hopeful at the same time.


Dawn

Originally Posted by kathy d

Best of luck to you Dawn. I pray it all works out for the best for you. I would love to hear some good news today as I have been down in the dumps from all I just went through in the last few weeks. Nightmare would not be used to describe my life. Take care and let us know how you are doing.
kathy d

Originally Posted by kathy d

Dear Dawn,
I am in shock that you take 40 pills each day. It is horrifying that some doctor did that to you. I know for me I tried my darndest to wean myself off of most of them except a pain med because I felt with each day they were slowly killing my body. Now, after 5 1/2 years on heavy pain meds and all the other junk they tried on me my teeth have started to decay in my mouth (within the last month) and it scares me since I never had any dental problems and went six months at a time without cavities. I've had 2 crowns and about 7 fillings done since April 1st this year and owe my dentist $2,200.00 and I need a root canal for $700.00 now. Does anyone have any idea of any place that offers help for my dental bill or any future bills. I've tried everything here in PA to get help and no one does a thing about dental bills. Best of luck to you Dawn as you already had your infusion treatment. I pray you are doing well. Let us know how you are making out if you can. I am worried about you.
kathy d

Originally Posted by Reddawn600

Hi Kathy,

My life had pretty much become a nightmare before the ketamine infusion, now, I feel like I have my life and health back and haven't felt so happy in years. I truly wish I could do something to help everyone else more and spread the word about it because it has been a miracle for me.

As for the number of pills I was on, my main problem was not having a pain management Dr since I had moved from NJ to PA and then my RSD worsened dramatically over the past year. I didn't know much about pain management Dr's and didn't know I had RSD so I had everyone from rheumatologists to physiatrists and ER dr's prescribing meds for me. Obviously not an ideal situation at all.

I wish I had some advice for you on the dental issues but it's not an area I know anything about as I've never had any problems with it. I wish I could suggest somewhere to even look but just don't know.

I am actually still looking for a reputable pain management Dr. here in PA as Dr. Richman is too far for and too busy for basic things and I'm not yet sure if Dr. Schwartzman can help me with that but Dr. RIchaman did suggest I have someone local in case I need any nerve blocks or injections. Would you happen to know of anyone?

Gentle hugs,
Dawn