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
Quote:
Originally Posted by kathy d
Hi Dawn and All,
I have to tell you all about my bad experience last month in Philly at Hahnemann. While I was inpatient for 5 days with Ketamine infusion an idiot for a nurse put me on the commode and left the room with me there. Well, being as unconscious as I was I apparently got up or went to move onto the bed and fell flat on my back and hurt my neck and back. They let me go from the hospital unconscious, I don't remember the first week back at my home afterwards, I've been to the ER four times (and admitted once) in the last month, lost ten pounds from severe vomitting and diarrhea, the infusion was the most terrifying experience of my life (I thought the nurses were trying to kill me), and I've just spent a month flat on my back with no help in bed. I tried the first booster this past Thursday and barely got home only to have severe chest pains and thought I was having a heart attack. EKG and all are good but the ketamine did not work. Dr. S said "I don't have anything for you." Sent me home and canceled the rest of my treatments. Oh, and 24 hours after I went in for the infusion they took off my fentanyl patch and I spent the next two weeks having a nervous breakdown from the withdrawls!!! I just spent a month in hell. My pain is now 1,000 times worse than before and none of the pain meds even work now. I just started to have about 20% pain relief today because I had to go back on oxycodene. My neck and back are killing me as my entire body. I was down to using one cane before treatment and now are back in wheelchair using both canes again and barely able to move to get out of bed. I feel like I reverted back to five years ago when it all began. Dr. S wants me to go back and have 5 day infusion again and there is no way I would ever do that again. I just want to warn everyone to make sure they know about this powerful drug. I researched it for 3 1/2 years and never heard of all the mess I went through.
I thought they should have given me PT while I was in the hospital but they left me there in bed for 7 days straight with none of it. I found out through a home aid two weeks ago that for every day you lay in bed in a hospital you will spend 3-5 days recouping at home. Well, I've been in bed for a month straight now. Today is the first day I can even sit up on computer for 5 mins. Just be careful. I found out that once you have the treatment and get hurt it comes back worse than before. I could just shoot the nurse that did this to me. She really ruined my life. A social worker said I would qualify to go to a nursing home now. I am 47! I would lose my house, my son, and my credit would be ruined. I am having to look real hard at doing it since I just can't take of myself and have no one here each day. If it were not for my faith I would be gone by now. God wants me here to do more for Him. Good luck to all,
kathy d
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