Ketamine Infusion @ HSS Nov. 1, what would help others?

wswells · 10-25-2010, 07:56 AM

Quote:

Originally Posted by gabbycakes

Dawn,

I am so sorry to here of your car accident. I hope all works out there.

As far as the boosters with Dr. Schwartzman they are given across the street from Hannahmein Hosp. in his office area in a private infusion suite. The area very nice the TV is on,softly, the enviroment is quiet and everyone gets there own area sort of speak you don't even go in the hospital at all. I did many boosters with Dr. Schwartzman in addition the facility is clean, the nurses are wonderful and I never had a problem. Why he practices out of Hannahmein I have know idea.

Keep us posted

Gabbycakes

This question goes out to all, I saw Dr. S. In Philly at Thomas Jefferson Hosp., He was great, I even went back and saw him a couple years later and he was still great. I then heard he was asked to leave Thomas Jefferson because he seemed to somebody that he was testing different treatments on people Trials) Without the patient knowing , some got the real med and some got placibo, I know he told me I was getting the real stuff because I had flown in from Florida. He was great for me at those times, then a couple of years later I was told he was asked to leave, so he went over to Hanneman, does anyone know if this is true? He seems to have changed according to these boards here, and what he's doing is scaring everyone with the rotten care at that Hosp. I don't get it. Any replies?
Your friend Wendy

kathy d · 11-11-2010, 02:05 PM

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

Reddawn600 · 11-11-2010, 07:59 PM

Quote:

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

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

kathy d · 11-08-2010, 06:48 PM

Hi Sandy and All,
Thank you all for your kind words and support...I am NOW finding out how incompetent Hahnemann Hospital is. I contacted them today to file a complaint against that nurse that ruined my treatment (and my life). I have to talk to someone tomorrow there. They don't want to speak to me since they know they are really at fault. I am trying to get the name of the nurse and have her suspended AND I will be contacting the State Board to have her RN taken away. I was horrified to hear the story of someone almost bleeding to death there!! I told the person there today that if that RN was doing that to me then what else was going on there that she or others were doing and they were soooo rude to my family who had no idea they weren't supposed to wake me or bring me a drink from the cafe??? How would anyone know if we all were not told?? I have no idea why Dr. S. just pulled the pain patch off and I swear I was dying for over two weeks and found out I had a hypnotic break from life. That coupled with not remembering the first week back and then once I realized things not wanting to live through the severe pain and mess. I can understand what was said by someone not wanting to live because we get soooo tired of fighting the pain and other people for the little help we do get. The fight is too much most of the time. I try not to think about it otherwise I get so depressed anymore. I am 1,000 times worse now than before the treatment. I have lost so much respect for Dr. S and his staff too. I did not have a good experience at the infusion suite either. One nurse was really rude to me on the telephone and then there in person she was even worse. I could barely situp when I got there and asked for somewhere to lie down before I passed out and she said "Oh, we don't have anywhere for you to lie down." I could have screamed. It was a horrible experience for me all around. Good luck to everyone and I pray for a lower pain day for all of us.
kathy d

Quote:

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

Truffle · 10-26-2010, 03:01 PM

Quote:

Originally Posted by Reddawn600

I have been fortunate enough to have my ketamine infusion moved up to November 1st at the Hospital for Special Surgery with Dr. Daniel Richman. I know I have spent countless hours searching online and asking for information on the treatment, protocol, expectations, etc/

What I would like to know is what I can give back to this community who has been very supportive of me. Is there anything in particular anyone would like to know, have photos of )if allowed) etc.

I wish more then anything that I could do more to further understanding of RSD but to be honest, I'm struggling right now as a single mom with 3 children and an amazing fiancee just to get through all this and pray there's light at the end of it all.

If there is anything I can do for anyone, questions I can answer, etc, please feel free to PM me/

And yes, I am scared to death of how the treatment will go and what to expect. I already have my boosters set up in Philly with Dr. Schwartzman in Decemeber and feel extremely fortunate so please, let me help you if in any way I can.

Dawn

Hi, I am very newly diagnosed with RSD and am researching the ketamine infusions. I got a copy of the ketamine docs list and in particular was interested in the NYC area possibilities [I am out of state so am exploring what sound like the best options, I guess wherever I can get in?]. I have read old posts that HSS was not taking new patients, but is that not the case if you [Dawn] are scheduled for an upcoming infusion?

I'm looking for some basic guidance for how to go about this -- such as, I have heard good things about HHS and St. Luke's, a few nightmare stories about Philly, and that's about it; which others should I look into?

I have a consult scheduled with Dr. Kirkpatrick in Tampa to discuss the three-day outpatient infusion, though it sounds like those done in NYC and in Philly are 5-day in-patient, so I'm not sure what to pursue? Anyone had success with that particular treatment or know of anyone who has gone to the RSD Institute?

Do I just need to start calling and see if I can set up an initial consult? I also read on other posts how people had submitted applications to get on a list? I'm not sure of the protocol for making this happen.

Anyway I'm rather ignorant of how to proceed so any suggestions would be helpful. Thanks much!
T.

Reddawn600 · 10-27-2010, 02:18 AM

Quote:

Originally Posted by debbiehub

Dawb,
I had my ketamine infusion with Dr Richman at HSS. He was great as was the staff. You are in good hands there! It did not work for me but I did not have the burning or sensitivity at the time - which is what ketamine works best on. You will not be able to do PT during the tx. You will be in bed with a catheter. Most of my experience was fine. I was tripping but it wasnt scary. I did make some phone call in the middle of the night to family- no idea how I dialed them but I did....IF you have any questions. please ask

Debbie

Quote:

Originally Posted by Truffle

Hi, I am very newly diagnosed with RSD and am researching the ketamine infusions. I got a copy of the ketamine docs list and in particular was interested in the NYC area possibilities [I am out of state so am exploring what sound like the best options, I guess wherever I can get in?]. I have read old posts that HSS was not taking new patients, but is that not the case if you [Dawn] are scheduled for an upcoming infusion?

I'm looking for some basic guidance for how to go about this -- such as, I have heard good things about HHS and St. Luke's, a few nightmare stories about Philly, and that's about it; which others should I look into?

I have a consult scheduled with Dr. Kirkpatrick in Tampa to discuss the three-day outpatient infusion, though it sounds like those done in NYC and in Philly are 5-day in-patient, so I'm not sure what to pursue? Anyone had success with that particular treatment or know of anyone who has gone to the RSD Institute?

Do I just need to start calling and see if I can set up an initial consult? I also read on other posts how people had submitted applications to get on a list? I'm not sure of the protocol for making this happen.

Anyway I'm rather ignorant of how to proceed so any suggestions would be helpful. Thanks much!
T.

Hi T,

From what I have heard and all my research told me, Dr. Richman and Hospital for Special Surgery is the best of the best in NY. I actually live in PA but travel to NY for Dr, Richman and am happy to do it. I actually got in to see him by accident in a way. I had scheduled an appt with a neurogist there before I was dx with RSD amd had hoped to get helped with what I thought was failed neck and back surgeries. As soon as the neuro had spent about 15 minutes with me, he walked over to Dr. Richman's office to see if he could see me immediately. Both Dr's were apparentely shocked that none of my former DR's had ever diagnosed me with RSD as they felt I was severe and rapidly deteriorating.

So, that's kind of how I got lucky and got into see Dr. Richman. The severity of my condition is what I supposed got me bumped up so quickly for the infusion date. Dr. Richman also made the contact with Dr. Schwartzman for me for the boosters and his staff really has handled things incredily well and quickly.

SO..if you can't directly get an appt with Dr. richman, perhaps try settiing one up with someone else in their department at HSS fiirst?

I do also hear Dr. Getson is very good and I have also seen quite a few other's mentiuoned in these forums.

Best advice I can give you is to be persistent, be your own advocate and fight for an appt like you're fighting for your life because frankly, you are fighting for your quality of life if nothing else.

Wish you all the best,
Dawn

SandyRI · 10-27-2010, 05:32 AM

Dear Truffle,

I started with the same list from Broatch. I called the docs that were within driving distance of where I live in southern New England - NYC, NJ and Phila. - and booked several appts with the docs that would take me and my WC insurance. Dr. S. I had booked a year before, and he was 18 months out when I called. And I had already been to the Beth Israel in Boston and knew they weren't taking any new ketamine patients (their protocol is awful anyway, but my heart was still broken when they rejected me the previous year! Those docs were MEAN!!).

Anyway - your docs will determine which protocol - the outpatient or inpatient - they think you need. I was recommended for the 10 day outpatient by both Dr. Hertz at St. Luke's Hospital in NYC and Dr. Getson in South Jersey. (I never made it to Dr. S., I had had a good number of infusions by the time his appt. rolled around, and was feeling pretty good.)

I picked Dr. Getson because I liked him A LOT when I met him and a number of my family members live nearby. I grew up in South Jersey, and my parents still have a beach house at the Jersey shore. 3 of my siblings live and/or work in the area. So I had a place to stay and someone to take care of me while I received my treatments. My father gave me a ride back and forth from the Jersey shore area over and over again!! Getson has a great reputation, and all he does is RSD. He was truly great and I have no regrets with my decision. And I had my family to help me for the first few months that I was getting my ketamine infusions,

I was not sick enough to require a 5 day inpatient, but likely would not have gotten back on feet without the 10 day outpatient. I have CPRS I, it started in my shoulder (brachial plexus) and spread to my neck and the occipital region of my head. Later it spread to my right leg and just this year it started in my left foot. I have trouble in the cold with my hands and feet and face and suffer from hideous migraines at times.

I returned to work FT in June, 2 months after I started receiving the ketamine infusions, and one year to the day that I went out on my LOA. I am still getting my boosters, (in RI for the past few months). I am doing well, all things considered.

Let me know if there is anything else you would like to know, and the best of luck to you. XOXOX Sandy

finz · 10-28-2010, 02:20 AM

Dawn,

I'm so sorry to hear about your car accident. I hope you are doing okay and I pray the possible legal issues will work out for you.

Try to just concentrate on the upcoming ketamine. I'll be thinking of you Nov 1st !

Reddawn600 · 11-01-2010, 06:47 AM

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

Lisa in Ohio · 11-02-2010, 07:59 PM

Good luck Dawn

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