[bbpoolgurl]

Hey everyone, hope everyone is having a good day. This week has been rough, as both my fiance and I came down with the dreaded swine flu. Guess I won't be needing that shot after all!

Anyway, I wanted to ask those of you who have had the ketamine infusions about them. Did it work for you? How long do they take? Any side effects? How long were you in remission? I would like any and all details about this.

My doctor said that if I wanted to do these, she would write me a referral to the doctor out of Drexel that does them. She did say she has concerns about them, as she has other patients who do them, and they have reported terrible side effects to her. She said they have told that while getting the infusions, they have horrible hallucinations of being attacked, murdered, raped, etc. Is this true? Or is this only for certain people?

How well does this work, and would you recommend it or no? I want to find out anything and everything about it, so that I can make an educated decision. If this works for others, then maybe I need to consider this instead of the SCS, especially if I want to have children. This would be a better choice, overall- and if a few hours of hallucinations means months being pain free, then maybe the trade off is worth it.

Thanks everyone!

[momzpeachy]

I am here in PA and go to Drexel for all of my care. The Doctor's there are great and explain everything to you pretty well and in English..lol. I am set up to start ketamine next month. I am going for the 10 day outpatient and also on the list for 5 day inpatient. My husband was with me on the day they mentioned this treatment to me and I was speechless. He did all the talking and asked all the questions. I was scared to death! It took 2 weeks for me to think about it and do research. I cried alot and was an emotional wreck. I wasn't sure what to do. I did lots of research and started asking lots of questions. I weighed the odds. Do I continue to live like this and continue to get worse or do I try something that might work and give me some relief and some of my life back? What do I have to lose? I was told by my Doctor that it's a 99% chance that I WILL get worse and I have an 70-80% chance that the ketamine will work. Hmmm...at this point I'm ready to give it a try. I'm only 36 years old and unemployed now. I am tired of pain every day. I was a very active person 3 years ago and this disease is just killing me. I hate it!

I am scared about the ketamine and I too am worried about hallucinations. I was told that they monitor you very well during treatment. If you start to hallucinate, they have medication to stop it. If hallucinations are to happen, it's only during the treatment. The medication is out of your system within 4-6 hours. The Team at Drexel monitor the patients very well and if they see things are getting bad, they will either administor drugs to help or immediately stop the ketamine.

I am set up to start October 26th and I cannot lie..I am very nervous. But what other choices are there? I have tried everything! Every form of treatment and medication and nothing has worked.

If you have any questions or need support, feel free to pm me.

Momz

[SandyS]

Hi

My 16 year old daughter had the 3 day 4 hour infusions back in July, she has been pain free up until a few days ago, she is in a flare right now, but not as horrible as they have been. She had them with Dr. Kirkpatrick in Tampa, we went for her 8 week follow up and she is in partial remission. I think she is in a flare right now because she had a fall on the tile floor, and unfortunately after the infusions, you have to be very care as not to injure yourself.

I don't know how old you are, but my understanding with the ketamine, is that if you are younger the likely hood of hallucinations usually don't happen with kids or younger people. My daughter was uneasy during the treatment, but Dr. K. made sure that it did not get bad. He consistantly monitored her and turned it off for short periods of time. As long as you don't have high blood pressure, any kind of heart condition or other underlying medical conditions you should be ok, but with all treatment there are risks. My daughter had to be cleared by a cardiologist. I think she will have to have boosters due to the fall that she had. She said she would do it again if she would go into full remission. She mentioned today that her life was so good up until this week. So you have to think about what your quality of life is right now and if you would try anything to make the pain go away.

My prayers are with you. I hope you are able to make the right decision.
I also hope you have some pain free days.

Sandy

Originally Posted by bbpoolgurl

Hey everyone, hope everyone is having a good day. This week has been rough, as both my fiance and I came down with the dreaded swine flu. Guess I won't be needing that shot after all!

Anyway, I wanted to ask those of you who have had the ketamine infusions about them. Did it work for you? How long do they take? Any side effects? How long were you in remission? I would like any and all details about this.

My doctor said that if I wanted to do these, she would write me a referral to the doctor out of Drexel that does them. She did say she has concerns about them, as she has other patients who do them, and they have reported terrible side effects to her. She said they have told that while getting the infusions, they have horrible hallucinations of being attacked, murdered, raped, etc. Is this true? Or is this only for certain people?

How well does this work, and would you recommend it or no? I want to find out anything and everything about it, so that I can make an educated decision. If this works for others, then maybe I need to consider this instead of the SCS, especially if I want to have children. This would be a better choice, overall- and if a few hours of hallucinations means months being pain free, then maybe the trade off is worth it.

Thanks everyone!

[SandyRI]

Hi everyone,

I have also just been accepted into a ketamine program (!!) - the Manhattan Pain Clinic at St. Luke's/Roosevelt Hospital in NYC. I will need to pass cardiac testing and psych testing first, the doctor in charge of the pain clinic said that they are booking into January at this point. They use the 5-10 day protocol (overnight if the insurance co. pays) plus boosters for 2 days per month for a year.

Not only do I need to pass the cardiac and psyc testing, I need to get WC authorization for procedure. The clinic is booking into January at this point and my attorney told me this afternoon that was a good thing, because it would likely take that long to get this approved.

Have a nice evening, XOXOX Sandy

[bobber]

Question?
Does insurance pay for the infusions,,I know all insurance comp are different,,but it be nice to know if there are programs that will accept us in for trials and ect,,,I know I read one of petes [asb] posts where he had them,,,do they help? and whats the success rate? any info on this thread would be appreciated,,im looking at all avenues too,,I also hear one girl on here who took a pill form,, wheres mike and pete when you need them,,,,and Ali,,,,,,,help,,carrie too

[gabbycakes]

Let me first say hi and hope you are feeling well...

I have had 3- 5 day ketamine infusions. Do they work yes, but and it is a big but. As far as the procedure itself it's not any easy one, I happen to be in one of the best hospitals in the world the Hospital for Special Surgery, in NYC and the care was above average and my doctor, Dr. Daniel Richman was very carrying and attentive. I truly could not ask for a better facility.
I did get relieve and very good relieve and just not from the pain, as you know that RSD comes with more then just pain, the sweating, lack of sleep, range of motion etc. I also worked with the people at Drexel for my boosters who also are very good, Dr. Schwartzman is kind and caring and so are his people.

During the procedure I did halluincate a little but not bad hallucinating nothing like you desribed, murder, being raped or anything like that. Now here comes the big BUT after the procedure and months after I feel it affected my body in many ways my metobolism changed completely, my teeth started to become very unhealthy and prior to the procedures I had very good teeth, my attitude became very poor and many other little things that are hard to describe. Now, can I blame all this on the Ketamine, I am not a doctor, but my dentist does think the change in my teeth is from the ketamine.

I was offered to try in for a 4th time and refused. I think trying it once would be the right way to go see how it works and then go from there. I would not waste my time with 10 day outpatient or 3 day outpatient, I would go for the 5 day in patient with boosters. It sounds like you live on the east coast I would consider seeing the doctors at the Hosptial for Special Surgery the hospital is just unbelievable, clean the nurses are extremely attentive and the doctors are some of the best in the world. Dr. Schwartzman is also great but if you do the inpatient you have to go to Hahnamenn Hospital and I have heard it is not that great.

Has far as insurance I was very lucky I was covered each time. I had a PPO plan and Dr. Schwartzman when I did my boosters was even in-network. If you decide to check out HSS you really have to have a PPO they only take a few insurances in-network....

I hope this was informative....Good Luck

If you would like to PM me I could get a little more into detail.

Gabbycakes

Originally Posted by bbpoolgurl

Hey everyone, hope everyone is having a good day. This week has been rough, as both my fiance and I came down with the dreaded swine flu. Guess I won't be needing that shot after all!

Anyway, I wanted to ask those of you who have had the ketamine infusions about them. Did it work for you? How long do they take? Any side effects? How long were you in remission? I would like any and all details about this.

My doctor said that if I wanted to do these, she would write me a referral to the doctor out of Drexel that does them. She did say she has concerns about them, as she has other patients who do them, and they have reported terrible side effects to her. She said they have told that while getting the infusions, they have horrible hallucinations of being attacked, murdered, raped, etc. Is this true? Or is this only for certain people?

How well does this work, and would you recommend it or no? I want to find out anything and everything about it, so that I can make an educated decision. If this works for others, then maybe I need to consider this instead of the SCS, especially if I want to have children. This would be a better choice, overall- and if a few hours of hallucinations means months being pain free, then maybe the trade off is worth it.

Thanks everyone!

[SBOWLING]

Hello,

I did the 10 day out patients treatment with Dr. S in Philly about a year ago. After the
4th day the treatments were stopped they were not helping. As far as hollucinations I didn't have any problems. They give versade with the ketamine to help with the hollucinations. I need a stronger dose than they can give with the infusions and he wants me to go to Germany for the coma.

Best of luck in were every you decide.
Take care,
Sherrie

[SandyRI]

Originally Posted by gabbycakes

I have had 3- 5 day ketamine infusions. Do they work yes, but and it is a big but. As far as the procedure itself it's not any easy one, I happen to be in one of the best hospitals in the world the Hospital for Special Surgery, in NYC and the care was above average and my doctor, Dr. Daniel Richman was very carrying and attentive. I truly could not ask for a better facility.
I did get relieve and very good relieve and just not from the pain, as you know that RSD comes with more then just pain, the sweating, lack of sleep, range of motion etc. I also worked with the people at Drexel for my boosters who also are very good, Dr. Schwartzman is kind and caring and so are his people.

During the procedure I did halluincate a little but not bad hallucinating nothing like you desribed, murder, being raped or anything like that. Now here comes the big BUT after the procedure and months after I feel it affected my body in many ways my metobolism changed completely, my teeth started to become very unhealthy and prior to the procedures I had very good teeth, my attitude became very poor and many other little things that are hard to describe. Now, can I blame all this on the Ketamine, I am not a doctor, but my dentist does think the change in my teeth is from the ketamine.

I was offered to try in for a 4th time and refused. I think trying it once would be the right way to go see how it works and then go from there. I would not waste my time with 10 day outpatient or 3 day outpatient, I would go for the 5 day in patient with boosters. It sounds like you live on the east coast I would consider seeing the doctors at the Hosptial for Special Surgery the hospital is just unbelievable, clean the nurses are extremely attentive and the doctors are some of the best in the world. Dr. Schwartzman is also great but if you do the inpatient you have to go to Hahnamenn Hospital and I have heard it is not that great.

Has far as insurance I was very lucky I was covered each time. I had a PPO plan and Dr. Schwartzman when I did my boosters was even in-network. If you decide to check out HSS you really have to have a PPO they only take a few insurances in-network....

I hope this was informative....Good Luck

If you would like to PM me I could get a little more into detail.

Gabbycakes

Hi Gabby,

The HSS told me that they weren't taking new RSD patients. I later found out that I was denied because they don't accept WC. I wonder why they just didn't tell me the truth?

I will likely go to St. Luke's (but I am still waiting for Dr. Getson of Marlton NJ to get back to me, I sent an application to him also). Do you know anything about their facility? I did get an e-mail from one person who has been there.

What happened to your metabolism?

Did you return to work?

I want ketamine not only because I want to become painfree, but also because I want to return to work. If I can get rid of enough of my symptoms so that I can get off most of these meds it would be awesome!!

Thanks for any additional info you can provide to us, and feel well (borrowed that expression from Pete)

XOXOX Sandy

[hopeful]

Hello,
I did have the 2 week 5 day ketamine treatments with Dr. Schwartzman at Drexel. I have had 3 sets of boosters and am scheduled for another in Nov. I was so scared of having them and they were not as bad as I thought. They give you meds to help with the hallucinations and want you to take Ativan before bed and in the morning while you are having the treatments. I did have some mild hallucinations. Nothing really bad.

I can say that I got some relief. I don't know how to describe what was happening to my arms. I said it felt like is was itchy. I use to scratch until I was brusied. I would wear lidocaine patches to bed. That has stopped. The first 2 week treatments gave me quite a bit of relief but it has not put me into remission. My arms symptoms have not returned though so that is quite a relief. Dr. S. thinks I would be a better canidate for the 5 day in hospital high dose treatment.

I do have a PPO (Blue Cross) and they are now refusing to pay. They would only pay for the outpatient but now say that the treatments are experimental/investigative and want the money back they paid for the first so many treatments.
I paid out of pocket for the last boosters. I have a hearing for my 2nd appeal on 10/8. I am hoping I win the appeal. I wish I could get them to pay for the inpatient treatments. I think at this point I would try anything to get rid of this pain.

The staff in the infusion room at Hahnemann were great. They really give you the best of care. I wish I could say I came away pain free but that is not true. However, I have met many patients at the infusion room that have had remarkable results.

Good Luck and hope they work if you decide to have them.

I have a question for everyone. Have any of you had a nerve block or Lidocaine treatments. Are the Lidocaine treatments infusions? I have an appt with Dr. S. in Oct to discuss a nerve block I would like to know if there are any other treatments I should be prepared to ask him questions about. I need something to stop the burning any suggestions?
Thanks!
Hopeful

[gabbycakes]

Dear SandyRi,

HSS doctors all have different rules there like sub-contractors for the hospital. I believe the the only 2 doctors who do the 5 day in-patient ketamine is Dr. Richman, who is my doctor, and Dr. Walden. I would call them direct. The web-site is www.hss.edu you can look them up by name. Dr. Richman really is strict on the insurance he will take and it has to be a PPO he does not participate with any insurance company and ops out of medicare. If I was going to have this procedure I would do it at HSS the care is really superior, I also had many surgeries to fix my inquiry and each had semi-long stays 4,5,6 days each time.

Good Luck...

Gabbycakes


QUOTE=SandyRI;571157]Hi Gabby,

The HSS told me that they weren't taking new RSD patients. I later found out that I was denied because they don't accept WC. I wonder why they just didn't tell me the truth?

I will likely go to St. Luke's (but I am still waiting for Dr. Getson of Marlton NJ to get back to me, I sent an application to him also). Do you know anything about their facility? I did get an e-mail from one person who has been there.

What happened to your metabolism?

Did you return to work?

I want ketamine not only because I want to become painfree, but also because I want to return to work. If I can get rid of enough of my symptoms so that I can get off most of these meds it would be awesome!!

Thanks for any additional info you can provide to us, and feel well (borrowed that expression from Pete)

XOXOX Sandy[/QUOTE]