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 Dawn

First I would like to thank you for contributing your time and you families time for this forum. As a husband with 5 kids and my wonderful wife who was diagnosed with RA. We seem to be in a constant battle for some sort of normalcy let alone contribute to different forums. It takes away valuable time away from the kids and yourself. But I truly believe the commitment we make to help others will come back to us in many ways. And who knows maybe even a cure for this nasty demon once and for all.

I guess I have a few questions about your ketamine experience so far. Did you have an insurance that would pay for the treatments? Is this treatment the five day inpatient with physical therapy? And have you found any data that would give a percentage rate of positive outcome of this procedure? I guess I have been receiving conflicting reports from my pain specialists about the outcome of the procedure. Thank You Krank

Hi Krank,

Until I'm feeling stronger again and able to do more to promote understanding of RSD, I feel this is the very least I can do.

As for my insurance, I have Aetna and my doctor is not covered at all so that will be completely out of pocket. Some of the other preliminary testing such as cardiologist and psychiatrist, I may receive some reimbursement for, not sure yet. I can also submit something for my Dr. but I doubt there will be much coverage.

At this point, my treatment has been approved by Aetna for the first 2 inpatient days with the caveat that they will reevaluate it as it moves ahead (fingers tightly crossed here). The out of pocket cost if they choose not to cover it at all will be $20-$30k.

I am unsure about PT during my 5 day inpatient, no one has mentioned it at all.

Next month I will begin my boosters with Dr. Schwartzman. These will be two consecutive days for 4-5 hrs each day in Philly. From what I understand, it will be every 2 weeks, then 3, then to 1 month and then 3 months if the ketamine is holding and I'm feeling ok.

What both Dr. Richman and Dr. Schwartzman seem to feel is the key to success is the booster treatments. They have found the highest success rate in the patients who have had them. Dr. Richman seems to feel I am a good candidate given my age (38) and past response to anesthesia. I had 3 cervical and 1 lumbar surgery over the past 5 years and the way I felt for 6 wks or so after each was simply amazing. I felt like I was 20 and was pain free. Of course, after 6 wks or so, I was left wondering why all of my pain kept coming back and getting worse then pre-surgery. I guess we now know why.

Hopefully, the combination of the 5 day plus boosters will be the answer. Percentage was, I forget the exact numbers he gave me but they were favorable enough for a definite yes for me. I believe it was about 20% that had no positive benefit. Others had varying degrees, some of which came after the boosters began, others immediately after the 5 day.

Happy to answer any other questions as best I can and obviously will be able to answer more after the 1st.

Dawn

Dear Dawn, Our best to you for your ketamine and boosters!!! Hoping insurance covers the best for you too. Thank you for your kindness in wanting to be of support to us-it warms our hearts.
Please know you will be in our thoughts throughout your procedure. When you are up to it, please let us know how you are. One of your new friends, loretta

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

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

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

Hi,
Thank you for all the posts, I have to say I'm shocked! And rather scared now. My inpatient will be at HSS but Dr. Richman doesn't do the outpatient boosters so referred me to Dr. S for them.

While I have not heard the best of things about Hanhemman, the reports on Dr. S were usually glowing.

Dr. Getson is within reach so could be another possibility for boosters. I just don't know what to do but am at my wit's end.

Got in a car accident last night )other car was parked, no injuries but landed me in the ER again for the whole night for observation) and was told my driving seemed impaired. I don't know what's going to happen now but I'm scared to death.

I go in for my 5 day next and am unsure how to proceed after that.

To those of you who have had treatments, are you still heavily on meds and injections?

I currently take a total of almost 40 pills today and find it sickening. I'm really at the end of my rope and my accident last night was the final straw. I'm still waiting to hear if charges will be pressed because I was on my prescribed meds even though the accident was due to a broken tired rod, not my driving.

I'm usually a really positive person and have fought hard through all this so far but right now, were it not for my 3 children I would love to never wake up again.

Dawn

Dawn,

I'm sorry to hear what you are going through. I hope and pray that everything turns out . I not sure if I should tell you this but I recently talked with one of my pain management doctors about the 5 day ketamine and he stated that the statistics for any type of recovery or remission from the procedure were in his words "not good". That more people find themselves in the same situation as they started. I know this not very good news, and I can't even start to imagine how it would feel to be in your situation. I just know that I was ready to do the same ketamine procedure and now I am questioning that decision. I also know that it wasn't what I wanted to hear, but I'm glad that he told me. I know from personal experience that some doctors are only in it for the money and really don't care who they hurt in the process to get it. Not saying that your doctor is this way, its just that I had a bad experience and now I am very skeptical about them. Krank

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