Hey Everyone,

As some of you many already know, I have had knee CRPS for 7 months now and I am scheduled to do a 10 day low dose ketamine inpatient treatment in Germany with Dr. Rohr next month.

Myslef together with my parents are still in the dark about what exactly the procedure really entails and have loads of questions.

Would really apreciate all the information I can get from some of you who have done the inpatient treatment.

Besides the IV inserted into the spinal cord, would they insert anything else into you? Drip? Hart pump? Or anything else?

Would you be able to move during the treatment or will you be totally nocked out for most of it? Would it make sence for my girlfriend or parents to spend the ten days with me or wouldnt I be able to notice they are there?

How do you feel once the treatment is over? Do you need a certain amount of time to recover or for your muscles to start functioning? Will you be able to fly a couple of days after?

Thanks for ANY information/reccomendations I can get to be able to make myslef prepared before and after.

Nigel

I had the 5 day inpatient low dose tx in NYC. This was my experience and remember everyone is different. First- the IV was not put in my spine - I had a pic line that goes in your neck area. all drugs were given thru that line.
I stayed in bed the whole time.. I was not able to get up because the ketamine is very strong.
I did have vistors and I did eat a very little bit and I could hold some conversation. Since you dont eat much if anything the whole time I don't think I pooped until it was over. You have a catheter in for the duration.
I dont remember how long it took me to totally recover but I think it was about a week...any other questions just pm me..Why are you going all the way to Germany. I had it done in Manhatten?

Debbie

Hi Nigel

Last September Dr. Rohr treated me with the low dose ketamine treatment. The treatment took 18 days instead of 10 because I needed so much ketamine before I got any pain relieve.

You’ll get an IV put in your neck vein. The IV will last through the entire treatment as long as you don’t get an infection.
The doc who put in the IV couldn’t speak English, so I didn’t know how she would do it and that was a bit scary, but it wasn’t bad at all. It max took 15 minutes. To prevent the IV not to fall out she stitched me.

It’s very important your girlfriend and parents are with you. You’ll be awake all the time so you’ll be were lonely if you are there all by yourself. You’ll be able to have conversations with them but it’s very important they talk slowly. It’s also very important that they don’t make you frustrated because you’ll be very sentimental. If I started to cry it was so difficult to stop again. So no deep talks!

You’ll be able to move but you’ll be very dizzy and weak so you need to be very careful. There will be a physiotherapist to train you.
The day after my treatment ended my family and I drove back to Denmark again. The trip took 15 hours and I was so exhausted, so if I were you I would wait some more days to fly back home again. Perhaps three. I think it took me about five days to recover.

In the hospital I lied in my own room with my mum. It cost her 35 euro each night. Food was inclusive. It’s called “begleitperson”.

My family and I have stayed at two hotels:
“Hotel am triller” (+49 681 58000-0) The price is 102 each night without breakfast.
and “Hotel Mercuse” (+49 681/5863-0) The price is 59 euro each night without breakfast too.

They are both fine hotels but “Hotel Mercuse” is a little bit longer away from the hospital. It’s too long to walk to the hospital from both hotels.

By the way you don’t get towels and clothes from the hospital.

I thought the food was really bad but you can always order a pizza. The nurses are sweet but they can only talk a little English. First I thought Dr. Rohr was kind of frightening but he’s actually really sweet and talks fine English.

I think it’s a very wise decision to get this treatment! You and your family can be absolutely secure- Dr. Rohr will take good care of you!

The treatment worked really well on me but two weeks after the treatment ended the pain came back. I definitely think there is a much bigger chance the pain will stay away when you only have had this disease in 7 months!

I have waited since January to be put into a coma by Dr. Rohr, but the assurances people haven’t still approved me, but will you please say hi to Dr. Rohr from me?

If you have other questions please write. I would love to help you!

I really hope the treatment will be a great success!

Sincerely, Eva from Denmark

P.S I hope my English isn’t too bad!

Thanks for the info Debbie. Was the treatment succesfull for you? Im from Malta not the US and went to Germany to find the cause of my knee pain, which sure enough turned out to be RSD since nothing else could be found and considering the amount of pain I had. I then got to know about the pain clinic in Saarbrucken and made it a point to travell to it and meet up with Dr. Rohr.

Eva, really appreciate all the info, its really great I have found someone who has had the treatment with Dr. Rohr, myself including my parents still dont know what to expect exactly and have loads of questions. Yes, Dr. Rohr seemed like a really nice guy when I met up with him last month and I will definatly say hi from you . We must contact him on Monday to set a date for the treatment. He thinks there is a good chance that it can work out considering the 7 month time frame but obviously there are no guarantees unfortunatly. I really hope it works out!

I dont know from where to start regarding questions Is there anything else inserted into you besides the IV in your neck? No hart pumps or anyhting scary like that right? (not so good with needles etc) Can you eat normally and go to the bathroom or will I be on the drip? Will doctor Rohr be there alot? He seems like a really busy doctor. Are you taken care of well in the hospital and are the nurses nice?..Once the treatment is over I plan to travell to my girlfriends family in Finland (its a really nice place and very relaxing). We would probably needed to catch two flights at least and probably a train of 5 hours also so dont want to rush to travell untill I am physically prepared.

Did you start PT once you were pain free? I really need to start PT for my right knee as my muscles are wasted. I can walk short distances slowly and all but need to re build my knee once the pain allows.

Looking forward for any help you can give me. Also, will doctor Rohr be able to do the coma treatment for you?

Thanks,

Nigel

Dear Nigel,

I have done 3 - 5 day inpatient ketamine infusions in NYC at the Hospital For Special Surgery with Dr. Richman. All the information you got so far is right on so I won't repeat what you have already heard. Like Debbie said you will have a central line which is in your neck but know big deal and also a epidural line in your back, I would assume the lower part of the spine because your problem is with the knee. The only other thing I can add is I would not plan to do anything especially travel like that until about 2 weeks or 3 even after the procedure. And if I remember you are having a 10 day inpatient procedure so that might even require a little more rest. It's important before, during and after you try and stay as mellow and as relaxed as possible.

You have a great shot at remission due to the 7 month window. I wish you the best and keep us posted.

Gabbycakes

I’m glad I can help! Before my treatment I missed someone who could tell me about it! Great you already have met him! Dr. Rohr wasn’t sure the treatment would help on me because I have been sick more than a year (two and a half), so he’s not saying that to anybody! I think you should know that.

The only thing that will be insert is the IV in your neck, so don’t worry! The nurses will take your temperature and blood pressure every day and that’s all.

You’ll be able to eat but you’ll probably have some nausea, and you’ll be able to go to the bathroom too, but it’s not possibly for you to get a shower because of the IV. You’ll probably be too tired anyway.

Dr. Rohr is a very busy man but he will check on you every day to see how you are doing. If Dr. Rohr is having a day off there will be another doctor to check on you! I thought the hospital was a bit old-fashioned, but they’ll take very good care of you! The nurses will contact Dr. Rohr immediately if you’re feeling bad, and they are really sweet!

It sounds like a very good idea not to go back to your normally life straight away. I started in school only three days after the treatment and that was way to fast! I was just so stressed because I needed to catch up with so much.

Before the treatment I couldn’t walk at all, but after I was pain free I started to train in the heated pool. I didn’t have a trainer because every time I have had one the person has been pushing me too hard.

Dr. Rohr was the one who invented the coma to treat CRPS patients so he’s definitely able to do it, but the hospital haven’t decided if they’ll allow him to do it because it’s a very risky treatment, but unfortunately it’s my only chance to get my life back! I have waited since January for an answer, and
I’m just getting worse for every week!

Again, I’m sorry for my English.

I really wish you the best!

Eva

That gives me confidence that the doctor says there is a good chance. Better that all the other who said you have to fight through the pain, need to do an athroscopy etc etc..

To be honest, I am feeling better physically that a month ago and have been 'fighting through the pain' doing bike 5 times a week + light walking in the evening. Latley, I have managed to increase my walk to 30min before the pain litrely stops me. The increase in activity has however resulted in strong pain reactions and is not helping my rsd pain but has slowly started to eliminate physical pain from not moving + helping my weak knee.

Im not sure this is what im supposed to be doing in preperation for my treatment but really want to elminate the imobilisation pain and muscle weakness leaving just the rsd pain to be eliminated.

Any ideas if this is the right thing to be doing or should I wait untill after the treatment to start recovering my knee?

Nigel,

I wish I could give you all the answers but all of us are different and react differently to the procedure. I would just relax, continue with your walking and bike as tolerated and just go in with an open mind and you will do fine.

What date do you start? Keep us posted.

Gabbycakes

Hey,

We have to contact the doctor on Monday to set a date. It will probably be around min July. The thing is we are travelling to Saabrucken from Malta which is 2 flight and I intend to travell to Finland after which is also 2 flights. I hope I will be able to after the treatment.

Also, yesterday I went down the road and swam in the sea. Could swimming in the sea aggravate as its quite cold? It felt good and am still alive today

I would take it kind of easy after the treatment if I were you. Barometric pressure effects my wife's RSD so I would be a bit concerned about cabin pressure on the plane. Just a couple of weeks ago Suzy and I were walking the beach getting our feet and legs wet. The water was cold and a couple of hours later her feet turned blue and swelled. They are still giving her problems. Keep in mind she's had RSD for 10 years, also she's a bit older than you. We also did quite a bit of shopping, plenty of walking that I'm sure contributed to swelling feet-ankles.

nigel, I'm sure you're full of energy and rearing to move about but after the treatment you should really take it easy.