[swatmedicmama]

Hi all! I'm new here. I'm 31 and from pittsburgh pa. this summer I had an injury that led to compartment syndrome of the hand requiring an emergency fasciotomy and leaving the hand open to close on its own which took almost 8 weeks, plus 8 weeks of IV antibiotics through a PICC. Almost immediately after healing the surgeon said I had RSD, my hand is generally cold, blue, mottled, awful cap refill, all the hair on my forearm fell out, mynails stopped growing. I have extreme allodynia. any cold triggers intense burning like my hand is on fire. They sent me to a PM doc which I was nervous about hearing all these horror stories. I guess I'm lucky the surgeon diagnosed the RSD as soon as I complained of burning pain and he saw the color changes and stuff. The pain doc gave me ketamine troches and has me coming in today for a 5 day inpatient infusion. Seeing how many people here have had to fight to get the ketamine, or to get treated, or diagnosed I feel so blessed to have a great team of doctors. I'm super scared and nervous to see how this goes and hope it works so I can go back to work. This doc is being really aggressive about the infusion since the injury is about 7 months old, and the RSD is really severe according to their scale and he said infusions as soon as possible to the injury tend to have better outcomes.... anyone else ever hear that? What should I expect? I'll keep everyone posted. and does anyone have hints on how to make the troches taste less god awful? I have to have a ton of tic tacs or altoids in my mouth while its dissolving because the taste alone makes me vomit nonstop otherwise.

[catra121]

I'm sorry that I don't have any advice as I've never had the ketamine infusions...but I just wanted to pop in and wish you luck today. I hope it helps and your dr is right about early aggressive treatment being the best shot at remission. Good luck and let us know how it goes!

[Littlepaw]

Hi,

I am so sorry for what you're going through. You've had a heck of a 7 months with all this. Compartment syndrome is very serious as you know. You are lucky to have that hand even if you are cursing the pain. It sounds like you have an experienced and caring set of doctors and that gives you an immediate advantage. 7 months in is really not very long so hopefully they are going to get some of the changes to reverse. I often write about a Cleveland Clinic doctor, Michael Stanton Hicks who says that 80% of people improve over time.

I think the inpatient ketamine infusions may be given more slowly than mine and you'll likely feel quite calm and comfortable. I find mine peaceful so long as the infusion rate is not too fast. I take soothing music with me and my own fuzzy blanket. That's really about it. I am usually in the infusion room with another patient and one woman prefers hers VERY slowly and she even reads during it. I find my vision blurs on the K so that is not an option for me and I just chill out. If they are not infusing constantly you will likely want magazines or a tablet or something. If you feel too strange just ask them to slow it down. I am able to speak up during the infusions to say if something feels off and I am a real lightweight.

I am sending healing thoughts and prayers. I hope you find relief and improvement soon! Come back and let us know how you're doing.

[EnglishDave]

Hi there,

Littlepaw is the expert on Infusions, and has given great insight into what to expect. I, however, have been on oral Ketamine for Donkey's Years and it was a real struggle a couple of years ago when they switched from sweetened to unsweetened solutions. The unsweetened is horrendously bitter. Personally, I find eating a strongly flavoured, fat-free fruit yogurt - like black cherry - half before and half after until you become accustomed to the foul taste. The yogurt coats your mouth and throat like nothing else.

Good luck with your Infusions.

Dave.

[whiteaa]

I'm sorry you have to join us in battling this monster, but I am so happy for you that you had a quick diagnosis and are getting treatment so soon (and that you already found the forum!!! )

Good luck in your treatment!

[NurseKris]

Originally Posted by swatmedicmama

Hi all! I'm new here. I'm 31 and from pittsburgh pa. this summer I had an injury that led to compartment syndrome of the hand requiring an emergency fasciotomy and leaving the hand open to close on its own which took almost 8 weeks, plus 8 weeks of IV antibiotics through a PICC. Almost immediately after healing the surgeon said I had RSD, my hand is generally cold, blue, mottled, awful cap refill, all the hair on my forearm fell out, mynails stopped growing. I have extreme allodynia. any cold triggers intense burning like my hand is on fire. They sent me to a PM doc which I was nervous about hearing all these horror stories. I guess I'm lucky the surgeon diagnosed the RSD as soon as I complained of burning pain and he saw the color changes and stuff. The pain doc gave me ketamine troches and has me coming in today for a 5 day inpatient infusion. Seeing how many people here have had to fight to get the ketamine, or to get treated, or diagnosed I feel so blessed to have a great team of doctors. I'm super scared and nervous to see how this goes and hope it works so I can go back to work. This doc is being really aggressive about the infusion since the injury is about 7 months old, and the RSD is really severe according to their scale and he said infusions as soon as possible to the injury tend to have better outcomes.... anyone else ever hear that? What should I expect? I'll keep everyone posted. and does anyone have hints on how to make the troches taste less god awful? I have to have a ton of tic tacs or altoids in my mouth while its dissolving because the taste alone makes me vomit nonstop otherwise.

Hello fellow Pittsburgher! I was wondering who your doctor is because I was told there are no doctors in this area that do ketamine infusions. It would be great if I didn't have to travel to the Cleveland Clinic because that trip can be rough! Thanks and good luck with your treatments!