anyone have iv infusion with lidocaine or ketamine?

[burdzmom]

good morning everyone,
had my decompression and crainiotomy last february and still have issues going on. severe pain on the right side of my head and fine motor skills and weakness issues on my left side of my body. constant ringing in my ears, coordination issues, sleep issues, i could go on. so i see dr marmura at jefferson headache center in pa. (he is affiliated with dr, young - FANTASTIC drs)
i am being admitted for the iv infustion (the ultimate treatment they say) on tuesday to try and decrease the inflammation in my head. trying to "break the cycle" since all medication seem to not be working anymore - leaving me to push through the pain everyday. i dont take narcotics - 1. since i fear the dependancy and 2. they can make chiari headaches worse with the withdraw (push thru pain is AWFUL. especially when caring for my extremely curious 3 year old)
so - has anyone had the infusion? what did you think of it and did it make you feel any better?
this is an attempt to decrease spinal fluid as well since my pituitary gland is "smushed" which is a sign there is too much fluid building up  - which could be another cause of my discomfort. we are trying to avoid a shunt for the spinal fluid build up so i am hopeful this procedure works.

thanks for touching base and giving me advice. keeping busy in the hospital for DAYS is not going to be fun either. ill take suggestions for that too :)

all the best-
jilian

[Jac074]

Hi,

I've just stumbled across this forum and think I can offer some answers to your questions :)  I have a 6mm Chiari Type 1 Malformation and also suffer from RSD / CRPS as a result of cancer and a serious MVA.  

So far I haven't had the decompression surgery although I'm a candidate as I'm a bit nervous about it as the Drs here in Australia haven't been able to offer me great percentage chances of success.  With the Chiari migraines, I get a severe one that breaks through my preventative meds requiring hospitilisation approx twice a year. When I go to hospital I have a lignocaine infusion over a period of 1-4 days depending on the response and it works very, very well for me where all other treatments have failed. For this treatment you need to be monitored very closely, usually in a cardiac ward as there is the potential for sudden heart problems to occur; however I have never experienced any side effect, apart from the headache going away - and staying gone.

With regards to ketamine - I have just returned home a couple of weeks ago after receiving a ketamine infusion as a "last resort" treatment for my severe chronic pain caused by the RSD which I've had for 15 years.  Spent the last 10+ years on Oxycodone just in order to be able to move around, unable to work or exercise or do the cleaning or anything. The RSD suddenly deteriorated extraordinarily quickly a month ago and I found myself in my specialists' rooms in hysterics telling them if they didn't do something I was going to hurt/kill myself, I was at the end of my rope. They admitted me immediately and had the infusion started within a couple of hours. I had a continuous ketamine infusion run for the following 7 days, (the pain "broke" on day 4) then after 24 hours of observation I was released.  Once again with this treatment I didn't experience much in the way of side effects except for feeling a little "high and happy" every now and then.

I cannot explain the change - my pain has gone from 9++ to a 2 or 3, I'm getting off the oxycodone and am starting to rehabilitate myself with long walks and cleaning my house etc. Soon I think I'll be able to start looking for a job. I have also noticed that since I've been home, not ONE headache. At all. I'm seeing my Drs next week and am going to be asking them about the effect the ketamine seems to have had on my headaches and pressure in my head as well as the RSD.  

Ketamine treatment is still fairly "new" over here and not many people have had it done (I'm the youngest for my team, 36yrs old). However there is increasing uptake as the results start to come back.  I have become an official "test patient" and am keen to share my experiences with people as this has been amazing for me - a new chance at life. From what I understand, I will need a "top up" infusion maybe in a couple of months if the pain starts to return to switch back off the NDMA receptors in the brain that respond to pain; that infusion will only be for a few hours as a day patient. That should then keep me stable for up to a year or 2. There's far more detail I could go into but won't (this post is so long already I'm sorry!) - but hope it's of some assistance.  If I was you, I'd go for it, I've found both treatments very beneficial for my Chiari and the Ketamine just stunning for the RSD.

Cheers and good luck
Jacqui

[rod44]

Hi Jilan, sorry I dont have any experience of  iv infusion with lidocaine or ketamine.

When in the hospital you need to rest lol, Listening to music helps and some light reading.

Ray.