I called my pain management doc yesterday and just let me tell everyone he is a doctor I love (he called back within 5 min). He is the only dr that when he heard about my condition (he was referred to me by my neuro and is at the same university) he said he was going to study and read all that he could about it! He has been very, very helpful and understanding. But he is also just as lost as I am. He knows that there is nothing to be done for ganglioneuritis and we can only treat the pain signals. Mine are on "over-reactive" mode. One of the ways to help my is by using the drug ketamine, which is used many ways, one use is a war-zone anesthesia. It has helped me some what. Not like many other people though. I have to have a fairly high dosage and it has to be applied very, very aggressively; to the point of hallucagentic and black out point. Only then does it help my pain level - which goes away 100%. For as little as a week then tapering back to "normal" levels by less than 5 weeks. I went through this all last spring and summer. It took that long to find the correct method of application and now we now what works. But we also know that it does not solve my pain problem like it does for some people.

Now my dr wants to do another round of ketamine and then implant a neurostimulator.

I would love to be educated on ANY/ALL info/experiences(especially) that people have. I have purposefully avoided just going online and randomly searching, I have found that this site is much, much more educational. Thank you all.

This is our SCS forum:

http://neurotalk.psychcentral.com/forum118.html

Thanks for the link. I feel like I am moving to a new classroom and have to be the new kid again -

They are very nice and supportive over there.

Do not worry!

My boyfriend had the stimulator put in around october 2009. He has tried a lot of avenues to relieve his foot pain. The stimulator did not work for him. He went for around 6 months to get the vibrations to the bottom of his feet. They were never able to get the pulses to reach his feet. The rep said there was really nothing else they could do to help. He had the simulator removed last year so he could get a mri.

My boyfriend said he would not suggest getting one put in. I guess i would say when you are in terrible pain try any thing. However i am not the one who had to go through all the doctor appointmens as well as the two operations

i am not sure if our experience has help you but we wanted to share our story as we are not sure how many people have had the stimulator implanted. We wish you the best of luck no matter what you do.

God bless...

Thank you - all feedback helps. I appreciate you taking the time let me know!

Ketamaine injection or ketamine infusions where it is over hours? I have researched a lot about ketamine infusions and was suggested the scs. I posted about my feelings on the other thread here. If it is an infusion of ketamine it is done with RSD so if you go there you will get feedback on it and also scs. For myself and everyone is different I am more open to the infusions as the SCS there is a lot of fear that the condition could spread to the implant area and also problems with the SCS. I do know someone who has benefited from SCS but a lot of people have problems. Again it is a personal choice and for myself I am very big on getting extra opinions by different doctors.

Its is the injections - done over an hour. 40 mg typically for me - I think. The university where I go does not agree with the heavy dose method right now. You are talking about where thay keep someone sedated with ketamine for a few days? But my pain management dr is actually leaning that way with me a little. I am pretty leary of that method, but have not done any research on either. I just sounds so extreme and scary. I understand the fear factor for RSD and spreading to the implant site - is that what you are battling? I have a friend w/ it and she has been a great support all these years for me. She understands all this crud that now one else does other than this online group does. I have read some of the SCS threads and am more confused than ever. I just don't know what is right for me. In all rights - my condition should "just go away". Ganglioneuritis is not supposed to stick around. But because we can not find out what the trigger is, the inflammation stays. ugh and double-ugh! I think i will go to the RSD thread and look at the ketamine threads to see what people have experienced - maybe it will help. I appreciate your help. I will also consider getting another pain dr's opinion.

Hi.
I have peripheral neuropathy and rsd. If you google Dr Kirkpatrick in Tampa he has videos of people under ketamine infusion. I had a lot of fears like you and still do but the videos actually comforted me though regarding myself I still feel nervous.
Trust me I understand not knowing what is right. I also get a lot of conflicting suggestions by doctors. For ex when I went to a pain doctor he suggested the scs so I went for another opinion who stated a catheter then went for a 3rd opinion and can you believe I got a 3 rd suggestion? I think research and just weighing the pros and cons.

Oh boy what a whirling mass of confusing fun ! So what did you decide? (If you don't mind my asking) How can you get educated yourself when all these educated dr's offer something different - that scares the heebeejeebee's right out of my skin!!!!!! And even doing the research gets confusing and difficult at times. For me, I get frustrated at trying to decipher whether something is sponsored by a particular manufacturer, or company. Also seeing contradicting information, articles or studies and then evaluating them for authenticity - ugh! Why all the inconsistency? My neuro would say because they just don’t understand most pn well enough, and I have to agree after what i have been through and read on this site - its like being in the 1600's and just beginning to explore the earth- and still thinking its flat! There is just so much confusion and controversy with pn. I am stunned on how little is know by the medical world in general. I mean I know 100x more than my pc dr. does just because I am always reading things here and going through what i have gone through. well enough of that

Thanks for the link - i will try to look at the video. I have slow-motion-dial-up and-600-year-old-phone-lines So videos often wont load, but I would like to take a look.

I just got a call from my pm dr and he had talked with my neuro who wants to put me on fish oil and aspirin? uhhhh? I need help with that... Now I think mrsD has talked about fish oil - but is that to help with pn? and what does the aspirin do for pn?