Ketamine injection and Neurostimulator implant
 

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 -:eek::D

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 :p! 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 :deadhorsebeat:

Thanks for the link - i will try to look at the video. I have slow-motion-dial-up and-600-year-old-phone-lines :grin: 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?

Fish oil and aspirin are anti-inflammatory. If there is an inflammatory aspect to your pain, the aspirin will work.

Some posters here report aspirin helps them.

Fish oil helps with nerve repair of the myelin insulation that may be damaged. It also thins the blood a bit and helps circulation.

You have to be careful with aspirin though, careful to not damage your stomach and small intestine.

Thanks mrsD that helps alot - I have been going crazy doing searches and you had already answered my question - your quick!:p

p.s. - I love you new kitty pix!

Right now I am holding off on any treatments. The confusion I feel is each doctor has what I call their "thing". So usually and not always but most of the time regardless of difference of patient if you have X dx they will suggest the procedure they do. So if you meet with a pain doctor who does a lot of scs that will be his suggestion but may not be the best for you. The issue with these conditions I feel and even if we use meds for ex what helps one person may not another or what gives a person a side effect may not someone else. I guess for myself if I chose in future to do a treatment I have accepted that it is taking a chance. The chance may make things better but also may come with risks. At least if I get feedback and I really like feedback from patients that I find from sites I can make an informed choice. Good luck with what you decide

Hi Adelina & Daniella, I have had Ketamine treatments. They are not easy. If they work I think they would be worth it. They really take alot out of you. You will really be out of it. You need a lot of support while you are getting them. I did have hallucinations after the treatments. I don't really remember alot while I was having them done. Where I went you had to take Ativan before yu got there. I tended to get sick at my stomach from it so during the rx they gave me IV zofran. They also gave something else with the treatment in your IV but I can't remember for the life of me what it was. I was monitored the entire time to be sure my B/P did not go up and for other s/e.
Unfortunately, I had these treatments under a dx of RSD. After I went through them every doctor I saw after said you ABSOLUTELY do not have RSD. They would ask me who dx it and every single one of them rolled their eyes when I told them. The doctor who diagnosed it told me he could make me pain free so I jumped at it. So be careful!Get more than one opinion on the ketamine. Don't go through it if it is not going to work.
That being said I do believe it is a Godsend for some people. I saw people with RSD get wonderful results with ketamine. Hope this helps.

Thank you sooooo much hopeful. This is very helpful to hear from poeple I feel that I know. Did you have the very heavy dosage; the ketamine infusions as I am now understanding it? I have only had the injections of Ketamine given over a single hours time and it helped. It sounds like you did the heavy dosage done over multiple hours or days? I only had mild hallucinations during the procedure not after that were not at all bothersome. What sort of hallucinations did you have (if you can tell about it)? So what is your diagnosis then, and did it not help you at all? Did you feel temporary relief or did it make it worse? It sounds like it really wipes you out which can really effect you negativily - that worries me. Thanks again for sharing and please dont mind my intrusion -if i'm to much of a busybody let me know.

http://www.youtube.com/watch?v=0p7Zp3c8pvo

interesting link of a patient being interviewed. Its very worthwhile telling the doc if you have sleep apnia.

The chap in the vid is suffering a great deal of pain, you can see his toe nails are several inches long. They are talking about placing him in a coma for the treatment

Yes this is Dr Kirkpatrick the doctor I was talking about the videos. This gentleman was not able to have the ketamine and had to go ip but Dr K has others that did have it and shows them while under.
In terms of dose they monitor you so that they can adjust doses I think. From what I researched it is so key to work with someone who does a lot of ketamine infusions because it is so key to have the right dose or it does not work etc.
Like hopeful said and I did I really feel extra opinions are important. When ever I hear I will be pain free or fine by a doctor I don't believe it because I heard that a few times over the past 5 years and am not. Sorry to be a debbie downer but have to be realistic and cautious too.
Feel better

When I started the treatments, they took about 4 hours a day start to finish. I had to do 5 days a week for 2 weeks. Very high doses. Couldn't walk very well after so I always had a family member with me who took me home and put me to bed for the day. Then I think once every two weeks or month for rx for two days. I did go to someone who is very big in The world of Ketamine treaments. Doesn't mean they can't be wrong. Still go for another opinion. I honestly think my doctor told everyone they had RSD. At least that is what I have been told from every doctor I have seen since then in a evasive way. They won't come right out and say it.
This was very early in my PN. I have been told I lost valuable time to be treated properly for my PN due to the fact that the earlier treated the better. Please know I am not bashing the treatments as I said I did see remarkable things for patients with RSD.
As for the hallucinations I don't like to talk about them much. I will give you one example I kept waking up during the night thinking I had hugh spiders crawling on my bedroom ceiling. The one night I was out of bed wide awake telling my husband they were still there. It took a while to calm me down. I had to delete a few of the songs I had on my ipod that I listened to during the treatments. I think they were the ones that seemed to always be playiing while I was coming out.
Again I would have even gone through that if it left me pain free. I'm sure everyone here can understand that. I was new to PN and scared to death.
hope this helps:) I am not trying to scare you just being very honest about what happened to me

Mrs D or anyone do you take the asprin everyday? I know my parents do for the heart I think baby ones? If you are younger though is taking asprin everyday ok and if it not for the heart? How much is one supposed to take for anti inflammatory?
Sorry to ask question on your thread
Hopeful I am sorry you were misdx. I know one pain doctor I saw who was trying to identify what was causing me the pain the PN or RSD said some doctors will just dx with RSD when it is not but when they can't find another cause. I know when I looked into ketamine after you were supposed to stay with someone so they could monitor you. The hallucinations seem to vary a lot from person to person. Hopeful if you don't mind could you PM with who you saw?

Wow hopeful that is astonishing, thank you so much for sharing what you did with me. Because you have been with me through much of what I have been going through lately and the support and information that you give, I really respect your opinion. So the feedback on these intensive treatments that you give really helps me - so thank you very much for taking the time to write/type that all out! It is full of good observations. I don't know if that is where I will end up, but I do know my pm dr. is hinting at it. You have made me feel a lot more comfortable at least considering the idea - because yes, if I could be pain-free too, I would do it. But I also do not have RSD, so... we'll see.

I am really, really sorry you had to go through all that though. It is tragic that you go caught by one of those dr.s that is more interested in the procedure than the patient. As I read your post it was so hard to think about what time and resources you had wasted, as well as the anguish you must have felt when it did not work. I am so sorry that it went that way for you. You have been such a supportive person for me I wanted you to know that it wasn't all for 'naught; because you see, if you hadn't gone through it you couldn't help myself and others here. I am sure that is not enough to make it worth-while before the fact, but maybe after the fact you can see the benefit of having gone through for the rest of us!:hug::hug: thanks!

Hi daniella my neuro just started me on 2000mg of fish oil and 325mg of aspirin daily for the inflammation I have. I don't know if this is what everyone takes though - but it is what comes standard OTC. I have only been on it for two days though, no reports of an effect yet :rolleyes:.

Thanks yea I take fish oil supp and flaxseed too. I think these things take a long time to work. Someone can correct me if I am wrong but just like diet changes etc.
Hope you feel better