ketmine

[Barbara N]

How many of you have ever gone through the Ketamine treatment to stop pain? I just finished a one week course, they say I will need to repeat it in 6 months but then it will be given orally, during which time my pain should decrease and I should be virtually pain free. If not they give you another dose. It was not objectionable at all, I just sat for a few hours with the drip in my arm and the basically slept. I have never slept so much or so well. so far I don't have any pain and I was just going into a decline. So Far I think it is great. The week after the course I felt more stoned than while I was on it so you have to be careful when you are released because you are NOT ready to take on full responsibilities. this is a great for me because next week I have to go to Madrid to get my eyes operated on and now to look a a hernia that I just seem to have gotten. It was wonderful to get home and find all of the nice noted from all of you, Thanks to everyone. Can anyone tell me what the tests are to determine if you have tracheal stenosis, If so I would be appreciative any helpful information. you are the best set of pals a weggie could ever want. I am so glad to be part of this group. animo, Barbara

[HopeinTN]

I hope you continue to do better every day!

[drz]

To check for stenosis they have always looked with either a gastroscope or the mini camera through to nose to see what is going on down in the throat. The first is more invasive and is a day hospital procedure but then they stretch it if needed. The second was done in the office as an outpatient procedure

[Debbie C]

Barbara what was your pain caused from? I'm asking because my mother had to have 4 back surguries.One of them was to put rods and screws in her back and a pain pump with morphine implanted in her stomach. She just had to have it all removed 2 years ago because she got a blood infection. Now she has to wear a fentanyl patch for pain they we change every 3 days and she also takes pain pills. But she is 86 and I don't know if they a type of thing she should try.

[Barbara N]

My pain comes from a lot of areas. I broke several bones in my face had a very bad year of surgery and treatment and the WG has attacked my eyes and ears severely. The bone in my face is disappearing rapidly and my upper jaw is now gone more or less making it hard to speak or eat. Everything seemed to happen at once. In the first hospital I got Rhodatarula which is a fungus, hard to find, in you blood and it destroys your kidneys and heart. I think I already had WG when I had my accident I just didn't know it. Now I know so much more. I have a lot of nerve pain and pain that goes right to the core of the bone. then you add on top the pain you get from the different problems wg gives, It is kind of a mess. It has only been a week since my ketamine but I haven't had any major pain to speak of at all. I actually feel great. I was a bit spaced out for the week after and slept`t most of it but now I am up and riding again leading a normal life. they say I need to repeat the treatment in 6 months then they will know if they can pull the drugs or not. If it can keep me felling like this then I think it is great. We will just have to wait and see. A few days ago I was upset because I didn't feel competent enough to work with or handle my horse and that right now is my life line. Now the after effects have worn off I feel completely in control and like my old self. Most of the people getting the treatment were elderly people with bone pain. I hope they find something that woks for your mom- so far I am very happy with this.

[Alysia]

Hi Barbara
Im glad to hear that you are feeling much better, and that you are riding again. I belive your horse missed you.
good luck with your operations next week !

[Debbie C]

Wow Barbara I didn't know it was that intense,I'm so sorry you are going thru this. Did the WG or the medicine for it effect the bones in your face and jaw or is it from the fungus you had. (Just tell me it's none of my business if I am too personal )
I am just so happy for you that you are feeling better and hope it just keeps getting better everyday so you can get off those other meds. Can they do like bone grafts to fix your jaw...that must really be horrible for you. Well at least your back in the saddle again !!!! ANIMO !!!!!

[Barbara N]

Wow Barbara I didn't know it was that intense,I'm so sorry you are going thru this. Did the WG or the medicine for it effect the bones in your face and jaw or is it from the fungus you had. (Just tell me it's none of my business if I am too personal )
I am just so happy for you that you are feeling better and hope it just keeps getting better everyday so you can get off those other meds. Can they do like bone grafts to fix your jaw...that must really be horrible for you. Well at least your back in the saddle again !!!! ANIMO !!!!!

I don't think we worry too much about getting to personal around here. In my case they really don't know but the only solution was to put a titanium jaw that they said would take years and multiple surgeries and they had no gaurentee that the bone holding the prosthetic jaw would last long enough to make it worth while. I think in hind site they were right because a section of my eye socket is disappearing and the wanted to put a titanium staple, more or less and now we are glad that they didn't because the bone around there is gone now so would the prosthetic too if they had done it. It just seems to go for the bones in the face skin and tendons, membrane from all over.. three times it has completely eaten the right side of my head and they have had to put skin graphs. I have had to have my eyes operated on three times already and in two weeks >I should go in for the forth . At least they are really good when they operate here they take all of the biopsies and horrible things while I am sleeping and I bless them for that because I am a terrible patient-. I went into remission a few years ago for around 2 years and then it came back with all guns blazing. My horse gives me so much benefit, not just mental but physical as well. When my kidneys get bad I have a sieries of exercises that can bring most of my blood levels down near normal. I am traing my horse now to do our therapy but she still need another 6 months before she is completely ready. Our therapy horse was a vaulting horse, we found that worked best, and she went lame. We are looking for another vaulting horse because this therapy that we have developed over the last three years is very different than just riding. It really has nothing to do with riding except that a horse is involved. I am so excited about the future possibilities of this therapy, it may be able to help thousands. I have a cancer patient working with me and a woman with a weak heart. we all improved our quality of life so much and have all gone down since the horse went lame. We get benefit from riding and a lot of the exercises we do but it isn't the same. I could talk for hours about my horse, what a great prescription. ANIMO

[Debbie C]

Barbara,sorry to hear about your horse going lame,is a vaulting horse one that jumps over rails ? I hope yr other is ready to go soon.Are there any riding stables around there with those horses you can ride in the mean time till yours is trained ? And I am SO sorry with all the problems you are having with your face that must be just so rough for you. If it were me I honestly don't think I'd be able to handle it. You are a VERY strong woman. Is it the fungus that is spreading thru your bones or is wegeners doing this to you? I hope the ketmine treatment is still working for you. Take care and I'll keep you in my prayers, ANIMO

[Barbara N]

They both sound horrible,I hope they do the test while <Im out anyway. It would save a lot on the nerves. We don't know much about the rhodatarula except that it moves slowly, the mortality rate is very high. Because they suspected >I had something else as well they tested for more than the normal. I was on coritsone for a while then when the kidneys started to fail they brought in the pred and something to help . I HAVE HAD THREE SERIES JUST LIKE THE tv SHOW HOUSE, they did every test know to modern medicine all of the biopsies turned out neg or false negative. I was on so much medication for over 6 years and it was killing me and my family. since I felt so much better after my riding therapy I decided to try it without my meds. I had no doctors counsel, it was a personal decision. It worked out really well, even the doctors couldn't believe it. Now I am off to Madrid to get my eyes fixed and have some hernias taken care of-I feel really positive right now and I must stay on that track because it is so easy to come derailed for any reason. My family are really good at keeping me going even if I don't want to. It helps so much to have a good support team and all of you Weggies are fantastic. I know some of the medications that they were giving me were making my situation much worse . I was 6 years on most things pred, chemo, heart medication iron, stomach protectors even baby aspirin,not to mention all of the uppers and downersI am getting off topic now so I will leave you with that for the thought of the day. I sound worse than I am But stick to your yoga alot of out ecercizes are yoga basesd a especially the breathing relaxation and stretch. ánimo to all, Barbara.