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Sun, Mar 10 3:59pm · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

Hi, my name is Skip, I wish there was a section for Cauda Equina Syndrome within the chronic pain section. It's such a rare disease to have it's hard finding others who have it. I had back surgery in June and had a blood clot that compressed the nerves at the nerve root witch caused me to have this terrible disease. My pain Doctor only allows me to take 40mg of morphine twice a day and 30mg of Percocet every 4 hours. It helps some with the pain but I wish it helped more. I'm In a significant amount of pain with the meds. She has stated that the amount I'm on is a huge amount. With all due respect I told her she's wrong. They wanted me to change the script to 1 40mg pill instead of two 20 mg pills. Wish I never went down that path. Between the ins comp. Dr. office and Pharmacy we have spent hours a day for more than a week and a half trying to clean up the mess that it has caused, just ridicules, I'm now almost out of Morphine because of this issue. Need to start calling again tomorrow because the pharmacy can't get a 40mg tab of Morphine. So now it has to start all over again and go back to 2 20mg pills. What a mess it has become to just get pain meds because of the opioid crisis. Not my fault People abuse it to get high. Maybe People who do so should realize that they not only hurt themselves, family, and friends but millions of People that need them to help with severe pain. My pain Doctor has diffidently underestimated the amount of pain that is attributed to Cauda equine syndrome. They have never had anyone with this condition and I'm kind of a Guiney Pig. They don't even no if it's safe for them to give me injections????????????? All I want is help!

Wed, Mar 6 9:57pm · Cauda Equina in Chronic Pain

Already had my first appointment with a new Surgeon, will never go back to the hospital I had surgery at, nor do I ever plan to see my Surgeon that did the surgery, unless it's with Lawyers staring at each other across the table. Had my new Surgeon contact my pain Doctor, I'll find out what he said to her at my next appointment. Seems like he's willing to work with her. I agree with you, I'm not going to let a Doctor treat me like he did. especially when he handed me my diagnosis written on an envelope so I could google it. Never even discussed my diagnosis with me. I have an appointment with my Neurologist later this month, He recommended the Surgeon for back surgery. Should be an interesting visit seeing I'm going to show up in a wheelchair. I don't hold anything against him, he had no way of knowing it would turn out this way. I've been seeing him for about 15 years so we're a bit bonded I guess.
Did anyone tell you the nerves have been compressed at the nerve root? That's what the blood clot did to me. I told the Lawyer that when I was brought back to my room in intensive care my Son saw that the tubing for the drain in my back was pinched off and the drain was not working. Next day they had a new style of tubing. Not sure if that was the cause of the clot or not. Lawyer didn't seem to be enthused about it. I'll have to see what they find in the records. My new Surgeon asked if I had talked to a Lawyer, I said yes, then he said They will want his records as well. He told me the first surgery has caused the need to have another surgery below the first surgical area. Next time I see him I will request that he has the MRI's in front us so I can see what he's talking about. after 2 back surgeries and a prostate surgery I'm a bit gun shy as to having another one. I can only hope that someone listens to you and you get the help you deserve.
out for now,,,,,,,,Skip

Mon, Mar 4 10:15pm · Cauda Equina in Chronic Pain

thank you

Mon, Mar 4 10:09pm · Cauda Equina in Chronic Pain

My CES was caused by a blood clot after back surgery. They did the emergency surgery within the allotted time but significant nerve damage was done.

Mon, Mar 4 10:05pm · Cauda Equina in Chronic Pain

I'm happy to hear that your in remission, that's great. I no that the neuropathy is bad because mine was bad before surgery, now I have bad pins and needles in my feet from surgery on top of the neuropathy, I know it really sucks, All the numbness and pins and needles makes it feel like I'm walking on a dead foot. I always considered my self as being pretty tough old SOB , I do take pain very well but this can get pretty bad. I'm a veteran and VA took my pain meds away so I went three years with no meds, pain got so bad, that's why I decided to have the back surgery. They said my sciatic nerve was crushed in two places so you can imagine living life for three years with condition. Only some weed to help, I finally found a strain of Marijuana that helped my pain
I've been on disability for 17 years. Had A cerebral brain hemorrhage in 2002, caused moderate brain damage and almost killed me. Ended my career and now I have another life altering issue. At times life sucks bad but I say it's like standing at the plate, always take your best swing and go on to another day. So dealing with A law suite is no big deal, it's just the waiting around to find out if I even have a case that bothers me a bit.
As you I love you tube as well, Any time I need some info or just want spend some time exploring I go to YouTube. Seems that everything imaginable is on it. There are some people that share their CES experiences on there and I've learned from that. One guy was doing therapy for his CES, but I could see that the type of machines he was using told me that his therapy was very expensive. I guess if you have money you may get better help. I'm trying to walk more without my cane, doing this, I use different back muscles, It's really hard for me to walk though because of the nerve pain. I no this is kind of hard for me to say but I have rectal nerve pain besides the pain in my legs and back. I guess you could say it's a real pain in the butt, smile. have to make fun some times.
been great talking
Skip

Thu, Feb 28 4:14am · Cauda Equina in Chronic Pain

Hi Lori, sorry for not responding sooner, seems I spend most of my time at Doctor visits. Sorry to hear about your cancer, are you in remission? I hope so. I have looked into CBD oils, currently I'm a medical marijuana patient, found a strain of weed that seems to help some with pain and I'll take anything I can get. The strain is White Widow, everyone has their own strains so it depends on where you purchase seeds from, not all White Widow strains will be the same. Marijuana helps me with a lot of things that I deal with like insomnia and at times just getting through the day. Talked to my new Surgeon, he ordered EMG test on both legs and discussed another surgery that may help but I'm real gun shy about more surgeries, at least right away. He asked me if I had a Lawyer, I was a bit hesitant but I said yes and the reason he asked was he felt it was important that they get his records as well. Seems the surgery he says I need was caused by the surgery I just had. So far two Doctors have made suggestions that I should sue the Surgeon that did my surgery. The idea of suing someone doesn't sit well with me but someone needs to pay for what they did to me. I'm 61 and feel I have some years ahead of me but now the prospect is dim.

Fri, Feb 22 10:09am · Cauda equina syndrome (CES) in Chronic Pain

Hello, my name is Skip, 61 years old. Got CES from a hematoma after back surgery 8 months ago. I have been steadily getting worse with nerve pain since surgery. I have a long story but I won't get into it at this time. Don't want to bore you, smile. I haven't had CES as long as you but I'm also scared, and no how you feel. Seems like Doctors don't have a clue what to do and friends and family don't understand. I was on a catheter for 6 months. I had an enlarged prostate, due to that and the week bladder from CES, I had prostate surgery. Wasn't any fun but after surgery I was able to urinate on my own and got rid of the catheter. Thank God for that.
I still suffer from all the normal CES problems, balance, have to use a cane, walker of wheelchair depending on how far I have to go. Numbness and pain down my legs, pins and needles in my feet, severe back pain, Rectal nerve pain that is awful. Going to a new Surgeon Monday, I hope he will have some insight on CES. Please get back with me, together we may find some answers. …Skip

Fri, Feb 22 9:44am · Cauda equina syndrome (CES) in Chronic Pain

Hello, my name is Skip. Sorry to hear about your accident. I've had CES for the last 8 months, hematoma after back surgery compressed the nerves at the nerve root. I've done allot of research and I can't find anything about treatment post surgery. All I can find is about the emergency surgery that must be done within the 48 hour time frame after being diagnosed and what CES is. That's one of the reasons I got on this support group, In hopes to find out what others may no about any treatment. Get back with me, thanks for the response. Skip