sherry your spasm sound very frustrating with the additional problems they cause.. It does sound like you will benefit from advice on your incontinence during the night. We do have a bladder and bowel nurse who is happy to offer advice to members...would you like me to copy your post and email her? She may give you some advice that may be helpful whilst you are waiting for your appointment?
truwrecks...you are absolutely right..the poll should have allowed more then two votes. I think we could do with a general poll for all members and not just the CES one so i will post that up later and we can have an accurate guide then. Its my error when i set up the poll so..apologies
Post by ladylimpsalot on Mar 4, 2014 8:20:38 GMT -8
Luba84, I wonder if you have other problems in your back above the point of CES. I have several other herniated disks that cause problems. I think that several of us do.
I think that Medical Marijuana might be a great thing. It would certainly be better for our livers. I am currently drinking a wine cooler at night to help me relax and sleep through the night. And pot would take care of that problem too.
Hi all, I am new here but hope I am doing this ok. I was first diagnosed right sided ces in march 2011 and had an emergency partial discectomy, unfortunately the same disc prolapsed again on the left which left me with a left side also affected in sept 2011 which was treated by a total discectomy and fusion at L4/5. my spasms started mainly in the toes and feet and they were so painful and became more frequent and affected higher levels in both legs and even went as high as my right hip (this was particularly uncomfortable as it would make my leg jump involuntarily) My GP prescribed quinine at first but this had no real effect and then I started taking Baclofen 10mg 3x a day which helped to reduce the number and severity. I still have them but am coping with them now. If I do too much walking or such I have more spasms over the next few days and another thing that causes more is having a urinary tract infection or when I am having bowel issues eg. constipation.
Thank-you DJ, I wonder if we have to reach a stage of acceptance when disability strikes and then we can adjust accordingly. It has taken me a while to get to this partly because very few people know about CES. I was so convinced that when the first op was done that I would soon be back to my normal self, but hey-ho it was not too be. I would say that the spasms are one of the most trying problems that I was left with and no one had warned me about it which did not help. Still I am not as bad as some and I have found it a great help talking to others with similar stories.
May I ask, does a spasm in the bladder feel like a flutter rather than pain? Thankyou
That is the same feeling I get right before my bladder empties. No other warning and no time to get to the bathroom in time. Sometimes I get kidney pain before the flutter in the bladders. My urologist said it is the bladder walls spasming then contracting.
If spasms hit my bladder it starts out like a flutter and becomes very uncomfortable. I leak with every flutter and completely empty within a few seconds of the flutter starting. The urologist said it is Neurogenic bladder if I recall. Catheters make it worse and more painful. When I had a Foley I would leak around the catheter with every spasm so I still had to use a pad to keep my clothes dry. So far diapers have been the best way to manage since I have bowel incontinence to deal with also.
I don't have CES but I do get bladder spasms. I take two kinds of medication for this and still have them. :-( I install a Foley each morning and remove it at bedtime. Lately I am incontinent during the night again. Normally I am able to sleep through the night without cathing. This morning I installed the catheter and had I had doubts if I was in the right 'hole' I would have removed it and tried it again. I must have waited one minute before the urine started to come. I will see my rehab Md. in June so that will definitely be on my list of things to talk about.
As for protection, obviously it depends on the quantity that you are leaking but I used to wear regular diapers or pull-ups but have recently tried extra long and absorbant pads and they do the trick. I have had two accidents in the past 2 weeks where it went right through onto my cloths but I figured I was probably to blame, unless they were spasms which I didn't think of until reading this posting. I don't know what company of protection you use but I use Tena and they have different lengths and absorbency pads along with ones specially designed for men. I like the extra long ones in case I am incontinent of stool.
I use Abena M4 Comfort diapers for day and nights. They work pretty well. If I have to go for much longer times I have some diapers from Dry 24/7 that can last up to 10 hours without feeling like they are wet on the skin. Very good product indeed.
Thank-you DJ, I wonder if we have to reach a stage of acceptance when disability strikes and then we can adjust accordingly. It has taken me a while to get to this partly because very few people know about CES. I was so convinced that when the first op was done that I would soon be back to my normal self, but hey-ho it was not too be. I would say that the spasms are one of the most trying problems that I was left with and no one had warned me about it which did not help. Still I am not as bad as some and I have found it a great help talking to others with similar stories.
No problem! Yeah the acceptance stage is normal, I got to it pretty quick actually. Based on what I'm seeing here CES really is something that many (including doctors) don't know about. Like you said, there are always others "worst off" than we are so it's not too bad.
Welcome to the forum june . CES is so little understood by professionals and sufferers alike. I feel we can do much here by sharing our experiences and try making sense of it all. Maybe we need to ask Doctors to come and read member comments and learn from us.
On the topic of spasms again..i have started to get them in the back of my thighs now. This is a relatively new issue...It surprises me still what develops or changes especially when i am now 3 years on. I have noticed that the more upright mobility i do..the more spasms i experience, especially at night.
Having a strong bladder does not work in your favour as it increases the back flow pressure onto the kidneys. the norm is 400ml with each cath. if you are producing more maybe you should increase the number of daily caths. Drinking a lot of water helps to clear bacteria from culturing too.
Post by ladylimpsalot on Jul 10, 2014 9:33:37 GMT -8
I have never used medical marijuana DJ. I don't think that it has been legalized for much besides some childhood seizures. Maybe in the near future it will also be approved for muscle spasms and pain relief.
Post by impatientsue on Jul 19, 2014 8:53:24 GMT -8
I have a tumor on my spine at L5 and yes over the last month I get excruciating pain and cramping in my left foot. My toes bend backward and my foot turns to the right. It's paralyzed like that until the cramp goes away (which is in the bottom of my foot) it only lasts a minute or two, but can come right back again. It's very strange to see my foot arched in that position. I can't duplicate it by myself.
I have a tumor on my spine at L5 and yes over the last month I get excruciating pain and cramping in my left foot. My toes bend backward and my foot turns to the right. It's paralyzed like that until the cramp goes away (which is in the bottom of my foot) it only lasts a minute or two, but can come right back again. It's very strange to see my foot arched in that position. I can't duplicate it by myself.
Welcome to the forum impatientsue ....wow my foot does exactly the same! Im sorry to hear about the tumour...can it be taken out?
Post by impatientsue on Jul 19, 2014 17:03:51 GMT -8
Not sure yet....it's a schwannoma so it's attached to nerves. I go for another MRI in October to see if it is growing, that will determine whether they try to take it out. Best case scenerio is it hasn't grown and my symptoms don't progress. That means I can go another year before my next MRI.
I always thought sciatica was just a shooting pain down the leg, but do you know if can also cause this cramping in the foot? Or is this caused by the cauda equina nerve?
Also thank you for responding and welcoming me to the board!