Hi anyone out there have any information on central pontine myelinolysis , my 26yr old son has been diagnosed with this condition. He has been in hospital for 6 weeks and spent the last 4 weeks in intensive care, he went into hospital on Christmas eve after having seizures to do with alcohol withdrawal the first couple of days he was doing fine then things started to go wrong. He started to loose his balance he started slurring his speech and was getting very confused. He then lost his ability to swallow then started to slip into a coma at which point intensive care induced him into a coma and we were told not to expect him to survive. A week later he started to come round and could breath for himself but could only use his eyes,3 weeks later and he can communicate by blinking his eyes can squeeze my hand with both hands can wiggle his toes and can understand everything we say to him. We know we have a long way to go and don't know what the long term recovery is but would be grateful for any info from anyone who has come through this condition.
I am a central pontine myelinolysis survivor and trying to find more information about rehab and treatment.
Hi, I have CPM and have had it since 2005. I am so sorry to hear about your sons condition and appreciate that your original post was written some weeks ago. May I ask how he is doing now? Please ask me anything that you wish and I will try and answer the questions as best I can.
Best wishes,
Kelly
Hello Kelly,
I was diagnosed with CPM in November of 2012. I have made a remarkable recover from I'm told. I can complete most task, except I have tremors in my hands. Did you experience this and how did you overcome the obstacle?
I live in Houston, Texas and have had a lot of rehab. People have told the one thing that need work is my speech.
Thanks,
Joe
Hi Kelly and Joe, My son is doing really well he has been out of hospital for 3 weeks even though he discharged himself because he was so impatient he wants to run before he can walk. He has regained the use of all his functions even though his walking is still very stiff and often gets shakes in his legs, his core still needs a lot of strengthening but overall doing ok. It is his mental state that seems to be affected more than anything else, his short term memory and acting quite childlike at times either having fits of giggles which he cant stop or having a tantrum if he cant have his own way. We know that his sodium levels were raised too fast and have the proof but where we go from here I have no idea . It is good to be able to talk to others who have gone through and are still going through this condition as there are not many I can talk to that know about this condition. Thank you for getting in touch.
Many thanks
Elaine
Hi Elaine we are a family out of r minds my niece who is 27 has just been told she has CPM we have never heard of it and don't know what her outcome will be we we're told she came of the drink to quick' she is in ICU at moment difficulty breathing, but just knowing someone else has had similar experience helps. My sister just can't cope as my niece has an 18 month son. My niece is just moving her eyes but not sure they are focused on anything, and she keeps trying to mover her hand but that's it. Any information from anyone will be grate full.
Hi Elaine, sorry to hear about your niece. May I ask, did she just decide to stop drinking one day and did she do it at home? Cpm
has many different outcomes so it's very difficult, even for doctors to give you a prognosis. Without wishing to scare you it can be life threatening but equally it can have a very good recovery too. I still suffer with poor balance and it affected
My eyesight, I have double vision and something called oscillopsia. That means when I move my head everything spins which also affects balance. I currently use 2 walking sticks but bear in mind that I was in a wheelchair when I left hospital. I have problems with my bladder also but not entirely sure that's cpm as I have neuropathy also. I was extremely poorly when in the hospital but not quiet as poorly as your niece. It's common to have leg and arm tremors but for a lot of people they get better with time. She will likely need physio to help balance and strengthen her muscles too. You should note that some people make a complete recovery. Are you in the UK? Let me know and I will send you some links to the condition. It's considered a very rare condition and information is hard to come by. If you have any questions, please feel free to ask.
Wishing your niece a speedy recovery..
Best wishes, Kelly
Pamela, Kelly is right about recover. Your niece may be dealing with "locked in syndrome". I had this but could commicate by eye blinking. Please remember that she may be able to hear what is being said around her.
Hi Pamela,
As Joe mentioned, your neice could be experiencing "locked in syndrome" at the moment. It's almost like being in a paralized state but often the patient can hear what is going on around them but cannot respond, either verbally or physically. It's very helpful to talk to her and encourage her and of course, it's best not to say anything in front of her that may frighten her as she cannot respond to it and she is then left there worrying. Perhaps just talk to her about her daughter, tell her how she is doing, that she misses her mum...that kind of thing. Please update us when you can as to how she is responding....take care and best wishes..
Kelly
Kelly thanks for your help fullwords, yes my niece has drank on and off for few years but did just stop drinking at home, but WK or so before that had started vomiting an weakness in legs but thought it was the drink, became confused and was taken to hospital,we're they gave her vitamins, after five days sent her home to recover, but two days later become worse was taken bk to hospital and over WK become so I'll and now still in ICU, was sedated again last note due to mucus building up an she can't swallow,yes living in UK would be grate full for any links or info, thank again
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Thanks Joe we're you really bad it looks like my niece is moving her eyes but they are not focused, I also believe she can hear us although there is no responds or movement, thanks again for you input
Yes, that sounds like classic CPM. People often start to perk up before it kicks in. Swallowing is a common problem, it's called dysphagia..
The following link takes you information from The British Medical Journal, it is quite long but will give you lots of helpful information. You will note that the studies into this condition are very limited but it should go some way to explain some things. If your not sure about anything or have any questions, feel free to ask away...http://jnnp.bmj.com/content/75/suppl_3/iii22.full
I was locked in for about two weeks. I then started involuntaryly moving my right foot and progressed from there. I stared physical and occupatuin therapy. Now about one and a half years later I have difficulty with balance and tremors in my arms and hands. I had Botox in one arm, right lip and my brow to release tension and help to train my muscles. It takes me longer to do some things but I'm working on it.
Glad to hear that you are making steady progress Joe....
my name is frank and i have cpm.would love to talk to you about it.
Hello Frank! How are you?
Hi Frank, my sonKieran who is 26 has got CPM and is doing very well. As my original email I thought I was going to loose him but today he is getting stronger and healthier . He can walk and run but has balance issues , if he closes his eyes he has no balance at all. He can act very childish at times it's like I have a child again, he can be very argumentative and mood swings can be off the scale at times. He attends a brain injury group twice a week and has a social worker, but in one way he is healthier and happier now he no longer drinks than he had been in years. I will be happy to answer any questions.
hi joe,
frank here. have had cpm since 2004. stayed un hospital 9 months. i have a lot of issues. how long were you in hospital?how bad are your balance problems? can you control anything? do you have any problems with phelgm bn your lungs? i am 57. how old are you?
hello,\frank here. i'm 57, live in mississippi. i have a bunch if issues, but they are manageable. how long did your son stay in hospital. i stayed in 9 months. got cpm in 2004. i have worked out 2 or 3 hours a day for 7 years. can't control anything, but can manage them. i like to hear what other cpm survivors are going thru...