1. Community
  2. Injury and accidents
  3. Accidents and Injuries

Anyone with Central Pontine Myelinolysis

Posted , 49 users are following.

elaine04862
elaine04862

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.

4 likes, 280 replies

280 Replies

Prev Next
  • christina87896
    christina87896 elaine04862

    Posted

    Hello, my father was diagnosed with cpm about 3 months ago. He had undergone a liver transplant and was fine but 3 days later he a seizure and was diagnosed with cpm 2 weeks later. He was in a coma for 3 weeks and has slowly been recovering some movement. I wanted to learn about your experience with cpm to see if there is anything we can be doing to assist in his recovery as well as to better treat him. He is also very aggressive and we were wondering if this was normal? Did they ever prescribe anti-anxiety medication?
  • dudley1978
    dudley1978 elaine04862

    Posted

    Hi I had cpm almost 10 years ago and gone on to make nearly a full recovery. my short term memory is still a problem and I do take medication to help me sleep and for anxiety. 
    • Scaggsgirl4
      Scaggsgirl4 dudley1978

      Posted

      Dear dudley1978

           I was hoping that you could possibly shine some light on your recovery, and what that was like. What helped, what made it worse. My little sister has CPM & ECPM as well as PBA caused by CPM. She is currently in a rehab but is unable to walk or talk very well, and she pulls her arms up to her chest and cries when you try to move them. She is in constant pain from her legs and feet hurting. I would appriciate any help you may have, or insight to this. Thank you

  • beth97920
    beth97920 elaine04862

    Posted

    I was in ICU for 33 days, and in the hospital for 3 months.  Rehab took a full two years, I was diagnosed on July 25th, 2011.  It has been an incredible learning journey, which I am still learning.  There are so many major and very minor changes that I am still associating with C.P.M.  I would love to provide any help I can, and now it is going on to my 5th year, and I am still surprisded by the minor improvements I thought were permanent!!!  I also had pneumonia and a tracheotomy at the same time.  And then there are all the little differences no one knows about or seems to mention....please contact me and I would love to discuss!  God bless you for reaching out to others!  I was totally in the dark on this!  beth

     

    • christina87896
      christina87896 beth97920

      Posted

      Hi beth, my father was also in the hospital following his onset of CPM, which was last september. He has been recovering very slowly. He is currently in speech, physical and occupational therapy and I was wondering if these helped you in the recovery process. He went straight home from the hospital and was never in a rehab program because the drs didn't think he was responsive enough for rehab. His improvements have been at home on his own and at his own pace until about a month ago when his neurologist thought he might benefit from therapy. However I think the therapist are expecting quicker results and I feel that with cpm the results that can be expected are different than with other brain injuries.
    • beth97920
      beth97920 christina87896

      Posted

      Hi Christina!  I think not only is CPM totally different from other brain injuries, but also amongst CPM patients recovery is totally different....at least that is what I was told.  Also, that is great that your father is getting all that therapy now and I had that while in the hospital, plus my physical therapy continued at a neurological center for a year afterwards.  I also continued my own therapy of just continually challenging myself with the things I found difficult and eventually was able to accomplish a lot of things that most people take for granted.  It sure is a long, tough road isn't it?  How is your father doing now?  Tell him to hang in there as it slowly gets better...but boy is it slow!  I sure would love to hear how he is doing and it is great to finally be in a forum where I can read about other people's experiences.  I wish you both the best!
    • christina87896
      christina87896 beth97920

      Posted

      This is really tough, especially for my father who was such an active person before and never really liked depending on anyone. He is doing well. The progress is slow though. He still can't talk or eat sufficiently orally to remove the peg. He is also in a lot of pain, they recently started to stand him up using a lift and that is causing a lot of pain to his legs. But I assume that is normal as he has been bedridden for 7 months. Did you ever have a masseuse give you massages for pain? The therapist warms up his muscles for exercises but we are thinking a massage might help with the pain? We are all very hopeful that with time he will improve more and more however slowly. 
    • beth97920
      beth97920 christina87896

      Posted

      Friends and family would massage me, and my pain has subsided now.  I too was extremely active...use to train for years with the Olympic team (run with them long distances)...I can't pretend that I dont miss that level of activity...but I am ecstatic that it is improving way beyond what I thought was possible. No one explained to me that eventually I would have any movement...the nurses never gave me a buzzer because I couldnt move my fingers, my sister just hoped I could eventually move a finger.  No one knew anything, but now I can walk.  I did take painkillers for the pain for a few months.  Then it seems moving around more actually helped somewhat.  I wonder if some people experience more pain than others...I wish I could ask someone!  I sure hope he starts feeling less pain!  And you are right!  The progress is super slow...but it is so exciting after so long to have more abilities.  Let me know how he is doing and be sure and tell him my thoughts and prayers go out to him!  take care, beth
    • joe64679
      joe64679 christina87896

      Posted

      I think it is a little tricky treating the pain because you don"t want to desensatize the nurves. I had a lot of pain in my left elbow and when starting to walk again. It will get better. I see a massage therapist biweekly who used to be a trainer so he understands hows the muscles work. They also had me doing yoga and that helped as well. I got an adult tricycle so I could get outdoors and ride and now I'm on bicycle. With a helmet, of course. No more brain injuries for me, thank you!
    • christina87896
      christina87896 joe64679

      Posted

      Did you guys have vision problems? My dad is complaining that he can't see at times but at other times he seems to see ok. We took him to the ophtamologist and his eyes are ok but the dr says he is definitely have trouble seeing as he could only identify that large letters on the eye test chart. But then he goes to the speech therapist and identifies smaller items on charts. Anyone experience this?
    • joe64679
      joe64679 christina87896

      Posted

      My visioin did change and they told me to no longer use my old glasses because it wwould give me headaches.
    • joe64679
      joe64679 beth97920

      Posted

      Beth, can you type now? I used to type  75 wpm and now have to hunt and peck the keys. It's so frustrating. I constanttly have to reread what I type to ake sure I don't hit the wring key. LOL
    • beth97920
      beth97920 joe64679

      Posted

      Yes, I can still type, but not as fast.  The fingers and all my dexterity took so much work!  A friend of mine was a teacher, so told me to start doing writing exercises again....to get the cursive writing back to par.  There seems to be certain letters that are important to practice.  So finally 5 years later they are both close to normal...but in no way will it ever be the same again!  but I can get by both in writing and typing...just slower!
    • Scaggsgirl4
      Scaggsgirl4 beth97920

      Posted

      My sister is making faces and crying out loud constantly now for the past 3 to 4 days. She has been receiving stronger and stronger meds she gets her first dose and it puts her out and she sleeps. But it's only for short period p time. Then it's starts all over again. She reacts to touching her arms legs and head like its excruciating even years start to come to the corners!
    • beth97920
      beth97920 Scaggsgirl4

      Posted

      That sounds so horrible!  I couldn't speak because I had a tracheaotomy (sp?)...but what do the nurses/doctors think?  Has anyone else experienced this?  I had some discomfort for a few weeks in the 2nd and 3rd month, and on these boards I have learned that the experience varies widely amongst people.  Please let me know what you find out.  I sure wish I could be of more help!!!  

       

    • Scaggsgirl4
      Scaggsgirl4 beth97920

      Posted

      Ther nueroligist has actually signed off after only 4 weeks. Very concerning. The doctors I don't thing know anything g about it to tell you the truth. Thank you for your feed back, and I will most definitley get back to you as we go along. Also wondering if any gas experienced locked in came out and then went back in after a few weeks?
    • beth97920
      beth97920 Scaggsgirl4

      Posted

      Hi...I sure wish I could be of more help!  The first few weeks are still super foggy.  I know I had locked in syndrome and that was verified by a few different doctors.  I wasn't in reality in my head either.  It was very dream like.  But I still seemed to understand a few things I heard people remark about.  Even after 5 years I still remember those "dreams" with such vivid detail.  I will never fully understand what either I went through, nor the people around me.  Even when my eyes were open, I wasn't seeing things properly.  It was all like a series of weird dreams.  That is my experience, I actually don't know if that is the same or not as other people.  I sure hope you get some answers soon!  I would be interested to hear what other people experienced!
    • Scaggsgirl4
      Scaggsgirl4 beth97920

      Posted

      Most definitely I will continue Ito communicate with you and let you know how she is doing. Thank you for your help! God bless!
    • beth97920
      beth97920 Scaggsgirl4

      Posted

      and God bless all of you!  I also forgot to mention that over the 5 years I have mentioned to many doctors that I have this condition.  You would be surprised at how many have never heard of it, that is how rare it is!  take care!!!
    • joe64679
      joe64679 Scaggsgirl4

      Posted

      Beth is right, remember she can ear you. My dad aasked the docs why I was crying so much and they said it was thne nerves regenerating and they also commented on how animated my expressions were. Sleep is good, it's a time for the body to recover. Every healthcare provider I've told is surprised I survived!
    • beth97920
      beth97920 joe64679

      Posted

      Yes, same with me Joe!  My daughter now calls me "Miracle Momsie"! beth
    • Scaggsgirl4
      Scaggsgirl4 beth97920

      Posted

      I would love any information you can give me on this. Please contact me if you like @ 918-500-1784 my name is Julie and my little sister has CPM & ECPM as well as PBA due to the injury. Thank you beth 97920
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.