Qustion Re: EMG Nerve Ending Test

demand a vent that does not bother him. take care. be well.

gene gbs 8-99
in numbers there is strength

I would think the EMG/NCV would be necessary information for the doctor and you. This way you know what kind of damage has been done. Would the doctor go over the results with just you and not share the details with your Dad?

Good luck!

Manitoban, why wait on the test? I have had 7 and they have all had different results except for one part has been constant-no f waves. There is no reason to postpone the test, do it now and if there is damage deal with it now. depression can be dealt with and lessened compared to not having the test and finding out there is nerve damage that can be addressed with pt or electrical stimulation therapy. are the drs trying to get him off the the vent-weaning any? if he is getting movement back it usually comes back the opposite way it came. the first to go numb and paralyzed is the last to come back-the hands and feet take longer because they are at the end of the long nerves and they are usually the first to go numb. his core should be coming back gradually along with the shoulders and the hips and thighs. it helps to place the legs up on pillows-under the knees lengthwise with the thighs and hips down lower then the knees. that way he can start to push his thighs down into the piloows or push his hips into the bed in a downward motion. it won’t look like too much movement to anyone but it does wonders to getting the legs moving again.
why the new type of vent? i would think they would start to let him do the intiating not the machine, pt for the lungs and diaphram is just as important as the arms and legs, just my opinion. your dad and your family are in my thoughts and prayers. take care.

Get the EMG. They did not give my daughter an EMG while she was in the hospital. We just switched neuro’s recently and the dr was extremely disappointed that she didn’t have all the info she needed to help us.

He needs the EMG. Get it.

Kelly

Thats a plus, it sounds like he is right on track as far as recovery goes. Keep the positive atmosphere around him, keep the drs involved and on their feet. Try to get the emg/ncv tests moved up, they are important to get now more then later. especially if he hasn’t had one yet. you and the rest of the family are the voices for treatment, tests and everything now, make sure the pain level is under control, communication with your dad is really important. you were worried about axonal damage and it setting your dad back, your dad needs to be involved and kept up to speed on the results no matter what they are. he is the one who is going through the tests and he really needs to be kept in the circle otherwise you will notice more depression showing. i was kept out the first paralysis event that i went through, i was depressed more that time because everytime i was asked what is the result of the this test and that test and what did the dr say to you about this and that-i was left in the dark until i came on this site. i’m getting up to speed now and finding out all the mistakes that were mad and the treatments that should have been done. in my opinion its better that your dad be involved and told of everything now rather then him finding out about it later and dealing with his feelings on his own. this way if he does go through the depression phase he will go through it in the hospital and be treated immediately for it. Give your dad my best, and you and the rest of the family take care of yourselves, it helps your dad knowing you all are doing well.

Don’t worry too much about Axonal damage being permanent. It usually isn’t.
Nate’s doctor told me right away that Nate had it and that it was not permanent.
It made all of us feel a lot better knowing that he had a long road but that he would get better eventually.
Nate got back the feeling in his shoulders and arms just about 2 mos after being diagnosed. His hands still have some numbness and tingling but they are usable and with less pain as time went by and Neurontin is working.
His breathing got better by about 3 mos but he still has a small amount of weakness in his lungs. Nothing bad though.
His legs started coming back by about 8 mos but still have tingling and numbness here and there.
If your dad is getting feeling back, that is a positive sign that his nerves are healing and it keeps going.
It all happens gradually but it seems like its very slow. Even a small amount of improvement is good and is a positive sign.
Keep yourselves and your dad upbeat but not too mushy. Just tell him remember what he was like just weeks ago and that he will keep making improvements. It helped Nate a lot, it still does one year later.
Nate is still pretty much in a wheelchair with a severe ankle deformity but with some PT help and a new AFO, he will be able to walk better.
Tell your dad about us. It will help him.

Get the EMG test done. You and he and his doctors need to know the actual status of his nerve conduction. This is important.

Suzanne

I know this sounds crazy but my ex-wife works for my neurologist and he ordered a second nerve test even though I am doing so well. To top it off he wanted my ex-wife to conduct it. I agreed because I guarantee they know more about this than you and I . At this point if they told me to do just about anything I would. I also know from what I’ve read that sometimes it seems like forever and a day to get some progress but any is better than none. I went by my work last week and everyone that came to see me in the ccu said they thought I wasn’t going to make it. I barely remember my wife saying something about a trach and I responded and they pulled the vent from me the very next day. I know I’m not a typical case of GBS because my doctors (all 20 of them) say I’m a miracle. Your dad will be able to help himself recover better if he knows (even if he is unconcious) he will know what he has to do. I was in a 3 week drug induces coma and I remember bits and pieces and remember trying to do the things asked of me. My daughters said they communicated to me with eye blinks and I don’t even remember any of that. Keep your dad informed and trust the doctors. My prayers are with you and your family.

manitoban,

no real need for the emg/ncv. it tells the docs how he is doing. what he feels happening to him tells him he is improving. neurontin for neurological pain. take care. be well.

gene gbs 8-99
in numbers there is strength

Your dad and your family continue to be in my prayer thoughts as Dad continues to recover. We look forward to the day when we can “meet Dad in person” on these forums 🙂

mani, that is great news that your dad is able to raise his arm and breathe on his own for hours at a time. give him a big hug for me and tell him to keep up the great work! keep up the positive thoughts, he will make it! take care.:)