I am at a point of giving up on the chiari. Don't feel much better then I did before the surgry. My daughter who is 11 has had bladder problems for about 6 years now over the weekend she lost all controll. Over a year ago we went to our PCP and an Uralagist sp and they can find nothing wrong. We have been trying everything they said and nothing has been working. We are going back and this time I want answers. My problem is when I get in there I can't get out what I want to say and I also back down to the doctor. Any advise would be helpfull
Has she been tested for tethered cord? Bladder issues are very common with that. I often wonder about it for my daughter as well due to some bladder issues. Did she have a urodynamics study? I think I would pursue testing for tethered cord! Good luck
Sorry you are having a rough time. Maybe try writing down what you want to ask the doctor before the appointment so you have time to collect your thoughts and won't feel rushed! I agree you may want to have your daughter checked for chiari or tethered cord.
If I remember correctly your surgery was shortly after mine? Please don't give up on seeing improvements. The doctor told me it could be longer than a year to see full benefits. Things are still changing and adjusting. I remind myself of this when I have bad days or it seems my old symptoms are hanging around!
she went through alot of test over a year ago they said everything was fine and to go to the bathroom every hour and drink lots of water. There was not improvment. I don't know everything they did and my PCP never got any info from them so she (PCP) is going to find another that is just for children.
Di said:
Has she been tested for tethered cord? Bladder issues are very common with that. I often wonder about it for my daughter as well due to some bladder issues. Did she have a urodynamics study? I think I would pursue testing for tethered cord! Good luck
I was reading about tethered cord and some of it matched what my daughter is going thru. I'm going to call my PCP and see if she can get us in to see a nero to. she is good at getting us to MU Columbie MO. we don't have anythind here but a clinc that closes at 5pm. Thanks for all the advise and I got my note pad I keep in my purse and wrote all this down so I will be prepaired when we go. Thank You .
If you don't remember what kind of test were ran, please ask for a copy of her medical records. I just asked for mine this week because I couldn't remember all the CTs and MRIs I have had over the years. Just a thought.
Update all we can do right now is take the meds and hope things get better. I have to go to St loise to KC and I can't drive that far and everyone is working. Me and the doctor have desided to see is the new meds are going to work and if not I will find away. I will have the doctor do check ups for now.
Does anyone have problems getting sleepy while driving or doing other task that don't require you to do alot at once wahching TV or reading a book.