I am new to the forum and was wondering if others who are dealing with both are finding help from doctors or even C-Pap? I have sleep apnea and Chiari 1. I have had them both for many years but the doctors I have seen in the past seem to be trying to help, but are not having any luck with finding a reason. I have been told about the surgerys for both and neither sound to thrilling. Any help would be greatly appreaciated.
Sorry u too r dealing with this...I have been to a sleep clinic to be checked, but the dr was interested in rxxing meds....never tested for apnea.I do know others with chiari that use the c-pap.
May I ask how often u have MRI's to check on ur chiari?
The one thing I have learned is u need a chiari specialist...ne NS can treat u and do the surgery, but an expert is needed.
Let us know what area u live in and we can try to list some names of drs for u to research.Most of us do not live closse to the specialist and we need to travel so know that may b the case for u as well.
The members here r great....well informed and willing to offer support.
I am sure one of the other members that has had the apnea dx will pop on and share their experience.
I look forward to getting to know u thru the forum.
cby selmaS [This user is a Community Leader for this forum]
I only had one MRI and it was about 7 years ago. At that time they told me not to worry about it, because I do not have the harsh systems for it. The only problem I have is when I laugh or strain too much, I get light headed and if it persists I black out. I still have no other problems that I know of. The Sleep Apnea I believe is related to it or Chiari is related to SA. I am hoping this forum can give me some insight into the problems I may have in the future.
I live in the South New Jersey area, and have seen doctors in Philadelphia and NJ.
My present is Dr.Kass, he is a sleep specialist at the Cooper Medical center in Voorhees.
Hi...I believe the sleep apnea to be connected to ur chiari....u would not get chiari from sleep apnea.
I went to NS in Philly and did not have a good result,the NS's there r not chiari specialists and when u have chiari that is what u need.
The Chiari Insitute in NYC is a better place to go.
U deff need to get another MRI...they should be done annually to check to see if it is getting larger.
DO not let this go...please get a MRIw/wo contrast...ask for copies of the MRI and the report.....the results will guide ur next steps.
I am not trying to scare u but inform u what might happen if u let this go with out monitoring it u could have paralasis and that can lead to perm damage.Also drs that do not understand chiari and it's treatment will not inform u of the follow ups.
I am sure when some of the other members pop in they will offer some suggestions .
Please read the Welcome message at the top of this page it will explain what chiari is and it has links to our health pages that has even more info.
I have sleep apnea and was tested at a sleep center. I use a c-pap machine and it controls the apnea.
I am still very sleepy during the day and have hyper-somnia (excessive daytime sleepyness) So while the apnea is under control, I still suffer.
The sleep center doctors handle all of this for me, not my regular doctor,
Do you go to a sleep center?
I have Chiari 11mm but the NS never says anthing about the coralation.
It sounds like you need a new doctor or a second opinion.
So many doctors dont understand chiari, you have to keep searching until you find one that does.
It took me 10 years and 6 Neuro Surgeons to find 1 that understood Chiari
I have sleep apnea. I had the surgery in 2005. I had a deviated septum, my tonsils removed and my uvual taken out all at the same time. It was like getting hit in the face by a big truck. After the surgery, my snoring and apnea went away. I then gained some extra weight and it returned. I was sent for antoher sleep study and was put on a CPAP.
I use my CPAP everyday. I could not get any sleep without it. They have so many new and smaller units on the market today as well as more comfortable masks, (I use the nasal cannula) that you can sleep comfortably.
If you can tolerate the CPAP it is not necessary to get the surgery. You are from Philly and I am from NJ. My doctor is Dr. Eric Joseph from West Orange, NJ. He is great. It may be worth it to make the short trip to see him.
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