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PA Chiarians

A spot for those of us from the Pennsylvania area

Location: Pennsylvania
Members: 54
Latest Activity: Feb 21

Discussion Forum

Help me find support?

Started by Hoodride53. Last reply by sunshine99 Jan 27. 29 Replies

Hi my name is Jennifer and I live in Butler, PA.  I was diagnosed with CM right before Christmas and I am trying to find some support.  I went to a surgeon and I was basically given a pamphlet and…Continue

UPDATE ON MIKE S

Started by lori Jul 18, 2012. 0 Replies

Hi..Just got off the phone with MIKE..He sounded great....he is in a lot of pain, natuarally but he is hanging in there...He had a temp of 101 but it is down now..they have to make sure it stays that…Continue

Chiari Walk - Sept. 17, 2011

Started by Alicia Roden. Last reply by Linda Burnard Apr 10, 2012. 14 Replies

Chiari Walks across america are September 17th, 2011!Has anyone done any in PA? Where at? Are you doing one this year??I have a list of Walk Sites on the link below. There is one in Wyomissing, Pa…Continue

Tags: pa, walk, chiari

PA Support Groups

Started by Alicia Roden May 29, 2011. 0 Replies

As the title suggests this is for the info on Support Groups in PA.Theses are the ones I know about. If you know of any others please post:)Also if you've been to any of them let us know how they…Continue

Tags: maryland, md, pa, pennsylvania, support

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Comment by Janster on January 29, 2014 at 4:33pm

I have a hearing aide but its not related to Chiari - atleast, not that I know of.  My Mom had a stapedectomy when she was younger.  They replaced the stapes bone with a synthetic one.  Thanks to heredity....I had the same thing and the same surgery 8 years ago.  Unfortunately, after 1 year of the healing process - my hearing isn't as good as it should be after such surgery and thus, I wear a hearing aide in my left ear.   

For any of you with hearing problems - your best bet is to see a audiologist and have your hearing checked/tested. They can sometimes pinpoint where the hearing problems are....Sometimes hearing problems can be related to so many different things including sinus problems.

Comment by Furie18 on January 29, 2014 at 9:07am

Rachel, omg I never thought about it but now it may make sense. I too sometimes have trouble hearing when theres other noise. Plus, I never thought about a possible connection between the syrinx and my ears. I will definitely have to look into that. I have had to put off contacting the doctor in hershey that some other people have suggested to me because of a lump I found. Once I get the biopsy done and get the results I will then start getting my stuff together to contact him, if there is nothing seriously wrong with this lump. But wow, I am actually good someone else has this problem with the ears cause now I know im not crazy. Lol

Comment by Furie18 on January 28, 2014 at 4:35pm

I personally have not had the surgery as of yet. But i have noticed that for a year now my ears have been giving me trouble. as in they feel like they are all clogged with wax and itch like crazy. I had a hearing test and even had a ct scan to check everything out. But it still itches. I make sure to clean my ears really well but docs say my ears are in perfect shape and no fluid in them. I do have trouble swallowing once in a while but that can be because of a choking incident i once had. My neurosurgeon said my syrinx was too small to need operated on and that we should recheck it in a year and then see how it is. Of course i plan on getting a second opinion anyway due to the fact he doesn't operate on Chiaris unless they are a certain degree of herniation (which we all know is BS). And my trouble sleeping has seemed to get worse even though i am taking meds to help with that.  I hope you get some kind of relief soon though.

Comment by Roxxanne Haynes on January 27, 2014 at 6:47am
welcome Rachel,

I'm in Montgomery. Hope all is going well. This is a great site and everyone is very supportive and there is a lot of knowledgeable people here to help us through our struggles.
Comment by Janster on January 27, 2014 at 6:08am
Welcome Rachel! I'm in Lancaster. I don't visit here at all but I do see comments and threads. I'm lucky that I don't have symptoms very often and it's minor (per say -found by accident looking for something else). That, plus a lengthy syrinx will be with me for a lifetime that will always have to be monitored. It's nice to have folks to chat with even if you want to vent. Good luck with your medical adventures and here's hoping you find some answers /relief.
Comment by Furie18 on January 26, 2014 at 11:01pm

Hi Rachel! Welcome! I am a little farther away from you than Shasta as i live in Williamsport. But it's always nice to meet new people! We all have been through many things and if someone has a question, someone in here has been though it. :-) I for one have not had surgery as of yet. Long story short... the neurosurgeon i went to said he didn't operate unless the herniation was bigger than what mine is. But my syrinx that we found last summer was also too small for him to think it required surgery. So we are waiting to see if it gets worse. Needless to say, i am currently in the process of trying to get a hold of a chiari expert to take a look at my files and give me their opinion. Hope you are having good days!

Comment by Shasta87 on January 26, 2014 at 9:55pm

Hi Rachel!  I'm not too, too far from you - I live in Altoona.  Hope you have good days too!

Comment by Jennica on June 8, 2013 at 7:28pm
Hello Pa Fellows. I am from Troutville near Punxsy. I am so glad I have found a support group here in PA. IanybodI was just wondering about everybody's story with chiari
Comment by Roxxanne Haynes on May 17, 2013 at 8:18pm

Hi, my name Roxxanne, I'm from Trout Run. I was diagnosed with Chiari's in April after spinning my car out on black ice. I had a herniated disc operated on 3 weeks ago, at my follow up  the neurosurgeon said they may have to do decompression surgery for the Chiaris once the fusion is healed. They are talking about having to do the surgery within the next year at latest. 

Comment by Furie18 on February 28, 2013 at 7:57pm

Hi Jennifer, I am from Williamsport! I have a nice neurologist but no neurosurgeon.  My neurologist recommended me to a neurosurgeon but he looked over my files and said there was no need for me to go see him. My chiari is just passed the point where it is called chiari. I have taken it upon myself to try to find a neurosurgeon whi knows a lot about chiari because a) mine is very slight but I still have symptoms (neurologist says thats not the reason for my headaches.) b) I play roller derby even though my neurologist doesnt want me to, c) I dont quite believe my neurologist about my chiari not having anything to do with my headaches (but only because the medicine she has me on has not seemed to help much). There is a dr in Pittsburg that I want to talk to if he will look at my files. he has done a number of articles about chiari. I believe his name is Dr. Bejanni or something like that.

 
 
 

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