Hi Eyrin, I just found this post from 2011, currently it is December 2014 and I am hoping you are doing well. I have lots of questions about Dr Rosner as here in Virginia I cannot get anyone to take Chiari seriously enough. I have a lot of symptoms and am getting so so tired of it all. Did you have surgery by Dr Rosner? If so, how did it go and are you still doing well? Thanks for listening. I hope you get this message, Wendy Michalski (***@****) please email if you can....
Hi. I noticed you were asking for Dr. Rosner's email address and was wondering if you ever managed to get it? If so, would you mind sharing please? I have been diagnosed with Chiari Malformation type 1. Although I would love to schedule an appointment, his office is a little over four hours from me. This being said, I would like to see if I can get some input from him, if possible, prior to making that trip. TIA! :)
Oh...u will have to PM me which ones those are....lol...I am glad u joined us here and do keep us posted on how things work out for u getting to see Dr Rosner etc.....
Dr Rosner is well loved by all his patients I know that, and he is well respected in Chiari circles too....I wrote a letter on his behalf b4 and will again if it should ever be needed.....
Good Luck with ur upcoming tests <3
Hi Selma, I know you from other forums. I live in Arden, NC about 30 miles from Hendersonville. I have a very close friend, Rita, that works at Pardee Hospital as a Surg Tech. I have asked her to check into NS w/ syrinx knowledge.. I will give her Dr Rosners name... I really thought I would have to go to Duke Hospital to find a Dr. that would even consult w/me. Most of the posts are very old.. I hope that more ppls will post and advise. I am unaware of any negatives w/ Dr. Rosner.. but, I am not concerned about that. I love what I am hearing from his patients!! I will try to to get the VA hospital in Asheville, NC to fee base me to him as soon as they find time to get my tests (EMG July 12th and MRI w/contrast - brain and spinal cord August 20th)
Hi and welcome to the Chiari forum.
The contact info for most of the Drs should be in the thread for Drs names....this list is for u to use as a tool to research Drs.....it is not meant as a referral....
Sorry u have had the run around but u r not alone.....many of us have had the run around....and misDx's.....
The reason we have is there r many conditions with similar symptoms, and lymes, Lupus and MS are the top ones we ALL need to have ruled out.....
Can I please have his email? My email is ***@****. I am so tired of suffering with this pain and being shuffled around and given the wrong diagnosis. From MS to lupus or migraine.
Hi and welcome to the Chiari forum.
Thanks for adding ur experience with this Dr....I know he has been put to the test to show what he is trying to achieve and it is sad that he has to.
It is great to hear positives about true Chiari Drs that dedicate their lives and career to help those with Chiari and related conditions.
At the risk of sounding like a "crazy cultist" Dr Michael J Rosner saved my life. He is my hero. He did my surgery in 2002 and I would not be here if it were not for his pioneering selfless work.
Hi, I just scrolled to the bottom to see why this bumped up. I am a patient of Dr. Rosner's, Dxd with Chiari 0. What do you mean by "updated"? (have you called or visited the office?).
How old is your daughter?
Please update this if you can. My daughter is chiari zero but incapacitated. We are in Hendersonville.
Youngwife - Thank you for your help with the haircut issue! Allan and I were looking online last night at some hair styles that are short and kind of short to see what we both liked and thought we'd prefer. I just don't want to mess with washing so much hair with all those stiches back there! Or was it harder to do so bc of it being short and were the stitches able to get wet? My hair is just so thick and heavy that I want this silly matter to be one that I don't have to think about down the road! Silly uhg!
fibrotj - Have you decided to call Dr. Rosner's office to see him? I think you'd be very happy if you did! My symtoms have made things so hard that my husband puts me in one place for the day when he leaves for school, and then either he or my parents -whoever gets home first! :) - comes to help me move. I can move to the bathroom, that sort of thing, but I never thought I'd get to this point! This time last year I was able to walk freely at home, and go out some (even went with Al when he played golf!). But whwen we flew to his parents this past Christmas...well, I was in our bedroom more than not! FRUSTRATING!!!
But for a kid,,,I can only imagine how her frustrations must be multiplied! I've thought about her, and talked with Allan about her since we've met. She's in our morning prayer, and our prayer seems to be growing by the day! :) Fibrotj I do pray that you find your help so that you can enjoy life more! I don't know how much all of this has changed everything, but the littlest things, like still needing a ride to my dr appt tomorrow & can't find one, seem to get in the way which makes a difference.
I am...I would really appreciate a prayer or two. My faith has surely taken a hit through all of this! 6 years of being home, not teaching or coaching, and being on the opposite side of town from all of my friends has led to days that have been pretty dark. But I've really tried to pick myself up, and just do..just "do". Anyway...I need to start finishing some work. We go get our taxes done tonight. And on top of that we're being auditted for the '08 year! We spent the month of Dec. at the Cleveland Clinic in'07, and our medical bills we're HIGH in '08 which seems to have flagged something! Just what the dr ordered before surgery! Another prayer request!
Thanks and love - eyrin
Your most welcome Rebecca! I hate seeing ANYONE going through this mess...but especially a precious CHILD!! I certainly believe in prayer...& in the grace & blessings of our precious Lord, Jesus Christ! Amen! {{hugs}} ;)
~tj
Hey there! I just wanted to thank you for praying for my daughter. She has been through so much, and deals with so very, very much. Your prayers are truly appreciated.
Blessings to you,
Rebecca
Hey, Eyrin!
I am thankful that you now have a solidified surgery date, and can begin to see the end of this dark tunnel. ((((HUGS))))
Rachael had a short cut, but we also knew of a patient that chose to keep her's long so she could cover it up. I really think it will depend on your preference. Dr. Rosner will make his necessary cuts, and leave you with a not-so-fashionable style back there. But, hey, hair grows fast, usually. ;)
Oh, and did I mention that Rachael's birthday is on May 1st!?!? How cool is that!?!
I will continue to be praying for you!
Rebecca
To those who've written & helped care about me & get me through "this":
I am SO sorry about this!!! I'm just glad I figured this out sooner rather than later!
I had a problem with my page and name. I ened up with 2 pages/names. 10Ebtrfly is my main one...the one I want to use & have always used. I was trying to do things on my phone, and it messed things up!!
Thank you - 10Ebtrfly (aka. eyrin) :)
Hi there! I hope you're doing well! I have 2 questions for you if you don't mind...
1-Somehow I ended up having to redo my page, like they didn't recognize me, yet my posts are still there, but I had to redo my home page & it doesn't show I have the friends I have and that I had posted anything (yet the posts I had posted are still in the pages of posts). Do you know if there are any other things I need to make sure to do to make sure I'm still "in" the group?
2-The BIGGER question is...do you reccomend that I get a shorter hair cut before/for my surgery, or keep it longer? In my mind I can see pros and cons for both, but I didn't know if keeping it longer would make the stitches and such more tender or be in the way, especially if I pull it into a ponytail? Or it being short will it allow the stitches to be more open to the air (healing quicker), not have anything in the way, OR will it make it more tender to things touching it?
I KNOW I'm being silly about this as I read it back!!!! I'm sorry! I just want to make sure I go into this as comfortable as possible! I've had a surgery before that landed me in and out of the hospital for 10 months & bed-bound w/ a home nurse 3 days a week. Had I known this wwas about to happen there would have been things I'd done that would've made things easier for me. I guess this is me doing what I wish I'd been able to do before.
Thank you for being patient with me! I'd really appreciate your help and advice as my date is coming soon, but still have some time to get this done. THANK YOU!
:) Eyrin
Yep!...Dr. Rosner is doing my surgery! Yesterday I was told it'll be the week of the 18th most likely. If not, then it'll be the week of the 25th. As for the uncertainty...my hubby was talking with a father of one of his students. He's a surgeon that's worked with Dr. Rosner before & had wonderful things to say about him. That was the last piece of the puzzle needed to solidify any uncertainty there might have been. In my gut he was it. Period. For my parents, the second half of my caregivers, they needed that reassurance. I'm just so blessed he was put in my path! I'm waiting for this surgery...my symptoms have skyrocketed! I've got to be in one general space for the whole day until someone is home because of certain things that've happened wwhen I think "I can just do..."! :)
My birthday is May 1st, and this will be THE gift that'll just keep on giving!
As for your haircut...I think it's perfect! I've been thinking about that fact and what to do about that. I just ended up trimming my hair from that hair cut! So I won't be bothered if that's what is best.
I'm glad, it makes me feel calmer in a sense that there's someone else going through this at the same time as me, and in the same place/by the same dr. Please let me know how your plans progress, and your surgery gets a date. I was told they're waiting on his "tools" to arrive, places in the surgerical schedule/rotation to open up, and that he's going to a surgery conference before he starts working at Park Ridge. If you'd like to get togeether for lunch or something before, I'd be more than willing! I can find a ride if given enough time, and I'm in south Asheville near Hendersonville.
Fibrotj - You've got to feel fullly comfortable w/ your dr/surgeon beyond a doubt! Take your time to learn about chiari, the drs involved, and how it can be treated. There's alot out there for you to learn, and people that will be more than willing to talk with you! It took me 6 years, to the month basically!, of dealing with this, seeing dr after dr, talking with people, researching, and reaching out to get my voice heard so my problems can be taken seriously! So do NOT give up!!!
Thank you to EVERYONE here that is supportive and caring as I've gone through this process! I KNOW I wouldn't be here and as strong going into surgery without the rupport I've found here.
I'll be in touch as my date nears, and I hope to hear as everyone else goes forward.
Love - eyrin
WOW!! You all make me want to definitely go to Dr. Rosner now...after reading all these posts! (Can't sleep tonight). I was raised up in East Tenn. (Seymour...1/2 way between Knoxville & Seveirville) I've been through NC many times (N. Myrtle Beach)...& Asheville also. I love visiting the Biltmore House & Gardens. My family still lives there in the Seymour/Knoxville/Seveirville area (spread out). I was just back there this past summer...& I went with my brother & his wife to visit the Biltmore House again. We actually bought Annual Season Passes...guess I could go see Dr. Rosner...& make good on it! LOL! It would at least give me an excuse to go visit family again!
Selma...thanks for that very descriptive & "easy to understand" analogy of Chiari Malformations! I needed that! LOL!
I'm anxious to hear everyone's post-surgery stories. Youngwife...thank you so much for sharing about your precious daughter...who has been through so much.
"Dear Heavenly & Precious Father...may You bless & keep Rachel & her family under your loving, protective wings...in addition to Pam, Meshell, & Eyrin (& families), on this board...especially during their surgeries. I pray Dear Lord, that You will guide the hands of Dr. Rosner...as he performs surgery on all 3 of them! Amen!" {{hugs}} ;)
~tj
Who is doing your surgery? It seemed you were undecided about Dr Rosner some time back. I personally am waiting on a date now with him. I had my hair a little longer than shoulder length and last weekend had it cut into a "bob" really short in the back and longer on the sides. My thoughts were that it would be easier to get into some sort of style afterwards since a really short back with this "do" is ok. Probably within a month or so it should be grown enough not to look ridiculous??? Hoping so anyway. I hope this helps. Sorry I havent been there yet so cant offer much except what is going on in my brain at this point. Trying to do some spring cleaning...a very little at a time.
Pam
Thank you...I'll look at some other places for some answers or opinions. I hope you're doing well! Take care - eyrin
I know Pam nor I have had our surgery yet...its soon. U may want to research other posts. I am sure you will find out exactly what you need to know!!
Hello everyone! I hope all of you are doing well! I am coming to you all for a few reasons..I value your opinion and perspective on Chiari surgery, as well as how to go about day to day things after surgery.
I just found out that we're looking at 3 weeks 'til my surgery, that I found out about this morning. Feelings, questions, concerns, etc...have popped up that I only have you all to go to about this stuff bc you HAVE been through this, you've walked in these shoes, and I'd appreciate any and all help!
What things should I be getting, doing and focusing on during this time before surgery? Any items that you've purchased or gotten together that make you more comfy? This is probably a little vain, but...is it easier to keep my hair long (right under my shoulders), or would it be better for me to get a shorter "hair do" :) Are there any important things that I should do within this time? My hubby and I don't have any kids, so that "area" isn't needed attention, but just wanted to put that out there too.
In Jan. my only sibling, my sister, decided/accused me that I've caused my Chiari bc the meds I've been prescribed & taken while fighting the symptoms that the past 6 years that've made me disabled/home bound (unless being able to have someone take me to an appt or just out to dinner). Since then she's not spoken to me, let me see or speak w/ my nephew or niece, and have now not speaking with my parents bc of how they've "enabled" me. This, my heart has been broken, but more for my parents. I HATE the concept of going into this type of surgery w/out being able to speak w/ my sister, and I don't know if there's anything else I can do. Any suggestions?
Well....I've taken up enough of your time, and I MORE than appreciate your time! If you get just a second to let me know if there's even ONE thing that may help...THANK YOU!!! Even if your advice is to just "chill out Eyrin!"
You each have helped me these past 3 months, and within this place...each of you have played a role in helping me look forward to "meeting a new Eyrin". Thank you doesn't seem to be enough.
Eyrin
I will send you a private message.
Rebecca