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opinions needed about Dr. Michael J Rosner
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opinions needed about Dr. Michael J Rosner

I'm a patient who's been on a 6 yr journey of trying to find out what's wrong with me.  So many drs have given their meds, and their opinion ( some of which have laughed at me when tests have come back "normal" even though I'm sitting there clearly in pain).  
The dr I see the most & knows me best suggested I see Dr. Rosner bc he thought I could have Chiari 1 based on so VERY many symptoms he helps me manage.  I have a pacemaker, and this has greatly hindered the ability to look at things more clearly.  Dr. Rosner ordered a CT Myelogram (along with other tests), and they all showed a very clear picture of what is wrong.  The ONLY thing is that I have a 1mm herniation, BUT my symptoms have diabilitated me in such a way that I am practically home bound bc it's so hard and hurts so much to leave.

MY QUESTION/NEED:  I've researched SO much about Dr. Rosner, as well as so many other chiari drs that have had medical board/license problems, but I would be MORE than grateful if anyone out there would be willing to share any experience they might have had or had direct contact with concerning Dr. Rosner.  I feel comfortable with him.  My "gut" feels comfortable with him, but there are still others that ask me if I know what he's done & why I feel comfortable with him.  

Any insight would be MORE than appreciated!  Thank you - Eyrin
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Hello and welcome!  I see Dr Rosner and am planning surgery with him in a few weeks.  I am aware of his history too.  In order to understand his history you have to have to understand the way alot of docs view this illness/condition as "no big deal"  Particularly people in your situation who have a "small herniation" or Chiari Zero.  The old literature says that less than 5mm is not considered significant.  Which is considered now faulty science.  Because the ones who know CM know that the size doesnt matter as much as crowding and blockage of csf fluid.  Dr Rosner has treated CM for years and has treated people with your condition.  In NC (where I live) the medical board is less than up to date on current science and backwoods.  Alot of GP's sitting on a board making decisions about a condition they cant spell.   So that is where most of his trouble has come in.  He has refused to do anything other than what he believes is correct and they havent been happy about that.  His refusal to conform.  

As far as my personal experience goes:  he is the most careful, thorough, caring physician I have ever seen.  My first neuro exam with him last over 3 hours.  He found things wrong with me that the last 5 had missed because they werent willing to take the time.  He knows more about CM than pretty much anyone.  

It is a personal decision who you want to see.  Personally, I am at peace with my decision to see him and he is the only one I would let do this surgery.  

I hope this helps.

Pam
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Thank you so very much for your opinion and willingness to share what you're going through.  I also live in NC, and that is playing a strong role in where to be treated and by whom.  In the past 6 years I've never had the complete package of caretakers bc one is here, another there, and another there...Trusting Dr. Rosner in my "gut", or mind for that matter, is strengthen even more bc my pain mgmt dr (the dr Im closest with and knows me best), my psycholgist, and Dr. Rosner are all with in this 30 mile area where I live.  To me that's important bc going somewhere else to get treated is harder on me when I do get home, AND this situation has become a true meeting of the minds bc the right hand knows what the left...I really need this bc I'm tired.  I KNOW I'm blessed to have this trio of drs helping me, so that when one makes a decision or has an idea the other 2 will know how to best help me.  I'm just happy bc I can't keep researching bc its taken such a toll on my faith.  But I won't stop 'til I get at least some of my life back!
I'm glad you're getting help from Dr. Rosner sooner rather than later, and I hope all goes well. Is he the first dr you saw about your chiari?   Would you be willing to tell me how chiari is affecting you?  I'm sorry if I'm imposing also.  I guess my interest has been peaked knowing there is someone also seeing Dr. Rosner in the same area.  
I'm looking forward to meeting with him next week (hopefully) to map out a plan!  
Thank you for sharing!  ---  eyrin
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I certainly dont mind sharing.  Actually Dr Rosner was the 3rd NS I had seen but I have also been thru 4 NL's.  I have been dealing with this now just since August and a car accident has turned my life upside down.  From what I understand there is a quite a list of people already waiting to have him help them.  I noticed you were from Asheville and It must be nice.  Such a long drive for us.  But I think he is worth it.  

My symptoms are long.  Of course the headache, neck pain that we cant get away from.  Another big issue is my bp dropping/heart rate jumping when I stand.  Diagnosed with POTS and NMH.  Major issues swallowing. Esophageal spasms, nausea,  Numbness and tingling.  Pain in arms, legs, chest.  Peeing like I am pregnant.  IBS.  Shortness of breath which seems to be positional like my neck has to be straight or I cant catch my breath.  Brain fog, memory loss.  Double vision, blurred vision.  Dizziness, vertigo.  I probably missed some but you get the idea is alot of stuff going on.  My herniation is 11mm so I do feel at least fortunate that I am outside that controversial area that alot find themselves in.  Not that it has made getting treatment any easier.  What a stressful journey it has been.  

Have you seen him before?  I have learned that you have to trust your gut.  Most of he people who give us advice dont really understand this condition.  

Good luck!
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I am going to see him the 2nd!! I have had emails only with the man...and I also feel at peace with him....as I have done my research...from what I understand there was one surgery he did with the spine, which I know nothing about but he I'm sure he was right. The other was for operating on a chiari "0" patient as yourself that needed it.

He will answer your emails, he is kind, caring and I am so glad I didn't listen to the medical board, who knows not alot about current chiari research that says, and you witness that anything less than 3-5mm is not chiari and does not justify surgery. Dr. Rosner is advancing research. I respect him for not throwing the towel in and giving into their bullying. He stands for what he believes in to help people, regardless of the consequences.

My first NL that orginally thought I had chiari, ordered mri, mri was normal, my NL did nerve tests and said either MS or chiari, which he said I have no lesions, would he risk his license and go against the radiologist, no he sent me for ulnar nerve surgery on both arms because that is what "science" showed and the mri was normal, maybe he didn't know enough..

Well needless to say Dr. Rosner sees my herniation and is going above and beyond to help me and others, I haven't even met him, but read the stories!! I have 5 more days to see him and I am traveling from Missouri....there are no chiari specialists here. Good luck!!
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Hi, if I am reading btwn the lines to understand what u r asking about Dr Rosner is that he feel it is chiari affecting u...and from what u read chiari need to be 5mm to be chiari....

First, chiari is not the herniation, but the malformation of the skull which forces the tonsils down and out onto the brain stem......

So imagine if u will  a funnel.....if u place a piece of shoestring licorice down and out the funnel u can still pour a liquid thru the funnel...this is y some of the larger herniations do not cause the same amount of symptoms that a herniation that is smaller but wider might cause...so now imagine a gum drop inverted into the funnel...it blocks the opening and does not allow the liquid to flow.

So shape and width is more important....Drs like Dr Rosner have done the research and know this, the info on the web is all old info and was not updated.

If u know the story of Louis Pasteur....think of Dr Rosner as Louis....they both had/have their peers thinking they do not know what they r talking about...but Thank the good Lord for Lois Pasteur!!

  I hope this helps : )
  "selma"
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.....and thank God for Dr. Rosner : )
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  Indeed meshell !!!
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I totally agree!  If it werent for him I would still be bouncing around trying to find some help.  
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I do agree..."thank God for Dr Rosner :)".  I have a 10:30 appt with him tomorrow (3/1) to talk about the "what's next" question.  I'm just trying to "stay calm" (?) until the appointment b/c my very black/white type of mind tries to go through every single question possible over and over and over.  Yes, I've already gotten them written down, but it only seems to calm me to a slightly better place! :)  
I do know one thing has changed since going into any dr about anything that this is concerned with...I feel that I'm going in with a support team right behind me, there with me when I get nervous or flusttered, and is there for me when I get home to talk me through what was discussed.  Thank you.  I sincerely thank each and every single one of you for just being there/here as I've been going through this!  I just hope that I can be there for each of you.  I am right in the same area as Dr. Rosner, so if anyone does come for an appt and need anything...I'm available if you contact me here and we'll figure something out.  Good luck to meshell_32 and pamk5 with your visit and travel.  I'll check in with anything new soon. Take care - Eyrin
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Well with Dr Rosner I dont think you have to be worried about being flustered or anything. He is pretty down to earth.  He likes to joke around some to make you feel at ease.  That is what we are here for to help each other along this journey we must take to get treatment.  I hope your visit goes great and you get some answers and some relief.  I dont think you can be in better hands.  

Please post an update and let us know whats next.  I will be up in a few weeks for preop and surgery.  I am so ready to get this over with.  

Pam
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Pam
I had to cancel.  I know a lot of people will probably not like the fact that being so close lends me the availability to do that, but how bad I was last night (have a fever along with everything else), and will have to call and reschedule.  I also am a person that needs things to be scheduled to be able that I can keep everything in order.  I felt like the appt that I'd go to today all happened too quick, and I don't have my mind in the right place to be able to ask and take in all that'll be talked about.  
I will be able to get in at the end of next week I was told, so hopfully I will be able to tell you how things went then.  Please, someone tell me I'm not crazy!  I hope someone understands and gets how I feel/felt about this!  Thanks for listening to me!
Eyrin
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Hey there! :)

I think I can perfectly understand what's going on.  The conflict and battle that is waging in your soul....it is tormenting!  I have been there!

In 2007, my daughter, Rachael, began to have so many symptoms, like headaches, dizziness, and nausea.  We tried diets, hormones, and migraine meds.  We went for eight long months traveling to near by cities, desperate to find a doctor that could help her. No one could tell me why she was deteriorating right before my very eyes!  

After talking with a mom of another Chiari patient, I began to research Chiari.  I came across Dr. Rosner's name.  At that time we lived in a small town in Mississippi, but have previously lived near Hendersonville, NC.  So, compared to Chicago and New York, Hendersonville, NC seemed do-able for me.  It was less scary, I guess.  Plus, I felt that it was one of the many signs from God that this was the place for Rachael to find help.

So, one weekend in a desperate attempt to find help, I sent Dr. Rosner an email.  I didn't expect any reply at all.  But, much to my surprise, he did email me back himself!   And it was on a weekend!!  I was so shocked!  After a few more emails, I forged ahead with making an appointment and requesting for permission to go out of network from Rachael's insurance provider (state).  Both of these seemed like huge hurdles to overcome.  But, God made a way, as He always does.  

I had read all of the records and information on him.  I talked to other patients and their parents.  I scoured the internet for anything on him, because I wanted to know.  And, yes,. it terrified me.  But it was after our initial appointment with him, and all that he found that my anxiety increased.  It was not at all because of Dr. Rosner.  He was amazing, truly.  It was because the more I got to know him and saw him interact with Rachael, the more the contrast became so great.  **WHAT I WAS SEEING WAS NOT ADDING UP TO WHAT I WAS READING AND BEING TOLD ABOUT DR. ROSNER**  There was a greater discrepancy once I had the privilege to meet him in person.

So, for me, I turned to the Lord.  I begged Him to shut the door hard if this was NOT what was good for my child.  I knew that HE knew, and I couldn't just trust my instincts.  I had to have His direction and guidance.  Thankfully, God opened so many doors, and paved a way (a miraculous way) for Rachael to have her surgery with Dr. Rosner.  I am so thankful that Rachael's decompression was done by one of the Chiari pioneers. He is top-notch and one of the best!

I pray that you will find peace, and assurance that this is the best for you.

Blessings to you,

Rebecca
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Thank you Rebecca!  Your note means so much!  I have this gut feeling about Dr. Rosner, and I know that he will be the one to do my surgery.  I know life won't change back to any of the original Eyrin, but ANY change is better than the life I do live!  My 3 main care givers are my husband and parents, who are all teachers, and we live behind them now.  This all was a true blessing in disguise starrting Aug of 2004. Which at that time we were living with them while our house in Charlotte hadn't sold, and we'd already accepted jobs in Asheville...house sold March of 05, I was declared permanently disabled Apr 05, we started building our house May 05,and we moved in Feb 06.  The fact that we'd only been married 2 years when all this happen, and as teachers we've always felt like we have all the kids and do all the parenting we'd want to...having kids of our own hasn't been something we've never been at the top of our needs or wants.
I am blessed even more bc other than Allan, we've been blessed by the parents of the students of his soccer teams, his classroom students, and the staff/friends of the staff of Valley Springs Middle School. And my mom and I have always been best friends too.  She's also the ONLY other person my husband really knows who has migraines that greatly affects her.  Our take on meds and drs could NOT be more different!  AND the day Tylenol came out with adult liquid med was a GREAT day in our home!  He can't swallow pills, and the FEW times he's needed meds for a fever (ONLY time he's taken ANY meds) was made easier!  That should paint a pretty clear picture of our home and situation.
So my support system is a strong one, and will likely improve a bit since my parents decided that they are retiring at the end of this school year.  They go to FL a gooood bit of the summer to be with my aunt & uncle.   Al will be here through the summer, and hopefully his mom will be coming down here from Newport, RI (he's from Boston) til school ends.  This is all under the assumption that Dr. Rosner will be able to do surgery close to the beginning of-mid April. (God willing!)
Thank you for your words of encouragement and support!  I know in my heart that I will be in good hands with Dr. Rosner, and I trust that.  God has laid out this path as I look back.  My pain mgmt dr, Dr. Bothe, is/runs his practice with his faith in the for-frontof it ALL, helps to remind me to keep that in check, is comforting, has gone above and beyond the "required" help/care ANY dr is "supposed to", and is the one who led me to Dr. Rosner.  They both are "the" drs that I've prayed to find through these 6 yrs.  I'm thankful for listening to the information God handed to me, and for letting my faith (has really taken a toll through all of this) guide me in the right direction.  My parents, as well as Allan's spend a lot of time praying that we're in the right place with the right dr bc my genprac has a bad inpression of Dr. Rosner which has worried my mom, but has let me speak with him to hear his own words, nothing I haven't read already, but I still have my same, "gut", feeling of peace.  My husband and I trust that, and trust that it's a feeling that God has given us.  I'm sure you all have been through each and every feeling (any/every single one that spans/the gammett), and I REALLY want to thank you for reaching out to me so that I can share this with my mom also.  I don't know how much your daughter was when she started having to go through all of her symptoms and pain, but she is SO blessed to have you as a mom!  I have a very close friend who's daughter was born with Chiari IV, and leads a very "normal" childhood.  Yes, certain things aren't able to happen, but Mackenzie gives me hope that "this too shall pass".
Are you willing to tell me when Rachael had her sugery, and how she's done?  How old was she?  What was her recovery like?  You don't have to any question if it's too personal!  Of course I can hear my mom asking, "Eyrin, did you ask if you can actually talking to her or even maybe letting me talking to her...mom to mom?".  
We are in Fairview, again...a blessing that Dr. Rosner, an ACTUAL specialist, an actual dr that we've found that ISN'T at least 4 hrs away!!!!!, is HERE (close to home!).  I can't wait to tell my mom that you not only read my posts, but that you responded with such care.  Thank you VERY much!  Thank you for being willing to letting the LORD use you today to calm, inform, and reassure a person who knows the path that she needs to take is the RIGHT path to take!
Thank you so much more than words can express! Sincerely - Eyrin
PS.Sorry for the length!...You're just such a blessing today!
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Hey Eyrin!  I will be happy to answer any of your questions, that I can.  I was blessed to talk with other Rosner patients before Rachael's surgery, and it truly encouraged us.

Rachael was 12 when her symptoms started, and 13 by October, when she had her surgery in 2007.  She is now 16.  Dr. Rosner was very, very kind and helpful.  Recovery was tough, but by 4 weeks or so, she was pretty good.  She made a huge improvement after surgery, but began to decline after about five months.  She has not been the same since. :(  And I do not believe for a minute that the surgery was not successful. It's just that it is a treatment, and sometimes a necessary one.  But it's not a cure.

If you have any questions, please feel free to ask! :)

Rebecca

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I didnt know that Rachel had her surgery with Dr Rosner.  I agree he is amazing.  Just a quick question.  Can he help with what is going on now?  He has some stipulations about surgery on children now but he may be able to give you some guidance on what to do next.  
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Thank you for your help and opinion!
I also have the same question as pamk5 ??*is it/can he help her with what is going on now*??"  Do either of you know before asking him "Being a "kid/child" or not, does he/what is his "plan?" in situations like Rachael?  The "decline"...was it at to a point that you'd say she was/is still better than she was before her surgery?  Is that why you don't "believe for a minute that the surgery was not successful. It's just that it is a treatment, and sometimes a necessary one.  But it's not a cure."  I'm WELL aware that this isn't a cure!  But, I (and Allan-hubby) know that anything is better than nothing/where I am now!
The 2nd of 3 ?'s is would you mind if my mom get on here to ask a question or two?  It may be me if her migraine she currently has is too much for her to walk down, and for her and I to be able to look at a computer screen.******************BUT.....also, Pamk5 as well, not knowing exactly what type of Chiari she had/has & the symptoms that came with it...do you think age may've played a part in recovery?
I am getting ready for my pre-op appt with Dr. Rosner, and do have a VERY strong gut feeling with having Dr. Rosner being my surgeon.  Do either or any of you have any suggestions reguarding my appt(s)?  And thank you for being so open and supportive with all of this.  I KNOW I CAN'T and/or COULDN'T do/go through ANY of this by myself!
Thanks-eyrin

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I am headed out the door now, but will be back on to answer questions later this evening.


Sorry for the delay,

Rebecca
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Hello everyone!  I just thought I'd pass along some good info I just got.  My hubby was the mc for a 5k that my best friend organized, and while he was there one of his student's parents was there as a runner,  He's also a head dr for SouthEastern Sports Medicine, the main sports medicine group/practice in the city.  
A few years ago he started hearing Dr. Rosner's name from some patients and from other people, and set out to find out about him for himself.  He made an appt with him concerning the migraines he gets at times, and didn't let it be known that he was a dr.  Dr. Rosner took time with him, explaining things, & ordered tests that would be able to tell reasons that could/would tell what was going on.  Dr. Rosner sat with him, showed & explained every single result, and let him know that he was fine.  He then told Dr. Rosner everything, and they have worked together since (has even scrubbed in on 4 of Dr. Rosner's surgeries).
This meeting/conversation my hubby had was a NEED so that my parents will feel as sure with Dr. Rosner as we do!  He assurred Allan that if we wanted him to be a part of anything it wouldn't be a problem.  He said that "yes, there is not a 100% success rate with what he does to help people.  But the patients that he sees are told every possibility there is, and even if it's a 70 - 30 shot...that's better than no shot. Or even staying at the bad spot you're at and it just getting worse."  He was so happy that I found Dr. Rosner, that Dr. Rosner found what was causing everything, and that he is going to help me soon!
So...I wanted to share this with you all bc this is one more "pro" that can be considered!:) I'm supposed to call his office Monday to set up my pre-op appt.  I'll let you know any plans.  And I hope you all are doing well also.            Eyrin
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Hey, Eyrin!

I am so glad that you were able to receive that confirmation.  We had little things just like that along the way, that we felt like were from the Lord!  Signs that we were indeed on the right path. :)

I wanted to finally answer a few of your questions.  I am so sorry for taking so long, but I had family in visiting this weekend, and things were quite hectic!

Your question:
Thank you for your help and opinion!
I also have the same question as pamk5 ??*is it/can he help her with what is going on now*??"  

My answer:
Dr. Rosner, as far as I am aware of now, can not operate on children.  So we don't feel that is the best place for her to be at now.  We are very sad about this, but realize this is just that door being closed at this time.

Your question:
Do either of you know before asking him "Being a "kid/child" or not, does he/what is his "plan?" in situations like Rachael?  

My answer:
I do know that Dr. Rosner is very conservative with kids.  He didn't even order an MRI for my son because his symptoms were mild, and because he was still growing.  He told us that he likes to give kids all the time they need to grow before taking intervening measures.

Your question:
The "decline"...was it at to a point that you'd say she was/is still better than she was before her surgery?  

My answer:
Yes.  Before her decline, she was very good.  She had only shoulder pain that was daily, and the headaches and other symptoms were sporadic.  A non-solicited chiropractor adjustment was (in our minds) the cause of her decline.  She had been seeing him ONLY for laser light therapy on her shoulder.  And without my consent, he adjusted her neck, which was a major problem!

Your question:
Is that why you don't "believe for a minute that the surgery was not successful. It's just that it is a treatment, and sometimes a necessary one.  But it's not a cure."  I'm WELL aware that this isn't a cure!  But, I (and Allan-hubby) know that anything is better than nothing/where I am now!

My answer:
Yes.  She needed intervention.  She was losing some of her peripheral vision, and may have been close to having a stroke evident by having episodes of seeing only black and/r red!  We knew that NOT operating, and giving her brain some relief, was simply not an option.  But, that there was a possibility that the surgery would not make her as she was before her symptoms started.  That was never our truest goal.  We just wanted AT LEAST some relief for her.  And surgery did, eventually, bring that.

Your question:
The 2nd of 3 ?'s is would you mind if my mom get on here to ask a question or two?


My answer:
No. I do not mind at all to answer any questions.

Your question:
It may be me if her migraine she currently has is too much for her to walk down, and for her and I to be able to look at a computer screen.******************BUT.....also, Pamk5 as well, not knowing exactly what type of Chiari she had/has & the symptoms that came with it...do you think age may've played a part in recovery?

Rachael had Chiari Zero.  Her herniation was not large, but the blockage of csf was significant.  Plus, she has several syrinx in her spine.

Her symptoms were:

Daily headache, that was worse upon awakening or with exertion of any kind
Dizziness
Nausea
Vomiting
Bowel/bladder issues
Visual disturbances
Numbness/tingling in limbs
Neck and shoulder pain
Back pain
Difficulty swallowing
(These are what I can remember as of now)

Your question:
I am getting ready for my pre-op appt with Dr. Rosner, and do have a VERY strong gut feeling with having Dr. Rosner being my surgeon.  Do either or any of you have any suggestions reguarding my appt(s)?  And thank you for being so open and supportive with all of this.  I KNOW I CAN'T and/or COULDN'T do/go through ANY of this by myself!
Thanks-eyrin"

My answer:

*Make sure you write down your questions ahead of time
*Some have suggested a recorder...that's a good idea if you are comfortable with it
*Take notes
*Bring someone with you to help you remember things
*Plan on having a very extensive neurological exam.  Not like a regular exam!  It's at least 45 minutes long!!  He is extremely thorough in his neurological exam! :)

I hope that your appointment goes very well.  Dr. Rosner is not at all intimidating, he is just very assured of himself, without being cocky.  He knows what he knows, and doesn't pretend to know what he doesn't.  I appreciated him answering all of our questions, and speaking to Rachael very respectfully.  He did not treat her as a child.

Blessings,

Rebecca
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Rebecca-
Thank you for writing back!  I hope your family is getting back to the "normal routine" after the hectic fun that visiting family can bring!  
I appreciate the time you took in looking at each question to answer it specifically.  Like I had said before, I'm over the moon that Allan had just happened to run into Dr Motley and for him to be kind enough to ask how I was doing!  "Doors" and more "doors" are opening as we get closer to the actual surgery!  There are a few things, if you don't mind. And don't feel like you need to answer anything.
I didn't know, or maybe I just didn't remember (COMMON occurance) that Rachael had Chirai Zero!  That helps me bc that's what I have, but it seems to be dismissed as a diagnosis that can be the reason for and/or cause the severe symptoms that are present.
You spoke about your son having symptoms, and how Dr.Rosner is conservative when it comes to kids.  Did you say/Did I read somewhere that you have 6 kids?  Even if I'm thinking of someone else I read about...with your son and Rachael having symptoms is this something that other people in your family (extended) have?  I've read that this is not only a progressive disorder, but that it's congentital. Is it possible that another family member may have Chiari, but their symptoms aren't strong enough to have caused more disturbance in their life?  Beause I can see many symptoms in different family members of mine.(No one has had any of this looked at though since it's not bothered them. One thinks I've caused all of this because of my medicine intake!) It's just that it seems they have a few days here or there that they may have flare-ups, but my life is held captive by the symptoms.
Thank you for your check list for getting ready for all of this also!  My drs all laugh bc of my notebook that I keep everything in & organized, but they know I'm supposed to do that...especially with all the different drs I see!  I'm rarely in an appt alone, & if so then they've got to talk slow so I can get it all down. After speaking with Marcia at Dr. Rosner's office yesterday we decided to hold on my next appt which will be the last one I'll have before the surgery.  We're looking at the end of April or early May.  At least we have some plan of the time we're needing to plan for bc we're going to need help til start of June. I/we wish it could be sooner, but again that's a door God's holding open so that I have a chance of being able to get to go see at least one baseball game! :)  
I will let my mom know that you don't mind if she asks you a question, and thank you also for your help with everything else.  You all are in my prayers - Eyrin
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Hey, Eyrin!

Yes, Rachael has Chiari Zero.  She also has Syringomyelia, and a bunch of other things.  Chiari Zero is the one diagnosis that gets her into trouble, though.  That is because her herniation was only 2.5mm.  It is as if we have to prove to each doctor that she really does have Chiari.  

Before her surgery, I had several neurosurgeons emphatically state that she did NOT have a Chiari malformation.  They could not explain why she had several syrinx in her spinal cord, but they were just sure that she didn't have Chiari.

This is why it was such a hard decision for us.  We were hearing so many different messages, and none of them added up, except for what Dr. Rosner was saying.

So, unfortunately, there is a stigma that goes along with Chiari Zero.   It's like there is a constant pressure to prove things.  There are the friends, relatives, and neighbors that don't understand Chiari, and wonder why you have to travel sooo far to find a doctor to help you!  "Why can you just go down the road or to the nearest large city or teaching hospital to get help???"  Plus, when you try to explain the controversy surrounding Chiari...whoa!  Things get quite complicated!  **Roll Eyes**

My husband has never had an MRI.  However, I would just bet that he also has Chiari.  He has the typical back of the head pressure headaches very frequently.  My daughter and sister have also been diagnosed by Dr. Rosner as having Chiari Zero, but their symptoms are much milder and have not warranted surgery.  I am very sensitive to looking for any signs of Chiari in my other children, and yes, I have six!  :)

I have a friend with seven children.  Of those, four of them have been diagnosed with Chiari I.  So, yes, I do believe it is congenital.  And probably because of faulty diagnostic criteria, we have not known of many that have had Chiari, because they were told they were fine.

I hope I have adequately answered your questions.  And if you, or your mom, have any more, please feel free to ask!

Blessings,

Rebecca







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Rebecca - You've been MORE than a blessing! Thank you for your willingness to share so much!  More and more that you share makes my mom and I go, "Oh!...That makes sense about...!"  And I know we're not supposed to be like this, but my sister is SO unemotional as well as critizing(?).  Thinks I've done this to myself bc of taking meds that drs have given me to try to help me, and is not even speaking to me anymore.  If it was just me that's fine, but it's my parents too.  My mom is my best friend, and I need her in my life (even if I wasn't facing all that I am).  It kills me that I can't "fix" this for my mom bc of her grandson and grandduaghter, as well as a girl due in Aug.  My sis & her hubby have been together since high school, and KNOW how to hold a grudge!  ****The LOADED (self-fish in a way) obstacle is that I am an emotional person who needs all bases covered right now, well...before surgery which will be late Apr.  I canNOT go into brain surgery with my sister and I in this place, but MORE importantly...MUCH MORE importantly I can't go into surgery knowing that she and my mom are in the same place they're in now!  Everyone says to give it time and it'll all sort itself out, but this has been since the end of Jan, and we don't have that much time before surgery!  I keep texting her with an "I love you, and give kids kisses", but no responses.  I'll continue bc I can't stop bc to me I'll feel that I'm giving up.  Allan's a bit (well more than a bit I guess :) ) frustrated that this is worrying me /creating stress when I've got enough of that which is more important.  But to me, nothing is more important than family!  Allan's on of 6, and they all talk all the time.  I'm one of 2 (15 months apart) and this is how we are!  Any suggestions?  I'm gonna be sick.  Gotta go.  Thanks-eyrin
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I will send you a private message.

Rebecca
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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
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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!!
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Thank you...I'll look at some other places for some answers or opinions. I hope you're doing well!  Take care - eyrin
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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
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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
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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
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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
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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)  :)
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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

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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
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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
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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 (symptoms) 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
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Please update this if you can. My daughter is chiari zero but incapacitated. We are in Hendersonville.
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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?
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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.
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  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.
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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.
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  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.....

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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)
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  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
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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! :)
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  Hi and welcome to the Chiari forum.

We do have his info in our list of Drs  in the Health Pages.....U will find his info there.

http://www.medhelp.org/health_pages/Neurological-Disorders/create?cid=186&edit=1&id=1062&name=DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA
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