Chiari Online Support Group

Member Recommended Doctors - PDF File List


#1

This is a list of doctors our members have recommended to us. You will need to do your own research, and make your own decisions on whether or not a doctor on this list is the doctor for you. If you are not comfortable with a surgeon, please keep looking until you find one that fits your specifications. Many of our members have to go to several surgeons before they find the right one, so please don't feel the recommendations of the first surgeon you see are set in stone...you are ALWAYS free to get a second, or third, or twenty-fifth opinion :)

If you have any questions, please message me, or post a discussion. We just ask that negative reviews about specific doctors be kept to private conversations, anything public opens Ben's Friends to liability.

Thanks!

Mandy


#2

Where is the list? I am new here


#3

I recommend Dr. Michael Rosner, Hendersonville, NC , Hospital, Parkridge


#4

Is there a list of Florida Doctors?


#5

Donna I have heard a lot of good things about Dr. Michael Rosner! :)


#6

Dr. Rosner is already on the list and yes, he is very well experienced and thought of. There is a list of Florida Providers. We also have a Florida Group I think. I will double check to make sure.

I am sorry we don't have a Florida Group, but I can start one if you would like. That way all Floridian Chiarians could have a meeting place on this Forum. All I need is a Picture you can Message to me that you would like to represent the Florida Chiarian Group.

Thank you Mandy !!!!


#7

We live in St. Charles Illinois and highly recommend Dr. David Frim. University of Chicago Hospital.


#8

I would like to share my opinion about this list, as I have had experience with many of these doctors. First of all, there are several that did my daughter NO JUSTICE. Her Chiari was not easy to diagnose, as her tonsils were only herniated to 5 mm. She saw two of the doctors on this list (one in CA, one in NV), who both claimed Chiari was not her issue. I also consulted with several other doctors, who claimed that she had no issue or who did not follow up with me after I had sent them her MRI. I'm sorry to question their expertise, but honestly, if they are not familiar with measuring the CSF flow, the measurements of the skull, the pointy shape of the cerebellum, and other less common signs of Chiari, I don't believe that they are knowledgeable in it. Had I bowed to their 'lack of expertise' & not continued to pursue my daughter's issues, she would be forced to live a life full of pain & invalidity. Thankfully, I continued my efforts & found 3 doctors on your list who found her problem using less familiar methods of diagnosis, a true sign of knowledge. Dr. John Tew of Ohio discussed with me on the phone, several of the signs of Chiari that he was able to identify. Dr. John Oro, of Aurora, CO, also diagnosed her Chiari & did her brain surgery. Dr. Daniel Heffez, of Milwaukee, WI found her Tethered Cord and did her detethering surgery. I am happy to see that they are the two doctors on the list who come the most frequently recommended. Heffez is listed 17 times, Oro 16. I will tell you that they both were fantastic & deserve the top 2 frequently recommended. I would also like to tell you that I have few resources or finances, but I work hard to research any assistance available. It also helps that both doctors accepted her insurance, which is available through her father. My point is, don't think that it's not a possibility & don't give up until you have found solutions. And of course, if you are able, I highly suggest Oro &/or Heffez.


#9

Am I able to share this list in other places or with other chiarians or is this super “top secret” to just this forum?


#10

Wouldn't/Didn't say any names. Not the place to do so. It is quite probable that those same doctors would be able to help someone with Chiari that presents in another manner.

I do think it's important for people to understand that those who are seen as authorities in Chiari can lead you astray. We had quite a few experiences when we returned home feeling totally depressed and at a loss for answers at the hands of those doctors. It scares me to think of some in that position who would accept defeat & live with a lifetime of pain, or worse.

My goal was not to smut anyone specific, but just to help others understand that even in the world of authorities, Chiari is not an easy fix. (We are now having an issue that Oro & Heffez are giving me different perspectives on---HELP---Those 2 both walk on Chiari water, in my eyes!!)

'If' anyone hits the same walls that we did? Isn't it quite common in the Chiari world? I didn't think that we were an isolated case??

I don't think I have much to offer in the way of 'guidance,' but I am certainly open to answering questions & sharing frustrations!!

As far as persevering & getting my daughter the help she needs-still working on that one! But, I totally trust our Neurosurgeon(s) now. I am thrilled that we have their expertise in our lives. :)


Beeba said:

Vonda you make a very valid point and if anyone has hit the same walls that you did I just ask that people contact you privately as to not put the site in any jeopardy. I hope you will encourage them and have the same success that you did. I am sure your guidance will be a very valued source at what can be a very difficult time. I only request it be done privately. I am so glad you persevered and got your daughter the help she needed. You go momma!!

Vonda Gardner said:

I would like to share my opinion about this list, as I have had experience with many of these doctors. First of all, there are several that did my daughter NO JUSTICE. Her Chiari was not easy to diagnose, as her tonsils were only herniated to 5 mm. She saw two of the doctors on this list (one in CA, one in NV), who both claimed Chiari was not her issue. I also consulted with several other doctors, who claimed that she had no issue or who did not follow up with me after I had sent them her MRI. I'm sorry to question their expertise, but honestly, if they are not familiar with measuring the CSF flow, the measurements of the skull, the pointy shape of the cerebellum, and other less common signs of Chiari, I don't believe that they are knowledgeable in it. Had I bowed to their 'lack of expertise' & not continued to pursue my daughter's issues, she would be forced to live a life full of pain & invalidity. Thankfully, I continued my efforts & found 3 doctors on your list who found her problem using less familiar methods of diagnosis, a true sign of knowledge. Dr. John Tew of Ohio discussed with me on the phone, several of the signs of Chiari that he was able to identify. Dr. John Oro, of Aurora, CO, also diagnosed her Chiari & did her brain surgery. Dr. Daniel Heffez, of Milwaukee, WI found her Tethered Cord and did her detethering surgery. I am happy to see that they are the two doctors on the list who come the most frequently recommended. Heffez is listed 17 times, Oro 16. I will tell you that they both were fantastic & deserve the top 2 frequently recommended. I would also like to tell you that I have few resources or finances, but I work hard to research any assistance available. It also helps that both doctors accepted her insurance, which is available through her father. My point is, don't think that it's not a possibility & don't give up until you have found solutions. And of course, if you are able, I highly suggest Oro &/or Heffez.


#11

Thank you, Mandy. I think that the way you explained it, it answered my concerns. It is great to have the recommendations of others to get started. I'm sure that some get the answers they need at that point. More power to them, right?

My concern with the list was, as you understood, just that some would see those as trusted authorities & that may not always be the case, especially with different types of Chiari presentation. We had some pretty depressing moments after seeing some doctors & it would have been easy to give up & spend our lives crying in our soup. It's important to understand that Chiari knowledge is evolving & changing rather quickly at this point. There is hope, even for those of us with smaller herniations!!

Actually, amazing doctor(s)! She had the tethered cord surgery with Heffez & brain surgery with Oro. Our only reason for changing Docs was finances & timing, due to travel issues. I really liked Tew, also, but couldn't swing the trip to him.



Mandy said:

Hi Vonda,
You bring up an excellent point. I think in the previous edition of the doctors list, it was clearly explained these doctors are ones recommended by patients, and that it's only a starting point for members in search of a doctor, but I neglected to update that part of it when I redid the list. Thank you so much for bringing that to our attention, I would hate it if new members thought they had to suffer because they went to one of these doctors and were not treated due to having a smaller herniation (which as you know is one of the bigger hurdles we face). You sound like an amazing Mom, and kudos to you for doing your own research and finding an amazing doctor who was able to help your daughter :)

Mandy

#12


Just because a doctor is on the list does not mean that he will be the doctor that will help you. We have been to many doctors who said there is nothing wrong with my daughter. We have also been to doctors who said that chiari is too small and that because it “appears” that she might have EDS there is nothing that can be done. If you do not get help from the doctors that you are seeing, even if they are on this list, don’t give up! We didn’t! We kept searching for someone to help my daughter and finally found the help she needed. This doctor who helped her is on the list as well as the doctor who said that there was nothing he could do. Keep searching!


Vonda Gardner said:

Thank you, Mandy. I think that the way you explained it, it answered my concerns. It is great to have the recommendations of others to get started. I’m sure that some get the answers they need at that point. More power to them, right?

My concern with the list was, as you understood, just that some would see those as trusted authorities & that may not always be the case, especially with different types of Chiari presentation. We had some pretty depressing moments after seeing some doctors & it would have been easy to give up & spend our lives crying in our soup. It’s important to understand that Chiari knowledge is evolving & changing rather quickly at this point. There is hope, even for those of us with smaller herniations!!

Actually, amazing doctor(s)! She had the tethered cord surgery with Heffez & brain surgery with Oro. Our only reason for changing Docs was finances & timing, due to travel issues. I really liked Tew, also, but couldn’t swing the trip to him.



Mandy said:

Hi Vonda,
You bring up an excellent point. I think in the previous edition of the doctors list, it was clearly explained these doctors are ones recommended by patients, and that it’s only a starting point for members in search of a doctor, but I neglected to update that part of it when I redid the list. Thank you so much for bringing that to our attention, I would hate it if new members thought they had to suffer because they went to one of these doctors and were not treated due to having a smaller herniation (which as you know is one of the bigger hurdles we face). You sound like an amazing Mom, and kudos to you for doing your own research and finding an amazing doctor who was able to help your daughter :slight_smile:

Mandy

#13

Way to sum it up, Just Me! Well said!!


#14


You may share this list. Would you please share where you found it?

Thanks,

Tracy Z.


Lifesvr7 said:

Am I able to share this list in other places or with other chiarians or is this super "top secret" to just this forum?

#15

My opinion is that your narrative sounds terrific!! Thank you for including my input :)

Mandy said:

Alright, the narrative for this list has been updated! Please let me know if I missed something.

Thanks!

Mandy


#16

Did I sound defensive, Beeba? I don't know, maybe I was?!? I was trying to respond to each of your comments. I think maybe I wanted to let you know that I wouldn't openly smut anyone, while also probably feeling a bit defensive in case you thought I would start to rant. I'm sure that you probably have to put limits on conversations before they become issues, and my comments could have easily opened the door to it! Thanks for letting me know. I'm sure it is hard to have to limit the negativity in a forum such as this one, when so many people have so many frustrations. Thank you for
being here for us.

Beeba said:

Vonda, hope you didn't feel I was coming down on you as I agree strongly with the point you made - it was more to stop others from saying anything publicly. I am glad you shared your opinion and experience - I just wanted to stop any one from responding negatively. When that happens the moderators have to scramble and admonish people - it is a crappy position as sometimes you agree with the opinion!! Lol. I am sure you will help anyone who reaches out to you as you are a wonderful member. Again I hope that my statement did not come across wrong or towards you. I just bum out when someone like you gives great food for thought and then all of a sudden people start naming people and slamming drs where they had a negative experience. Considering I am somewhere in the 30s in terms of drs I would love nothing more than to rip them all a new one publicly. You can just be so angry after a negative interaction that you lose track of good sense. Again I liked your post very much and my response was more to others who probably agree and I just wanted to close the gates before they flooded. Beeba

Vonda Gardner said:

Wouldn't/Didn't say any names. Not the place to do so. It is quite probable that those same doctors would be able to help someone with Chiari that presents in another manner.

I do think it's important for people to understand that those who are seen as authorities in Chiari can lead you astray. We had quite a few experiences when we returned home feeling totally depressed and at a loss for answers at the hands of those doctors. It scares me to think of some in that position who would accept defeat & live with a lifetime of pain, or worse.

My goal was not to smut anyone specific, but just to help others understand that even in the world of authorities, Chiari is not an easy fix. (We are now having an issue that Oro & Heffez are giving me different perspectives on---HELP---Those 2 both walk on Chiari water, in my eyes!!)

'If' anyone hits the same walls that we did? Isn't it quite common in the Chiari world? I didn't think that we were an isolated case??

I don't think I have much to offer in the way of 'guidance,' but I am certainly open to answering questions & sharing frustrations!!

As far as persevering & getting my daughter the help she needs-still working on that one! But, I totally trust our Neurosurgeon(s) now. I am thrilled that we have their expertise in our lives. :)
Beeba said:

Vonda you make a very valid point and if anyone has hit the same walls that you did I just ask that people contact you privately as to not put the site in any jeopardy. I hope you will encourage them and have the same success that you did. I am sure your guidance will be a very valued source at what can be a very difficult time. I only request it be done privately. I am so glad you persevered and got your daughter the help she needed. You go momma!!

Vonda Gardner said:

I would like to share my opinion about this list, as I have had experience with many of these doctors. First of all, there are several that did my daughter NO JUSTICE. Her Chiari was not easy to diagnose, as her tonsils were only herniated to 5 mm. She saw two of the doctors on this list (one in CA, one in NV), who both claimed Chiari was not her issue. I also consulted with several other doctors, who claimed that she had no issue or who did not follow up with me after I had sent them her MRI. I'm sorry to question their expertise, but honestly, if they are not familiar with measuring the CSF flow, the measurements of the skull, the pointy shape of the cerebellum, and other less common signs of Chiari, I don't believe that they are knowledgeable in it. Had I bowed to their 'lack of expertise' & not continued to pursue my daughter's issues, she would be forced to live a life full of pain & invalidity. Thankfully, I continued my efforts & found 3 doctors on your list who found her problem using less familiar methods of diagnosis, a true sign of knowledge. Dr. John Tew of Ohio discussed with me on the phone, several of the signs of Chiari that he was able to identify. Dr. John Oro, of Aurora, CO, also diagnosed her Chiari & did her brain surgery. Dr. Daniel Heffez, of Milwaukee, WI found her Tethered Cord and did her detethering surgery. I am happy to see that they are the two doctors on the list who come the most frequently recommended. Heffez is listed 17 times, Oro 16. I will tell you that they both were fantastic & deserve the top 2 frequently recommended. I would also like to tell you that I have few resources or finances, but I work hard to research any assistance available. It also helps that both doctors accepted her insurance, which is available through her father. My point is, don't think that it's not a possibility & don't give up until you have found solutions. And of course, if you are able, I highly suggest Oro &/or Heffez.


#17

I will certainly share where it came from. Thanks!


#18

I would like to recommend Dr. Violette Recinos from the Cleveland Clinic. My daughter, whom she did the surgery on, has had multiple head surgeries early in life due to hydrocephalus. Dr. Recinos not only did my daughter’s Chiari decompression without flaw but she was faced with a very difficult operation. My daughter who is 16 years had meningitis when she was a baby. She got it as a result of an infection from a head operation (not performed at the Cleveland Clinic). This left my daughter’s brain with much, much scarring that Dr. Recinos had to work around. As if that wasn’t enough, Dr. Recinos replaced my daughters clogged vp shunt (used to drain excess fluid from the brain because of hydrocephalus) during the same operation. My daughter is doing wonderfully! No infection, no swelling, healing beatifully. Dr. Recinos is very kind hearted. I just love her as my daughter’s doctor.


#19

I started seeing Dr. David Eng in Syracuse, NY. He is in the same practice and Dr. Montgomery. I have heard from many people that Dr. Montgomery is an amazing surgeon. So far, I am very happy with Dr. Eng. We're not sure about surgery yet. If and when the time comes, who do I contact to add him to the list?


#20

Brandon Isaacson, M.D.
Neurotology
Comprehensive Skull Base Program
UT Southwestern Medical Center
Phone(214)â– â– â– â– â– â– â– â–  TeleFax(214)â– â– â– â– â– â– â– â– 
www.utsouthwestern.org