Hello Everyone,
I was recently diagnosed with a Chiari Malformation. My symptoms seem to manifesting them self more and more. So i left with the dilemma of live with the potential of symptoms worsening or opting for surgery. I had a consult with Dr. Weingart who suggested surgery. Has anyone had their decompression surgery performed Dr. Weingart.. Please share your thoughts.
Did you see Dr. Weingart. I've got an appointment set with him in a month. I'd love for you to send me a private message on your whole experience,
Thanks!
~Mandee
Hello Mandee,
I first met Dr. Weingart in May 2012 during my initial consultation. Prior to my visit i had already convinced myself that i was not having anyone perform surgery on my brain i only wanted some medical assistance with pain and symptom management.
During that first visit he reviewed my MRI and confirmed the findings. He explained Chiari, the amount of operations he has performed and his success rate as a surgeon. He let me know that the only relief to my pain, and symptoms would be decompression surgery. As a RN, my thought were that he is a surgeon, and he is in the business of cutting and making money. I asked him can he guarantee that the symptoms would be corrected with surgery (of course he couldn't guarantee that). He did explain that he does not choose to operate on everyone only individuals with true Chiari (hence keeping his success rate up). Fast, forward my symptoms increased, and worsened within the month. By the end of May i made a date for surgery (June 8). I can't really tell you what took place in the OR but recovery was challenging but not unreasonable. My health is back and better than before. I thank him for giving me back my life. As my husband said he doesn't need much of a personality he just needs to be able to cut and fix accurately. Post op i have see him approx 3-4 times. I have had no unexpected complications...none.
Prior to surgery and post op if i or my husband had any questions we shot him and e-mail and he usually responded quickly.Overall i think he is a good surgeon, but at time his personality leaves alot to desire.
Please feel free to contact me if you have any other questions. Good luck
THANK you both SO much! It's so hard to find a surgeon. I wanted to see Dr. Rosner in Hendersonville, NC but he doesn't accept insurance. But I hear how great he is that he finds things most surgeons miss. I wish making a decision was easier ir that their was a good surgeon in my state.
My Best,
Mandee
Summer,
I'm having trouble getting an answer from his office as to what I should expect for my 1st consultation appointment. I'm coming from out of state and need to book airfare. Should I plan just a day? Can you friend request me so we can talk?
Beeba,
My health has been on decline for a decade especially the last 5 yrs. Pain has always been a part of my life so I didn't think anything of it. My memory and numbness in my arms were what I went to the Neurologist for. The MRI showed a 10mm Chiari Malformation.
I am going to Ghassan Bejjing at Univ of Pittsburgh this Thursday and then Jon Weingart at John Hopkins in Baltimore Thur Oct 4th. I've got BCBS PPO and did NOT find Doctors in Florida.
I have no idea what to expect at the consult. Both my parents are coming for support. I'm assuming they'll be able to get tests down before I leave.
I was diagnosed by a Neurologist that I would not recommend in South Florida so I won't list his name.
~Mandee
West Palm Beach, FL
Chiari Malformation 10mm just diagnosed
569-ChiariBelowMRIPic.jpg (67.5 KB)I took my 7 year old son to Dr. Weingart. We saw saw three different neuroligists and he was by far the best choice. My wife was also just diagnosed with a 22 mm Chiari and we will almost certainly go back if she needs surgery.
There are specialist in Atlanta @ Emory also
Mandee428 said:
Summer,
I'm having trouble getting an answer from his office as to what I should expect for my 1st consultation appointment. I'm coming from out of state and need to book airfare. Should I plan just a day? Can you friend request me so we can talk?
Beeba,
My health has been on decline for a decade especially the last 5 yrs. Pain has always been a part of my life so I didn't think anything of it. My memory and numbness in my arms were what I went to the Neurologist for. The MRI showed a 10mm Chiari Malformation.
I am going to Ghassan Bejjing at Univ of Pittsburgh this Thursday and then Jon Weingart at John Hopkins in Baltimore Thur Oct 4th. I've got BCBS PPO and did NOT find Doctors in Florida.
I have no idea what to expect at the consult. Both my parents are coming for support. I'm assuming they'll be able to get tests down before I leave.
I was diagnosed by a Neurologist that I would not recommend in South Florida so I won't list his name.
~Mandee
West Palm Beach, FL
Chiari Malformation 10mm just diagnosed
First of all....Let me remind everyone of Ben's Friends Guidelines:
Thanks for your cooperation.
Adria,
I apologize but I did have to delete your post. I totally understand not all Doctors or Medical Providers are a good fit with every patient. I have personally seen (everyone laughs) about 65 Medical Specialists since 7/10/2001. I have been told to make a psychiatric appointment by an ENT, that there was nothing wrong with me physically. I have been misdiagnosed numerous times & started treatments that only made me sicker. I have cried so many tears I could fill oceans. Many CM patients have major issues post surgical. I am probably one of the worst cases, so I totally understand. I Love my NS. He not only saved my life, he kept me from becoming a quadriplegic. I would never blame him for my difficult post surgical issues. I am not discounting your experience in any way. I am sorry you had a bad situation. I have read every profile for every Member on this forum. In the past few months we have been hearing more & more positive CM surgical outcomes & personal stories. I personally attribute this to better trained and educated NS & support Medical Staff. That is so promising. I never want anyone to live as I have & am because of Chiari.
Ben's Friends is such a wonderful Rare Disorder Community. We cannot jeopardize the whole Community by making negative statements about Medical Providers or Facilities. There are attorney's scanning the internet for negative posts just so they can sue the individual who made the statement & organizations that the statement was posted on. One negative statement could affect 25,000 International Rare Disorder Members. In the future if anyone wants to share negative information please exchange email addresses. Again, I am not in any way saying Members don't have negative medical situations. Just please help us to protect Ben's Friends for everyone.
Thanks,
Tracy Z.
SUMMErRAIN,
I've got a question that I don't feel comfortable asking on the discussion board. I tried sending you a private message but It says you've got to accept my friend request. Thanks!
I highly recommend him. He was my six year old sons surgeon. We drove from Michigan to have him do it. He does surgery different than anyone that I could find. He actually puts the bottom of the skull back unlike the surgery they have been doing for 20 years. I felt real uncomfortable about a doctor removing part of my sons skull and not putting it back. He is a league above the rest. I hope this helps. This has been our experience with him. Good Luck!
God Bless!
