Chiari Malformation - Online Support Group
We are patients and survivors of Chiari (types I-IV), here for your support.
Recommending Dr. Jon Weingart in the Washington, DC Area
If you need a good, experienced Chiari Specialist and live in the Wash, DC Area, than I highly recommend Dr. Jon Weingart at John Hopkins University. He is a great surgeon who does over 800 Chiari decompression surgeries a year, about 5 a week. He is very good with answering all your questions. He takes his time to explain everything to you with respect to your scans and what he intends to do during the surgery. His staff is excellent, caring and genuinely kind. They make you feel very at ease and he is always available via email to answer any additional questions you may have both before the surgery and after the surgery. The hospital staff, particularly the ICU nurses were EXCELLENT and making you feel comfortable, as well as reassuring your worried family.
I had my surgery on Sept. 9th and have no regrets at all. I am actually now pain free and no longer on any medications. The pain in my neck and shoulder has gone away completely. I no longer can hear my heartbeat in my ears. No headaches in the back of my head. I've sneezed quite a few times since my surgery and no pain. Yay!!! I am no longer tired all the time. I no longer feel the numbness in my hands that was a serious concern for me. BTW, I also had Syringomyelia which appears to be healing up in my spine. I am due for my next MRIs in March where Dr. Weingart will review the scans to make sure everything is healed and I no longer have the Chiari herniation nor the Syrinx. Based on the lack of symptoms at this point, it looks like I will have a favorable outcome.
Johns Hopkins Hospital is one of the best in our country and if you live out of the area but choose to have your surgery at this hospital, they have great accommodations nearby for your family to stay and have shuttle buses arranged with the recommended hotel facilities to transport your family to the hospital.
I was very pleased with Dr. Weingart. He made me feel confident that I would be well again and that he was very knowledgeable about the condition and had the skills and talent to have a very successful surgery. Additionally, I did my research on him and he has published several research articles in medical journals on Chiari.
Please contact his office at Johns Hopkins University Hospital - Neurology Department. I hope his skills will prove effective for you as well.
Tags: WA, recommendation
Replies to This Discussion
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Permalink Reply by Bella on -
Wondeful! I have a syrinx due to impact fall....not Chiari...but can aquire it....your syrinx is disappearing? You are so lucky! I want my syrinx to go away, its from T5 to T10 and growing downward...I hear the drain surgeries are unsucessful and so are the shunts, they block and cause infection and need replacement every 2 years. Do you know of anyone who has had sucessful outcome of a syrinx procedure and how to get rid of them? Please see if you can help me....thank you...
Bella . email jeffgreenswife@gmail.com
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Permalink Reply by Michael Salasky on -
Good to hear. Thank you for a great rec. I have a consult with him this coming Tuesday Feb. 7. This makes me feel much more at ease.
Mike
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Permalink Reply by Kisimi on
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That's great! His assistant Susan is also great. Make sure you have a list of all your questions so that he can address all your concerns. I had my list with me ready but he answered a lot of my questions before I had a chance to ask. He will take his time and address each of your concerns and this is your time to really make sure you have all your questions answered. Make sure you bring your MRI films with you. Don't forget. And good luck to you. I hope it works out for you. I am now pain-free, on no meds and have my life back. I wish the same for you. Please let me know how it goes. Sending positive energy your way!!!
Michael Salasky said:Good to hear. Thank you for a great rec. I have a consult with him this coming Tuesday Feb. 7. This makes me feel much more at ease.
Mike
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Permalink Reply by Kisimi on
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I'm sorry, I can't help you with that on as my Syrinx is due to Chiari and not that the Chiari was corrected with the decompression surgery, the syrinx has closed up. Do a google on Syrinx as there are a few organizations that specialize in just the Syrinx and may be a source of info for you. Good luck.
Bella said:Wondeful! I have a syrinx due to impact fall....not Chiari...but can aquire it....your syrinx is disappearing? You are so lucky! I want my syrinx to go away, its from T5 to T10 and growing downward...I hear the drain surgeries are unsucessful and so are the shunts, they block and cause infection and need replacement every 2 years. Do you know of anyone who has had sucessful outcome of a syrinx procedure and how to get rid of them? Please see if you can help me....thank you...
Bella . email jeffgreenswife@gmail.com
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Permalink Reply by Becki Bowling on -
Thank you for the info. I am brand new to this & didn't know where to turn. This is not something you can just pick someone out of a phone book to help you with. I am about an hour 1/2 south of DC in VA so I will have to check this doc out.
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Permalink Reply by Kisimi on
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There are a few good ones in the DC Area. Please shoot me an email and I will help you all I can.
Thanks
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Permalink Reply by Joanna
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Thanks for posting this. Has your recovery still been good? Any return of symptoms? I have a consult with Dr. Weingart on June 5th to review my case and discuss surgery. Depending on the MRI I have either a 7mm or a 9 mm descent and the cine MRI confirmed that I have a partial blockage. I have been working through a series of illnesses and chronic pain for the last 11 years and hope that this will be my last hurdle. Honestly, I just want to have the surgery and get past this and on with my life.
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Permalink Reply by Kisimi
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Hi Joanna, and welcome to the group. My recovery is going great. I am pain and symptom free. I am no longer taking any medicines and I feel great. My activity level is back up and I am able to do all the activities I did before the Chiari got me. I last saw Dr. Weingart back in April for my 6 month follow up. He reviewed my MRIs which showed I no longer had the Chiari herniation and my syrinx had healed. I do not take any medications at all and I am completely pleased with the results of my surgery and with Dr. Weingart. He has always been very forthcoming with telling me what to expect. Explaining what he planned to do and why the surgery was needed. He answered all my questions patiently and fully. Many of which he answered before I had a chance to even ask him. Please let me know how your appointment with him goes. I am sure he will provide you with a lot of information about the specifics of your condition. Ask lots of questions, take notes and be open to hearing what he has to say. Good luck and if you have any questions, please don't hesitate to ask.
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