Chiari Online Support Group

Dr Patel @ MUSC

I sent this question about Dr Patel over a year ago.After seeing about 15 specialists and getting no relief from constant dizziness while upright, it was time to find a new doctor .The LP shunt that was put in @ Duke University and 1 1/2 years of driving 10 hours round trip for adjustments every 6 weeks did not work. My symptoms were worse. I had been looking at this site and following a person that seemed to have my symptoms( her name was Pebbles) I watched her outcome of surgery. I also had been watching Quiltaholic- a patient of a N.C. neurosurgeon. I read that a upright MRI was important(thanks Jen). I scheduled appts with Dr Rosner and Dr Patel. I saw Rosner first and had a lengthy visit and tests with cardiologist and more MRIs. After being fitted with a Philadelphia collar, Dr. Rosner wanted to schedule me for a decompression surgery. I had too many questions to sign up for surgery that same day. I got a upright MRI before making any decisions. It showed my problem (Thanks Dan Culver for answering my questions and being so helpful) I sent several questions to Dr. Rosner after the Upright MRI. Silence speaks volumes. I next saw Dr. Patel. He listened to me , was very honest and humble. We discussed MRI findings and decided on a surgery. I had a O.C. fusion on 10-6-14. I am recovering very well. My dx was cranial instability and basilar invagination.Guess what? NO DIZZINESS when upright!!! I can't stop smiling. Thanks to God for leading me to the right doctor. I now have to get the L. P. shunt removed and regain neck muscle strength. I have not felt this good in years.

There was a symposium held @ MUSC on 11-20-14 by CSF. I met some amazing people that have shared in my frustrations of finding help . We need to be our own advocates and not give up. There are some great physicians out there. I was told the symposium will be on the CSF.org website in the near future Please check it out and share it with your family physicians and anyone interested. Thanks to everyone who takes the time to share their information. I am forever grateful.

Patty Ann

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This was so great to hear. I was Dx in Feb. 2016. I know someone else who had surgery with Dr.Patel. It’s been so scary and confusing trying to figure out who to trust and will be the best doctor. I’m in Columbia, SC. Maybe Patel should be someone I seriously consider.

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I had several incorrect diagnosis before Dr. Patel . I was dizzy every time I was in the upright position. I was fine when I was flat in the bed. My hands would go numb, memory was horrible, my b/p was up and down and I developed sleep apnea. Since my OC fusion I have no dizziness while upright, my b/p has leveled out , and no more sleep apnea. I feel like I have been given a second chance at life.!

Has anyone seen Dr. Patel orDr. Varna at MUSC I am looking for some feed back on these doctors. How did you like them? Where they very knowledgeable on Chiari and EDS. Did they do surgery on you? How are you doing? I am looking for a doctor in the SC area. Need some help
Thank you for any help gentle hugs Lisa

So thrilled to hear the great news about you.

Keep us posted with even more great results. So thankful your feeling better.

Hi,
I know this is an older post, but i just had respond. I’m glad to hear you’ve found great surgeon! How are things going now? Forgive me if you’ve posted update in another location.
I’m still learning this site. It is amazing what we have to go through to get treatment. It would be great if there was some way these doctors could experience our symptoms as we describe them, like a virtual reality set up. If they spent just a few mins in our world dealing with the pain, brain fog, memory and concentration alone would be too much for their brains to take.
I’m glad to hear mention of doctors in SC area. I had a difficult time getting the right doctors with insurance, without it is even more of a headache. Thankfully have been able to I’ve been able to local community clinic. I’ve been seeing a NP who has been wonderful. She is attempting to get me approved to see Dr. Vandergrift at MUSC. Have you by chance heard anything about him?

Good morning! I am sorry you are having these problems. I can totally relate to what you are going through. I had those symptoms for five years. I am better now - no dizziness, no brain fog, concentration is much better. I have other issues related to c-4, c-5, and c-6, but I am trying to hold off on another surgery as long as possible. The key is to find a doctor who really listens and has an open mind. You have to be your own advocate. Only you know your symptoms. Most of the doctors I saw wanted to blame my symptoms on anxiety and give me a prescription. I knew that was not the problem. The only thing causing anxiety was that they could not give me an accurate dx.! The diagnostic tool that was able to help Dr. Patel were the Upright MRI images that I brought to him. My husband did research and found out about this. They have an office in Jacksonville, Fla. I spoke to a man by the name of Dan Culver in Melville ,N.Y. who helped me with the dx codes that were able get my true diagnosis-Cervical Instability that was caused by upper cervical ligament damage. Dr Patel was able correctly diagnose me because his knowledge and these images. I sure hope this helps. I have not heard of Dr. Vandergrift. Maybe you could request a joint consult with the two? I don’t know if this is possible, but it is worth a try. It takes a while to see Dr. Patel, but he is worth the wait. Oh by the way, when I was at my lowest point , I said a prayer to God to help me accept what was ahead of me and to give me faith. Within two weeks I spoke to Dan Culver. I will be praying for you.

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I hope you received my other e-mail. Oct. 6 will be 2 years since my surgery by Dr. Patel. I still feel so much better than the 5 years prior. I no longer take any medications including b/p meds, no longer have to use a sleep apnea machine. There is still pain from another cervical issue, but after the other sxs I had to deal with for so long, I’m not complaining. I think you are in good hands at MUSC. If you don’t get the answers you want continue to be your own advocate. An upright MRI is a must.

Good morning,
Thanks so much for taking the time to reply. I’m so glad to hear about your progress. Yes, I agree on prayer. If it was for my faith in and walk with Jesus, I don’t know what I would do. I know He can heal without any intervention from the doctors. I also know the doctors can’t do anything with God. He provides the way, and is due all praise, glory and honor. One thing i can say about cm-1 is that it has driven me closer to God. I’ve been dealing with these symptoms for as long as I can remember, severe headaches when I was in elementary school. Just like you, I’ve been told was anxiety due to stress. I don’t deny that was a factor, but not the root. , but I was so frazzled I just took meds. After couple months off felt better, would go back to work. After year or so same thing. After when symptom list kept getting longer, took longer to recover. I pushed until saw neurosurgeon who found CM1 in 2014. Say local surgeon who said symptoms didn’t warrant surgery. Since then i left work for reasons in addition to med. My symptoms have really increased and I’ve not been able to hold a job. So, I don’t have insurance. Don’t qualify for state Medicaid cause do not have kids, not been declared disabled. Was at ER Thursday night due to heart racing and extremely weak. Dr tied heart to dehydration, but saw it fluctuating, referred me to cardiologist. I’ve, read about that upright MRI, never had one. I’m waiting to hear if my referral to MUSC will be accepted. I was thinking they would do more tests. Will continue praying and trusting. I can say, despite all this, i am at peace and have more joy than I’ve ever had before! I will try to remember to let you know what happens!

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