Neuro Says I Do Not Have Chiari...Second Opinion? Thanks!

General
1

Before I begin, I am posting this primarily because I cannot drive - at all (which is devastating). I have many doctor's appointments that my twin brother takes me to, which is already overwhelming. I am thinking of getting a second opinion about my Chiari, but first would like your opinion before asking to go clear to Phoenix.

My Neurologist, Dr. Saperstein, is highly-regarded as one of the best Neurologists in Phoenix. First, when I stepped into his office, it is NOT a normal office (lol). His office, the actual space he works in (not including the waiting room), is absolutely incredible. So, by that, I can tell he is successful, but unfortunately he was rude to me. I suppose I shouldn't let this get in the way of what I hear to be a great doctor. By the way, Dr. Saperstein was the one that found out I have Postural Orthostatic Tachycardia, which in turn can be caused by Chiari.

Anyway, I sent him my MRI films (he did this as a favor - I did not ask him to do this). He looked them over and said I do not have Chiari. Originally, I asked the receptionist if he treated Chiari. Instead of going to check, she immediately knew what it was (which told me that he obviously knows this stuff). I have been told by another Chiari patient to see Dr. Joy. However, Dr. Saperstein is far more experienced then even Dr. Joy. Here are the comparisons:


Dr. Saperstein's Website: http://www.phoenixneurology.com/staff/saperstein.php
Dr. Saperstein's Bio (PDF): http://www.phoenixneurology.com/cv/Saperstein.pdf

Dr. Joy's Website: http://gilbertneurology.com/about.php?d=joy

As you can see, Dr. Joy is underwhelming. Not only does he NOT have a full profile, he is the newest member (from a review, only 3 years of experience). Dr. Saperstein doesn't just treat Chiari however, which does worry me.

Anyway, your opinions would be much appreciated. I've seen a couple of Neurologists, but I feel none of them have truly cared.

Thanks for your help.

2

Ask if they saw any drop/herniation. Mine said the same thing but said I have a 3mm drop and its was not the cause of my POTS/Dysautonomia.

3

He's going to be annoyed with me for asking (lol) since in my initial visit he laughed at my research notes. Wouldn't he have mentioned any drop or herniation?

So have you pursued the 3mm herniation and how are you doing now?

Thanks for the reply.

4

Did you get the report from your MRI? Does it mention anything about Chiari?

My NL is worthless when it comes to Chiari. When he couldn't find anything else to explain my symptoms, he finally told me to pursue the chiari with a NS. At that point, I had already seen 2 NS locally. One wanted to take the wait and see approach. The other was ready to do surgery once he saw I have good insurance and told me he could get rid of my headaches 100%. Funny thing was headaches were not my main complaint. Needless to say this is when I faxed my reports to Dr Oro.

From what I heard, POTS is more debilitating than Chiari.

Hope you get some answers.

Diana

5

not if its 3mm. his office just told me a month and a half ago, he doesn't see anyone with under 5mm.

6

Robby,

Having both Chiari and POTS, I would definitely seek another opinion. My NL is considered one of the best in my area, but he knows little about chiari. that might have changed in the last 9-10 months since I have seen him. I would seek out a NS, Dr. Oro is a great one from my understanding. It may take some time and I can empathize with the difficulties you are having know because we share the same conditions.

7

I agree with your comment about Neurologists. I made a follow up appt after my CM surgeries and the Dr. had the nurse call and cancel my appt. because he didn't think he could help me. There are some good ones but they are few & far between.

razzle51 said:

Neurologist are worthless ... dont even bother seeing one . If you have films send to ORO and see what hew says .... about Neurologists

8

We also have a program thru Ben's Friends that once a month gives a Member a free second opinion. I will try to find the information & send it to you.

9

You really need a Chiari specialist. The advice that people are sharing about Dr. Oro is very good for you.

I am only sharing where I had to travel out of state and saw Dr. Heffez and have had two surgeries with him and he is excellent. His website is just helpful to learn more. If you had any questions you can always contact them as for some more info. Dr. Oro might be closer for you. Hang in there. Will be praying for you too. Sincerely, Mary Lou

http://www.wichiaricenter.org/

10

Tracy, that would be great. At least if you could ask. I just need someone to look at my MRI. I was recently told by the kind members out here that the size of the herniation isn't as important as the inside skull measurements. So I'd really appreciate it if you could ask on my behalf.

TracyZ said:

We also have a program thru Ben's Friends that once a month gives a Member a free second opinion. I will try to find the information & send it to you.

11

@everyone, Thank you for the replies. There's a ton of support out here. Didn't expect so much!


I am thinking of cutting straight through the Neurologist route and going straight to a Neurosurgeon. I hope that they can prescribe me a CINE MRI though - I have heard some insurances don't even cover it. That would be a real downer, but not thinking about that. For now I am going in for a Trigeminal Nerve Block. I need pain relief. I haven't slept in 2 days straight. I feel like fainting.

Also, I've heard a lot about Dr. Oro from this site (only good things) but I cannot travel out of state. For one, my insurance wouldn't dare cover anything out of state and I can't travel anyway. I've heard Dr. Joy, who is in my immediate area, has seen 10-15 Chiari patients, but he is not highly rated (average) on Healthgrades, etc. But I at least need someone to look at my MRI's that has Chiari patients.

Thanks again for the replies. Hope everyone finds answers and gets some treatment.

12

The first thing that came to my mind when I read your original post was - just skip straight to a Neurosurgeon that specializes in CM. Seriously consider traveling if you must. My NS does them on a regular basis, like at least a couple a month and has been doing that for years. Remember that you want to come out of this surgery (if needed) - fixed! ... not a mess that a more experienced NS would have to clean up, ya know. Also, feel free to post MRI's here on this site... Chiari is pretty easy to spot :) Good luck with your sleep! Try not to worry about everything, it's going to be ok <3

13

I don't know how I would travel though. I'll just go out and say it: being disabled means there is no money at all. I am on disability. I can't work and I cannot drive. I definitely want to see a top-of-the-line specialist, but I would think that would require top-of-the-line money. And to travel out of state means my insurance would not be able to cover anything at all. I hope to figure something out...

Thanks for wishing me luck with my sleep and for your reply.

Bill Zern said:

The first thing that came to my mind when I read your original post was - just skip straight to a Neurosurgeon that specializes in CM. Seriously consider traveling if you must. My NS does them on a regular basis, like at least a couple a month and has been doing that for years. Remember that you want to come out of this surgery (if needed) - fixed! ... not a mess that a more experienced NS would have to clean up, ya know. Also, feel free to post MRI's here on this site... Chiari is pretty easy to spot :) Good luck with your sleep! Try not to worry about everything, it's going to be ok <3

14

Just reading a few of your posts, and just wanted to add a thought. My doctor is Dr. Heffez at the Wisconsin Chiari center in Milwaukee Wisconsin. He is an expert in the field and is the Director of the Wisconsin Chiari center. He does surgeries every week, and has dedicated his life for the last 16 years to people like us. Even if you did not want to travel, it would benefit you to just contact their office. You just go to the Wisconsin Chiari center website. Just going to their website will help. You can fill out the online form, and then you can also call their office and you would be speaking to Kim. (It did not cost anything to send my MRI cd to them, and then they contacted me after Dr. Heffez read my latest MRI, which was on cd.) (I just called the hospital where I had my last MRI, and they put it on a disc and I sent it out to Chiari center. The hospital was willing to send it out for me, free of charge. (I am explaining this. because this is all what I had to learn, and wanted to share with you. Sometimes, insurance plans work out of state. You really want a Chiari specialist, like for example, an expert, like Dr. Heffez to read your MRI. He picked up things that were not properly diagnosed by my other nuerosurgeon. At least you would be finding out exactly what is going on with you. This is just information for you to take in and at least think about. http://www.wichiaricenter.org/ I was really very ill last year, (actually for many, years.) I could not drive, and was in bed a good portion of the day. Just take one step, and day at a time. I can always share more, but, I certainly have shared enough at this point.

All I can share, is that I wish I had known about Dr. Heffez many years ago. But I am grateful to God that I did finally take a leap of faith to contact them. I am praying for you and everyone on this site, for you all to get the correct help. God bless, Mary Lou

15

Thank you for the information. I just sent my email to them and I am really hoping that they can help me. It might be a long shot, but I really appreciate the information JC (and also Tracy for first bringing it up).

Today was a particularly bad day (and last night) and I really feel like I am going down hill, so I really can't thank you enough for bringing this to my attention and for the info. Hope you all are doing well.

John "JC" Colyer said:

Here's info from Ben,

Are you in need of a second opinion?

Our new partner, 2nd.md provides second opinions from the world's best medical specialists by online video chat or by phone. With 2nd.md you can talk to world-renowned doctors for medical second opinions at a time when it is convenient for you.

2nd.md is currently offering us one free medical second opinion that is exclusive for Ben's Friends members. To take advantage of the free medical consultation, send an email to 2ndmd@bensfriends.org with your story and tell us why you need a second opinion.

From these email nominations, Ben's Friends team will draw two finalists randomly each month. 2nd.md will then choose the winner from these two finalists.
You can send in your entry emails as many months as you like, but send only ONCE per month. Once you're chosen, you will be asked to create 15-second video testimonial for 2nd.md
To know more about 2nd.md, please visit this link.
Cheers,
Ben
16

Ugh, it is so hard when you feel like you're getting nowhere. I am in the same situation - waiting to find someone who will listen to me. I can't drive or work either - my job is on the verge of firing me since it's been two months with no progress toward getting better.

You're not alone... I don't know if that helps to hear or not. For me, knowing I am not the only one being yanked around by the universe makes me feel better. Things can only go up from here though, right? :)

I hope you find a caregiver who meets all your needs!
Katrina W.