Chiari Online Support Group

Michigan Chiarian, needs advise please!


#1

Hello,

I was recently diagnosed with Chiari & Syrinx (very large) so I am a "surgical candidate" anywhere I go. Looking for recommendations of Michigan NS.


#2

Dr Steinburg Stanford ca amazing


#3

I have only heard of Dr. Frim out of that list and have never read a bad review. Good luck.


#4

Have you heard/read good or bad things about Dr. Gilmer? I am also a “surgical candidate” I just recently had a consultation with her. I live in Virginia but all of my family still lives in Michigan. I have seen a few doctors here but they do not seem to know much about Chiari. So I decided to go to Michigan so when or if I do have the surgery I have family to help me. Just wondering what you have heard about her?

Thanks.

Ps. My grandmother lives in Lake Orion. :slight_smile:


#5

sorry I would help but I live in florida


#6

I’m in ca but can say dr Steinburg is well knowledge and expert in chiari had my decompression jan 28 of this year and I feel so amazing already almost six weeks post op some tightness in neck but nothing I expected. I did my research and please please go to someone who is knowledge in chiari I read horror stories, best to have the best first go round. Still recovering but he seems to think I will be fully recovered by end of March exciting for someone who who has spent years of suffering and no real answers until Stanford ca


#7

I wish you the best on this journey. I strongly recommend Dr. Oro in Aurora, CO. He is AMAZING in every way! He presents all over the world on chair malformation and is a true expert. I believe this is all he does.


#8

I am going to see Dr. Gilmer in April. She did a friend's decompression . I have heard good things about her.


#9

I loved Dr. Heffez, Milwaukee, WI...his Chiari Clinic is located at Columbia-St. Mary's hospital; he also has a couple offices in and around Milwaukee. Loved his staff & the staff at the hospital was amazing...both before & during surgery. Had surgery 10/27/14. He tells you like it is...and doesn't promise to "fix" you. You can research him online.


#10

Hi New2net98,

I was wondering if you could talk a little bit more about your experience of going to a Chiari center, and Dr. Heffez specifically, as opposed to just a neurosurgeon. Did you see a lot of different doctors concerning your overall health or just Dr. Heffez? What kind of tests did he do in your one day consultation? Did he strongly recommend surgery immediately?

I live very close to the center and Dr. Heffez, but would have to pay out of pocket for most of my visits so I'm trying to consider if he would be worth all that money or if I should just go to a general neurosurgeon that my insurance covers. I've done as much research on him as possible and I'm glad you had such a great experience and amazing results, but I have read mixed reviews on him especially if the patient has complications post-op. I get as many opinions and reviews as possible and then make my own decision, but just wanted to talk first hand with someone who was his patient and who had a great experience.

Anything you can share would be greatly appreciated! Thanks!

new2net98 said:

I loved Dr. Heffez, Milwaukee, WI...his Chiari Clinic is located at Columbia-St. Mary's hospital; he also has a couple offices in and around Milwaukee. Loved his staff & the staff at the hospital was amazing...both before & during surgery. Had surgery 10/27/14. He tells you like it is...and doesn't promise to "fix" you. You can research him online.


#11

If you are anywhere near west Bloomfield mi I would say dr malik out of henry ford. He is great!! He saved my life and my daughters life!!


#12

Hi there...two times I've tried to respond back to this & have somehow wiped out what I have typed...hit something on the keyboard with my left semi-functioning hand...lol...easiest answer is that Dr. Heffez has a process for doing things that I found highly well organized. You send your info/tests/MRIs & he reviews them.

Then a consultation happens...he doesn't brush people off...they recommend that you bring some type of recording device so you can review/remember questions & answers you have been given. His staff is amazing. You can call or email them with questions...or fax & they respond pretty quickly. You are sent a package with questionnaires & history questions. It takes awhile to complete but the more you answer the better he can start where he needs to.

The day of your appointment, you will have several things to accomplish...bloodwork, MRIs (both brain & spine) and then his examination...the most thorough exam I've ever had...the standard stuff & then some others I had never done before. He then has one of his team of neurologists come in to do a comprehensive exam, based on those questionnaires & your primary symptoms...mines were what I thought were seizures (turned out to be TIAs...mini-strokes)...I saw Dr. John Broderick. His specialty...strokes. They conferred & I was told that I was a candidate for surgery...he did say that we could wait & monitor...but my husband & I had already discussed this...if I was going to do this, I was going to have the surgery...in my case, dx & treatment had been delayed three years & symptoms were pretty hard to ignore. We didn't want to run the risk of losing more nerve function & not be able to recover from it. It was the right decision for me.

I have had very few complications...at least...none that were not expected. Dr. Heffez does NOT promise that Chiari goes away...the surgery is meant to curtail future nerve damage. We knew, mostly, what to expect from it & I had done extensive research into healing times, and what I could reasonably expect as an outcome. He told us that it could take up to a year or better to heal completely, and in that regard, he was right. I'm sitting at 5 months post-op. Symptoms come & go...sometimes get them back for a few days or a few weeks & then they go away...it's slow going some days...but mostly I feel MUCH better. The best part is that I have put back some of the weight...I was really very concerned as you could look at me & I looked like I was a starvation victim...not so anymore. I still have no sensation in half my throat...but better than choking on everything. I can feel my feet...mostly what was causing me to walk like a drunk...though I still have pain in my legs...maybe a side-effect from not being able to walk, towards the end before surgery. I still have some days where my speech is funky....but that comes & goes.

I had no problems contacting him after surgery...I know that some patients have. He tells you that if you have complications call his office. He means it & on those occasions he calls back. If you have other symptoms, he refers you to your primary & has you go through the process. Not everything that occurs after surgery is surgery-related. I have heard of others having issues getting him to respond, but that didn't happen with me.

Prior to seeing him, I had been seen by four very prominent neurologists...the last one, an MS specialist with Marshfield, even made my primary see red (she most recently sent my surgical reports to him to prove how idiotic he was). We decided to see him, specifically, because of his ranking in the country, as being one of the top three in the country specializing in Chiari...and his location.

Would I recommend him to people...I already have...two poor, unfortunates who were seeing the same numbnut neurologist who ignored my symptoms & put me on Neurontin for a year...so I would forget that anything was wrong with me & keep quiet. Hope all of this helps your decision & hope you also get some help soon. Best wishes to you!


#13

I had my surgery at Henry Ford Hospital in Detroit back in 2001. My neurosurgeon was Dr. Seyfried, I believe he is still there. I was very happy with him and the surgery went well. The other Dr's at Henry Ford are also very good, I have heard only good things about the neurosurgeon's there. What part of MI do you live in? I live in Grand Rapids and there is a good neurosurgeon here in town as well.


#14

Dr. Teck Soo in the Detroit area did my decompression surgery. He is connected to the Providence Park hospital system.


#15

I had my decompression done 16 months ago by Dr. Teck Soo in the Providence system in Detroit. My surgery was an emergency surgery so I can't say much about his pre-surgery care but the surgery went great,


#16

I live in GR…who eould you recommend.


#17

In Grand Rapids I have seen the providers at Mercy Health Neurosurgery in Grand Rapids. http://mercyhealthneuro.com/programs-and-clinics/neurosurgery/team
They were very knowledgable about the Chiari. However, I have not had any surgery with them so I can’t give my opinion on that. I have also heard good things about Dr. Bryan Figueroa at Spectrum Health. Again, I have not seen him but he was also recommended by my general practitioner. If you are able to it likely wouldn’t hurt to get more than one opinion on your condition. I believe many of us feel like that is helpful since Chiari is not as well known as some other disorders. I again, really recommend the Drs. at Henry Ford in Detroit if you are seeking a second opinion or have the ability to travel over there to see one. I did feel really good about the care I received at Mercy with the neurosurgeons. I see a neurologist through the Hauenstein Neuroscience center at Mercy Health as well. Her name is Min Zhu if you are in need of regular Neurology. Let me know if you need help with anything else. I’ve made my rounds here in GR and can recommend other doctors and physical therapy,pain clinic etc! I wish you well!