Anyone had Surgery with Dr. Heffez? -Help!

[fblea]

Hello all,
   I went to Milwaukee back in early June to get evaluated by Dr. Heffez.  To make a long story short, after having me wear a neck collar (to eliminate my reversed lordosis as a cause of my symptoms) with no positive results, he is now suggesting I have the decompression surgery (he says I have significant crowding at the brainstem and artery constriction, etc.).  Overall I trusted him and thought he did a pretty thorough job with the eval, but I think my hesitation is due to the other opinion I received before his.  
    In April, I saw Dr. Oro who at first told me that I didn't have a chiari problem at all, then said it was too minimal to be causing my symptoms, and then said that my neck "wouldn't tolerate" a decompression surgery anyway even if he thought I needed it.  He told me to get PT for my neck and to take Neurontin and basically pushed me out the door with a "have a nice life" type of attitude after only evaluating me for about 15 minutes.  Needless to say, I was pretty disappointed an upset about it all at the time as I'd heard such great things about him.  That is when I went to Heffez for another opinion as I didn't quite buy what Dr. Oro said.
   I'm very confused as Dr. Heffez and Dr. Oro gave me completely different diagnoses and even measured my MRI's very differently (2mm vs. 7mm).  I really don't know what to think.  I felt as though Dr. Oro didn't really want to help at all but on the other hand, it seems that many of the Chiari type specialty clinics are getting a rap for pushing sometimes unnecessary surgery on to people (all the problems TCI seemed to face).  
  I guess at the end of the day, I am miserable and am desperate enough to try anything, but am terrified that I will have the surgery and actually end up worse.  Has anyone had anything like this where two "chiari specialists" have told them such conflicting things?  Also - can anyone here share their Dr. Heffez post-surgery status/experiences?
  I am supposed to call and get this scheduled soon, but I guess I need some reassurance that I'm not making a big mistake...  Thanks in advance for any and all input!  : )

[selmaS]

  Hi and welcome to the Chiari forum.

We do not recommend Drs, but will help you learn about Chiari and we do have a list of Drs other members have used for you to use to research the Drs.

Keep in mind the firsts question you need to ask one of these Drs is do they treat children as not all do....next...does she require surgery at this point....ie- does she have a CSF obstruction, a syrinx...other related conditions.....

And of course- how many Chiari patients does this Dr see i a year, ,month, ,week,,,,?

I will bump the thread up with a link to the list of Drs.

[Snakecharmer45]

Are there any Chiairi specialists in Kansas one would highly recommend for my six year old grand daughter?

[kristy12]

I have heard that dr. Oro is quite restrictive if it comes to the surgery. It doesn't really matter your herniation is 2 or 7 mm although the difference is quite amazing I would say especially that it was measured by 2 so called chiari experts. On the other hand even if you are 7 mm, you can still be asymptomatic.
There are also other aspects. People that have underlying conditions tend to show off more symptoms but still it is better to treat all the problems instead of saying that your chiari is a bogus and your real problems is CFS for example.  

[jenshead]

TCI is of course an option.  What about a university based NS in New Mexico (one on your insurance)?  Even if s/he isn't known for treating Chiari, it might be worth a try since it's so much cheaper.  This is what my neurologist is recommending for me...who knows how it will go.  Since he knows the NS team at the local university, he was able to recommend someone who specializes in the base of the skull.

Tough decision for sure..I wish I could help you more!

[lydelia]

You are not being a crazy person. This surgery is risky and is not something to be undertaken lightly. I am sorry that you have gone so long and been in so much pain. I hope that you get some solid answers at your next appointment. Keep us posted.

[fblea]

I've seen just about every  type of specialist over the last twelve years.  I've been diagnosed with everything from R.A., fibro, IBS, low blood pressure, hypoglycemia, cystitis, etc. and those were explanations that I was willing to accept and live with until about a year ago.  The headaches, joint pain and fatigue matched up with the auto-immune type of diagnosis until I started losing strength and use of my right arm and leg.  When my rheumatologist saw these changes he ordered MRI's of my neck and back.  The C-Spine showed a 5-6mm Chiari ("boderline" chiari according to the Radiologist).  Because I started having drop attacks, urinary problems and am walking with a cane on some days, I decided to  consider surgery (thus the trip to see Dr. Oro initially).  I don't have a syrinx or apnea or anything super serious like that as far as I know.  I guess my real concern is that I could continue to lose what function I have left in my arms and legs if I wait too long. Dr. Heffez told me he couldn't say how much worse I'd get but did say he knew I would never get better on my own.  
  I live in New Mexico and there aren't any reputable NS out here so my only option I think is to get a third opinion at TCI - which is not covered by insurance and would be a pretty pricey trip.  I guess the cost would be worth it since I'm so confused right now that I can't make any decision with any confidence since two renowned Chiari doctors have given me day and night diagnosis/recommendations.  Uggh.  I appreciate all of the input - I think my gut was telling me to just find a way to shell out the dough for the trip to TCI, but I needed some reassurance that I wasn't just being a crazy person!  

[jenshead]

I agree with lydelia...get a 3rd opinion.  The rest of what I have to say is 100% my opinion and I know some will disagree but here goes:

What other doctors have you seen?  Did they have any alternate ideas to Chiari at all?  If you are only looking for CM, eventually you're going to find it.  If you've been to every other kind of doctor and gotten 0 answers (not even a remote possibility!), then I definitely understand your dilemma.

Did Dr. Heffez say you should be in a hurry to get the surgery done?  Did he say there are any risks to waiting (sleep apnea, heart trouble, syrinx)?  If not, please don't rush into it.  You should feel confident in your decision.  Brain surgery, no matter how simple, is not something to be taken lightly.  Too many people have this surgery, feel better for a little while, and then all their symptoms come back.

I just got back from seeing Dr. Heffez.  He's the first person to say CM is a good explanation of my symptoms, and no one else has had a clue.  It's been 2 years of constant pain and I'm still hesitant!  I'm going to a 3rd NS soon...if at least one doctor agrees with him, I will feel so much better.

[lydelia]

While I have not had any experiences with Dr. Oro or Dr. Heffez, what you are saying concerns me too. Two, touted and well respected Chiari specialists, giving such different opinions is nerve wracking. For my part, I would tend to lean more toward what Dr. Heffez said, since "You're Chiari can't be causing that," by Dr. Oro seems like a very uneducated, and really odd remark for someone who specializes in Chiari. My advice would be to get a third opinion, as much as that is going to suck, having to wait again to see what someone else says, when you have already seen two people.

I am sorry that this happened to you, and I want to say again, that I think a third opinion is your best option.