Dr. Tew

[bledpub]

I have an appointment with Dr. Tew in a few weeks. Has anyone seen him? I know he's well respected in this field but I'm interestedf in personal experiences. I'm a little nervous to see him since my herniation isn't very long. (I've uploaded pix of my MRIs on my profile. It's not long but it's kind of thick.) I'm hoping he doesn't brush me off.

[bledpub]

I completely agree with this.

[bookworm79]

CW, not offensive to me.  So true.  

Bled - I've come to realize people with horrible herniations sometimes don't have symptoms - whereas I have 6 mm and it's affected my whole life.  We're not a one size fits all and that is what is so hard with these doctors who don't know enough.  I was so glad I found this forum.  It's not the size, it's not the amount of blockage, it's not this or that...it all depends on the person.  Basically, no matter the size etc, if it effects the quality of your life in any way shape or form....it's an issue.  End of story.  Doctors need to be open to that.

[ChiariWolf]

The key words in that statement were 'old textbooks'. Research helps us to see that symptoms should be the trigger not any measurement. Dr Oro has at least one article posted online supporting this idea. Former Dr Di also supported this idea.

In my case there was minimal herniation but the entire cerebellum was kind of swished and pushed down onto the spinal canal thereby blocking flow.

If any Dr wants to stick to old textbooks and some redundant theory to doctor human beings??? You know- ever changing and ever different people... Well personally I would hit the door as fast as I can. We are all individual imperfect humans, we do not fit into a mold that can have blatant label affixed to it. We really MUST stand and make the nureological community see that this is real and that will not accept cookie cutter non-Dix like that.

Sorry, if my strong opinions offend anyone here reading. However, I firmly believe my own life would be better today if someone had taught me years ago what I know now. That being 'WE are the custmer' if a doctor can not do the work needed to fill our needs- than you FIRE him as fast or faster than you would fire your. House keeper that was caught stealing from you! Why? Because that Dr is stealing years of your life by pretending to know what he doesn't know rather getting off their duff to find an answer for you. Their job as your employee is to serve you not to see how quickly they can bill you.

Does not always mean surgery is answer either. But it needs to an informed descion not a 'oh, yeah, back 80 years ago this was documented so we will stick to that.

Wow, no sleep again.... Probably should delete this...... Nah sleep or no these JMO

CW

[bledpub]

I've been taking the neurontin which has helped in that I can at least leave the house but it's just taking the edge off. I'm still in a lot of pain. Is he going to do anything for you? And may I be nosy and ask what your herniation size is? (I know that it's the thickness and flow that are the main indicators, but one NS has already turned me away because mine didn't fit the 5mm from the old text books so l like to ask.)

[bookworm79]

They got my info on a Wednesday, called me on a Thursday, had me in the office the following Wednesday.  No no medicine.  He seemed to shake his head and acknowledge that most pain killers, neuro drugs etc, don't really work for Chiari patients the way they do other migraine patients...at least that is how it seemed when I told him that NONE of the million drugs I'd been described helped.

[bledpub]

That's awesome! I'm glad to hear it. How long was it between the referral and getting an appointment with him? Did he recommend anything for you? Right now I am on Neurontin. It has helped a little with the pain in that I am at least able to leave the house once again but I still can't drive, lift my baby, or hear people very well.

[bookworm79]

I saw Dr. Tew several weeks ago and had a positive experience with him.  He spent almost an hour with me one on one , answering lots of questions and asking lots of questions, which is something I can't say anyone else ever did with this Chiari journey.

[selmaS]

  We all need validation that this is more then something we made up...and to be taken seriously....I know how that felt to finally find a Dr that said yes, this is y u feel like that...and this is what we can try....

Sorry I mis understood what y were trying to say, but I do get ur concerns.

  

[bledpub]

My comment wasn't because I am seeking surgery. It was because he said that the herniation size wasn't significant enough to be causing problems. With two young children I am not exactly jumping at the idea of having my brain hacked open. It would be nice, though, to be taken seriously.

[selmaS]

  U should not be seeking a NS's advice in hopes of being told surgery is ur only option...many of the top chiari specialists will try PT and pain management b4 they consider surgery and some will even do more testing especially if ur herniation does not look like it is causing an obstruction.

Be patient and open to what they have to say....surgery is not a cure and many have had adverse affects post op....

  So, again be open.

[bledpub]

Thank you. He runs a new Chiari Center at the Mayfield Clinic in southern Ohio. I have high hopes for him. I have a friend who goes to him, though, for Chiari and she said, "Oh, hes great. And he doesn't just do surgery for the heck of it either. I heard him tell someone that their herniation wasn't significant enough to be causing her problems so he's good to get advice from." That piece of information actually scared me, instead of encouraging me like she thought it would.

[linnielou232]

I hope the same for you.  I went to a universaty and they actually brushed me off saying it was considered surgery canidate.  It wasn't until I found a true NS who understood and as for mine also it was not the lenght, but the width that was bothering me and I didn't ahve a choice in having surgery.  Live was awful, but much better now since I finally found someone who would listen.  Wish you the best in your appt.  I don't know the NS, but hope they are the right ones for you.