My visit with Dr. Heffez

[shanmomof3]

Just thought i would let everyone know how my appt went and some interesting things i found out. I dont have syringomylia or tethered cord. My chiari herniation is relatively small as far as how far down it goes but the way the tonsils are sitting in the foramean magnum is like a cork ine a bottle which is blocking the csf flow. The other problem in the same spot is that my right artery is A LOT larger than the left (he said this is found in a lot of people and is normally not a big deal) but because the tonsils are stuffed in the opening as well that artery is "thumping" my brain stem everytime my heart beats. I also have disk problems at C4/C5 and C5/C6 but we're not gonna deal with that right now although it may need surgery later. So, dr. H has suggested surgery ... duraplasty decompression with bovine patch. One of the things that impressed my DH was that dr H told us the decision to have surgery but if it was his wife or daughter he would insist they have the surgery. I'm still trying to decide when but most likely i'm gonna wait until the end of may or first of june. So that is where i stand now. I'm sure i've forgotten something lol so i'll post it when i remember ;~D Shannon

[dyinginpain]

Hi! I just wanted to add my 2 cents here! Dr Haffez told me the same thing about the MRI-just didn't remember the words lol.  I remembered it as my brain is stuffed into the opening anyways he said that the MRI they do is a special one to see that cross cut that regular MRIs don't do so even teaching others how to read it wouldn't help is my understanding.  They would have to have the right equipment &/or test.

[rod44]

Hi Shannon, I am happy for you that things went well with Dr H. Another step closer to what hopefully will be a symptom free life.

Ray

[*Stormy*]

I wonder if he makes calls as far as Canada...lol . I have a few doctors that need to eat their words....

[northernstarmn]

when i told DrH about what one of the NS's here said he got ticked and wanted to contact her and let her know the truth behind Chiari and MRI's i dont know if he did or not LOL...

[*Stormy*]

I know...I find it so amazing that that is not checked sooner!! My NS was so surprised that all that time..no one checked! That's why I tell everyone..if in doubt, check to see if you have one..it's easy enough to do yourself!!

[shanmomof3]

I completely agree selma! Oh, and carolyn .... I have NO gag reflex! Like he put the swab ALL the way back and i just sat there lol                     It was also very interesting to find out things that i couldn't do but didnt realize i couldn't do lol like put one foot in front of the other!

[selmaS]

Like I said  with chiari size doesn't always dictate what is going on or even if u have symptoms.....the old standards r just that the old standards and the med schools need to update and increase time spent in school on this condition with the med students......
JMHO....lol.....

[shanmomof3]

oh selma, dr H asked about the other drs i have seen and when i told him the last one said he didnt think chiari was my problem and he was just gonna treat me for miagraines, dr H just looked down and shook his head! That was a Huge conformation for me! THAT made me smile! ;~)   And thanks barb! We know how to deal with DH and the plane now .... 1 xanax Lol

[Spaceystac]

That is so good to hear!!! Not good about the artery throbbing on your brain stem though, but im sure that answered a lot of questions for you.  It is so reassuring knowing that there are still good doctors out there.  You would think reading an MRI would be a very refined, and accurate thing. But the truth is, every eye sees things different and thats not good. There shouldn't be misreadings. It is a failure in the system, training should be the same across the board.    
  Good luck with your surgery, it sounds like you are in great hands!!!

[*Stormy*]

Yes... I remember that moment too...of having someone finally explain and make others understand!! It was of complete an total relief for me!! I'm really really happy for you that you have made some progress!!

Take care
CArolyn

[shanmomof3]

Thanks everybody! Wolf, its funny you said smile, frown, or what .... I went in expecting him to say surgery but then when he did i wasn't sure how to deal with it lol We left and my DH looked at me and said What's wrong you look like you're gonna cry! I think part of me was just relieved someone understood and the other part was going "OH NO brain surgery!" I know now why people say after they schedule the surgery they want to call and cancel it! LOL

[mikeysmom1995]

Hey Shannon,
I am certainly glad that things went well for you. Perservering through the Yahoos as your husband says is no easy task, but you did it, and now with many prayers you will get some relief with Dr. H. I will continue to pray for you and your family, and I am happy that your hubby got through the flight okay.
Barb :)

[selmaS]

Hi Shannon...I am so glad u now will get the understanding and support for ur DH that u need. And that means u can both decide how to proceed.It is not something u want to decide all alone.

I am glad Dr H was able to see what and where ur issues lie...and that is the problem with a NS looking at the size and saying u do not qualify for surgery bcuz they do not recognize it as chiari unless it is a certain size....nutz...

Neway I am happy to know u have an idea of what is going on and what u may want to do for treatment.

Good luck

Godspeed
"selma"

[northernstarmn]

I really like Dr.H when i seen him he explained EVERY thing to me and then simplified the surgery i didnt want too many details but he did go in detail with my son and husband..LOL... I am glad you had a good visit with him and he helpt hubby understand...like Wolf said its hard for others to understand what we are going through---and like i told ppl on the outside shell of my being I look perfectly normal and sane however its the inside of me reeking havvock. lol

take care
and they will work with you on dates and things
and if you have more questions feel free to email Renee

[ChiariWolf]

:-) I dunno do you smile, frown or what??? It really is hard for someone who isn't feeling what we feel to understand. Especially when they hear these other 'yahoos' dismissing things and making comments like "This is nothing more than an incidental finding that you've had since birth." usually followed by a barage of tests and then the follow up comments "Well we can't find anything wrong with you." or "Are you sure maybe your not just a little depressed and this is not as bad as you think?" And of course all the time our mates are listening, they don't feel the things we do and these professionals are in so many words or directly saying 'it's not there'... Yeah, it does make you smile when the one you love finally gets confirmation that we are not crazy. But then you begin to wish they didn't know so they wouldn't worry about it.

But hey, I'm happy for you. I can feel your smile with your DHs words "yahoos"... ahh!

Wolf

[zygy]

Hello :)  That is wonderful the appointment went so well.  My NS apt. also helped my husband to understand what is going on, it makes things so much better to have them hear it too!!!  I also have a minimal herniation (6mm) but you can see in the other MRI view all of the crowding.  I think this is valuable information for people to hear, you need to be looking at all views of the MRI to see what it is really doing back there :)  I included this view in my profile pics, it is very interesting to figure out these MRI's... lots of cool things to see!

[shanmomof3]

yeah i forgot to tell yall that dr H said the side picture of the MRI we always look at to see how large the herniation is .... He doesn't really look at that. What he looks at is the cross section going out of the brain at the foramean magnum because that is where the blockage mainly occurs. After we left my DH (who has kinda doubted me up until now and believed other docs that the chiari was not my problem) said "this man needs to go teach those other yahoos how to read MRIs and what they are looking for!" I had to laugh! It was SO funny to me, but SO happy he finally understood! :~)

[opinmin]

I have the same disks problem as you as well as possible Chiari's.  I will see my NS in March.  

Thank you for sharing your visit experience; helpful to me.