UCSF dr a huge disappointment

[Jennyfoo]

Ugh! He was very nice, spent over 1/2 hour with me, after his FNP spent 1/2 hour with me too. Basically, he said he doens't think chiari is what's causing my symptoms. He says my herniation is borderline and doesn't even fit true criteria for chiari diagnosis because it's not 5 mm. UGH again. He said "syrinxes ALWAYS form in the cervical region, never in the thoracic."(not true). Another ugh! I sincerely think I may have on in my thoracic. He also said that chiari never causes optic nerve swelling(not true). Ugh! He said that chiari always presents with elongated tonsils that point downward(not true). UGH! He basically said that he doesn't see any need for a flow study because he sees perfectly fine flow around the tonsils. I asked about elsewhere, like at the back of the head, and he said that didn't matter. He said a thoracic MRI would be a waste of time.

He says he'd suspect pseudotumor cerebri if I do indeed have optic nerve swelling. He's not familiar with the optic nerve mapping that my opthamologist uses. He's referring me to another neurologist to do an LP to see if it's pseudotumor. I'm scared to death of having an LP done because of the chiari and because my entire spine is inflamed due to my autoimmune arthritis(spondylitis).

So, I got nowhere with this dr. He was obviously not up to date on newer research about chiari. I think my next step is to send my films in to be looked at by a REAL chiari specialist. Who looks at them for free? LOL! Please let me know.

I'm not 100% sure that my symptoms are being caused by chiari of course, but I'm not willing to let it slide as just an incidental finding, especially since my symptoms fit to a T, and the headache type I have. I guess I'll see another neurologist and get an LP to be ckecked for pseudotumor, but I'm really not happy about that one bit.

This whole thing stinks! I'm so sick and tired of getting nowhere. I waited months to get into this dr at the recommendation of many medical professionals to just be disappointed. This is months that I've been in debilitating pain. I'm so sick of this all!

[angelRN]

Thanks Selma, I'll definitely do that!  I do know that the NS I'm considering has only been at UCSF for the last year and a half, so I'm relieved about that at least!

[selmaS]

  Hi this member has not posted in some time, you can send a PM ( private message) which will generate an e-mail letting her know someone is trying to make contact.

[angelRN]

Hi Jenny,

I hope that you resolved your CM issues!  Sounds like a nightmare...and one that I am trying to avoid.  This post is several years old, so I'm not even sure if you will see this....

Our situations sound somewhat similar, and I'm hoping you can possibly save me frustration and money.  I don't see where you posted which doctor at UCSF that you saw.  May I ask who it was?  I have been trying to find a doctor at UCSF or Stanford.

My UCSF results were disaapointing....I found a Dr. Tarun Aroro who some say do the surgery and seems to know his stuff.  His office is definitely not 100% dedecated to CM though.  When I referred to UCSF by my neurologist, the gal who coordinated the referral recommended a Dr. Philip Theodosopoulos.

Would you mind telling me (even via private message) who you had bad and/or good experience with at UCSF, or anywhere else in Northern California?

Thanks so much!

[Daniel M Prevedello, MD]

Hi Jennyfoo,
I can look at your films free of charge if you want.
I do Surgery for Chiari.
Most of your symptoms are consistent.

[pamk5]

Sorry you are going thru this.  I have been there as well.  I went to see a doc who treats some CM patients but doesnt specialize and it went something like yours.  Him trying to convince me my herniation wasnt causing my symptoms but we can do surgery if you really want it?? Huh?  I have an 8mm herniation and partial blockage of CSF flow posteriorly.  He also told me surgery would cure me?  Huh again?  So it is comical when you know more than the doc does but also frustrating and I had my dad with me who I had to educate that this doc didnt know what he was talking about.  So I know how you feel there too.  I finally made it to a true specialist and Selma is right the validation is priceless.  Keep pushing, travel if you need to.  Ask your insurance company to consider your visit to a specialist in network since you have a rare condition.  Mine did it for me, so it is possible.  


Good luck to you... I hope you find the answers you need.  

Pam

[Brooklynn07]

Sounds like the comments I got from doctors! I know Dr. Heffez looks at films for free. He is at the Wisconsin Chiari Center. If you go to their website it tells you how to send them.

I know it is really frusterating, but keep looking, you will find answers!

[selmaS]

I know...I am always saying it is not the size of the herniation....but, unfortunately too many drs r not going to school to get the updated info...and do not care to learn.

I feel if ur patient has symptoms, and  it fits, even tho u were taught differently, y not at least consider it?

Well that would be wonderful....u have a dx of chiari already, correct?.....Dr Oro does get over booked and I have heard it  can be hard to get in unless u have a dx already....not sure how it works...so please let us know : )

He is a very nice man,....I spoke with him at a conference and was very fond of him as a person.,..only wish I lived closer....but, I was lucky to live close enuff to another very good group of drs....

Hang in there.

Merry Christmas

"selma"

[Jennyfoo]

What's crazy is I even pointed out on my films the obvious overcrowding at the cerebellum, and he just dismissed it, saying it only mattered around the tonsils.

".....onsillar descent is not a valid means of diagnosing CMI. The "redefinition" of CMI must be kept in mind - CMI is not a condition that is defined by the level of tonsillar descent. It is defined by a lack of CSF flow posterior to the cerebellum."

http://www.chiarione.org/anatomy.html
When looking at my films and comparing them to a normal brain, I have zero space behind the cerebellum. My films are worse: more blockage than the MRI scan shown in the link, who was a patient treated at TCI.

I'm thinking of sending my films to dr Oro. If i can convince my insurance to cover consult and possible treatment with dr Oro, then at least, I have a free place to stay that's not too far from his office: a good childhood friend's home.

[selmaS]

I have to tell u Jenny this is the royal chiari runaround like Ray said...I went thru it as well I went to several NS's  that I was referred to  that were to be chiari drs...well, they treat it...well after that I knew I needed a dr that only treats chiari in order to get real answers.

U can send ur info to TCI in NY...they do not charge to review, but r expensive if u go to them and many times will not see u if after reviewing ur films feel u r not someone they can help.....a few do go to the office and do not have surgery....but, it is not something u do if they feel u do not have chiari....if they want to see u , then u deff have something going on.


I know Dr Oro may charge like 40 dollars....depending on where u live u just might want to call a dr near u to find out what their practice on this is.

I know this is frustrating, but once u get to the right dr, that validation is priceless.

Hang in there : )
"selma"

[Jennyfoo]

I knew that once he pulled out my MRI and a piece of paper to lay across it to show that my herniation is not over 5 mm, that he was not a good dr for Chiari. His antiquated ideas nearly had me laughing, especially the thing about syrinxes never developing outside of the cervical region, and that syringes can't develop over months, but take YEARS to develop even a small one.

Ugh!

Worst thing is my sister, who said, "I'm sure the dr knows what he's talking about. Give this up. Sometimes Internet research can lead to more problems than good:" she has no clue. Has she read case-studies, surgery reports, and doctor research papers that show that this dr was completely misinformed and doesn't know Chiari?

[rod44]

So sorry you are getting the royal Chiari runaround. I dont like the idea of an LP for someone with CM, borderline or not. Can you talk to a Chiari Dr first. A CM NS is your best bet.

Ray