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CindyRPT

Dr. McC WANTS TO PUBLISH MY CASE!

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Dr McC is the most amazing doctor on earth! I sent him an e-mail and within 10 minutes , he e-mailed me back! Unbelievable! He gave me some great advice regarding my case and he he told me that he wants to publish a case study about me in one of the NeuroSurgical Journals! Wow, I'm going to be published!! Hey SusanM & Melanie, I get to be like you guys!! :) I guess it is one perk we get for going through all this carp, huh! :P Here's my e-mail I sent him & just below is Dr. McC's reply.

 

Hi Dr. McCutcheon,

 

Cindy Wilson here! Vanderbilt received your order for the CT with metrazamine injection to determine if I have a CSF leak. I will be having it on Friday, the 25th.

 

One question...during our initial consultation, we discussed the fact that I had a diagnosis of pseudotumor cerebri prior to my pituitary surgery. You had hypothesized that the excess steroids from the Cushing's could have possibly been actually "treating" the pseudotumor. When I cycled low, that's when the pseudotumor symptoms would occur. You had said that you were concerned it could return once I am cured.

 

Now that I am cured, I have started having headaches and clear liquid began leaking from the nostrils (left >right) During the course of a day, the more leaking I have, the less my headaches are. The less I leak, the more painful the headaches become. Vertical diplopia continues off & on, no more ptosis, but right eye is considerably weaker than the left.

 

They said that if they find a leak, they would do surgery there. Is there anything that needs to be addressed regarding the possibility of the pseudotumor being a complicating factor in my case? Lumbar shunt should be considered if I have a high opening pressure? My OP was 19 (upper end of norm) when I had all the symptoms before.

 

Thank you so much. I have bragged on you many times to other Cushing's patients. Thank you for taking such good care of me!!!

 

Sincerely,

Cindy

 

Here's his reply.....

 

Dear Cindy,

Thanks for your message with its very cogent questions about pseudotumor....I think that if a leak is found, then to fix it might very well need a lumboperitoneal shunt, either alone or in combination with a transsphenoidal packing of the sphenoid sinus. Given the overall story I think it is pretty likely they will find a leak (since pseudotumor with its associated high pressures would promote it).

 

If a standard transsphenoidal repair of leak is done without addressing the pseudotumor issue, the leak will have more chance to recur. I would suggest that it would be a good idea to work out your pseudotumor status before treatment decisions are made i.e. what is the opening pressure now? This would need another lumbar puncture to determine.

 

Please feel free to share these thoughts with anyone of your MDs who might benefit from reading them. If you need to come back to Houston to get things done I'm happy to have you although it is far from home and family - and these are basic things that hopefully they can handle there-

Best regards,

I'm

 

PS

I would like to write a report of your case for one of our neurosurgical journals-so once you are past all this, I might ask you to give me a summary of events to help me put that together-hope that is OK.

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YES! I have a firm belief that the more our doctors publish about us, the better those who come after us will be diagnosed and treated. I'm glad you are willing, Cindy. I know SusanM's case has helped me tremendously. (Thank you, Susan!)

 

XOXO

Robin

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Way to go Cindy!! What a wonderful man IMCC is to us. I'm truly sorry for all that you are dealing with, but thankful that you are willing to share the information for other cushies. Who knows, we question God "WHY"! Maybe this is your why!!!

 

Love you,

Lorri

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Awesome! I've never met him, only had a 2nd opinion on my mri, but I love him!!! Good luck kiddo! Thank God you are so well versed in all of this!

 

 

I hope all goes well for you!

 

Love,

Mar

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Very cool. Hope they get your like fixed you got Cushies to meet you know.

I don't know about SusanM's story. Where can I find it?

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Cindy that is awesome news. You'll be helping others for years and years to come! :.)

 

And what an incredible email. I am always impressed how thorough he is and so welcoming in his tone.

 

I so hope all this is resolved ASAP. I know it is awful to have extra stuff post op. I managed to go hyperthyroid with Graves Disease and that really hampered my recovery. Seems that all of us end up having something to tackle post op alright. But I can tell you now I am starting to do lots better and I am seeing a big difference. I hope it is like this for you too... you get all this behind you quick and start feeling better.

 

xoxoxo, Lisa E.

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Alright! :cheezy:

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yeah cindy! great news! I love me some IMCC, too!OH, I missed the part about coming back to Houston.I am here now! Come see me, Cindy! I live about 5 miles from the Hilton hotel where you stayed before!Hugs,Melissa

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Hooray for you, Cindy, and for Dr. McC! It's my personal belief that, while painful to share our stories, it's the best way to educate and empower others fighting this battle. What a blessing you both are!!

 

Love and Hugs,

 

Heather

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I love that man! Thanks for sharing, when I had a leak after surgery, one of the MDA doctors mentioned a shunt as a possible treatment but I didn't understand it until this post!

 

Hope all goes great with you on this!

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Yeah!!!! Now we can say, "we knew her when"!!!!! I'm going to need an autographed copy from you!!

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Wow Cindy,

That is great news. To find a smart, savvy and kind Dr. all in one is so rare. I agree with the rest of the comments about helping others coming along behind us. This has got to be one of the reasons why we have to go through this, so we can help others. I hope you get your leak repaired and get on to living and feeling better. Oh, and finding the article on SusanM, I think you would have to go to Dr. F's website and find some of his articles or writings. Does anybody have any other ideas? Anyway, Congratulations!! Love, Sallyt

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That's really exciting news, Cindy! I'm sorry that you have to be a zebra -- but you might as well be a famous one. :cheezy:

 

My respect for Dr. McC grows with each passing day and interaction that he has with us!

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Bravo Cindy! Way to be persistant, and getting the right resources. Cool about the med journal write-up, maybe "sum of dem smart fellas kin lern sumthin!" Bravo again! I hope the locals don't take too much offense....

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He's great, isn't he?

 

I'm so excited that your story will be out there in the medical communicty, Cindy! It will help so many.

 

Sorry about the continued csf leak issue, though!

 

Hugs,

Linda

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Wow, Cindy! That is so wonderful! I'll bet it makes you feel like all the trouble you've had with this disease may be somewhat worth it, if you know you may be helping others get better.

 

I'm totally impressed with Dr.McC. I just sent my films to him, and am considering him as a doctor as soon as we're able to go that route. Any man who is willing to give so generously of his time, is worth driving/flying the extra 1000 miles for!

 

I hope things heal up quickly so you can get a shining report out to the great doctor. :(

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Cindy,

That is great news about the article. Way to go! You'll do great.

Hoping you are feeling better soon and you can get the CSF leak under control.

Kate G

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Wow Cindy, I always knew you were special!!!

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Listen to you all technical!! You sure do know your stuff!

 

That's really neat that IMCC wants to share your story in hopes of educating other docs. As far as the Cushing's testing goes (I don't know about all that pseudotumor shtuff..:)), you have a very relatable story, so hopefully hearing yours will spark these doctors brains and get them into Cushing's mode.. :P

 

I am very sorry to hear about your possible CSF leak and pseudotumor issues. I saw your post awhile ago about a possible CSF leak (very animated as usual :P), and was just wondering about you and how that played out. I hope they get you figured out and fixed soon!! :)

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Cindy, Cindy, Cindy,,,my dear. You are something! I spent 6 years in graduate school and $130,000 in student loans and couldn't get even one of my papers published!!! Do you know how hard it is to get published? Always knew you were awesome. Love ya, Stacey

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Yay Cindy!!! Another "med-celeb" to add to the Cushy ranks lol! :lol:

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