Hello everyone. My name is Mary Janke and I am a senior radiologic technology student at NDSU in Fargo ND. I am writing my senior paper about MoyaMoya, I do not have the disease nor do I "know" anyone with it. I came across the term last October in our ER, when waiting to do a chest xray, I overheard someone tell the doctor she had it. Then, when I got spare time I looked it up. So that is how I got where I am now.
I was wondering if a any of you would be willing to answer some questions for me regaurding the disease and your experiences in the radiology departments. I would love answers from anyone, parents, patients, other family members. Please feel free to leave your answers as a post, or if you wish to write back via email, my address is mary.janke@ndsu.edu. The reason I am asking these questions is to get a better idea about the emotional background of patients, what we can do to better provide patient care to make your time with us better. I appreciate reading your touching stories and I am very glad I was able to come across this topic. I have found it very very interesting to learn about. Please feel free to only answer what you are comfortable with. I will not be using ANY names in my paper. I will only be making generalized statements. Thank you all!

Questions:
1. What is your initial reaction when getting diagnosed?
2. When you came into the radiology department for MRI, CT and angiography, how did you feel, what are your concerns?
3. Do you find undergoing these exams to be stressful?
4. How do you feel you were treated by the technologist?
5. What advice could you give to a technologist to make the experience better for you, if any?

Thank you again for your time, I appreciate any feedback.

I couldn't get you email adress to work.
Becky

May I try to email you first and see if it works then? Otherwise if you would like, my alternative email is mary.janke@meritcare.com

Thank you very much for trying!

Questions:
1. What is your initial reaction when getting diagnosed? What is Moyamoya? But I was missdiagnosed with a stroke caused from a disection, watershead, clot due to birth control fist.
2. When you came into the radiology department for MRI, CT and angiography, how did you feel, what are your concerns? I had all of the mentioned tests done in the hospital and the Doctors there explained everything thoughaly I had no concerns
3. Do you find undergoing these exams to be stressful? I am extreemly closterphobic so the MRI was very intence for me they have to give me a seditive for that test. the others did not bother me as much.
4. How do you feel you were treated by the technologist? The Technologst were wonderful anything I needed they answered or got for me.
5. What advice could you give to a technologist to make the experience better for you, if any? Make the rooms warmer. I was so cold for all of the exams. I needed like 3 oven toasted blankets. Just to be calm and explain thing troughaly.

I hope this helps!
Becky

Thank you very much! It does help, anything I can gather about patient care is absolutely wonderful. Thanks again.

Mary

Is it too late to answer the questions you have ?

As my Cara was just at Mercy Childrens Hospital in Kansas City for her MRI and MRA...shes now 11.  Had her surgeries July and August 2004 at the Mayo Clinic in Rochester.  We've lived in Phx AZ for most of her life. I have different stories relating to our experience with radiologists...and would be happy to share.  We now live in Sedalia, Missouri.

The latest...since she has recurring "Tia's" or they are spells of moyamoya....so the doctors do not really know Cara's history at Mercy's....I've been wanting to know if she has "grown" new arteries every since that surgery in 2004....long story short...I asked this new neuro if he can see from comparing the two old CD and new results...he needed to talk to the radiologist...as it didn't say in the report.    Well it turns out....because of Cara's mouth full of braces..they couldn't use as much power strength to see what they wanted to see.  So Im very disappointed...he even mentioned another surgery !!!! But then said he didn't want to elaborate yet...I mentioned I had a good website....he said oh those websites are scary...but anyway.    Now that doctor wants more information from both Phx Childrens Hosp and Mayo Clinic...we got long way to go to get there...Cara isn't having as many TIA's right now.   But it seems every time she has a MRA or MRI...I have to explain what moyamoya is.   This time they didn't even put her to sleep for her MRI and MRA...which was much better...she finally figured out how to lie still.

I can give you more information for your paper if you want.

Thanks,  Carol

Thank you for your posting. It is not to late, I will have my paper finalized on June 1st, hopefully! I have to give the speech June 12th, so I want to be all practiced up by then.  ;)

Hi MaryJ
 Questions:
  1. Shock, denial, and acceptance
  2. Scared and nervous
  3. Of course. Didn't know what I had.
  4. Was treated very well. But the technologist was familar with mm.
  5. Know what mm is.

Thanks everyone for your help with my paper. I really appreciate all of your feedback! Good luck and God Bless.

Mary