Badges (1)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (8)

Wed, Aug 28 8:40pm · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

I wish you could have been with me. When I asked him questions he said "Nope" when I said do you think my symptoms could be related he again said "Nope" I asked if another scan should be ordered since the tumor couldnt be visualized on my pituitary gland. He said Christmas…all done in less than 10 minutes. I am not sure what dismissed is but I did feel that way. I am hopeful that when visiting a MD they are open to questions and look you in the eye and not looking towards the door.

Wed, Aug 28 6:36pm · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

Well everyone I made it to Mayo. I am back in my hotel room holding back the tears…I had a neurology appt at 830am and neurosurgeon appt at 11am. I took the shuttle in early. I had a rough night got in late and only had a bag of pretzels for dinner so my headache is a 10 out of 10. The neurologist was nice. He spent an hour with me, showed me my scans and said he didnt recommend treatment. But gave me 6 meds (which I dont really want to take) I said I came all the way I might as well see neurosurgery (as I am hoping for more aggressive approach) stereo radiation gamma knife. Waited 1 and half hours…neuro surgeon spent less than 10 min. Said what did neuro reccomend? He is surgeon right? I tried to engage, he couldnt be bothered. Wouldnt even order scans when he said he couldnt even verify what kind of tumor was on my pituitary. I left on the verge of tears…after talking to family. I thought I have come a long way. I called the number to ask for a second opinion through the office. They seemed irritated and after 4 hours waiting in the hospital and not eating. They called me and scheduled me for 245pm tomorrow. Sad with my experience..I was hopeful. I am sure they marked my chart "that patient" you would think no one has ever asked for another opinion.

Sun, Aug 25 8:09pm · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

I want to thank you all for the tips and guidance! I fly in to MN on Tues. Just have to call for shuttle arrangements could'nt decide between the two from the airport to Mayo. Stayinv at and Bed and Breakfast since I am traveling alone…still nervous. But, that is what has to happen. My hubby is with my kids. Thanks again!

Sun, Jul 21 7:43pm · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

Oh my goodness! That is crazy that a so called professional would say that to you! It makes me so angry and sad for others that also have these types of experience.
I also have thought it might be pharma as all the doctors I have seen have given me more than 2 meds each, (none have worked) so I don't take them. I have children in the house and I don't need things lying around so I have gotten rid of all of them. I don't take anything for any other problems (knock wood) I was taking a supplement and apple cider vinegar tabs, but stopped all because I wasn't sure what was contributing to the headache so just on my maintainance med to avoid a seizure.
I am a vegetarian and we eat as much organic as we can, so I try to be healthy and live a natural lifestyle. I am hoping the Mayo Clinic can see me and not dismiss my concerns. I am willing to have treatment over pills thrown my way and dismissed that headaches are not caused by tumors, Thanks for the intersting read…and I am sorry that you were also treated the way you were.

Sun, Jul 21 6:19pm · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

Thank you for your reply! I thought I had a list…when I would start to ask my question within a minute I was told "No, headache is not a symtom of meniangiomas or adenomas or Rathkes Cleft Cysts" then one doctor at Northwestern when I asked about vision when his nurse was telling me I would be referred to a specialist 10 mins before he came in. He came back in the room and said you need to see an optometrist, held his hands over my eyes did a 30 second vision test and laughed after holding up no fingers saying "That was a trick question" He then came back in the room after walking out and said make sure you fill out my patient survey! So maybe I am asking the wrong question? I tried to sign up for the portal but it said I could not be verified…so I am not sure what I did wrong? Thanks, I will read through and see what I can find.

Sun, Jul 21 2:30pm · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

Hello, I know this is an older post but I would love some feedback. I have been disappointed as of late with my lack of healthcare. I was recently dx with some brain issues which are scary enough. I am a Mom of 4 and worked in the medical field all my life (not an RN). But, have been pretty healthy minus a few surgeries in the past. I started to do my research from evidence based websites with my condition and the last neuro I saw seemed to use that against me by saying "You are educated" I never try to act smarter than the MD because I am not. I just want to get better and feel better. Any advice how to connect with my Mayo appointment ahead of time? It isn't until August? Should I send a fax ahead of time saying who I am? I want to get better and get treated…all I have been given locally and not so locally is, here is pain meds and your headache isn't the cause of your brain issues. I want them to know me and see me and I am spending $ and scared I will leave another appointment disappointed and dismissed…

Sun, Jul 21 8:06am · New Patient appt in Minn soon for a Meniangioma (possibly 2) and RCC in Brain Tumor

Thank you so much for your replies. I keep setting my expectations low as each neuro I have met with say that my headaches are not a symptom of the meniangioma or cyst/adenoma. I don't want to just take meds, I want to get to the cause. I work a full-time job and have 4 kids from 17 to 8. I just am so tired and scared. Thanks again…I need to book my flight and hotel.

Sat, Jul 20 9:28pm · New Patient appt in Minn soon for a Meniangioma (possibly 2) and RCC in Brain Tumor

Hi! I am new here and was diagnosed with a meningioma (possibly 2 from what the most recent neuro told me) and a possible Rathke Cleft Cyst or adenoma (according to my other neuro). I live in Indiana and have had a migraine since 5/9 and ringing in my ears since 5/24. I saw my local doc who sent me for the CT to rule out a brain bleed or issue then they found the one issue…sent for the MRI, found 1 possibly two more. I still have the headache and all the MD's here is want to give me pain meds and tell me that the other don't cause headaches. Even when ding research, it shows that meningiomas, RCC, and adenomas all can cause headaches. I even traveled to Northwestern in Chicago to be dismissed and rushed by a neurosurgeon there. I am tired, frustrated and in pain. My appointment is at Mayo in August. I am traveling by myself and I have 4 kids. I am scared I am spending all this money on travel and they will say the same, headaches are not a symptom of these "tumors". Thanks for any advice. (I have scheduled three days, Wed-Friday) I have no one to talk to and all people can say is how is your headache? I haven't shared the dx yet…