New Patient appt in Minn soon for a Meniangioma (possibly 2) and RCC

Posted by cacoon6 @cacoon6, Sat, Jul 20 9:28pm

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…

I have one meningioma that was treated with Gamma Knife surgery Jan. 2019. I just went for my 6 month MRI and follow-up with my neuro-surgeon and the laser has stopped the meningioma from growing. If possible, I would ask about this type of surgery as it is done by using lasers and no cutting or anesthesia. Plus you only have discomfort for a day or two. My neuro-surgeon told me that I would know if it started growing again as I would have a really bad headache- so you are right in thinking they are causing the headaches. While I had the surgery, the woman in the room with me had multiple meningioma's and was having the Gamma surgery. When you see your doctor, ask about it. Good luck. Joan

Liked by Tigerlilly, cacoon6

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Yikes! I'm so sorry for not only your dx, but for the lack of real care you have gotten in IN. Be encouraged that Mayo should be different. I went 12 years ago for a brain tumor that 2 neurosurgeons in MI said was inoperable. Mayo docs not only were willing/able to operate, but also able to diagnose accurately after operating. I've been symptom free since then. I would strongly encourage you to try and find someone to go with you though. Although there are lots of volunteers around Mayo to help you find things, it is a pretty big, and sometimes scary place.

Liked by cacoon6

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@jvertalka

Yikes! I'm so sorry for not only your dx, but for the lack of real care you have gotten in IN. Be encouraged that Mayo should be different. I went 12 years ago for a brain tumor that 2 neurosurgeons in MI said was inoperable. Mayo docs not only were willing/able to operate, but also able to diagnose accurately after operating. I've been symptom free since then. I would strongly encourage you to try and find someone to go with you though. Although there are lots of volunteers around Mayo to help you find things, it is a pretty big, and sometimes scary place.

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Thank you ♥️

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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.

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@cacoon6

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.

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Hi @cacoon6, I'm tagging @IndianaScott on this discussion. Like you, he and his wife traveled from Indiana to Mayo in Minnesota to be treated for brain tumor. He may have some tips and thoughts for you.

You may also be interested in these discussions:
– Multiple meningioma brain tumors https://connect.mayoclinic.org/discussion/brain-tumors/
– Watching a Meningioma Brain Tumor https://connect.mayoclinic.org/discussion/watching-a-meningioma-brain-tumor/
– Mayo Appointments: Brain Tumor 48-hour Access Program https://connect.mayoclinic.org/discussion/mayo-appointments/
– Gamma Knife Radio Surgery for Meningioma https://connect.mayoclinic.org/discussion/gamma-knife-radio-surgery-for-meningioma/

Cacoon, do you know about the Concierge Services that Mayo Clinic has? It is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

They can also talk to you about how to make reservations when you don't know how long you'll be there.

Liked by Lindajean

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Colleen, Does Mayo still have a special # for the airline reservation that makes it easy to change if your stay needs to be extended or shortened? That was always such a benefit to me…..is it part of the concierge service? IF so, that may be helpful to @cacoon6

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@lindajean

Colleen, Does Mayo still have a special # for the airline reservation that makes it easy to change if your stay needs to be extended or shortened? That was always such a benefit to me…..is it part of the concierge service? IF so, that may be helpful to @cacoon6

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@lindajean, thanks for jumping in with that tip. Yes, there is a special number for airline reservation in case travel plans have to change due to medical appointments being rearranged, extended or your stay shortened. The concierge service can provide details.

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