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Rosanne

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Fri, Apr 19 8:20pm · Mayo Appointments: Brain Tumor 48-hour Access Program in Brain Tumor

Hi Colleen, thank you for responding. I’ve met someone in a Meningioma forum on Facebook who has been to the Mayo in Rochester. She has seen a neurologist there and says that the results of the MRI showed a Meningioma and that the neurologist said come back in a year for another MRI. She doesn’t know where her tumor is or the size and wanted to see a neurosurgeon and asked for a referral but “supposedly” the neurologist won’t give her one.

After being to the Mayo, I also found this odd since when I called them they made appointments for me with a neuro-oncologist and neurosurgeon immediately (I’m extremely happy with them both btw). 2 weeks later I arrived and had both of my appointments and am very happy with how I have been treated and my plan for moving forward.

After reading her story on Facebook I mentioned my experience and told her to contact the neurosurgery dept. directly. I know whatever she was doing wasn’t getting her anywhere. Now I’m not sure if this is a miscommunication between her and her doctor or this is actually what is happening, But I was trying to help her so that she can see a neurosurgeon to get more information about her situation. She was very frustrated.

It sounds like today she spoke to someone in the neurosurgery department and they are going to get back to her the beginning of next week to help resolve this issue. She called around 4:30 today and it was too late to do anything. Hopefully she gets it resolved now.

I don’t know this woman personally, I just know what she posted on Facebook and how frustrated she was with the Mayo. I was so happy with my Mayo experience that I just wanted her to have the same experience that I did.

Fri, Apr 19 4:14pm · Mayo Appointments: Brain Tumor 48-hour Access Program in Brain Tumor

I finally found it…never mind. 🙂

Fri, Apr 19 2:52pm · Mayo Appointments: Brain Tumor 48-hour Access Program in Brain Tumor

I know I read something about the Mayo Clinic having a 48 hour appointment window for people who have brain tumors. Can anyone give me more info on that?

I know someone who is seeing a neurologist at the Mayo and they will not refer her to a Neurosurgeon even though she was diagnosed with a Meningioma. They told her to follow up in a year but she wants to hear more about it since she really wasn’t given any info when she was there.

I’ve had a completely different experience than she has. I’m not sure why she is being denied a visit with a Neurosurgeon when she was told by a neurologist at the Mayo that she has a Meningioma. When I made an appointment at Mayo I was given an appointment for Neuro oncologist and a Neurosurgeon without any issue at all. In fact, they told me these are the people I need to see with this type of tumor.

Any suggestions for her or help would be appreciated.

Thanks.

Fri, Mar 15 8:55pm · Finally!!!!! in Visiting Mayo Clinic

Hello, I have just returned from Mayo in MN. I stayed in a hotel and had an appointment with a Neuro-Oncologist on 3/11 and Neuro-Surgeon on 3/13. I have to say everyone is extremely nice and want to make the most of the time that you are in town. I did not get admitted as I have a decision to make. They did tell me to give them a couple of weeks notice prior to deciding that I want to go ahead with surgery. They said the more notice the better.

If you are going to MN, my best suggestion is to make sure you are at a hotel connected to the pedestrian subway tunnel. You never have to go outside this way and it’s a 5-10 minute walk to all the Mayo buildings. I know the Mayo in MN has a concierge service that can guide and help you with any questions that you have. 507-538-8438. They also have a Facebook page and tons of videos on YouTube that I watched prior to going that were very helpful.

Good luck with your trip and appointment!

Fri, Mar 15 7:42pm · Left Anterior Clinoid Meningioma Surgery in Brain Tumor

Hello, I’m sorry to hear about your family member. I hope she starts doing better soon. I know this whole thing can be wearing and any of the solutions — radiation and/or surgery — have a long road of recovery. Wishing her all the best and a speedy recovery!

Fri, Mar 15 7:36pm · Left Anterior Clinoid Meningioma Surgery in Brain Tumor

That’s very similar to what happened to me. I’ve been treated for glaucoma for many (probably 7) years and finally they said it was cataracts. Had the cataract surgery Sept. 2018 and still did not improve, they told me YAG laser would fix it. Had YAG in December 2018. Still bad vision in left eye. Right eye is fine.

My cataract surgeon sent me to a Glaucoma specialist in February 2019 and within 5 minutes he said I don’t and have never had Glaucoma and he sees slight pallor in my left optic nerve with APD. Sent me for a brain MRI and here I am. 7 years after being diagnosed with Glaucoma I find out I never had it, probably had cataract and yag surgery for no good reason too. I’m seriously irritated with the ophthalmologists ( I have seen many over the years) I have seen since I’ve been complaining about peripheral vision loss for years. No on ever mentioned doing an MRI. It probably wouldn’t have changed things, I would have been on a ‘watch and wait list’ at that point but it still seems that if a patient complains of peripheral vision loss and they have visual fields that prove it then an MRI should be an automatic recommendation.

I do not know if the tumor is wrapped or pushing around the optic nerve, I also know it’s close to the carotid although they don’t think it’s on it. The MRI I had was grainy and the cuts were too thick…lesson learned…there are different qualities of MRI and you get what you pay for. Mayo recommended a better MRI but after talking to the Neurosurgeon he recommenced I do that prior to surgery or in a few months to see if the tumor is growing.

I will definitely go back to Mayo for the MRI, and i’m leaning towards the surgery (probably around June when weather in MN is a lot nicer than now). Going to take a couple of weeks to process this whole thing and make my final decision. It’s definitely overwhelming to say the least.

Fri, Mar 15 1:42pm · Left Anterior Clinoid Meningioma Surgery in Brain Tumor

Thank you for responding. It’s definitely nice to see that you are doing well. I expected loss of vision at some point although the Dr. at Mayo seems to think I only have a 10% chance of losing vision completely and 50/50 chance that I will stay the same or slightly improve if I have the surgery.

Did you have your surgery at Mayo in Rochester? I’m in Oklahoma and while there are good surgeons here, the hospital is a concern for me so if I do choose to do this I will definitely do it at Mayo in MN.

I have been told that the surgery would probably be 6-8 hours, in hospital 3-5 days as long as there are no complications and recovery would be 3 months. With a follow up at Mayo 3 months after surgery for a MRI and visit with the surgeon. Then watching it after that.

I’m told that this type of tumor will not shorten my life span, however it may, and most likely will make me go blind, if I don’t have the surgery. You sound like you were in a similar position, did you ever think of not getting the surgery? And, at this point, do you have any regrets from having the surgery?

I know I really should do the surgery (and I most likely will) but it’s like the devil I know vs. the devil I don’t know, which is the scary part.

I wish you all the best in your recovery, you sound like you are handling this very well!

Thu, Mar 14 11:18pm · Left Anterior Clinoid Meningioma Surgery in Brain Tumor

Hi my name is Rosanne, i’m 52 and I have recently been diagnosed with a 1cm left anterior clinoid meningioma that was found because of left peripheral vision loss. I’m looking to connect with others who have had the surgery to remove this tumor to find out their outcomes, recommendations, tips, etc.

Unfortunately, I’m not on the “watch and wait” list due to the loss in vision that I have. I just returned from Mayo in MN after seeing a Neuro Oncologist and Neurosurgeon and both suggest surgery sooner rather than later to preserve whatever vision they can in my left eye. I’m not a good candidate for radiation due to the proximity to my optic nerve.

Of course I have major concerns with having the surgery so if there is anyone out there willing to share their experience and recovery I’d love to hear from you.

Thanks!