I have been given permission from Robyn to post these FB posts that explain what is going on and why Im asking for your help and support:
Health Update.....
I am asking for prayers friends. I have seen the top neusurgeon at UIHC several times. Following the March 4th brain scan he again refused surgery due to risk. He will see me in a year.
He sent me back to my neurologist for symptom treatment. I asked my neurologist for a referral to Mayo Clinic and his was response was "I feel that would be a waste of time and money...but if you want a referral, you can get it from your primary doctor". WOW!!
My pulmonary doctor said following this last March 11th CT scan of my lungs, that the bilateral lung nodules have not changed in 10 months. He still does not have a diagnosis and will see me in 9 months. In the meantime I am to do breathing exercises and slow growing cancer is back on the table.
I was feeling very defeated.
So...I can't breath, I have daily headaches, my equilibrium is messed up and I wabble! I have left side tingling in my hand and feet. The brain tumors are abutting the Sagittal Sinus and causing severe stenosis. And I have around 35 nodules in both lungs that developed sometime in 2024...that are a mystery at this point.
Is going to Mayo a waist of time and money? Should I cut my losses and just live out my time as is? My faith and trust in God above is leading me to Mayo!
So folks...my AWESOME primary, who has been so supportive through this all just referred me to Mayo Clinic.
Latest Health Update:
I AM GOING TO MAYO CLINIC!!
April 6th to the Brain Tumor Clinic
April 7th for tests
April 8th to the Pulmonary Clinic
I am praying for a Lung diagnosis.
And that they can/will remove both Meningioma tumors.
Thank you all for prayers, thoughts and best wishes. You are all appreciated so much!!
I am truly blessed!!
Thank you God!!
Mayo Clinic....WOW!!!!
They asked me what I want to accomplish through them.
I said Remove the Meningioma tumors.
Restore my equilibrium.
Diagnosis my lung nodules.
We have been here three days, spoken with Neurologists, a Neurosurgeon and a Pulmonologist. They ALL were amazing!!
The Pulmonologist said the nodules are permanent scaring left behind from Histoplasmosis. A common midwestern fungal infection in the lungs. They will continue to monitor at the U of I over the next 12 months.
I will work on strengthening my lungs
as I am able with my equilibrium issue.
Neurologist, Equilibrium issue...
Is not from the tumors. He
is running tests for a possible B12 deficiency. Also is doing
an EMG Nerve Conduction Study.
I will get those results and a video consult on April 20th.
And the best blessing of all!!!!
Neurosurgeon said YES!!!!
Doctor Zadeh, the top in the world for Meningioma Tumor removal, said the
tumors need to come out!
She will remove what she safely can and I may need radiation treatment, pending on what is left behind, if any.
Nervously, I ask what the risks were.
She said of course there is the normal risk of any surgery, but death is a 1% risk and that is due to anesthesia.
Stroke, there is a risk. Due to location of the tumors I would suffer Foot Drop on one or both feet. That will be a permanent condition I would have to live with if it occurs. She also said I will face a stroke and foot drop if I don't have surgery, due to the severe stenosis of the Sagittal Sinus.
Many tests and an additional day to our stay and Dr Zadeh will contact me in two weeks to discuss test results and surgery.
Thank you God!!!!
I am so blessed and relieved for this
medical option, I truly see in looking back that God was leading me here.
Thank you all for your prayers and best wishes!! I have never experienced anything like this and I am the person who loves to help others...never needing it myself, it is taking some continual reminding that it is OK to rely on others. I am so greatful for you all. Thank You!!!
