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11 hours ago · Gratitude Discussion Group in Just Want to Talk

@hopeful33250
I prepare a German dish that has hard boiled eggs and a warm mustard sauce topped with fresh dill. What kind of sauce are you looking for? I’ve also done a tomato curry one as well or a simple Hollandaise Sauce.

Curious
Dawn

13 hours ago · Research on TMJ in Chronic Pain

@sakota9 here’s a link to a great video about TMJ.

Have you noticed it the pain is triggered by any particular action? Like during eating or stressful situations?

Thanks
Dawn

2 days ago · Need Patient's Experience with Mayo Clinic. Is it worth it? in Visiting Mayo Clinic

@nycdave7
My insurance company covered 100% so I’m not sure pricing but I also know they will work with your insurance company especially since you have had numerous opinions with no results. I encourage you to speak with their insurance department.

https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

I forgot to mention in my previous response.. I had no idea anything was wrong until I received a steroid injection to my shoulder. The cortisol shot caused an unusual reaction that triggered my issues. My doctors were very adamant that it was impossible to have a tumor and had done multiple MRIs and couldn’t find it however my particular tumor was only visible on a CT scan that they accidentally stumbled upon for an unrelated issue. I had a mildly high aldosterone but a extremely low renin level. Not all tumors are hormonally active. But any tumor in the adrenal gland reeks havoc on the endoctrine system. I’m definitely not saying you have a tumor!!! But I highly encourage you to get those tests. Those will be the first few tests you will have if you decide to go to Mayos. They will also do 24 hour urine a slug of blood tests and an 24 hr ambulatory blood pressure monitoring. But if you decide to go to Mayo I encourage you to have them perform those tests because timing is everything with those tests. If not done properly they will be a waist of time and money.

You have to be your own advocate. No one else is more invested then yourself. I would not be here today if I did not advocate for myself. I am a very strong believer in everything happens for a reason so let’s find the reason. 😉

As for my stay, my sister-in-law lives 2 blocks from campus so I stayed with her. She sold her house a couple months ago so I stayed in a hotel and they had a discounted rate for patients and I used the shuttle which runs throughout the day free of charge. My stays are usually 3-5 days depending on testing schd. If you let your medical team know your in a hotel they try their best to get stuff done quickly. Good news “I DON’T KNOW” is not in their vocabulary. I have been seen my Nephrology, neurology, Epilepsy, Cardiology, orthopedic surgeons, physical therapy, cardio thoracic surgery and pain treatment center in the course of 20 years. I have only been disappointed once but only because it wasn’t what I wanted to hear.

Have you notice any other changes? Like sleep patterns? More jumpy than usual? Since Cortisol effects your fight or flight system different times of the day or night. Has your doctor mentioned an adrenal vein sampling also known as AVS?

Dawn

2 days ago · Need Patient's Experience with Mayo Clinic. Is it worth it? in Visiting Mayo Clinic

Hi @nycdave7
I would love to share a bit about my experience and I like to say absolutely without a doubt Mayo Clinic is worth every second of your time. I was seen be many top notch physicians at multiple locations including the Cleveland Clinic where one of my nephrologist insisted I go. But I received no explanation as to why my blood pressures were running on average 300/220 even after 4 hospitalization and Dozens of tests. At that point I didn’t care what the answer was I was just looking for A answer. I woke up one morning went to my see my routine scheduled physical therapy appointment (Shoulder issues) and I felt terrible he took my blood pressure which was higher than his cuff would go. With tears in his eyes he said “one of these days your going to die on my table”. I packed my bags and drove to Rochester!! In hine sight that was not smart!! But I had been their in the past and new I could go on standby to see a doctor. I ended up in St Mary’s Hospital ER with a mild heart attack sustained during my 5 1/2 hr drive up there. I was told by multiple hospital staff that I was extremely lucky because I was seen by the very best of the best which happen to be available upon my arrival. I am very blessed!

I am not saying to do that in anyway and everyone’s experience is different. I have been to Mayo Clinic many many times but 4 separate time frames and 4 different major issues. I live in Illinois and it’s a well worth it 5 1/2 hour drive one way. So now my Mayo Nephrologist manages my care with some help from my local endocrinologist.

My diagnosis was primary hyper- aldosteronism and discovered I had a tumor in my right adrenal gland. Adrenal glads produce hormones that control blood pressure. Multiple hormones including cortisol, renin and aldosterone. Anxiety, stress, and sodium all effect cortisol levels. Mayo Clinic specifically has numerous case studies on this very topic. My doctor there particularly has several he has written. Here is a link to some of his…

https://www.ncbi.nlm.nih.gov/m/pubmed/

Here is a link to request an appointment http://mayocl.in/1mtmR63 . If you request and appointment then the Nephrology department will call you to do a phone interview and discuss your case if you both feel it is something you want to do and they will have a doctor review and schedule an appointment. It is worth the phone interview.

https://www.mayoclinic.org/departments-centers/nephrology-hypertension/minnesota/overview

Has you physician given you any diagnosis? Has the physician discussed the adrenal glands and their effects on blood pressure?

Curious
Dawn

3 days ago · Paralyzed Diaphragm in Lung Health

Hi @usmccam
I have read some of you replies and questions. I first want to say THANK YOU for your service.

I to use BiPap & CPAP. Based on my experience I absolutely hated it when I started using the machines. I would rip that mask off gaging and choking and gasping for air. My doctors changed my settings to a range so the pressure would auto adjust to my needs. As we awake our need for assistive breathtaking is less and s my doctor explained to me that’s when we struggle with the pressure. I have no issues with it now. I have developed some shortness of breath when I lay on my left side so I will often put the machine on while I’m awake reading to help alleviate those symptoms. Has your doctor talked about adjusting the pressure on your machine?

Thanks
Dawn

6 days ago · Glioblastoma Multiforme and Cognitive Loss in Brain Tumor

Hi @nursnis
My mother lost her battle with GBM. She Was diagnosed stage 4. Of the time they diagnosed her she had over 100 fingers that wrapped around her brain and her brain and two of the fingers develop tumors at the end of them. Surgery was not an option for her and we chose to do radiation for 30 days straight and a round of chemo in hopes to slow down the disease process. Over 3 months time she declined by the 3rd month she had no core strength to sit up on her own. Her headaches were getting worse she became more and more confused. We decided it was time to get help from hospice. But her oncologist refused to order hospice. I fired him and went with the hospice medical director. From my medical background and my personal experience, the end process of a GBM battle is painful for the patient and the families. I’m am sorry there is no easy way to tell anyone how the end will be as it is different for each individual. For my mom within 24 hrs she went from talking and eating to completely unresponsive other than moaning in pain. Within those 24 hours the cancer created holes externally and she went to sleep surrounded by her family and love she went to her forever home.

Praying for peace as you all endure this journey.
Dawn

6 days ago · Glioblastoma Grade 4 in Brain Tumor

Hello @bjh369
I am so sorry you have to make this journey! But there is some hope with new trials and studies they are have some success. My mother passed away several years ago from Glioblastoma (GBM) and treatments were so limited because it was not discovered until very late stage 4. But I have a patient we are currently seeing with stage 4 GBM. 60% of the tumor was removed and she has completed her first round of temozolomide and 30 straight days of radiation and a treatment of TTFields.

In 2015, the Food and Drug Administration (FDA) approved a portable device called Optune for the treatment of glioblastoma, to be used in combination with temozolomide.

The device consists of transducer arrays that are placed on the patient's shaved scalp, and these deliver low-intensity, alternating electric fields called TTFields.
We are seeing encouraging results in this early phase. I would encourage at least discussing the option with your oncologist.

Praying for you & your medical team.
Dawn