Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
For those of you who know my story, you know what struggles I've had trying to find a good doctor in the entire state of NY who knows anything about treating Intracranial Hypertension. Of those I have seen here....most have been incompetent at best. Therefore, I travel 7 hours to see specialists at OSU. Of course, I wouldn't be able to survive the day to day without someone local to help me. I had that someone in my Primary Care Doctor....Dr. Robert Brandon. He knew very little about IH when I was first diagnosed, but, he learned as much as he could. He talked to my doctors at OSU, wrote my pain scripts, fought as my advocate for better care and wrote a protocol for my care with local hospitals should I end up in the ER. Two weeks ago he passed away...and now I feel like my world is coming to an end.
He was one of those rare doctors that you just can't find anymore. Apparently he had over 2500 patients in his private practice, but, I would never know it. His acute patients (colds, virus, etc.) sometimes had to wait an hour or so to be seen, but, his chronic patients (like me), did not. The reason for this was because he had compassion and he spent as much time with his patients as they needed. Sometimes he spent 2 hours with me. We spoke of family, life and he treated my emotional and physical health. He was my friend.
A few weeks ago I called his office for a script refill only to be told that he was in the hospital in critical care. He was burning some debris on his day off and the fire kicked back burning 95% of his body. His lungs never recovered and on the 21st they took him off of lung support and he passed away.
His funeral was full of loyal patients, (some who had followed him for over 20 years), fellow physicians and family. I learned during the eulogy from his brother that we may even be related...as they share the same family name as my grandmother's maiden name. Additionally, he is an Irish Catholic like me. He left behind a mother, two brothers, a sister, a son and a wife of 25 years....not to mention a loyal staff who are lost without his lead.
Many of you know how important it is to have a doctor who understands IH and is available to care for you when you need him/her. I am back to square one and feel so lost.
He was one of those rare doctors that you just can't find anymore. Apparently he had over 2500 patients in his private practice, but, I would never know it. His acute patients (colds, virus, etc.) sometimes had to wait an hour or so to be seen, but, his chronic patients (like me), did not. The reason for this was because he had compassion and he spent as much time with his patients as they needed. Sometimes he spent 2 hours with me. We spoke of family, life and he treated my emotional and physical health. He was my friend.
A few weeks ago I called his office for a script refill only to be told that he was in the hospital in critical care. He was burning some debris on his day off and the fire kicked back burning 95% of his body. His lungs never recovered and on the 21st they took him off of lung support and he passed away.
His funeral was full of loyal patients, (some who had followed him for over 20 years), fellow physicians and family. I learned during the eulogy from his brother that we may even be related...as they share the same family name as my grandmother's maiden name. Additionally, he is an Irish Catholic like me. He left behind a mother, two brothers, a sister, a son and a wife of 25 years....not to mention a loyal staff who are lost without his lead.
Many of you know how important it is to have a doctor who understands IH and is available to care for you when you need him/her. I am back to square one and feel so lost.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
~Terrible tragedy ~
I hope you can find peace somehow ..
I also hope you can find a Doctor that can somehow live up to what this Doctor has done for you and all his other patients.
Best of Luck ! And will also say a prayer !
MM3
I am sorry for the loss to his family, and for you as well. It truly is sooo hard to find a doctor you can come to trust and who is knowledgeable.
Prayers,
Mandy
MandyRee