I was blessed to find a great neurosurgery team, and I cannot say enough how utterly important it is to find a care team that matches your needs. Meet my neurosurgery heroes from Houston Methodist!
I was referred to Dr. Jonathan Zhang, MD, FAANS, FACS, at Houston Methodist for my first brain surgery back in 2016, after several different neurologists began to question the possible diagnosis of hydrocephalus. Since I was born two months premature, there was an ongoing debate whether I actually had the condition or if my ventricles were just naturally large. In fact, I went undiagnosed with various symptoms for most of my life (read the full story of my diagnosis of congenital hydrocephalus at age 27 here).
As it turns out, two years later we are fairly sure that I do indeed have hydrocephalus. Based on various evidence, and my reaction to having a shunt placed in March, Dr. Zhang's team is confident that the treatment pursued for hydrocephalus has beneficially impacted my quality of life. Many of the symptoms I experienced previously all but disappeared post-surgery!
But, how do I feel about the team that cared for me throughout this process? My answer is, "I love them!"
In addition, I got to know the surgery nurse, Olivia, pretty well. Or, I at least felt comfortable calling both before and after surgery with countless questions. I had a lot to learn and the entire staff was patient with my inquiries. Though I often felt as if I was bothering them with silly symptoms or concerns, I was greeted with kindness and professionalism every time.
When it came time for the actual surgery (I have gone through two with this neurosurgery team), I felt well taken care of. All of the nurses, assistants, and doctors who made up my surgery team were professional, all while exuding positive attitudes and bright smiles. And not only did the hospital care team make a fantastic impression but the in-office staff continue to reassure post-surgery.
Needless to say, I will be sticking with this team for the foreseeable future. I feel very safe in their capable hands and I possess full confidence that the remainder of daunting brain surgeries (we hydrocephalus patients face on a repetitive basis) will go just as smoothly with their ongoing support.
It's important to find a care team that makes you feel comfortable. After all, how many times have we all been to doctors who make us feel like nothing more than a number and as though we are stupid because we don't understand everything right away?! Well, newsflash: part of hydrocephalus is dealing with cognitive issues which can make understanding difficult. There is a reason why hydrocephalus patients are often referred to as having similar symptoms as those with dementia!
Hence, it is invaluable when you find a doctor that explains in simple words and honestly listens when you speak. It sometimes takes a while to find a good one, but hang in there and keep searching until you discover the diamond in the rough. Be your own patient advocate whether you have the condition yourself or care for someone who does! Don't give up and eventually you will find the answers you need.
It took me almost twenty years to find a doctor who could accurately diagnose and treat this condition, but I now have high hopes for the future. Even if you don't live in Houston, I firmly believe you will find the right fit for you if you just keep looking.
On the other hand, congratulations if you already have an awesome care team! In my opinion that is half the battle and I'm ecstatic that you have established support. Other readers, in addition to myself, would surely love to know which doctors you have found helpful and which area(s) they serve. After all, word of mouth is not only the best form of marketing but also makes for the best review.
Blessings for a great neuro team and - as always - much love from a fellow hydro-head case,