Since we moved to Colorado, we have been blessed to be surrounded by wonderful doctors who actually make NF their specialty. My NF1 children are followed closely by a wonderful team of Drs at the Aurora Children's Hospital and never have trouble explaining their symptoms...They just "get it".
For me...Things have been a little different. Since my NF1 diagnosis came so late in life, unfortunately so did any medical interventions.
Two years ago, I was diagnosed with hydrocephalus, enlarged ventricles and a brain tumor, and my follow-ups with Neurosurgeons and Neurologists have left me feeling helplessly frustrated. "There's nothing we can do", "Neurofibromatosis doesn't cause pain", "Here's a pill"....Are all things I have heard from doctors who just didn't GET IT.
Even after we moved to this great state, where NF wasn't some strange "disease", I found myself being swallowed up by the ignorance that my first two doctors had. The clinic I went to, told me I was just depressed and needed anti-depressants....."BUT....I came in here with a headache!!??"
I never went back to that clinic, and never filled my prescription for "anti-depressants". I was on my own--AGAIN! Something I have become an expert at is.....PUSHING BACK!
I am so tired of my symptoms being ignored...so tired of feeling like I am crazy. Tired of doctors not listening to me.
I began seeing a new general doctor, who treats "normal people". When I came to her with my NF, I was a prized patient, since she had never before seen an actual LIVING person with "Von Recklinghausen Disease"...(I politely corrected her, that it's not called that anymore)
She referred me to a Neurologist, who I just love! This Dr. referred me to a Neurosurgeon, because of my complicated MRI and all my issues....who wasn't quite as lovable. After 3 wks of leaving messages and having them ignored, I found my own Neurosurgeon...Who "GETS IT". I am looking forward to having some of the 36 yrs of questions, answered...I don't expect miracles...But I do expect better than I have gotten!
I have also become a patient at the Aurora Adult NF Clinic, where I met with a team of Drs. who reviewed my medical history and have set the wheels in motion, to hopefully get some treatment.
I have become so involved with learning as much as I can about NF, so I can then teach my children AND share this information with my friends. I am learning the NF doesn't really have a set of rules or guidelines. Every single person with NF is affected in different ways.
I am learning that NO doctor can fit NF into a box, and tell you what to expect, because with this disorder, it's all up in the air. I am learning that if I don't take my own health, and the health of my kids, into MY own hands, we will not get the right kind of care and treatment.
YOU...must become an expert of your OWN NF.....Not the NF of someone elses. PUSH BACK...If you feel you are not getting what you need. Don't be afraid to bring resources to your doctors that back up your symptoms. FIGHT for yourself! FIGHT for your kids!
Thrive On!
Great post! I think this is true for all parents and ALL medical decisions for children- and adults. Although my situation isn't nearly as life- changing, I went through several days of being told I was making things sound worse than the were basically. They finally figured out I was having extreme complications with shingles, and I was hospitalized for four days. There I met with the first neurologist of my life, and it scared me. Something really is wrong with me! I may or may not have permanent nerve damage, that's still to be determined. Had I not pushed back when I did, though, the situation could have been much worse. It is ESSENTIAL that your voice is heard when you know there is something wrong with your body! One way or another you MUST find someone to listen to you.
ReplyDeleteI was born with hereditary multiple exostoses, a bone disease, and I learned at a very young age (14) to switch doctors when they didn't get it. Your kids are lucky to have you on their side :)
ReplyDeleteI have and am right there but since I lost my job and thus insurance I started going to the V.A. clinic and they stared testing and all kinds of things that other drs just shrugged off. Thanks for all you do as I take your info to them and getting great results.
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