Discussions By Condition: I cannot get a diagnosis.

Fibrous Dysplasia

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: momoftwins3
  • April 20, 2009
  • 03:23 AM

i had CT scan in the ER last week and said i have Fibrous Dysplasia on my left skull base. I had CT last August that showed normal. could this be a misdiagnosis, if so what else could it be? who should i see next? neurosurgeon? i am only 34 and have 3 kids ages 3 1/2 and under. i need some medical help!! thank you!!

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7 Replies:

  • i had CT scan in the ER last week and said i have Fibrous Dysplasia on my left skull base. I had CT last August that showed normal. could this be a misdiagnosis, if so what else could it be? who should i see next? neurosurgeon? i am only 34 and have 3 kids ages 3 1/2 and under. i need some medical help!! thank you!! Personally, if I were in your shoes, I would consult with the following until an answer or some better direction can be found , in this order: #1) Oncologist#2) Neurologist#3) Endocrinologist#4) Internal Medicine Specialist Blessings, prayers, and best of luck to you; hang in there and keep us posted. <
    neurotransmissing 145 Replies Flag this Response
  • i saw internal medicine dr yesterday cause my primary care was out of office. she is referring me straight to a neurosurgeon, which i'm hoping to get in to this week. we'll see if that happens! crazy thing is my CT from last August DOES show a 4mm lesion on my head! i was not happy when i saw this. i asked why i was not told and the doctor said cause that is so small and the scan was still within normal range. don't ya think i should at least have been notified and had some follow up CT scans??
    momoftwins3 3 Replies Flag this Response
  • i saw internal medicine dr yesterday cause my primary care was out of office. she is referring me straight to a neurosurgeon, which i'm hoping to get in to this week. we'll see if that happens! crazy thing is my CT from last August DOES show a 4mm lesion on my head! i was not happy when i saw this. i asked why i was not told and the doctor said cause that is so small and the scan was still within normal range. don't ya think i should at least have been notified and had some follow up CT scans??Hi momoftwins3,First, be assured...Fibrous Dysplasia is highly treatable with generally good outcomes. Treatment varies with each person but most frequently includes some degree of surgical intervention.May I ask what the reason was for the head CT in August, 2008, and the most recent one? Have you been experiencing any neurological symptoms?Did you experience any as a child?And YES, momoftwins3...I ABSOLUTELY think that you should have been informed of the exact findings of your August, '08 CT at the time the results were in. As far as I'm concerned, neglecting to inform a patient of information in this day and age of Informed Consent, Patients Bill of Rights, etc., constitutes both poor professional practice and a dereliction of duty. If the Doc in question is your Primary Care Doc, you'd be well-advised to put him/her in the past tense and find a new one.Be sure your treating Docs provide you with detailed information on your upcoming treatment options. If a Doc is hesitant to provide both the pros & cons of ALL treatment options IN LANGUAGE THAT YOU FULLY UNDERSTAND, be politely assertive but don't take no for an answer. You have both the right and need to receive specific information regarding your care.My very best regards to you,John<
    JonMac 165 Replies Flag this Response
  • John,thank you SO MUCH for your words and your advice. that's probably the best input i have received yet. i've really been scared that this could be bone cancer. i have 3 year old twins and a 2 year old. i am busy...i stay at home. i obviously love them dearly and want to be around for a LONG time! this has all been very overwhelming to me. last august i had the CT scan because i had been experiencing headaches and lightheadedness and crackling in my ears for a few months. in november i noticed a change in my vision. in december i was diagnosed with Presumed Ocular Histoplasmosis Syndrome and have since had 3 eye injections that seem to be working. in january i saw a neuro-ENT and had an inner-ear test done. he told me my inner ears are over-sensitive and have since been on valium. after reading my CT report, i think the fibrous dysplasia is affecting my inner ears. 2 weeks ago i hit my head on the kitchen island while playing with my 2 year old. for a week and a half i had a consistent headache and pressure. that's was the reason for my 2nd CT scan last week. the fibrous dysplasia was "accidently" found. everyone has pretty much seemed clueless about this condition, so i'm anxious to get to the neurosurgeon which will be this friday. i have never experienced symptoms as as child. i have always been healthy and very athletic.thanks again! can i ask if you are in the medical field?stephanie
    momoftwins3 3 Replies Flag this Response
  • John,thank you SO MUCH for your words and your advice. that's probably the best input i have received yet. i've really been scared that this could be bone cancer. i have 3 year old twins and a 2 year old. i am busy...i stay at home. i obviously love them dearly and want to be around for a LONG time! this has all been very overwhelming to me.Hi Stephanie,You're certainly welcome! I share your sentiments completely re: your children. I've got three great kids of my own - all adults now - plus two beautiful granddaughters and one (soon to be two) handsome grandson(s). There's nothing better then family...that's really what it's all about.I'd be pretty surprised if you weren't overwhelmed, but try not to become overwhelmed with anxiety. Stephanie...I've got a good feeling that you're going to be "Momming" those young 'uns for a VERY long time!last august i had the CT scan because i had been experiencing headaches and lightheadedness and crackling in my ears for a few months. in november i noticed a change in my vision. in december i was diagnosed with Presumed Ocular Histoplasmosis Syndrome and have since had 3 eye injections that seem to be working. in january i saw a neuro-ENT and had an inner-ear test done. he told me my inner ears are over-sensitive and have since been on valium. after reading my CT report, i think the fibrous dysplasia is affecting my inner ears. 2 weeks ago i hit my head on the kitchen island while playing with my 2 year old. for a week and a half i had a consistent headache and pressure. that's was the reason for my 2nd CT scan last week. the fibrous dysplasia was "accidently" found.So, the first onset of any type of symptoms...headaches, lightheadedness, crackling in your ears...was roughly late spring/early summer of '08. And then a relatively short time later, visual problems developed, have been successfully (at least to this point?) treated, and are not problematic. Your ear sensitivity has responded pretty well to the Valium? (As a plus...Valium also "takes the edge off" in stressful times. Might just bee a good time for it!).everyone has pretty much seemed clueless about this condition, so i'm anxious to get to the neurosurgeon which will be this friday. i have never experienced symptoms as as child. i have always been healthy and very athletic.The average Doc is relatively "clueless" re: Fibrous Dysplasia, as you so aptly put, because it's neither an extremely common nor well-understood condition. Although Fibrous Dysplasia is something that a person is born with, it isn't hereditary. You need not have concerns about "passing" it to your children. The exact why's and how's of its occurrence still aren't really clear although the current train of thought is that some type of mutation occurs in a gene that controls bone growth. I only asked about any childhood symptoms because some forms of Fibrous Dysplasi tend to cause symptoms to appear early in childhood while other forms may not spur any symptoms for years (this would be YOU!).thanks again! can i ask if you are in the medical field?stephanieYes, Stephanie, I am indeed in the "medical field", so to speak. I'm a Registered Nurse with...well let's say, a pretty significant number of years of experience (ten points to me blurring possible age guessing!)...in a wide variety of health care settings and focuses. And prior to Nursing school, I worked in many health care "tech" positions...Orthopedic Tech...ER Tech...Surgical Tech, etc. Health care is a great field and has been exceptionally rewarding for me.If I can be of any assistance...info...moral support...etc. please feel free to email at: jonmac391v@comcast.net.Keep on smilin'!Best,John<
    JonMac 165 Replies Flag this Response
  • wow...thank you thank you is all i can say! you have truly been a blessing and an encouragement to me! your words have given me comfort and i greatly appreciate you giving advice and sharing your wisdom with a mere stranger. :) i pray daily that i DO get to live a full and healthy life with my children, watch them grow and enjoy my grandchildren as you are now. i will most definitely keep you posted on the outcome of my appointment with the neurosurgeon on friday.as far as the eye treatments, yes they seem to be working. the histo spots are "inactive" at this point. this is the first 5 week time period i have gone without having an injection so we'll see what happens at my next appointment. i have an awesome doctor and i totally trust him. yes, the valium seems to work as far as the lightheadedness (for the most part), but not the crackling of ears. thanks again and have a wonderful evening!stephanie(may i ask where you are from?)
    momoftwins3 3 Replies Flag this Response
  • wow...thank you thank you is all i can say! you have truly been a blessing and an encouragement to me! your words have given me comfort and i greatly appreciate you giving advice and sharing your wisdom with a mere stranger. :) i pray daily that i DO get to live a full and healthy life with my children, watch them grow and enjoy my grandchildren as you are now.Stephanie, I'm more than pleased to offer you both information and encouragement...both = empowerment. I sincerely hope that I haven't given you a real shot at your future. Many thanks for YOUR prayers... I'm VERY humbled by that. i will most definitely keep you posted on the outcome of my appointment with the neurosurgeon on friday.as far as the eye treatments, yes they seem to be working. the histo spots are "inactive" at this point. this is the first 5 week time period i have gone without having an injection so we'll see what happens at my next appointment. i have an awesome doctor and i totally trust him. yes, the valium seems to work as far as the lightheadedness (for the most part), but not the crackling of ears. thanks again and have a wonderful evening!stephanie(may i ask where you are from?)
    JonMac 165 Replies Flag this Response
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