And the Answer is... Maybe
I had not paid much attention to the medical report that followed my MRI’s in July after my doctor told me there was no sign of anything to worry about. But yesterday I found myself paying $155 while a physiatrist read the report and looked at the images on the disk I had obtained.
He was the doctor who had suggested CP in utero and said I could find out definitively with an MRI. I had chosen not to go through with expensive testing at that time, asking myself what I would do differently if I found out I had had CP.
But this was different. The MRI was done for another reason and now I had the chance to find out, or so I thought.
I have to say the rotating image of my perfect carotid arteries is really interesting to watch. There were other views of my brain and neck that didn’t tell me a lot as a lay person.
The doctor read in the findings: “Mild hyperintense T2 signal is seen in the left parietal periventricular white matter.” This is the area of the brain that controls the right leg, where my problem resides.
I suppose I was expecting to find some sort of flashing CP trail that was conclusive. Instead I have a mild hyperintense T2 signal that might indicate something, or might not.
So the best evidence to date is still my peculiar gait, which has an element of spasticity similar to that of a person with diagnosed CP.
My husband suggested at dinner that there must be some specialist who could say something with greater certainty. After all, whatever evidence there might be must be on that scan. Would this person be a neurologist or some other specialist? Is there a person who is an expert in adult CP?
Maybe I’m not destined to get an answer to this health issue which has been with me since birth.
Meanwhile I started PT this week and I constantly remind myself that the pain associated with being stretched and rotated is necessary to produce the increased flexibility that I need.
He was the doctor who had suggested CP in utero and said I could find out definitively with an MRI. I had chosen not to go through with expensive testing at that time, asking myself what I would do differently if I found out I had had CP.
But this was different. The MRI was done for another reason and now I had the chance to find out, or so I thought.
I have to say the rotating image of my perfect carotid arteries is really interesting to watch. There were other views of my brain and neck that didn’t tell me a lot as a lay person.
The doctor read in the findings: “Mild hyperintense T2 signal is seen in the left parietal periventricular white matter.” This is the area of the brain that controls the right leg, where my problem resides.
I suppose I was expecting to find some sort of flashing CP trail that was conclusive. Instead I have a mild hyperintense T2 signal that might indicate something, or might not.
So the best evidence to date is still my peculiar gait, which has an element of spasticity similar to that of a person with diagnosed CP.
My husband suggested at dinner that there must be some specialist who could say something with greater certainty. After all, whatever evidence there might be must be on that scan. Would this person be a neurologist or some other specialist? Is there a person who is an expert in adult CP?
Maybe I’m not destined to get an answer to this health issue which has been with me since birth.
Meanwhile I started PT this week and I constantly remind myself that the pain associated with being stretched and rotated is necessary to produce the increased flexibility that I need.
15 Comments:
best of luck in finding an answer, unfortunately when it comes to the human body, many times there is no definitive answer. sometimes the more we look at something the more possibilities arise.
I can't remember reading if you said the issues you have with your gait have been lifelong, or if there has been a progressive problem.... sorry.
hugs.
oh by the way, last trip to dc was spur of the moment (taking advantage of free ride) I think it was during the time you were away in chi-town which was why I didn't call....
Mouse -- This problem has been with me since I took my first step. I have seen a slew of doctors over the years who have never been able to put all the pieces together. Fortunately I am not really limited in what I can do. I just don't move through the world gracefully!
Sometimes no answer (or a vague answer) has to be the answer, right? Frustrating, I'm sure. I hope you are able to get to the bottom of the mystery someday, just for knowledge's sake.
By the way, people with CP might object to the phrase "CP victim." Just a thought. :)
Steve -- Yes, I do hope I get to the bottom of this eventually.
This would not be the first time I have inadvertently said something politically incorrect. I modified that phrase to remove the offending word. Thanks for noticing!
It's so interesting what can be discovered via MRI's and so forth. I hope you are able to eventually get to the cause of your leg issues, but I guess in the meantime treating the symptoms is the next best thing, because what else can you do? I'm thinking about physical therapy to speed up the healing of my foot. It sounds like some amazing things can be accomplished that way.
Cyndy -- I just completed my regimen of exercises for the day. I told my husband that if these don't stretch out my hamstrings and help my hip rotation, I don't know what will!
If you opt for PT, I know a wonderful therapist who is moving his practice to Bethesda in December. Just let me know and I can tell you how to contact him for an appointment.
Wow!
Your brain is huge!
And what a cute little chin!
You are beautiful inside and out baby!
Bulletholes -- I would love to accept your compliments, but the pics are Google Images rendition of someone else's brain. I didn't attempt to download the image from my CD. I would like to hope my brain is equally attractive, even with its imperfections!
How frustrating! I want definitive answers from my medical professionals and they seem to be getting fewer and farther in between. I wish you luck with both finding a CP specialist and the PT.
Kristin -- If there's one thing I am, it's determined. I'm not ready to give up yet!
I've suffered from a medical issue all my life as well... I've seen more doctors than I can count on my fingers about it, and no one's ever been able to tell me anything. Redic.
I hope your figure yours out...
LiLu -- Welcome!
I'm sure with every new doctor, you have thought "Maybe this will be the one" only to be disappointed. I'm starting to think it's only at the Mayo Clinic where they finally come up with answers to life-long questions!
Good luck in your pursuit of the truth as well!
barbara,
how frustrating, how persistent, and now how determined despite the pain of PT ...
great character traits, friend!
i, too, understand the frustration and years, dollars spent on trying to figure out my own peculiar physical ailment.... i had truly given up when a chance encounter with the right doctor started a chain of events that unraveled all those years of unknowing - and finally, a diagnosis.
At that moment, I knew 100% that all those years I attempted to explain my complaint to medical professionals - and received blank stares or condescending attitudes- were worth it! I WAS right.
Now, with a proper treatment plan in place, I am better. No, I will never be 'free' or 'healed' - but now I can live with my disease and best of all: with peace of mind.
good luck on your journey!
rdm
xx
how amazing to see pictures of your brain activity!
but how frustrating that its not given clear answers/directions...
Since it has been lifelong, you might as well just consider it "you". When people ask me about my brother's arm, it usually takes me a moment to understand what they mean. That's just him, and when he wants to do something (like percussion -- MORE COWBELL!) he starts from what he's got and plans how to get where he wants to be.
It always takes courage to set out on the journey, and I admire yours.
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