Tag: Magnetic resonance imaging

“The Velveteen Rabbit”

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by Margery Williams

“Real isn’t how you are made,” said the Skin Horse.  “It’s a thing that happens to you….

…”It doesn’t happen all at once,” said the Skin Horse.  “You become.  It takes a long time.  That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept.”  Generally, by the time you are Real, most of your hair has been loved off. and your eyes drop out, and you get loose in the joints, and very shabby.  But all those things don’t matter at all because once you are Real you can’t be ugly, except to people who don’t understand…”

I spoke to the oncologist today, about my MRI.  She had really no better or clearer information than the nurse I spoke to Friday.  The harmatomas are large.  There are several.  They might be able to stay, they might not.  She requested the sonogram from April to see if it is worth a comparison.  I will get the CD and the reports and send them along.  I will let the doctors again analyze the same few articles on Cowden’s Syndrome that exist.  I won’t tell them that I have likely read all of them myself too.  I will let them tell me if the spleen stays or goes.

I think it is that conversation, combined with the one I had with Meghan that brought the story of The Velveteen Rabbit to my mind tonight.  As we are buying clothes for school and trying to keep her quickly developing body comfortable and appropriate, she asks about my scars.  There are quite a few, the lipoma in my neck, the partial thyroidectomy, the C-Section, the hysterectomy, but she focuses on the mastectomy. and the scars from the reconstruction.  She asks sometimes to see them even as they are covered.  She asks if she will get to decide when to have that surgery.  “IF” I stress, “IF!”  You don’t know…  But she knows.  She is preparing already for the day it is her turn.  It twists my stomach in a knot.

We have had between us more than 25 surgeries, large and small.  We have scars of all sizes – inside and out.  But we are “Real.”  In a deep, important sense, we are “real” to each other.

I am in limbo… waiting.  But it is ok.  I live in a house where I have become “real.”  And, even on my darkest days, “…once you are Real you can’t be ugly, except to people who don’t understand.”

“It’s not fair!”

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“It’s NOT fair Daddy!”  Came the screech from the basement.  I held my breath. 

“You can’t do that Daddy!  It’s NOT fair!”

When I heard my husband return the challenge with an “Oh yeah? Watch this!”  I knew all was well.  The giggling that followed sealed the deal.

I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”

She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms.  She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”

She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me.  She simply wiggled in the play time when there was room.

This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!”  And I would have understood.  I know very few people who have given up more blood than she has.  And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!”  But she didn’t.

This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell.  Nope.  “Won’t it be great to have them off before most of my friends even get theirs on?”

So as I scheduled one more MRI this week.  This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!”  Nothing.  Just the typical, “Can you stay, and will I need a needle?”  Followed by, “I hope I can watch a movie this time because I don’t like having my head done.”  How disturbing that this will be her third brain MRI.

This has been one hell of a summer, following one seriously wild spring.  I have lost count of the appointments, and it is probably better.  They aren’t going anywhere and we will continue to have to roll with it.  As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”

But then I look at my 9 year old.  Wise beyond her years.  Content to live in this house where she is so loved and appreciated.  We have had many talks about the suffering of others through the years, and especially this year.  She knows she is not alone in having a tough path to travel.  She also knows it could be worse.

Maybe that contributes to the poise and grace under pressure.  Maybe that is why she is so insanely mature.  Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.

But God is good – all the time!

“I plan, God laughs.”

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I really should listen to my Mom…

My Mom says this… a lot.  And she is usually right.  I am a planner by nature.  Mom, although sometimes reluctant to admit it, is a planner too.  The difference is that the wisdom of her years have helped her tone down the level of planning so it is a bit less obvious, and she has also – wisely- learned to keep many of the plans she does make – to herself.

I like to organize everything, and quite simply put – Cowden’s Syndrome is chaos.  At least right now.

I mean eventually maybe it will fall into a neat little schedule of screenings, and routine visits, but right now – not so much.  If you saw the legal size yellow pad on my desk you would chuckle.  I have appointments planned until February of 2013.  And, at first glance to list doesn’t look too bad.  I was proud.  I got to these appointments early.  They are all routine.  They will all happen after school or on vacation days.  My terms.  But then we get to the unscheduled ones… and the follow ups… and the new visits.  That’s when things start getting hairy.

I called the oncologist‘s office today to get the results of my MRI.  The oncologist is away until Tuesday, but a very kind nurse called me back in about an hour.  She said, “Everything is benign.”  I wasn’t sure to be relived, or panicked.  What “everything?”  So she started with telling me my liver is just fine.  (Well thank goodness, because I hadn’t even THOUGHT to worry about my liver.)  She then proceeded to tell me there was a “small cyst” on my kidney, but that was probably no big deal. (And probably not a worry unless you live in a subgroup of people that have a 33% lifetime incidence of renal cell carcinoma.) She continued by telling me my spleen was “a bit more involved.” Hmmm… never have those words started a positive conversation.

The last two times I have had abdominal sonograms, both have very matter of factly stated that there is one 3.5 cm harmatoma on my spleen.  Ok, I had decided all by myself… if it stays 3.5 cm and behaves, we will just leave it there.

Well, apparently there is a “vascular lesion” that is a “significant” size, and “several” small harmatomas on the spleen.

So I said, “what does this all mean?”  That is when she said we would have to wait until the oncologist returned to determine the necessary next steps.

“Can I have a copy of the report?”

“I would rather not send it to you until you speak to the doctor.  I just wanted to reassure you there were no malignancies.  She may want you to come in.”

Which is where I did laugh out loud.  Come in – to hear a summary of what I was just told?  No thanks.  Just tell me what I need to do next and I will get it done.

I looked at my nice yellow pad, where September  previously had no appointments, and I see the colonoscopy written in for the 18th.

I have to say I was pretty sure 2 major surgeries for me, meant I was done for the year.  There goes that planning again.  Maybe I will keep my spleen and its harmatomas forever.  Maybe they will make me have it out.  Truth is I have no idea.  And I can’t plan for it at all.

School starts in a week or so.  My life apparently doesn’t always jive with the school calendar.  I will have to roll with it.

More importantly, Pop’s birthday is tomorrow.  He is 93, and a true inspiration.  My family will gather at my house to celebrate him.  I couldn’t be more excited.

I really think I am OK with this concept, but we all need a reminder sometimes!

I will get my results Tuesday, and life will go on.  It will all work itself out, as it has for… well forever.  I will try to keep the planning in check.  I really do try.

The only thing I am planning tonight is how many chairs I need for Pop’s birthday celebration!

Whose afraid on an MRI? Not me – practice makes perfect!

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MRI

So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing.  Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the anxiety they used to.  I have held onto Meghan‘s shoulder through countless knee MRIs, and this past year have had quite a few of my own.

Today it was an abdominal MRI.  Now if you have been following the story at all you know my abdomen is missing a few things.  You may or may not know that there is also the issue of a harmatoma (basically a fatty tumor) on my spleen from this PTEN harmatoma tumor syndrome.  Yep, that’s the other big fancy name for Cowden’s Syndrome – or more technically it is the umbrella term that covers Cowden’s and several other syndromes.

So, why the MRI?  Well among the other neat cancers that seem to come with this genetic mutation, is renal cell carcinoma.  A recent study, the same one that put the lifetime breast cancer risk at 85%, placed the risk of renal cell carcinoma in Cowden’s patients at 33% Yep, quiet old kidney cancer – hiding there until it causes you a problem.  So, they like to screen for it – twice a year with an abdominal MRI.

http://www.ncbi.nlm.nih.gov/pubmed/22252256

Part of me wishes they could just do the kidney.  You see I have this theory about taking the used car to the mechanic…  You just sometimes find out more than you wanted to know.

OK Used Cars

 I really am not in the mood to lose any more organs.  I think I have reached my quota for the year.  And I have to tell you, this is one hell of a way to lose a few pounds.

So, somtime tomorrow or Monday the oncologist will call me.  She will tell me that the kidneys look great.  She will tell me that the harmatoma on the spleen hasn’t grown, and it can stay right where it is.  She will also tell me that the stones they saw on ultrasound in my gallbladder a few months ago are no problem at all.  She will tell me all that because that is what I need to hear.  And hopefully it will all be true.

I need it to be true.  Because I will be busy.  An appointment right before the MRI with a new GI set me up for the “necessary” screening endoscopy/colonoscopy on September 18th. The risk of colon cancer is a meager 9%, up only a few % points from the general population, but no point leaving any stone unturned I guess!

Some days I wait for the break.  The time when we will be without doctors.  Then I realize this is all so new.  They are all so scared and confused they are doing all they can when they scan this, study that…  Hey, it worked for me when they saved my life with the breast cancer.  And, it will work to keep my girl safe as we scan her thyroid religiously.

I am tired.  I would be lying if I said anything else.  I am TIRED of doctors.  But, as I said before… I will keep going, necause there is no choice.  Plus, “Everybody has SOMETHING!” https://beatingcowdens.wordpress.com/wp-admin/post.php?post=693&action=edit

At least I am not afraid of the MRI tube anymore!

Persistence…

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Photo came from Google.com

My daughter found this photo the other day.  She was searching “funny dog photos,” and stopped when she reached this one.  She came to me and said, “Mom, I think you will appreciate this.”

I don’t know whether I was more impressed by her ability to know that I would in fact get a good chuckle out of this, as it seems to be the story of our lives, or by the photo itself.

Ingenious really.  People do this.  They create these photos, and some seem silly or insignificant.  Until there is one photo, phrase or saying that you really relate to.  Then somehow it all makes sense.

As we turn the corner of summer into August, I know we still have a few weeks of vacation left, but I start to reflect.

School begins for me on September 4th, and for Meghan on September 6th.  When we share our summer vacation stories, what will we tell?

We snuck in some fun.  There were some play dates that were a blast.  There was a trip to the beach, even if only for a few hours.  There was swim class, and dance class too.  There were books galore – read just for fun – far after the three she “had to” read.

But this year there was no camp.  And it was strange.  I missed the schedule a bit, but it was a necessary break – for both of us.

Practical reasons wouldn’t have allowed much attendance at camp.  We were at too many doctors.

Darn Cowden’s Syndrome.  Check this, scan that, see this doctor, make sure that is ok.  Multiplied times two it could be a full time job.  But, since I have a full time job, that I missed an obscene amount of days from last spring while my body parts were being cut away – summer is for all the doctors that we can squeeze in.

Ironically, no one really answered too many more questions. 

Persistence.

Before the end of August Meghan will have had 8 (very productive) Physical Therapy sessions, 3 visits to the pediatrician, a trip to the vascular surgeon, the rheumatologist, the oncologist, the geneticist, the orthodontist, our “second” pediatrician, and she will have had an MRI and 2 sonograms.

I didn’t do so badly myself.  I will be able to boast 3 surgical follow up appointments, 2 trips to the dentist, a visit to a new oncologist, which leads to a visit to a GI doctor, and abdominal MRI, a dermatologist for a skin cancer screening, and a visit to the thyroid surgeon.

And those are just the ones SCHEDULED through the end of August.

Persistence.

Not sure where it will get us.  All these doctors.  I will get them on a nice schedule though.  Start to consolidate.  Double up days.  Next Tuesday I have 3 appointments in a row.  Why waste time?

They want us to add the cardiologist back in.  Just to be safe they tell me.  Everyone is so busy covering their own ***, they often miss the important stuff.

I get that the screening needs to be, and that it needs to be intense.  It could be argued that this intense screening saved my life.  But there is still such a need for doctors with a clue.  Doctors who care.  Doctors who connect the dots.

Persistence.

Although some days I feel like the dog, digging through the concrete… I do believe it will all pay off.

Actually, it already has.

So maybe it isn’t the “perfect” summer, but its a necessary one.  Me and my girl…. together.

Disney – 2009

I Am Blessed

Published on by beatingcowdens4 Comments
This cartoon is on the front of Meghan’s 4 inch medical binder. We have sometimes decided whether or not to keep a doctor by their reaction to this TRUTH!

It is late.  I should be asleep.  Morning comes fast and it is already after midnight.  I just can’t seem to find a way to unwind. 

I just had a long chat with a ‘new” friend.  That helped a lot.  But still here I am, trying to get these racing thoughts out of my head before I rest.  

I saw a new oncologist today.  The geneticist insisted I have one to follow me and one for Meghan.  Except I was having a hard time finding one who didn’t think Cowden’s Syndrome was contagious.  (Ok, perhaps I exaggerate, but they weren’t anxious to see me.) 

So the geneticist sent out an Email on Tuesday to some of his friends.  By Friday he had a name for me, (which means the genetecist is a KEEPER!) of a doctor IN network, and I met her today. 

She is lovely.  Of course, by already having the double mastectomy and the hysterectomy, I have made her job much easier.  Now she gets to push me to the fun stuff.  Next up- colonoscopy, and kidney MRI.  So tomorrow I will call to get the GI appointment, while they work out the authorization for the MRI. 

And all the while I will mourn a bit for the summer that wasn’t meant to be.  This was more, a necessary doctor “catch up period.”  I think by the end of August we will have at least 25 appointments done between us.  And those are just the ones scheduled right now. 

So, just when I start to get whiny and cranky about wanting some alone time to shop, or some fun time to swim, I remember.  Were it not for the work of the angel on my shoulder, that pushed my “prohylactic blilateral mastectomy” in March, I would have likely been spending this summer prepping for cancer treatment. 

So, we still get our trip to Disney, and there is always NEXT summer… 

I spent the last hour preparing for Meghan’s oncologist visit on Friday.  We haven’t seen this doctor for months.  There have been a few things going on.  So, I faxed her 32 pages of what we have been up to.  She wanted to review it before the appointment. 

I posted the cartoon because I had her binder out while I was preparing the fax.  I laugh every time I read it because even after all these years it is still true.  Even with our diagnosis of the PTEN mutation, and Cowden’s Syndrome, even with the precancerous thyroid nodules in Meghan, and her early puberty, she still has pain.  Every day.  And not one of these doctors that we take her to can tell us why. 

I thank GOD every day for her stamina, and her spirit and her spunk.  She is my love, my reality check, my perspective, my reason for being.  I feel displaced right now, from my church, my comfort zone – but not from God.  Even in the midst of all the chaos and uncertainty, I have a husband and a daughter that are beyond compare.  God has us in the palm of His hand.  We are blessed.  And it WILL be OK!

The Mommy Monster is BACK!

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The “Mommy Monster” is back in focus – eye on the prize!

See…  all it really takes is for the wrong person to tick me off, and the tears just dry right up!

 We went out today.   I told you I like Saturdays.  Family days.  No doctors.  We went to visit my parents, and my grandparents.  Saw my sister and my nephews.  Then we spent the afternoon with friends at a birthday party for  3 year old twins.  Good times. I was even able to eat a slice of pizza.  I have had less than no appetite these last few months, so I was impressed. Feeling pretty good we got home around 6 – and took in the mail. 

   Mail symbol

 It was clearly a bill, but I wasn’t prepared for it to read $750, “previous balance.”  Followed by an admonishment that we should pay immediately. 

Again I repeat, “HAS EVERYONE LOST THEIR EFFIN MINDS?” 

There are things we don’t do in this house.  We never give money to phone solicitors, and we NEVER pay a non itemized bill – ever.  Not even if it is for $7.50. 

So I went down to my very thick “pending” file, to find that on November 29, 2010 (because this is for surgeries in December of 2009 and April of 2010) I sent them a LONG and detailed letter with all the EOBs attached, stating why I owe them nothing. 

Really, stupid people who choose not to do their job, and make work for other people REALLY annoy me!

As I got all fired up for Monday’s battle, I noticed the answering machine was flashing.

Checking the message I saw it was a Massachusetts number.  At 4:30 PM today, apparently Dr. K from Boston was in his office reviewing Meghan’s MRI.

I sent him the report yesterday after my visit in NYC.  I also sent him a cover letter which essentially said, what Dr. R had concluded – that there was no mass in the knee, and that Meghan is still having some pain in the knee.  I closed the brief cover letter by asking him to keep the report in her file should I need him at some point in the future.   I made a point of telling him “If I do not hear from you I will assume you are in agreement with Dr. R’s findings.”

SURPRISE!  More opinions weighing in from up north in Boston.

 Dr. K’s message said the knee MRI “looked good” in terms of him not seeing blood on the joint.  He said, ” I know what you wrote about Dr. R not seeing a mass.  I just think if she has symptoms you should bring her to me for evaluation.  Give it another few weeks and come up in the early fall.”  (Sure…. no conflict with the school calendar there)

Sunrise over Childrens Hospital

 Relieved to hear the “old boys club” doesn’t supersede professional opinion in this case. 

As for  what happens next – who knows?  Every day is a great adventure for sure.  At least the Mommy Monster is back in full swing.  Looking forward to fighting the good fight Monday morning. 

I will probably call Dr. K – just to be clear on his thoughts too. It’s Saturday night.  Monday’s agenda is set.  And I have set my own internal countdown to Disney – the family vacation.  Keeping my eye on the prize.  God willing the doctors can’t find us there.

 Headed to bed now.  Tomorrow I will take my family to a cute little church a few miles away from the one I grew up in.  The people I love aren’t there, but they are nice people too.  And we will thank God for the blessings that have come from a week of ups and downs.  

Cowden’s Syndrome is exhausting… but we can take it!

I really wish I had kept my broken genes to myself!

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Apparently this has become like a sleeping pill to me.  This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest.  I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.

I am trying to find the balance, for both my daughter and myself.  The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives.  Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome.  Most of them don’t care to find out, and the few that do, well – I will let you know.  I think we have 3 between us that seem truly willing to learn.

So today I took Meghan to the vascular surgeon.  The same doctor that has embolized the AVM in her knee 4 times.  The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston.  “We just drained  30 ccs of blood from under your daughter’s kneecap.  I don’t know why it was there.  You should go meet with this doctor and see what he has to say.  He will likely want to put a scope under her kneecap after she has healed.” 

After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break.  He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment.  He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.

So we did.  And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.

Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.

I am still confused by the number of inconsistencies that happened in one small room.  The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.” 

Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.

Then, he held to his story that there was nothing in her knee.  Even as I pointed to an obvious bump he told me it was nothing.  I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass.  He told me he reviewed the CD and disagrees with the report.  Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.”  On sonogram he said there is a gathering of tissue (do I need to define mass?)

So, he said to bring her back in 6 months.  They will reevaluate.  Then we will repeat the MRI in a year.

Have I mentioned I cry when I am frustrated?

Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed.  Shouldn’t have done it, but I cried.  Fatal mistake.  I now look like a complete ass, when that is his job.  And he does it better than I ever could.  He actually had the nerve to lecture me that I would make my daughter upset.  I still can’t believe I took that.  (Still stewing!)  AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.

I HATE the crying thing.  I have been working on it for years.  UGH!

You know I wasn’t crying because i was sad.  I actually was really relieved at the thought that no surgery was necessary.  I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.

See, no one else knows the tears she sheds about this damned knee.  The things she can not participate in, or the modifications she has to make just to avoid pain.  She does them effortlessly.  Every day.  No one knows except me.  And it kills me.

So when we were leaving I tried to find the bright side.  I said, “See, at least you won’t need knee surgery this year.”  To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”

Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.

AVMs are difficult to deal with anyway.  When you combine them with a PTEN mutation, they are ridiculous to control.

Just one aspect of a multifaceted disease.

I really wish I had kept my broken genes to myself.

You can’t make this up…

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So I waited, again, all day for the phone call about the knee.  I put in my reminder call at 10 this morning and again at 4pm.  I was told they would look it over after their patients.

The call came at 5:20.  It was from the surgeon’s PA who does know Meghan and has sat in on her cases from the start.  The doctor doesn’t make the phone calls- ever.  I must admit for some reason I did not tell the PA that I was holding a copy of the report as she spoke to me.  I really wanted to hear what she had to say.

Actually what I REALLY wanted, was to hear, “You have a stable AVM.”  Let’s look at it again in 6 months.  I would have been jumping up and down.  I am beginning to like ” 6 months.”

That is what I was ready for – but this is what I got…

“We reviewed your daughter’s MRI and it is normal.”

NORMAL?

“Yes it is a normal MRI.”

DO YOU MEAN THERE IS AN AVM THERE THAT JUST ISN’T GROWING?

“No we don’t see an AVM.”

THEY TOOK 5000 IMAGES (and that this point I wanted to shout that the damned report cites a 2.8 x0.7cm mass, but I didn’t) ARE YOU SURE YOU LOOKED AT ALL OF THEM?

“Yes, there is no evidence of an AVM.  I know you wanted Dr. K in Boston to review these images..”

NO, I NEVER EVEN KNEW THERE WAS A DR. K IN BOSTON UNTIL YOU TOLD ME TO CONSULT HIM! SHOULD HE REVIEW THE IMAGES?

“That is up to you.”

WELL WHAT ABOUT THE FACT THAT THERE IS A PALPABLE  MASS ON THE INSIDE OF HER RIGHT KNEE ABOUT THE SIZE OF A PEANUT?

“Oh, you should bring her in so we could look at that.”

IT HAS ALWAYS BEEN THERE!!

“Bring her in so we could look at it.”

(In my own mind…you have a CD ROM with 5,000 images.  You have a report that says there is a mass, but yet somehow you pointing to it and saying, Yep that’s a mass is going to make this better?)

I walked for about 2 hours after this call.  It took that long to shift my emotions from irate to angry.

Once again with my back against a wall, I will call tomorrow for an appointment.

Another wasted day in NYC with its pricey parking garages, and doctors that are supposed to really give a crap.  Another day of summer burned for nothing.

Starting to feel like I am in the Twilight Zone.

Thanks PTEN.  Thanks Cowden’s Syndrome.  I like you about as much as Dr. R. – and right now that isn’t saying much!

 

Not a doctor, but I play one… in real life!

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Tuesday when the doctor didn’t call me with the MRI results, I was really irritated.  Annoyed enough that I called the imaging center where the test was done and asked them for a copy of the report.  While regulations prevent them from faxing it, they did put it in the mail.  I received it yesterday, but since we were having such a nice, “normal” day, I decided to wait and open it today.

Now, if  you are frequently ill, or if you have a child who is ill and frequently tested, you become able to decode these reports to some extent.  It’s not perfect, nor am I fluent, but I can manage to get the idea.  (Kind of like after 12 years of being married to a Puerto Rican man, even as a woman of Irish, Norwegian, and Dutch descent, I can kind of “get it” when they talk in Spanish.)

So I took the report down to my computer table, and the first thing I did was compare it to the last one. (Which was easily found in the 4 inch binder of her medical records, in the blue tab marked “images” – but we can talk about my OCD another day.)

Now the truth is I have no business trying to interpret this without the aid of a doctor, but for that – I blame the doctor and his insensitive move to ignore me before his long weekend.  So, I will give it a go.

The first thing I notice is that the reports are similar to each other.  Since they took place 6 months apart I first rationalize this must be a good thing.  There was not any significant growth of the AVM over 6 months.  Then I realize she had surgery in February to shrink the AVM.  There is NO significant change at all in the size of the AVM.

Under the section marked “findings” it reads “Deep into the medial retinaculum is a 2.8 x0.7 cm… mass”  Now I know that’s the AVM, but I had to take out a tape measure to picture the size.  Then I figured out the other words were obviously location, so I went searching for some pictures.  I took this one-off the www.aafp.org website.

I took a long hard look at this picture and then a long hard look at my child’s knee.  I think it hit me for the first time when I did that.

I mean, I have always known her to be in pain, a pain I belive to be very real and very intense.  But she has often said to doctors, and to me, that her knee is “swollen.”  That finding is always discounted by doctors reading these reports because it says “no joint effusion,” which translates into no swelling of the joint.

But, anyone who has had a splinter knows the irritating feeling of having something in your skin, and the desire to remove it. 

So, when I think about the doctor, incidentally the same one who didn’t call me Tuesday, telling me for several years that “AVMs don’t cause pain,” I must say I have an overwhelming desire to cause HIM pain.  Maybe AVMs in and of themselves, in certain locations, do not cause pain, but I can not imagine that a mass, almost 3cm by 1 cm imbedded “deep” in the medial retinaculum would NOT cause pain.  I can also understand why the feeling of a fairly large pebble formed by blood, capillaries and veins, and shoved into one of your knee ligaments might make you use the word “swollen” in error when you are 8.  It has to feel AWFULLY strange to have something IN there.

The question is – what do you do about it?  When I ask Meghan to straighten out her right knee, she can’t.  She can’t “sit like a pretzel” in school, and she can’t put her leg straight out in front of her.  Her range of motion is clearly restricted.

There are still “tiny feeding vessels arising from the distal superficial femoral artery. (Picture from http://www.orthopaedia.com/display/Main/Femoral+artery

Lots of arteries mentioned here, but the femoral is one of the large ones, that branches out.  When they did her surgeries, three of the times they entered through the left femoral artery, and pushed the camera over and down to the right knee. 

For them to say now that there are feeders from the distal superficial femoral artery, it seems that puts them right at the spot of the AVM.

So, now what?

I guess I am no better off than I was if I didn’t have the report.  Aside from feeling a bit empowered, I have NO idea if this means she needs surgery – or not.  I have no idea if it is OK to let this mass stay there, even though she can’t run, or jump, or do lots of things she wants.  Maybe it is OK, and we will just watch it – every 6 months like the thyroid.  Maybe it has to come out.

I guess I will find out tomorrow.

But, for Meghan it doesn’t really change her reality.  She will have pain and restrictions with or without the surgery.  This thing can easily come back – even if they get it all.  So for now every single step she takes is internally a painful reminder to her, of what she has been given to endure.

It is amazing to me how infrequently she complains – about anything.  She is my hero.