Stuff on the MHE tip.

I went to see a new Ortho.

I’ve mentioned somewhere, sometime before, that I have been without an Ortho for quite some time now due to my old Ortho deciding that he wanted to narrow done his field and focus mainly on the knee and sports medicine.

I was pretty disheartened when my old Ortho told me that he would no longer be able to see me.  I mean I had been going to this guy since I was 2, and he seemed to be very knowledgeable and extremely compassionate to my condition.

But you know, we spent 30 some years together he and I. . . I am sure he is looking to lighten his load and retire soon.  That or he was just sick me.

Anyways, that was like, 8 years ago? 10?

Since then, I have seen maybe one or two other Orthos whom I just haven’t felt comfortable with.  One guy seemed to rush me in and out and was just like yeah, you got tumors, I can take em’ out.  See my surgery scheduling nurse.  And that was that.

Um no.

I am not looking for more surgeries.

So I kinda just said fuck it.  I’m doing ok.  And went many years with out seeing what condition my condition was in.

However, now that I am getting older, I sort of have concerns and questions in regards to living with this disorder and how it will affect me as I age.  I am wondering how many of my aches and pains are actually related to my tumors and how many are just from getting older.

While I have always been a bit stiffer than most, it seems to have intensified.  What is that all about?  Do I need to uptake my calcium?  Do more stretching? Or is it just tumors getting in the way of stuff.  You know . . . which are caused by tumor issues, and which are not.

I don’t know what is “normal” aging.  Is that pain in my shoulder because I have a bunch of tumors caught up in ligaments and rubbing against tendons?  Or is it because I have some other “growing old” crap going on.

I just don’t know what to expect.

What does one living with MHE face while growing older?  Are we more susceptible to arthritic/bone problems?  Bursitis?  I mean, what do we need to watch out for and anticipate?  I know my risk for Osteosarcoma, (a type of bone cancer) goes up but what does that mean?

I don’t think there are any studies out there for individuals aging with MHE.

So I asked around in the MHE community for recommendations on any Orthos that were familiar with this disorder and who people felt comfortable with.

I was directed to check out a new guy over at a different hospital.

I made the appointment and was told to please bring all previous films/scans/records with me.

I just have to laugh at this.  All previous films/scans/records are about 34 years worth of materials.  But ok.  So I contacted my original hospital’s records department and requested that ALL of my information be sent.  I also requested that my films and scans be sent to my house.

I mean, I was kind of curious to see my bone structure and what was done over the years.

So imagine my surprise when my films showed up in a slim mailing envelope. (and the day before my appointment, so I didn’t have any time to look at them.)  They had sent a cd of my scans, which when you think about modern technology, it would make sense.  I was surprised though, that they were able to “fit” 34 years worth of x-rays, bones scans, cat scans and MRI’s onto one disk.

How savvy technology is!

Upon the day of my actual visit with the new Ortho, I checked myself in with the receptionist and filled out my paperwork.  Initially when I had made the appointment I had explained the reason for my visit.  I have a genetic bone disorder, which causes tumors to grow in and around the long bones and near joints and need to find a new Ortho to see.

Pretty cut and dry right?

Well not if you are not familiar with the above.

Which most people are not.

So when I handed back the paperwork I was required to fill out when I got there, I was informed that they would be taking x-rays BEFORE I went in to see the Dr. I was then asked which part of my body should they be taking x rays of.


Um, my whole body???

I mean, this is not an isolated occurrence.  Multiple.  Extosis.

Meaning lots of bony growths.  Everywhere.

So I told them. . . My whole body, and again, went into my whole spiel about my disorder to the receptionist, who had NO idea what I was talking about.  (And why would she?)  She then told me she was going to go ask the Dr’s assistant on what they should do. . .meaning, would he want to see me before or after the x-rays.

I was thinking that if this guy has seen patients with my condition before, why wouldn’t he want to see me first and get an idea of which areas could be a concern, and then send me off for x-rays. But that was not the case.  His assistant called me up to the window, where again, I had to explain what my condition was exactly.  She then asked me to name which areas of my body seemed to bother me the most. . . so I just blurted out my right shoulder, my ankles and hips, which have all been noticeably more sore and achy.

So those were the areas that were x-rayed.

Mind you, I am mainly coming to see this guy to get an OVER ALL view of what’s going on with my bone structure.

But whatever.

After the x-rays I was placed in the exam room where once again I had to explain my story to the resident, who did some basic motion .  . Er. . motions with me, to see if my . . .uh. . motion of certain areas was impeded or affected in some way.  (this would all be repeated again with the actual Ortho later)

The Dr didn’t keep me waiting too long, which was nice.  He seemed like a nice enough man.  Maybe in his mid to late 40’s? Again, I told my story.  He asked why I was there to see him after not seeing anyone for so many years and I told him that I just wanted to do a sort of check up and talk about what to expect, since I was told he was knowledgeable with this condition.

He sat me down and went through all the crap I knew already.  That this is an autosomal dominant hereditary disorder.  Which of the genes that it has been isolated on. . .so on and so forth.  He then explained to me since It is a hereditary condition, I would more than likely pass the gene on to my children (which I knew, and have made peace with in some regards, but to hear it again, I dunno.  It kinda made me sad.) He then asked me who else in my family has this condition and was very surprised to learn that I was a spontaneous mutation.

In all his years of dealing with people with this condition, he had never come across someone who did not inherit the disorder from a relative.

He seemed almost in disbelief.  It kinda bugged me a bit that he seemed so reluctant to accept that I was a spontaneous mutant, but he seemed to come around slightly.  He then again stressed the fact that since I was a spontaneous mutation that the possibility of passing the gene on was probably greater than the 50/50 that is normally associated with the disorder.

He also told me that after a person is done growing, then the tumors do as well.  Again, I told him this was not the case with me.  That I had tumors removed and they had come back.  Or at least I am pretty sure they did. . . I mean, I have had about 3 surgeries on my ankles alone to remove tumors.

Again he was reluctant with my response.  He retorted back that usually if a person loses weight, it can “seem” like new tumors have formed.  The pain that is associated with the area the tumor is around, is not because it is growing per se, but because it is pressing up against nerves, tendons or ligaments.

I again, told him that while yes, they do indeed press, impede and get in the way, that mine have also come back.  I then asked him to look back on the scans on the disk provided by the previous hospital I had gone to since the age of 2, which was given to him.

He told me that there were only the last 4 scans on the disc and nothing more, so he couldn’t get a good comparison as to what may have been in certain places before and if anything came back.

(Thanks Cleveland Clinic. . . I guess to them “everything” only means your most recent.  Most recent in my case would have been 6 years ago, which would have been 3 years after my last surgery.)

Oh, and they neglected to send my records over to him as well.

So no wonder the new Ortho and I were walking into this blind.

Too make a long story short (too late) he had me go get an MRI done of my right shoulder and hips. . .as I seem to be experiencing the most pain and stiffness around these areas.

So that is what I did last Friday.

Now I just need to go back and see what my results have to say.  My guess is gonna be that there are tumors.  Ha!  Er.  Eh hem.

Anyways, that’s my story, and then I kicked some guy in the teeth and then found five dollars.

Ok not really.  But it’s a good way to end a story.



2 Comments (+add yours?)

  1. pandaqueen1001
    May 24, 2013 @ 05:13:29

    Can you find another doctor who will take you more seriously and actually listen…? I mean, you’re the one who’s been living with your condition your whole life…


    • pixiegirlkc52
      May 24, 2013 @ 12:50:48

      Not many Dr’s are familiar with this condition, and if they are, I would have to travel, possibly out of state to a really good one. It stinks, but i guess it is what it is.


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