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NOCA Please Read
4 Replies
tnichel - March 10

Noca, thanks for responding to my rant last week. I have a question/s about your bone tumors. How long have you had them? Can any of them be removed via operation. My doc wants to send me to a ortho surgeon for a 2nd opinion but thinks it's nothing to be concerned about. I beg to differ since I've been having bone issues since high schol (I had stress fractures in my legs). However, I'm also fed up of running to docs so I've been in no rush to schedule an appt.

Also, a new symptom started this past week. My right hand (the arm the tumor is in) just goes numb for no reason. It happens mostly when I'm up and moving around. My last three fingers go completely numb. My thumb and pointer finger tingles but doesn't always go numb. I've also found a lot of knots in my forearm and just above my elbow is really tender. I just don't touch my arm above the elbow b/c it's so sore.

Any info you can provide would be greatly appreciated. I've tried to research the tumors online but didn't find much. I think the doc said the medical name is endosteal sclerosis. Everything I pulled up taljked about lymphoma. Thanks in advance!

 

Noca - March 10

I have had the disease MHE since birth. My tumors(called exostoses) grew along with the rest of my skeleton. When I stopped growing, so did they. I've had 3 bone surgeries so far and need about another 5 surgeries to remove the most painful tumors.

My bone tumors cause pain via inflammation, soft tissue trauma, nerves being pinched, and vascular deviation.

My bone tumors have at times caused numbness through nerves being pinched to the point they stopped working. During my surgery on my right front ankle, a nerve was destroyed. I can no longer feel the left side of my right foot anymore for the rest of my life. This is the main complication that can arise from surgical removal of the bone tumors.

Since I have sooo many tumors, its impossible to remove them all without causing serious nerve damage throughout my body. I am going to see a plastic surgeon in a few months to do my next surgery which is on my left hand. There is 5-6 tumors that need to be removed. My only fear is my hand or parts of it going numb.

With MHE, I have a 3-5% chance of having one or more of my tumors turn malignant in my adulthood. This rare type of cancer is called Chondrosarcoma.

Feel free to ask anymore questions.

 

tnichel - March 11

I'm am so sorry to hear you are dealing with this condition. I'm familiar with it from my research. Are the tumors on your bones or inside you bones? Do the tumors continue to appear? I was on prednisone a couple of months ago. My doc said I had imflammation but none of it was visible except for in my right hand. Oh, and where are the tumors in you left hand? I swear I have one on my thumb knuckle but the docs always blow it off. I swells up so much sometimes I can hardly move it. Thanks agan for responding. You are in my thoughts. How in the world do you stay positive.

 

Noca - March 11

Some tumors are on the outside and some on the inside of my bones. I had 4 tumors fail to remodel themselves and have since disapeared from my ribs. Only one new one that appeared and its on the inside of my ribs.

The human skeleton totally replaces itself over a period of 10 years. The tumors I guess weren't replaced. If only I could control what gets remodeled and what doesn't, I could cure myself in the next 10 years.

The tumors in my left hand are in the following places: 1 on my 3rd digit joint of the pinky finger, 2 on my 2nd joint middle finger, 1 on my joint of my pointing finger, and one at the joint of my thumb/hand. There's also 2 on my wrist on that hand as well.

As for your question on how do I stay positive? I'm not positive all the time, but when I am, its because of help from you guys on this board as well as my health care team and friends/family, poor memory(I forget about my problems sometimes), and a little bit of denial and acceptance in there too.

If you have a tumor on your thumb, ask for an x-ray or sometimes the tumors are able to be felt with just touching them with your hands.

Hope this helps.

 

tnichel - March 14

You know, I think we'd all be in a world of trouble if it wasn't for this website and the friends we've made here. It keeps me sane. That and the denial I tend to go into when I'm feeling better.

Thanks for the x-ray suggestion I will bring that up. I see an orthopaedic surgeon on Tuesday. I guess that's a good thing b/c that arm is now hurting non-stop. If there's any questions you think I should ask please let me know. I'm pretty outspoken until I get into a doctor's office. Then I'm an emotional mess and always forget what to ask. Thanks again for all your help. I hope your having a good fibro day.

 

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