Is it painful??

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Offline Manal

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Is it painful??
« on: March 27, 2007, 01:56:33 PM »

guess this is a silly question, but does it hurt when the bones of the skull separates? Can the patient feel the deformation while it is happening, is bone deformation painful??



Offline Danielle

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Re: Is it painful??
« Reply #1 on: March 29, 2007, 03:24:36 AM »
Hi Manal,

It wouldn't feel like your bone is actually splitting, because it's a gradual process, but there is a kind of painful throbbing that can be felt when the marrow is being overworked.  I'm sure that there will be headaches and bone pain involved, but it would be gradual and not a shocking splitting pain.

Re: Is it painful??
« Reply #2 on: June 17, 2007, 07:41:58 PM »
Hello - Kim and Michael, here.  Michael is 52 years old and was diagnosed with Thalassemia a few years ago and he has not had any symptoms that we know of until recently.  Back in March, when he was washing his hair he noticed a divit, the size of your finger tip and about an 1/8" deep on the top of his head - slightly to the right side.  Over a period of a few months, that divit grew in length from the front of his skull toward the back and is now about 5 inches long with varying depths and widths.  He has also noticed a second that started on the other side of his head which is now 2 finger tips in length and a third just started and has pain associated with it.  He is experiencing frequent/almost constant headaches now and much fatigue. 

Michael went to our internist back when he first started noticing that his original divit was growing.  He ran blood tests that resulted in no change since the last test and ordered an x-ray of the skull which came back "normal".  (wierd, huh?) and now has had a CAT SCAN which also came back "normal".  We just find this weird?  How is this "normal"?  If you can phyiscally feel it, for crying out loud?!  The next step is to see a Hemotologist.  Since this is all so new to us, we don't have a clue to all the blood counts all you veterans seem to know off the top of your head!

How we even found out that Michael was Thalaseemic at all, was from the results of a routine blood test a few years ago which showed the white blood cell size as being smaller than normal.  His internist ordered another blood test for Thalassemia which resulted in a positive "minor" diagnosis.  All this after being married for almost 20 years and having a teenager!  We have yet to have our son tested, but will. 

We find all of this odd, as he has never experienced any symptoms as discribed in this forum before, or any that have been related to the Thalassemia, anyway.   We got on line today because we were wondering if his tiredness of late was Anemia possibly related to Talassemia, which we of course learned is quite common.  Now, we're still not sure any of the above is related, but after viewing this "Is it painful?" posting we are curious as to what started this particular line of discussion.   Especially with the pain associated with this latest divit that is now forming.

So, expalin why we shouldn't be freaked out?   Can a 52 year old recently diagnosed "minor" appear to suddenly become and "intermediate" or "major"?  This skull deformation seems to be more of a "major" symptom from what we can gather.  But with never seeming to have any symptoms prior to the last few months, we're just stumpped and not sure what to do and are just a little scared about this skull separation?  Will his brain become exposed?  I mean, what is going on here? ???


Offline Andy Battaglia

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Re: Is it painful??
« Reply #3 on: June 17, 2007, 10:04:58 PM »
The bone and skull deformities that occur with thalassemia, happen during the earlier years of life when the body is growing, so this can't be the same thing. Also, one can't suddenly become major. However, we are hearing many reports about health issues in minors as they age. When they said the scans were normal did they tell you that there was no change to the skull? Also, do you know what Michael's hemoglobin level is? I am sure at some point since they diagnosed thal minor that his blood has been checked so a hemoglobin level or hematocrit should be on his record.

I did find a blog that talks about this and has many comments from people with similar indentations. Unfortunately, most have not got any explanation for why it happens. You can read the comments at


All we are saying is give thals a chance.



Re: Is it painful??
« Reply #4 on: June 18, 2007, 12:37:32 AM »
 :welcome :welcome :welcome :welcome :welcome

 Stanza, Joan, Doreen,Kimmicheal.

I hope you do get the answers and in the process enjoy our company,
We are a great bunch and very supportive group of people.

  It is nice to know that you are well and you are doing the best you can   ,Without me saying you are loved and appreciated by all of us.
Remember you and Little Lauryn are part of this web-site family.It is so refreshing to know there is a place where we all can vent our fustrations.That is what make this site a special place with very special human-beings. :grouphug :grouphug :grouphug :grouphug
Kind thoughts to every one

Re: Is it painful??
« Reply #5 on: June 18, 2007, 01:17:36 AM »
Thank you, Andy.  Michael and I went to the blog and at least know Michael is not alone.  I have been wondering if his symptoms have been related to stress as we have just been through a particularly stressful family situation.  Funny how each person's stress can manifest itself differently - if that's even what this is.  I'm guessing you're right in that it doesn't have any thing to do with the Thalassemia, but we'll follow up with the Hemotologist and get those Hemoglobin levels so we have a base to work with.

Thanks for helping us find a related site.  We've been searching but clearly not using the right wording.  As we learn, we'll share.


Offline Christine Mary

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Re: Is it painful??
« Reply #6 on: June 18, 2007, 12:26:06 PM »
thank you kathy.

i do know how great you guys are. you are so understanding. i apologize for "lashing" out yesterday.

It was directed to society really. i shouldnt think im being judged here.  its just so frustrating, b/c there IS a little sense of guilt and maybe a little denial.... But my lauryn wouldnt be lauryn ya know?

I love you guys.

Lauryn's Mom

Re: Is it painful??
« Reply #7 on: June 29, 2007, 05:41:47 AM »
Well i was born with thal major and i am now an adult. I feel or think i have the biggest forehead in the world. Sometimes i experience throbbing like a migraine and other times there's a pounding feeling in the middle if my head. It isn't too painful motrin usually does the trick for me.


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