Skull shape Changes

[Chrissie10]

Hi all, I am not sure if I am going a bit batty, but I think that my skull is changing shape, with bumps and ledges that I am sure were not there before. Generally the changes seem to be behind the ears and back of the head going into the neck. Is is just me going loopy or has anyone else had experience of this?

[Geoff_mpnfamily]

Hi Chrissie10,

That would be something enough to call your haematologist and possibly a trip down to your GP.

Based on that you have declared in your profile that you awaiting confirmation of Primary or Secondary Polycythaemia i strongly recommend you seek medical advice, because if the're changes in your skull (Based on what i was told while i was going through all the tests my self for Polycythaemia) You need to mention it because it could be the cause. And there 'might' be a cure / fix for it. (Don't get your hopes up [YET] ) but everything is worth investigating.

Are you experiencing head aches, black outs or fits or anything like that since before during or after your initial preliminary diagnosis? (Obviously you experience most if not all the other symptoms like everyone else with Poly, but it's a good idea to make a list to take with you to your haematologist: Break it down into common & known symptoms as best you know, followed by others unknown like the changes to your Skull Head shape behind the ear, head and neck etc...)

I have never experienced this myself. (Lumps or swelling on / in the side / back of my head)

I Have Secondary Polycythaemia and i spend a lot of time looking for anything that might be the cause. After over 5 and a half years of this i wish i really knew what it was.. But it has come to light that my cyst (Somewhere awkward to explain ) might be the cause - but their are mixed views about it. I assume it's a 50/50 chance that it could be the cause and stop (When operated on) the Polycythaemia.

Growths in the Head, Liver or Kidneys can cause Polycythaemia (Secondary) as can a COPD (A lung disorder [Hence the X-ray assuming you've had that now] there is a lot more to the latter subject than declared here.)

I hope this helps and at the end of the day "If in doubt check it out!"

God Bless you

Geoff

[Boomer1959 in reply to Geoff_mpnfamily]

I’m headed to the Mayo Clinic tomorrow I had a feeling it wS my teeth. I will post anything I find out

[AllieK in reply to Boomer1959]

Hey, I'm new. I have similar changes and feel like I'm absolutely crazy. But I know there's changes. I have TMJ. Also have had an abnormal ANS this week. It's parasymtomatic something.. may not be related but it's neurological. Please tell what your results from mayo clinic. Thanks

[Geoff_mpnfamily]

P.S.

I am due for an op now but no date have been set yet. Hopefully after Christmas.

P.P.S.

I asked a dumb question in my post - are your experiencing headaches? Of course you are: you post it a while ago..

(I'm Glad we have the history here @_@ )

[Chrissie10 in reply to Geoff_mpnfamily]

Thank you Geoff for all of your advice, it is greatly appreciated. I hope that you get your op date soon. Yes I have still got the headache that started 3 weeks ago, its not a bad one, just niggling and there all the time. I am back to GP for repeat blood tests next week, so will probably mention the head bumps then.

[Nirbhebe]

Hi Chrissie,

New to group, just read about your head...ouch. I'm wondering what your doc said? I have an odd change in my skull that I check in on but have never mentioned to my doc. Symptom-o-Rama with MPN's I often am left wondering....what's a symptom, what's aging, what's a side effect of HU....etc. anyhow. I hope your headache has left and you got an answer about your shape shifting skull...blessings

[Chrissie10 in reply to Nirbhebe]

Hello Nirhebe, Well GP said she didnt know what my head shape is normally so couldnt comment. Headaches are still ongoing - weeks and weeks now. Consultant has ordered a CT scan which I have on Thursday next week, so will see what comes of that.

[Anya88]

Hello Chrissie! My name is Anya and l am from Ukraine. l live in states about 5 years and last months l can see that my skull is changing. l dont know what to do. l went to doctors and had ct but nothing wrong there. Doctors think that l am crazy but l see changes in my head. Please let me know what you find out. Thank you!

[Alienmind in reply to Anya88]

The pineal gland might be expanding along with the crown. It is actually nothing to worry about believe it or not.

[ash_]

Hi. I have experienced the same over the last few months. My wife has noticed the difference too. But I suffer from epilepsy (nights only) and the change happens after a seizure. I have decided to tell my neurologist next Monday. I'll tell him there are a few others who want to see him too.

[light]

Hi, like you I have noticed same thing on my skull shape, bumps and ledges. I first noticed on front of my head and ow I have checked back, as you said behind ears and there changes there too. Will talk to my haematologist in my next appointment. Shear with us after your CT scan.

Wishing you well

[CaseyM]

hello

[CaseyM]

Oh boy, I hope you are still checking in on this forum. I know exactly what you are talking about. I have experienced the same condition in my head for 3 years now.. Severe changes in the size and shape of my head.. it starts with the hairline and scalp and pulls backwards and create bumps in the back of your head. It is fairly common but with cases like ours, they need to be addressed if you can't look over them because of pain or insecurities. It starts with TMJ, which is a condition in which your teeth don't bite evenly, either from complications with wisdom teeth or the removal of wisdom teeth.. or root canals. When the teeth don't meet evenly, the disks in between the jaw joint move out of position and loosen the jaw. When doing strenuous activity, this situation becomes much worse. My head changes on a minute to minute basis believe it or not.. it has gotten that bad. Catscans and bloodtests won't tell you squat. You need an MRI of your neck. I got one 3 years later which happened to be this past week. It showed I have a bulging disk in my neck and it is pinching my nerve.. which is pulling on my scalp and pulling the muscles in my head backwards. Although this is somewhat common, found in many men that have shaved heads from bad hairlines etc, my case is so bad that I am in constant aches from my pinched nerve and I have been prescribed cortisone pills. If they don't work I must do cortisone injections, and if not, neck surgery. I really hope you still check in on this because after years of being called crazy by doctors and my family, and being told "the head doesn't change shape" 1.5 million times, I finally have the diagnosis. I hope hope hope you see this and that this helps people because Ive been suffering for years so badly and nobody deserves what I have gone through.

[vtsu in reply to CaseyM]

hi. iv'e been experiencing tmj over the past few years. it's only getting much worse.though i am able to handle the pain it's causing by doing exercises i'm really worried about the mis allignment of the structure of my face. can the head get back to it's normal size and shape?

[norianl in reply to CaseyM]

Hi CaseyM, I was wondering if you had/have headaches too. I've noticed changes in my scalp, indentations mainly. My other symptoms are tmj clicking, neck grinding, bad headaches, sore/painful scalp, ear pain and some dizziness. I've had an mri of my brain, eeg, ct scan of my sinuses, ears checked and nothing. I'm due for an mri of my neck next week, but I've been very worried. Pain killers don't help. Thanks!

[AllieK in reply to norianl]

Omg this sounds identical to everything I'm going through!

[LVNative13 in reply to AllieK]

I am too! I thought it was my fibromyalgia progressing, but the major shift in my over all skull shape and the new depression and sensitivity have made me nervous. I think i may have TMJ as well but it's undiagnosed at this point. I'll update after i see my GP.

[dirtbikedestroyer in reply to CaseyM]

Hello CaseyM, I have the same problem, if you can get ahold of you ?

[loglegmomma in reply to CaseyM]

did you find relief from the cortisone injections?

[royathelegend in reply to CaseyM]

hi! my name rohit u can call me roya i have some question for u. i read your post i am convinced with u but my problem is not only about my head my full body is changing shapes. first my head nerves pain little then it goes through whole body till my feet slowly slowly its changing shapes. i am 24 yrs but my i feel i like i am too old. my doctor say its all in my head, i think a lot that why it is. my half body has change shape from inside and half is remaining little bit. i m really confuse what to do. main note i was drug addictted but now i dont do anything but then also its not helping. pls if you understand my problem pls help me out pls. what said about the jaws and neck u were going i am also in same case but with that my whole body is changing and being to be weak. pls pls pls pls help me out

[Kanic in reply to CaseyM]

I really need to show your explanation to somebody who will listen because this is PRECISELY what I am experiencing!! Neurologists at the hospital think I’m crazy they have blamed poor sleep and try to tell me I’m depressed when I’m not - I’m just so sore all the time and have terrible headaches which is why I see the neurologist! They stick me on all sorts of “trial medications” which is absurd given they haven’t even run any tests. I’m so relieved to see your description.

Question - did you get any grey shadows on your face (or skin next to the bumps), and also is there anything you successfully did to treat it? (Did you treat the TMJ, get a dental device??? Etc)

Thankyou again!

[Kanic in reply to Kanic]

Sorry I also wanted to ask if you experienced a decrease in your overall height, because I’ve also shrunk 5cm in a year.

Between skull changes, headaches, tinnitus and my body shrinking - no wonder I have muscle pain everywhere. I just want to stop it - I’m so terrified of some degenerative issue being the cause.

[AllieK in reply to CaseyM]

Casey, I'm new. Please update your condition. I think I'm just losing it. I've got same symptoms and so concerned. I'm looking for a neurologist now. I had an abnormal ANS and so don't understand. It's PADS Parasymtomatic

Something.. ugh I can't remember the name of it. It may not be related but this is neurological.

[coleenBuchanan]

Yes I am sixty three and my skull is changing.I don't know why was hoping to get info on this site.

[oddhead in reply to coleenBuchanan]

Hi Coleen, what kind of changes do you have? Mine are in the bones.

[coleenBuchanan in reply to oddhead]

In bones and by the way my jaws have never lined up and has caused my jaw to get locked in mouth open position.had to hit under the chin to get it to close and I get sharp pains in ears allot.

[PurplePresley in reply to coleenBuchanan]

You could possibly have a condition called Temporalmandibular Joint Disfunction Syndrome, TMJ for short. Best to see your dentist, or Maxillofacial Consultant for a diagnosis.

[oddhead]

Hi Crissie,

I have similar changes, no pain or anything. I just notice the ledge (rise) from my forehead to crown when I touch it. Weird. I'm am little elderly, the change is new.

[scott22]

Hi i have the same thing, big bumps on the back of my head right on the creases of my head. I dont suffer any headaches at all. My local barber 1st noticed this and advised me to go to hospital, so i did and they took a scan and said nothing was wrong. my head was never like this and seems to b getting worse. I dont know what to do as it doesn't hurt at all.

[Kolangosapine in reply to scott22]

Hi have you thought that you may want to look at fibrous dysplasia of the skull?

[Majellab]

I too saw my doc a month ago and mentionec ridges and raised areas running along the suture line of my scull. I swear its never been like that before and feels really pronounced. I know its new cause I have a severe hair dye allergy i developed 10 years ago and now use henna and indigo. I know what mt scalp feels like normally and this aint normal. Doc was not fussed so im going to try another doc to see ehat they say. Any updates from others would be good

[Abhis]

Thankgod !! There are people who would believe me on this.

I have been observing change in shape occationally and specifically during headaches.

None believed me on this.. But, I was sure it's happening on the roof top.

I am glad.

Cheissie, I would be happy to hear about the remidies you would have adopted.

Regards

Abhi

[Kolangosapine in reply to Abhis]

Hi abhi it may be fibrous dysplasia

[loglegmomma]

My osteopathic doctor said your bones are supposed to move, but mine don't. Maybe that's why I have an egg sized lump on the back of my skull?

[Kolangosapine]

Hi maybe it's fibrous dysplasia of the skull?

[Lmmcq]

I have noticed similar changes to my head as those mentioned here. Doctors and family seem to think I'm crazy, but I can feel the changes. I have suffered with migraines for years but they have recently worsened. Supposed to get an MRI of neck but insurance had only approved the one for my back so far. Have to go back to PCP to get new authorization request put in. At least seeing that others are experiencing this too I can know I am not crazy.

[pinkk]

I'M so glad to see this post` wish it told what was the outcome for Christie?? I wondered if it was ever like this before and I just didn't notice on the left back of head is a good sized lump, with major headache for 3 weeks , MRI ordered , pain Dr. Gave trigger point injection and said my neck felt like a rope+, TPI numbed it for part of a day and then boom! Back!, i'M sure I have TMJ & bruxism, realize I'm grinding my teeth and try to quit all the time, 800.00 co-pay for MRI, I might be 90 before I can get it, ugh! Lol! Thank you all for sharing your thoughts on it

[Cephenrene]

Hi... My fiance have been experiencing all these and well, him having anxiety I didn't want to believe at first but as I've checked online, and found this, it's kind of scaring me...

Chrissie10 , I pray you have been doing a whole lot better.

May I know what your current situation is now after all the things that was checked?

I would really appreciate an answer...

Thank you in advance and God bless!

[tatty123]

Hi. I've had changes in the shape of my skull and found some parts felt soft. I have just recently discovered another one.

I did have a head CT scan 3 years ago and I was told that the soft bits were benign lesions. My neurologist said they were fine and needed no treatment.

I may possibly go back and see him again due to new change.

Hope this helps.

Natasha.

[Stingers]

Same thing is happening to me my doctor seems to think that am crazy.

[Boomer1959]

Going through that right now it’s doing me nuts supposed to go in today but MD had to postpone

[hellbender12]

I have found since i was around 50 years my head feels like an outward helmet shape behind my ears and the lower area near my neck.. I have noticed visual changes more than usual as well.

[Ellis76]

Dear Chrissie10,

I have exactly the same problem been monitoring it myself for the last 6 years and been to the doctors but was just sent away telling me it was nothing our skulls are made up of plates and not all skulls are the same. Basically not listened to at all. But i have had problems with headaches and migraines too for years and recently balance issues and eyesight changes but just put them down to age. But there is always that niggling that it could be something more but don't want to sound like a loon to everyone.

[Hidden in reply to Ellis76]

I had the same from my GP,Since around september ,my whole head changed shape .I already had a "Widened forehead" with bone pain and possible nerve pain in bone of skull and facial features. I went to my GP who said the same "its the plates of your skull"and in a telephone consultation on tuesday he said " i am standing by my decision -it is not Pagets Disease".I never suggested I thought it was Pagets Disease although everything points to Pagets Disease.I had a few days when I could not get out of bed for pain and what i can only describe as "heaviness" and another day had to go to bed because I could not function,I suffer with dizziness and tinnitus-hearing hissing sounds and diagnosed with hearing loss.I too am really worried it is something serious that needs investigation and know my GP will not take this seriously,He keeps on about previous scans being normal but these were after the changes to my face and skull first occurred-around 2011.I have been fightign this long to get a diagnosis and still do not have a diagnosis.