ET JAK2 Positive. Recently developed “dent” in top of head

[Newbie16]

Hi, I don’t think this is related to my ET diagnosis. But I’ve recently developed a “dent” in the top of my head. About an inch and half in length. Not really causing any pain as such, just I know it’s there. I haven’t had a bang to the head or any kind of trauma. It appeared about 4 weeks ago. About 3 weeks ago I had a fainting episode (whilst getting a pedicure haha). I’m wondering if anyone has any ideas what this could be…. I am planning on getting in touch with my GP, but just thought I would ask you lovely lot on here too.

Thanks Ellen.

[hunter5582]

While it may be something minor, a new dent in the skull is something that needs to be checked into. This is particularly important in light of the fainting episode. Suggest you get a proper assessment ASAP.

[Newbie16 in reply to hunter5582]

Thanks for your reply. I have made an appointment with my Gp, see her in 2 weeks. Hopefully it’ll be gone by then. I feel like I’m constantly at the doctors this past year since being diagnosed.

[Mostew in reply to hunter5582]

good job you noticed . Many wouldn’t .

[RedCardRob]

Sounds like you should not just plan to call your GP...do it.

[Newbie16 in reply to RedCardRob]

Thank you. I have made an appointment since asking the question. See my GP in 2 weeks. Hopefully it’s something and nothing and will be gone by then. I feel like I’m constantly at the doctors lately.

[Grateful333]

I'm not sure what that would be, but I'm glad to hear you're seeing your doctor. Please update us! 🙏🏼

[Newbie16 in reply to Grateful333]

I will do thank you ❤️

[Mostew]

Ps had fainting episodes but no dent .. just checked!

[Rst2dan]

I also have jak2 et had noticed a dent in my skull, I thought I had hit my head at some point, but looks like I should see my gp

[Newbie16 in reply to Rst2dan]

Oh really? That’s interesting. Would you let me know what your GP says please? My appointment isn’t until 5th September. Hopefully yours is before that!

[Lyndjs]

Hi,

I'm glad to hear you've made an appointment to see your GP, but sad you have to wait 2 weeks. Just a thought, have you called and spoken to the clinic team about your head? They may be able to check into this for you sooner. I am in the UK too, and was given a 24 hr help line to call. During clinic hours, it goes through to my nursing team and there's also an out of hours team at another hospital nearby.

I've not experienced this myself but I hope all goes well for you. Please keep us updated. Welcome to the forum, I'm relatively new, too, and very grateful for everyone's support here 🥰

[Sksarj]

I discovered a dent in my skull a few months ago and have thought nothing of it but having read the posts here will ring my doctor tomorrow. Could be something, could be nothing. I will be interested to see how other get on with the same condition.

[Charm33]

I have a dent in my forhead about an inch or inch and a half long and I mentioned it to my gp about 2 years ago (before I was diagnosed with ET jak2+) as it is directly above the eye that suddenly developed anisocoria (pupil won't dilate fully), never did get answers to that and still have the anisocoria and dent .. at the time they were not worried but right now as I'm typing this I'm wondering if it's all connected in some way 🤔 I will bring it up with my hematologist when I see them next.

[hunter5582]

A new or persistent anisocoria should be treated as an emergent condition. It can have a number of causes. some of which are more serious than others. It is not something to be ignored. The fact that you have a skull depression immediately above the affected eye is suspicious but it may or may not be related.

While I believe it is possible that a MPN could cause a neurological issue due to clotting, or to obstructed blood flow to the ocular nerves, this is not a common complication. It is worth asking your MPN care team about, however.

Suggest that a more urgent response is indicated regarding the issues you describe. You may need to advocate for yourself in this regard if it has previously been ignored. This is likely more of an issue to be reviewed by an ophthalmologist or neuro-ophthalmologist. It is likely outside the scope of a GP to resolve.

It seems you are not the only one to be dealing with these issues. Please do let us know what you learn and how you get on. Others can benefit from what you learn.

[Charm33 in reply to hunter5582]

I don't know how I missed this, I do apologise. To be clear, when I said I never did get answers I meant I had all the tests and investigations, including MRI, but no answers could be found. Glad it's nothing serious but I always hate not knowing a reason or cause. I have come to love my anisocoria, seen as It appears I will always have it now.

[Newbie16]

Hi just to update you all. I seen my GP on Thursday who wasn’t overly concerned with the dent in my head or the fainting episode. She discussed it with other GPs and got in touch with radiology, who said to wait and watch, if anything changes to get back in touch with GP.

[Sksarj in reply to Newbie16]

Hi thanks for the update. I am still chewing over whether or not to see my gp but I've just had a call to say I'm being sent for a ct scan for a dental problem and wondered if that might pick up any anomalies.