Weird scalp skin, chiari related??

[turk911]

Hey Chiairi Clan...remember me?  My daughter has a chiari 1 malformation, but Docs don't think it is the cause of her headaches...we have seen 2 NS and one was ignorant and the other has scheduled a CINE MRI for July to document any changes and see how the spinal fuid is, but she feels her headaches are not chiari related.  So, we went to the Neurologist who I loved right away and he was awesome...he looked at her MRI and agreed that her headaches are probably not related to Chiar, but we should have another one done of the spine with contrast.  Anyway, she is on migraine medication, which has helped very little, actually marginally.  But we are still getting established and I guess it could take a while.  Ok. so that is the background. SO I never knew anything about Chiari until my daughter, but when I read the stuff for her, I felt like it could apply to me...  Frequent headahces, I can never match my words with what I need to say, or i forget it, neck pain, numbness in my feet, vision headaches in my left eye, permanent vision loss in my right eye (but no doctors know why) and my Doc htinks I have scoliosis...which is weird I am in my 30s anyway serveral of these vague symptoms.  Anyway I have not pursued this at all, but have a question about something interesing...at the back of my hairline, where your neck disappears into your hair, in the center/back of my head, I have an upside down V like that is a redish patch of scalp.  ITs the only place and it doesnt' itch or anything, but my head is often sore or achy in the back...anyway, I understand Chiari is often hereditary and I have started to wonder if I could be the source...when I saw the red scalp I had a real red flag moment, but don't know why...I recieved great input regaring my daughter on here and I thought you may have some suggestions!

[ZipperHeadHabits]

I was diagnosed with Chiari Malformation last year. I as well have a reddish rash like birthmark at the nape of my neck, right where the malformation is. They do not know very much about this condition so they probably have not looked into it yet. My daughter also has the mark, it scares me as well and I have thought about that being a connection or possibly an indicator for doctors to research the condition. I wish I could tell you the answer or to know one in return. But they may be related, they are not sure if it is heridetary or not either. Frankly, they don't know where it comes from or what it is linked to.

[teegs93]

Did you ever follow up with this for a diagnosis for yourself?

[selmaS]

Hi and welcome to the Chiari forum.
Since this is an older thread you may want to post a new question . This member may no longer be active here.....

[teegs93]

Okay thank you :)

[mikeysmom1995]

Hi there,
I too think that it can be heriditary as my son has it and so does his first cousin. I do believe that my husbands mom has it but was never dx'd with it, instead dx'd with fibromyalgia and migraines.  These are dx'd sometimes by mistake instead of chiari as symptoms are similar. Hope you can get to the bottom of this, sorry you are not feeling well.  Will pray for you and your DD.
Barb :)

[selmaS]

Welcome back !!!

The skin rash can be a chiari related issue, so deff get checked.I am so glad to hear from u again, but, not so much that u feel u may also have it...I pray u don't !!
And do keep us posted on both of u : )

"selma"

[turk911]

Thanks so much for all your input, I appreciate it.  I may have to pursue this in the future, I am just watching and waiting to see what happens with my DD for now.  Perhaps these vague things are just that.  About my vision loss, I did see a neuroopthamologist and he found nothing unusual in the optic nerve at all.  In fact, I have seen 7 docs trying to diagnose this issue, but nobody has ever seen it before but it seems related to the retina.  I see a specialist once a year and when I see him this year, I plan to ask more specifically about my vision loss being a symptom vs. the issue...thanks so much for all your thoughts on this matter.  It just makes me wonder, but like cmoeller said, I could be on hyperalert.  My curious nature is a blessing and a curse!  I check back on here on occasion and will keep you posted on my DD for sure!

[cyberpyxi]

My eye doc said that Chiari's can cause vision loss, due to the pressure and fluid buildup pressing against the eye and squeezing the optic disk. When this happens, oxygen and blood are reduced or cut off from the ends of the optic nerve... thus, blindness.
She said that it could be temporary, or perm. due to the duration of the "squeeze". If your docs don't know what caused the vision loss, and you think you may have chiari's, you should def. look into the relation. One thing my eye doc mentioned is something about my optic nerves being flat, which I took as a good thing. It was an indication that they were healthy, other than the disc hugging them tightly.
Don't know if this info may help you or not... but it may be something to look at.

[*Stormy*]

I'm not sure about the rash either but I have found some info out there that nerve damage can cause skin rashes. Just google "neurogenic rashes" and some info will come up.
There is varying info on hereditary of Chiari b/w what doctors say and what is actually happening. I was told it was not hereditary but ever since I have got to know others with Chiari I find that there is proof to say differently. I have run across several families that have it in their family, in fact, so many that I don't know why someone hasn't done more research into this. With your daughter being dx already I would think it is a good reason to look into for yourself.
I know how you are feeling though, when I was first dx I could see signs in everyone in my family..they would say my eye twitches or my muscle keeps cramping all day..and I would go into a private panic mode!! So for now, I just brush off these things and keep watch for anything continuous. We have the advantage of knowing the warning signs.
I really hope that all goes well with your DD and that they find something to help ease the pain :)
Carolyn

[rod44]

Hi, I dont know if the patch you describe on your neck is a sign of CM but it is something that you should have checked, if their is a suggestion of scoliosis then an MRI should be done to get a definitive DX and to check for other related conditions.
I dont know if CM is hereditary, maybe you could ask your DD doctors about this.

I get patches of skin rash on my back and feel it is related to my CM/SM.

Ray