Chiari - Aneurysm

[bean418]

Does anyone know if an Internal Carotid Artery aneurysm can be related to Chiari or has actually had that situation ?

[selmaS]

  I felt the same way when I finally got a DX and a surgery date, but the day of I was still scared...it was the journey to figure out what was wrong and the kindness of my anesthesiologist that helped those few minutes b4 I was put under....It is normal to be scared and to not feel scared as we all want to feel better and empowered to make that happen.

  I too was told I had migraines and given meds for them when I was in high school.....

There are more of us with it then those that have MS....and that fact was stated by Dr H in MD.....

[bean418]

At this point I don't think the decompression surgery seems that scary.  Perhaps it is finally just wanting to help and hope rid some of these symptoms.  

Never have had swollen legs but have def had burning in legs.  Was given prednisone and a referral to the neuromuscular clinic.  DX was migraines !
OK.  I am not convinced that migraines make me feel like a constant motion sickness though.  The instability thing yes, migraines no.  Not buying it.

I had a friend that had all this same stuff.  Hashimotos dx after birth of son, fatigue, joint pains, migraines, vasovagal syncope, palpitations, etc.  She was in a car accident years ago.  Kinda makes you wonder.

[selmaS]

  Yes, I have EDS and I understand that is a rheumatoid issue as well as raynauds phenomenon....no RA at this point and praying it does not go there....but I do have days where my hands feel like they are swollen and diff to move....like sausage fingers....klutzy....lol..I also have had recurrent swelling in my legs and feet....not sure what that is....

It deff is scary, just like having the decompression surgery.....but I feel if u have the right Dr he/she will be able to put ur fears to rest....or at least to a point u can trust them ....still having some fears as I feel that is normal.

[bean418]

Actually just reading through these papers for appt. tomorrow and one of the question arises several times of connective tissue diseases for yourself and family members.

Then I downloaded the Cerebral Angiography booklet they emailed to me and under complications one of the issues could possibly be suffering from a stroke if a piece of plaque should get broken off while the catheter is being inserted through.  Woahhhh.  I do know that I had non flow limiting plaque in the carotid arteries in 2012 so this is pretty darn scary.

Even scarier that my brother recently suffered a stroke due to plaque coming off his carotid artery and it also caused permanent vision loss in one eye.

Maybe they can give me an MRA instead. Wishful thinking again.

Good point regarding acquired and condition to flare.  I am aware that my knees go back a little more than usual however since all this I think they go back more and I have hyperreflexia.....at least that is what I think since the dr. just barely misses getting kicked when the relflexes are tapped.   In addition, my last neuro exam gave me a 3/5 for left hand grip which I thought was odd because I am left handed and felt as though strength was diminishing in the rt hand as my finger in the rt hand sometimes cramp up.
Yikes....it's all just too much.

Do you have any rheumatological issues ?

[selmaS]

  Well I had no idea I had EDS either until I was DX'd with Chiari at age 48.....I always thought something was wrong but , I never was DX'd....

I had been to a rhuematoid Dr in my teens....not sure they have a clue unless they specialize in EDS...just like NS's that do not understand Chiari...

That is what I understand, I was told not all with EDS need a biopsy....just those they suspect have a vascular type.....

I do not think acquired Chiari can cause u to have EDS....I would rethink if u have congenital Chiari that an injury triggered symptoms and the condition to flare....

[bean418]

I know right....if it is hereditary than the question would be to me who in my family has had this.  Can not think of anyone at all.  My father is the only person that I know had surgery on his lower back, had lung cancer and died of cirrohsis of the liver.  Paternal grandfather and paternal aunt had lung and bone cancer.  Paternal grandmother heart issues, scheduled for surgery next morning and died that night so not exactly sure what happened with heart.  My mothers side is basically stomach problems and dementia but all live in their 80's and maternal grandfather was stroke, heart issues but lived to be in 70's.

That is another ? is wouldn't I have know any sooner if there was a vascular form of EDS or EDS at all.  I am hoping it is just a kinked carotid artery to be honest.  I am also sure that they are going to do the wait and see approach so I will sit on the edge of my seat for another 6 - 12 months.  I have had so many rheumatological workups already.  Can a PCP test for EDS/vascular ?  I know my primary is great and if asked he just might do it himself.  

A skin biopsy will tell if it is vascular ?  Very interesting.

Do you think an acquired Chiari can bring on EDS ?

[selmaS]

  First, do not assume u have the most severe form of vascular EDS....if u had, symptoms would have shown up sooner....

And yes, they can still do surgery even if u have vascular EDS< there are precautions they take with ALL of us EDSers....

I will ask another member that has vascular EDS and had the decompression surgery to contact u.I am not sure about the Cerebral Angiogram.....something that ur Drs should be able to answer u.

With this form of EDS u most likely will be sent to a geneticist for a skin biopsy to determine exactly all that is involved...

A Chiari specialist should be able to test u for EDS and refer u to the right rheumatoid Dr for more testing or a geneticist .

[bean418]

Perfect....that is all I need to add to the list of problems.  I read people with vascular have an age span of 48-50.  

I wonder if they still perform the Chiari surgery on people who have EDS vascular.

The NS team in the hospital claim they are not sure now if it is an aneurysm or what it is....took the films to my consultant....he agrees with the team.  Tomorrow is the appt. with aneurysm specialist and will see what he has to say.  I also read that people with vascular EDS should not undergo invasive testing such as a Cerebral Angiogram which is what they are setting me up for.  This should be interesting.

I still find it so hard to believe that I just have so many medical problems after on incident.  Very strange to me.

How did you get tested for EDS ?  Is it a lengthy process or just a blood test.  If blood test, I would guess it is genetic and would that mean the results take weeks to get back ?

[selmaS]

  Hi.....these Aneurysm's can be associate with Ehlers-Danlos....I believe the vascular type......I had a ultra sound of my Carotid arteries to rule ne issues out...having palps and other symptoms, they did find thyroid nodules during the US tho....so, it was beneficial for the testing even tho my arteries were clear.