Chiari Malformation Community
Symptoms getting worse
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Symptoms getting worse

I was diagnosed about a month ago and I just continue to get worse. The pressure in my head is unbearable with migraines daily and at leaste twice a week I become very week and get the feeling of being almost numb and very disoriented and my head is very heavy and if I try to move I become dizzy. I have also been having trouble swallowing and my memory is horrible for a 26 yr old. I have been seeing a neurologist that said my chiari is not the cause of my symptoms because it is only 6mm and is only treating my migraines. I can't continue to go on like this and I am beginning to feel hopeless. I am taking topramax for migraines plus tramadol and Vicodin prescribed for pain but it still hurts. No pain med can take away the squeezing I feel behind my ears! So I guess my question is even though my herniation is only 6mm can that still cause these symptoms and if so can they fix me?!?
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620923_tn?1403798963

  Hi...there is no real "fix"...there is surgery, but not everyone with chiari is a surgical candidate.

Yes, at 6mm it is possible for it to cause symptoms and the issues u mentioned....but, u need a Dr that is well experienced with chiari otherwise u will not get newhere.

That said, chiari is a life altering condition and u may and may not get back to where u were b4, there is no way to know.,..it is possible u could have adverse affects, and Drs only suggest surgery if the benefits out weight the risks, this is a major surgery.

I tried most of my life to get a dx of what was wrong and once I did, it was a little over a yr b4 I had  surgery.,...this is not something to rush into, u need to educate urself on this, and research drs to find the right one.

  Make sure u do not have related issues...take ur time...and find a true chiari specialist.
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1968463_tn?1374761413
I am so sorry to hear that you are suffering. My thoughts are with you. As Selma said it is not the length of the herniation as much as if it is causing a CSF blockage. THe pressure can be absolutely unbearable. Try take a handtowel and running it with water as hot as you can stand and then place on the back of your neck. You have to rewet ofter but it provides an immediate relief for at least a few minutes. Good Luck and I hope you feel better. And do find a Chiari Specialist as they are the one that can take care of you the best :)
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2102221_tn?1333587274
I am having almost symptoms and I also have a 6mm herniation.  The neurologist that i see has not even given me anything for the migraines yet.  I have to have a neuro-psych eval tomorrow and then schedule another appointment with her.  I have asked my family doctor, who is also my boss, for a second opinion from a neurosurgeon, and he agreed that with my current symptoms it is the best option to at least have a second opinion.
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1925822_tn?1333709217
These post are making me always feeling so frustrated.most of the chiarians have to bear so much and take misdiagnosis and meeting doctors that wont even listen.the stupid thing is...if u have been checked up and down and the only thing that reveals is chiari why dont they focus on that...or a nl that says chiari is not the cause should at least be able to tell u then what is causing ur symptoms right!!! Why dont they start to listen to their patients and measure the stmproms instead of hernia.damn seems u really need a specialist.
I share a lot of ur symptoms and i am 2years older.i can feel how desperate u r.get an expert asap and keep us updated.big hug for u
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Avatar_f_tn
Thank you guys got replying. It's nice to have someone to talk to that understands. I have another question. When I wake up I have this feeling like my whole body is shaking or trembling and im very weak and it last the way for about an hour usually but today I actually had to leave work to come home because it hasn't stopped. Anyone else ever feel like this?
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620923_tn?1403798963

  Hi...yes, I had that for yrs...I felt it so much I thought everyone could see it, but at first no one could, but it is now visible...and I was told this is connected to my EDS dx which is related to chiari.

Have u been checked for EDS?
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Avatar_f_tn
No how do they check for that? Actually.. What is that? Lol
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620923_tn?1403798963


EDS= Ehlers-Danlos Syndrome
  There is a beighton test they do, check ROM of ur joints, look at ur skin, and a few other things....

we do have a EDS group here on MedHelp and there r links to explain what it is and how it can affect us. Here is the link -http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

And I am sure if u read thru the other threads here u will see me mention this over and over as it is very important to know if u have this as if can affect how u feel and heal post op.
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Avatar_m_tn
What score is required on the Beighton score to suggest you could have EDS? I know there are different types, but do you know the answer to this for the hypermobility type
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620923_tn?1403798963


  Since this is for hypermobility it can be a 3 or 4  as u do not need to be hypermobile to have EDS.

I had 7 out of 9 and there was no way I would try to bend down to touch the floor....I would get too dizzy and fall....but I do believe if u watch Dr Diana on the links in the EDS group here in MedHelp u will see she says what the score should be....if I recollect this  : )
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Avatar_m_tn
I am only a 2...I can bend my thumbs back to touch my forearm on both hands. But can't do any of the others...pinky, 10 degree arm, knee extension are negative
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620923_tn?1403798963


  Do u have the easy bruising, and slow to heal?

Something they do not include on the beighton scoring is the toes, but I can lift mine up, with no aid from my hands, to a 45 degree angle.....I thought this was normal....so if I got points for that...well...lol...lets say I have a few more joints that move oddly then what they look at....my shoulder dislocated as well as my hip and my ribs,....

what I am getting at, there is much more to it then just these few things they look at.....
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Avatar_m_tn
My doctor told me that nearly 20% of people are hypermobile...but that doesn't mean they have EDS. How do you discern? my doctor said from what he has read there is really no difference between hypermobiity syndrome and eds 3. He said if they are the same then it's as common as seasonal allergies

I think I heal fine. Never had a lot of bruising...
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620923_tn?1403798963

  The difference is, with EDS it is a connective tissue disorder allowing the joints to move so far....and they can and do move on their own, and sublex which can cause pain.

being hypermobile or just double jointed with out the rest of it, can come from training the muscles and the joints to move where u want, but u r moving them....

  So there is a difference....many times a Dr will say u have the start of arthritis when the swelling and stiffness can be from EDS....

  Again depending on the type one has will depend on  how it affects u.

  Those that have the vascular type do not always have the ability to move their joints  the way those that r hypermobile can...

U really need to be looked at by a Dr that knows EDS is not just about if u have hypermobile joints.
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Avatar_m_tn
What did you mean about your toes? Do you mean you can lift them off the ground 45 degrees? Is that considered abnormal?
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620923_tn?1403798963

Yes, and yes...lol...with the balls of me feet firmly planted...I can lift them...and I never knew it was odd...oh well...I guess all of me is odd.
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Avatar_m_tn
I can do that too...I thought everybody could :) huh
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620923_tn?1403798963

  Ask a few  people....no one in my family can do it....they all look at me like I am some circus freak...

  When I was younger I also stood on the sides on my feet...and when I sat my feet would also go to a position that they were on the sides...my MIL told me it was not good for me to do that, so I tried real hard and broke myself of it, but it was a natural thing to do...not that I chose to do it, I was not aware of it until she pointed it out.
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Avatar_m_tn
I can definitely do that...the toe thing...do you have stretchy skin? I don't at all as far as I know. But from what I understand in eds 3 often times there is not stretchy skin.
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620923_tn?1403798963

  It is not real stretchy, my one sister has it tho....

my skin is very soft, slow to heal, and I do bruise very easy....my DH calls me a rotten peach.

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Avatar_m_tn
Do you have type 3?
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620923_tn?1403798963

  That has yet to be determined.....the EDS specialist is out of state and I have yet to get there, plus I will have to go to a geneticist next as well.

Much of my dx's were put on hold after my PFD as I had my DD's wedding to contend with and $$$ issues.....

  I hope to get there this summer.
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Avatar_m_tn
So did they diagnose it purely off the Beighton scle?
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620923_tn?1403798963

  And from a few other things, I guess the sublexions and the bruising and the way my skin was...it is velvety....lol...sounds weird to say, but it is.I also have blue sclara (sp) whites of the eyes have a blue tint.
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Avatar_m_tn
Well I don't have blue sclera from looking online but I do have some hypermobility and joint pain... I would guess I have eds3... I believe my daughter does to as she was dx with hypermobility. I just read an article by a dr Ghent who is an expert in EDS and he says there really is no difference between eds 3 and hypermobiity syndrome. Seems like docs worry more about the vascular type. However it now makes sense why my chiari although small in herniation and apparently no crowding could be causing me more problems. From what u understand sometimes Eds patients do worse in surgery. Is that true?
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620923_tn?1403798963

  I do not think that can be a blanket statement...plus those with EDS tend to have cranial instability and can be the cause of HA's....and numbness...

But as for EDSers doing worse with a surgery, all depends on if u know and prepare b4 surgery...ie- if u go to surgery, have a PFD with a bovine patch after a duraplasty yes u may have more issues bcuz u have EDS...but, had u known the dx b4 and the NS used pericardium then u would not have had that reaction...so, many times it is what we know ans prepare 4, and Y I say check to see if u have EDS b4 surgery as it can affect how u feel and heal post op.

And I have heard some thoughts on EDS and JHS being considered the same thing, however...we all have to be evaluated to see how it is affecting us, just like we do with chiari...not all with low lying tonsils need surgery and not all with hypermobility have pain as a result...it is as individual as we r.
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700067_tn?1332992883
They diagnosed mine by using the scale as well as doing a tissue sample and a muscle biopsy (ouch!). There was some bloodwork involved, too. I'm double jointed, have soft skin, and a lot of joint pain but I have vascular EDS. I've had my uterus and gallbladder rupture so far. Hope that's all that does.
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Avatar_m_tn
I found out that i had a Chiari I Malformation back in 2004. I was told it was nothing to worry about that it was a malformation from birth. It was found by complete accident. I had numbness and tingling in the left side of my face and arm My face started drooping. In fear i was having a stroke at 26 yrs old I went to the doctor. They sent me for an MRI  which came up with angioma on the left frontal lobe, enlarged ventricular vessel and of course the Chiari Malformation. All the doctors and neurologist said its nothing to worry about. And I believe its because they were not having to live with the pain. Now yrs later i have pain in most of my joints neck up and down back and knees. I live in Columbus Ga and I think all doctors here are the ones that barely passed med school. I literally feel your pain and am so sorry that you go thru the same thing I do. I would put this on my worst enemy!!!!
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620923_tn?1403798963

  Hi and welcome to the Chiari forum.

Yes, chiari is a congenital condition, but symptoms cycle and can worsen after a fall , a MVA or even a sneeze...so to say bcuz it was since birth, that it is nothing to be concerned about is not a valid statement....

The biggest problem is Chiari was only found thru post mortems and they had no idea how it could affect us, the living...many of their reactions are due to the lack of info and instruction during med school....this is y we suggest u find a true chiari specialist they do their own research....

  Have u had a MRI recently? ...and do u have copies of ur last MRI? If not request copies and the report so u can compare a new one to....

  U will also want to be tested for a CSF obstruction, a CINE MRI....and also MRI's of ur spine to look for syringomyelia....EDS...etc...

Do take a look at our list of Drs to use to research Drs, u may not find ne in ur  area and the list is not a referral....http://www.medhelp.org/health_pages/list?cid=186

How do u feel now?
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