Symptoms getting worse

[Tharris85]

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?!?

[selmaS]

  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.

[Rahe28]

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 :)

[johnda_cm]

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.

[irislita]

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

[Tharris85]

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?

[selmaS]

  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?

[Tharris85]

No how do they check for that? Actually.. What is that? Lol

[selmaS]

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.

[seamatty]

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

[selmaS]

  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  : )

[seamatty]

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

[selmaS]

  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.....

[seamatty]

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...

[selmaS]

  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.

[seamatty]

What did you mean about your toes? Do you mean you can lift them off the ground 45 degrees? Is that considered abnormal?

[selmaS]

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.

[seamatty]

I can do that too...I thought everybody could :) huh

[selmaS]

  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.

[seamatty]

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.

[selmaS]

  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.

[seamatty]

Do you have type 3?

[selmaS]

  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.

[seamatty]

So did they diagnose it purely off the Beighton scle?

[selmaS]

  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.