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?!?

[girlinxile]

I just don't get it. Anyone having symptoms with chiari should be tested for CSF flow blockage. Why is that not immediately the first thing they do? Yes, people have chiari and never have symptoms. But with symptoms? It is the obvious next test. A lot of people could be saved years of misery if they would just listen... so frustrating!!!
I hope you get some answers and an NS will likely be a better choice than a neurologist. When the consult was placed for a Neurologist when they found the chiari, I was immediately rerouted right to a NS. The very first thing they checked was a CSF flow study. This should be protocol... I feel like I lucked out with a great doctor right off the bat.. unfortunately it took like 17 years of symptoms to get a diagnosis before all that. I wish you luck and get that second opinion. I had better luck with cold then heat...

[Tedde]

Thank you selmaS, I happen to chance on the Wisconsin chiari centre during my research and I contacted them. Am having my MRI result mailed to Dr. Heffez by tomorrow so he can give his opinion considering the symptoms am experiencing. Am happy to know am not alone in this. Thank you for the support.

[selmaS]

  Hi and welcome to the Chiari forum.

Unfortunately there are more Drs that are not well informed or experienced with Chiari then there are those that are....

Do you have a DX , and if so,  have you had testing to look at other possible conditions....lymes,Lupus, MS...etc....as well as blood panels to check for low levels of vitamin and minerals....

Cost is subjective to  who you see, what medical INS you have and what all needs to be done and length of stay in the hospital....so each of us may give a different amount.

You should be able to contact a Chiari specialist here in the States that can consult with your Drs there...that may help you get a full DX and treatment.....

Know you are not alone.

[Tedde]

I am new in this chiari thing. I have already seen two different neurologists who think am just imagining my symptoms probably because I have read extensively about the condition which I believe none of these two Drs know much about. Although my symptoms are not too obvious, they are significant enough for me to know that am not myself like before. The worse of all the symptoms is the palpitations and tingling n numbness. I am getting scared of what symptom I might wake up with. The worse part of it is that, there are no chiari specialist in the country I find myself in (Ghanaian). I really need help..... Can anyone tell me the cost of the decompression surgery?

[selmaS]

  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?

[klum]

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!!!!

[bledpub]

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.

[selmaS]

  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.

[seamatty]

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?

[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.

[seamatty]

So did they diagnose it purely off the Beighton scle?

[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]

Do you have type 3?

[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]

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]

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

[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]

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

[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]

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]

  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]

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]

  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  : )