Is this typical treatment?

[jamiewith4]

I'm a 35 yr old mother and critical care nurse.  I have Ehlers-Danlos hypermobility type, advanced arthritis and all of its problems.  In late spring I began having odd neurological symptoms.  Before I only had EDS symptoms and migraines.  These neuro symptoms began with bilateral hand weakness, bells palsy with facial droop, and a change in my headaches.  By today I have a long list of weird things I've started to do.  If I can, I'll add them to the end of this post.  My geneticist sent me for an MRI w/wo contrast and told me to find a neurologist.  With research, I suspected chiari. I fit perfectly except for the posterior headaches.  Mine are temporal, behind my eyes and across the top of my head.  My mri was read as normal but, being the nurse, I had to look.  I didnt see a chiari but I saw what looked like crowding.  I contacted Dr Tews office at the Mayfield clinic, talked to his assistant, gave him all of my symptoms and forwarded the disc of my MRI.  They contacted me a couple of weeks later and sent me for a CINE mri.  This mri showed implaired csf flow around the tonsils.  Dr Tews office called a couple of days later and had me in for an appt within days.  Of course I suspected the worst.  I met Dr Tew yesterday.  He drilled me about my symptoms, spent a lot of time staring at me when I ran out of answers or forgot them ( i forget everything lately), then told me the answer to my problems was weight loss.  Yes, I'm overweight.  Again, I'm a nurse.  I know the risks.  He lectured me about my weight, told me that I wouldn't get better unless I changed to a plant based diet.  I asked him if I do or do not have a malformation.  He told me that I have a 3mm chiari herniation and mild csf blockage. The only answer I got after that was weight loss, weight loss, weight loss.  Now, I saw my cine mri.  I saw my first mri.  I saw 3 cervical herniations.  Through all of this no one looked below my cspine, no one did an xray, no one looked for a syrinx, tethered cord, anything.  And, apparently, no one is going to.  With a sudden onset of symptoms that are progressing is this normal? Can my diet truly reverse all of this? And should my spine have been looked at as well?  I know that a 3mm herniation isn't bad.  But, I also know that nothing should block my csf flow and that the c-spine herniations should have been noted.

Included are the symptoms I've developed over summer:
long lasting migraines with visual disturbance (ie furniture moves)
headache when bending, straining
swallowing difficulty
hand weakness/loss of motor skills
restless leg/body
bells palsy
loss of taste (lasted 36 hr)
increased snoring
speech problems/word loss
brain fog/lost thoughts in mid sentence
increased fatigue
tingling face/scalp (bug crawling feeling)
pulsatile tinnitus (heartbeat in ear)
lump in throat
hiccups
mood changes
noise sensitivity
numbness in right mid back to sacral area
neck pain/ache/cramps

Notice these are not symptoms I have had for years.  I've developed them suddenly and theyve progressed.  

[selmaS]

  it seems to be diff for those with EDS and chiari to lose weight as many of us also have an auto immune thyroid condition to boot....

  Make sure they have ruled this out as well by having ur Free T3, Free T4 and TPO anti bodies and TSH  just to make sure that is not an issue for u as well.

  With an auto immune thyroid condition like Hashimoto's u can switch btwn being hyper and hypo.....

[Viva001]

I hope you still consider other opinions.
I had no herniation & no underlying conditions, and pain wasn't my primary symptom.  I went straight downhill after overdoing it pruning 1 day, a year ago.
I would be concerned about your job causing further problems.

[jamiewith4]

Thank you, selma.  Yep, Ive done my research and then some.  My EDS is treated by a geneticist and my PCP.  I hadn't heard of Driscoll theory, though.  I'll learn all I can.  I know that chiari and eds symptoms easily roll together and it only complicates things more.  Thats why I chose to skip the small steps and go straight the the "big" specialist.  And I respect his recommendation that I lose the weight.  I know that it only makes all of my problems worse.  I told him that I will certainly try.  I have to feel better again.  I have finally gotten my pcp to xray my spine so that I can prove that yes, I have problems back there.  Now that she's saw that I am finally scheduled for an MRI of the L-s spine.  I guess that will have to work for now.  And I knew that I didn't have the typical posterior headaches and told him that when he asked about them.  I described where mine are and what they are like.  In the end he said some of my nerve pain may be chiari and that my lost gag reflex definately was.  He wasn't sure about the rest.  He said that since I didn't have posterior headaches and I am able to move my neck then he didn't think it was too bad.  And then he lectured me about my weight again.  Yes, Im overweight.  Im a nurse.  Got that.  And when I asked about the spine and further test he said there was no need right now.  
I'm fine with it all being good and ok and not surgical.  But, I'm not a fool.  I don't want to be blown off because of my size.  I want the same treatment my skinny counterpart would recieve.  And I want to know that my job and activities aren't going to cause me serious injury.  He told me there were no restrictions.

[selmaS]

  Hi and welcome to the Chiari forum.

U have educated urself very well and know quite a bit already by the questions u have asked.

yes, weight can play a role in ICP that can cause chiari like symptoms and too many Drs only look at weight as a cause and do not look further...many can have these exact same issues as u and be thin....and not weight like they seem to always think.....but, being a healthy weight can only help u.

  U may want to ask ur PCP if they can do more testing especially if u have  pains in ur lower back...etc....

The disk issues r EDS related do u have a Dr treating u for that?u may be able to get a Dr to do more MRI's just to check the rest of ur spine for more disk issues.....


  The Driscoll therory is posted in the EDS group as r other links to Dr Diana's  videos on EDS- http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc


  Now the HA's,,,,,not everyone has the typical chiari HA and some have the more frontal ones.....so, do not discount it bcuz of which symptoms u have and do not have.

[jamiewith4]

Sexybare, thank you for your validation.  I'm frustrated and tired and need to focus my attention on my daughter with EDS and POTS.  Surgery is NOT what I want and I am relieved that he didn't see it as an option.  But, still, he could have considered what I had to say and offered further explanation and tests.
Rylanesmom, I'll look all of this up.
Viva001, this was Dr Tew at the Mayfield clinic in Ohio.  Everywhere I read, I see his name.  I thought that he was one of the top chiari dr's in the country.  Thats why I was so surprised when I felt brushed off. I traveled a long way to see him for this reason.

[Viva001]

Im sorry you have these symptoms, but you will find lots of help here.  There are others with EDS & other DX's that are comorbid w/chiari.  The experts are trying to solve this too.

You need a genuine Chiari specialist--you most likely will have to travel-- and you will read over & over that "size doesn't matter" (I had zero herniation & still had ~30 symptoms).  
I have a terrific NS in NC, if you're interested.

No, I don't for a min. believe losing weight will reduce your symptoms  (any more than taking vitamin D or learning how to cope with stress will).

The good news is that as a nurse, you will be able to grasp the seriousness of the condition, what it can & might do to us.
Best of luck to you.

[Rylanesmom]

Diet can help with Pseudotumor which you may have based on where headaches are and symptoms.  Your EDS can also be causing this.  Please google Driscoll theory.

[Sexybare]

You are right, there's obviously an issue with your flow. Sounds like its not fully blocked tho and most drs try to treat it other ways before resorting to surgery, unless flow is totally blocked or there's other issues. I too had to try other types of treatments in between my surgeries. You should have full spine mris, definatly could be something blocking flow elsewhere. Get a diff opinion, as many as you need. Finding the right dr is key to answers. Good luck hun, Dana