Chiari

[Monstrosity]

I met someone that had all the POTS like symptoms, turns out she had Chiari.

Has anyone rulled this out or have this?

http://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation

http://www.wichiaricenter.org/oth/Page.asp?PageID=OTH000005

[sue1234]

I've wondered about it as I read alot on a chiari forum about a year or so ago. I dragged out my MRI, and I just don't see a drop of the cerebellar tonsils. BUT, that's not to say what everything is like in a standing position, which we don't get to see. I would like to say that I have been diagnosed with cervical stenosis, and the wichiari website mentions that often when c.s. is seen, it also tends to have chiari connected. That would all make sense to me. The spinal cord is a certain length. If you get curvatures in the spine at any area, it is like pulling the cord down from the brain as the curve progresses. Take someone like me who has a few different curves of the spine, and I could certainly see where the cord MIGHT be pulled down, taking the brainstem with it. I already have picked out a place to address the spinal issues with me---just need to make any appt. so that I can get an opinion.

It is amazing the similarities of symptoms between us and chiarians. Such odd things like noise and light sensitivity, etc.

[diamondcut]

I am having an MRI scan next week for this because migraine had been diagnosed but they want to check for Chiari.

They are using contrast this time. Has anyone felt strange or poorly from the dye they use in your system when having an MRI?

[sue1234]

I don't feel strange with the MRI contrast (galodinium or something like that), but I feel awful when I get the contrast for a CT scan (which I think has iodine in it).

[diamondcut]

Yes I think you are right with that because they ask if you are allergic to is it shell fish or something strange??

[tinkerbella]

I have to be premedicated for for contrast Dyes, as I had the really bad reaction with the Iodine.

[CharmedLinz]

First MRI with Contrast I had a horrible reaction, it causes your blood vessels to dilate. So I got typical fast heartbeat, pass outy, can't breathe thing.

That was before my POTS Dx and before I started Florinef.

Had another last year with contrast and no reaction, I think the Florinef helps enough to keep my reaction down.

Drink A LOT of water to flush you system after.

I have a borderline chiari malformation. Radiologists have not identified it on 4 MRI's, but 2 Neuros have as well as my Neuro ENT Doc.

It's very borderline so nobody worries about it, but it gave me major problems after a spinal tap that I never should have had.

Like Sue said, I haven't had a standing MRI either so who knows what gravity does.

I'm looking into a specialty clinic for my facial Neuralgia that also deals with Chiari...... so maybe, we'll see.

[diamondcut]

so when i go for this MRI do you think its sensible to have someone there after just incase? We can never tell what we are going to react with horrible condition, things most normal people who go for an MRI dont have to even worry about.

[Monstrosity]

so when i go for this MRI do you think its sensible to have someone there after just incase? We can never tell what we are going to react with horrible condition, things most normal people who go for an MRI dont have to even worry about.

A month or so I had to drink barium and have x rays done. I wish I would have had someone to drive me home. Some test, dr's apt, etc its best to have someone with you "just in case".

[issie]

I have to have MRI's yearly because I have a brain tumor and have to have it with contrast. Even though I'm DEATHYLY allergic to shellfish - I don't react to the contrast - except for the normal hot flash feelings that you get when it goes throughout your body. The last time I had one - they asked if I was allergic to contrast - rather then shellfish or iodine - because they said they had determined it is something else that can cause the reaction with the contrast.

As for the Chairi - I have a 3mm drop lying and it's not considered Charii until it's a 5mm drop. Some clinics diagnosis a smaller drop as Chairi 0. The doctors don't think it is causing my issues. But, since I do have EDS and laxity - there is probably more drop with upright posture. I can't lean my head backwards nor turn my head to the sides and leave it for any length of time ---or I will have problems and symptoms. So thinking there is a pinching or some sort of issue there - but - I don't think it's my main issue. I have to support my head and neck very well when I sleep and make sure my neck is perfectly straight. I also have to watch TV straight on and can't turn my head - at all or there is major pain.

I think it's hard to get doctors to look at this. There are some specialist around the country that may look at it. And also tethered cord syndrome - that Sue was talking about. But, I'd get lots of opinions before I'd let someone operate on me. There are mixed reports that I've read on whether or not people felt like it was helpful or not.

It will be interesting to know what you figure out. Sometimes, if there is EDS - there are lots of issues with pains in the neck and back because we tend to get osteoarthritis a lot easier and younger than most people. We are also more predisposed to osteoporosis. I personally believe there are many more indicators for inflammation and think that getting that under control would be of great benefit. And also supporting collagen and vein strength with things like Vitamin C and maybe Quercetin and grape seed. These supplements would also help with inflammation.

It's just my theory - but, I wonder if inflammation may not be one of the main issues behind what we have in the first place. Of course, auto-immune things would run a close second. (My opinion.)

The latest thing of interest with me is the theories that Dr. Driscol has on the vagus nerve and also possible issues with too much fluid around the brain pressing the brain down from the top and causing issues because it will press on the brain stem and could possibly cause issues from that. Sometimes, I feel like I have too much pressure in my head. I've even had my husband squeeze my head to see if some of the pressure would release. So her theories intrigue me at the moment. I also have pressure feeling behind my eyes and have been to many doctors and eye doctors because of this feeling. So, could be a possibility.

Keep us posted Montie - when you pursue this. Cause once we have an idea and it seems to make sense - we have to rule it out. Hope your hunch proves to be something that can be fixed and you won't have these issues any more.

Issie

[bellgirl]

My MRI always comes back normal, but since my dad had a cerebral aneursym/stroke, most doctors want this done first. The last time I had one done, I also had an MRA, too. I have the flushing, and an intense heightened sense of smell. If I have one again, I'm asking for a functional MRI or Spect Scan...because I also can get a lot of pressure in my head. It was worse without treatment, but when I am symptomatic, my eyes constantly tear, and I have a stiff neck, and with my vision problems, blurriness and double vision. I keep thinking I have increased intracranial pressure, but all they can find is a small corpus callosum!! Always knew I was a little nutty

[sue1234]

I'm going to post a poll about "neurological symptoms" to see if people seem to have symptoms that could be related back to a neuro issue such as Chiari. The list I'm going to link in the poll has some pretty specific symptoms for Chiari that I've read over and over on this forum. It might be good for anyone that ever has a chance to be looked at for it, go ahead and take it.

[rubytuesday]

I have had a Chairi I for decades that seems to increase a little as I age but is something not routinely watched. The last MRI of my brain (supine) it was 7mm. My neurologist does not understand the significance of checking a seated MRI. I've also have constant neck pain and migraines. I do know I have some degeneration of my neck that showed when I had a CT of sinuses so to what degree and extent, I do not know. I've not had an MRI of my cervical spine for 10 years. I asked the PA at my cardiac specialist's office about the symptoms and Chiari I and she did not feel my symptoms would warrant pursuing considering outcomes and risks of some of the surgerical approaches to it. She felt strongly that it stems from my ANS failure.

[Maiysa]

Hi Diamond!

I just wanted to say maybe with the diabetic issue, you have to make sure your kidney's are okay. I don't have diabetes, but my doctor checks my kidney function before the MRI. Maybe this is routine for everyone. I am so sensitive to everything now, so I refuse the contrast. So far they have been able to see everything they need to see without the contrast. But I'm sure it would be a better picture if I was able to do the contrast. Be sure to talk to your doctor about it.

Have a great day Diamond.

[Monstrosity]

I'm very confused now... I was told Friday that I had a 3MM drop and it was nothing to worry about... However I keep reading and have talked to other docs (not neuro's) and they feel thats a huge issue. The medical field seems torn on this subject. I dont know what to think at the moment.

[Little Miss Bounce]

Hi all, I'm new to this forum but really glad I found it! After developing a constant really bad headache (bad enough that I had to use a wheelchair) when I was 14, I was diagnosed with a Chiari Malformation (I can't remember how big the drop is, but know it's more than my 2 sisters who have both been diagnosed). This led to me having a posterior fossa decompression in 2000 (aged 16) because of the hydrocephalus. I was then symptom free for 18 months after surgery (although most of that time was recovering from the surgery and building my fitness up after using a wheelchair for 2 years). 

My symptoms then returned after a whiplash injury. I then had a CSF flow study MRI which showed my cerebellar tonsils had dropped again and there was restricted flow. I was then told to decide whether I wanted to have another decompression but was told the risks were really high for revisional surgery, so the surgeon & I decided not to have the operation.

A few years later I got referred to a headache specialist neurologist in London, they did another brain & spine MRI which also showed a pseudomeningocele and a collapsed syringohydromyelic cavity in my spinal cord (also called a syrinx), I think both are related to the Chiari & the decompression surgery. He also referred me for autonomic testing and I was diagnosed with POTS. My current doctor thinks a significant part of my debilitating headaches are migraine & POTS related.  After trying migraine treatments which didn't work they thought it was worth investigating the chiari more so I had an ICP bolt to look at the pressure in my brain. This showed that my pressure was on the low side of normal, but that it did change very rapidly (especially when I arched my back, twisted or laid on my front-all of which are excruciatingly painful) which they thought was possibly due to EDS. 

As the pressure in my head was mostly normal we are now concentrating on treating the migraine part of my headache & my POTS, I have had some success with Botox treatment for my migraine but nothing miraculous & so far haven't found anything that helps my pots. X:-(

Issie - I also have the same problems with having to keep my head in a neutral position and get very sore stiff neck & shoulders because of this.

Diamond Cut - I've never had any problems from having contrast dye for scans in the past, but good luck!

Sorry this post ended up so long!!