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1

Hi all. I am new to this group. After 2 years of unexplained symptoms- many many many imaging test with all "normal" results I finally received a second neck MRI and this radiologist said "Borderline" Chiari Malformation. Basically right cerebellar tonsil tot extend 4mm consistet with ectopia and borderline Chiari. The left cerebellar tonsil extends 2mm below line. No crowding of the craniocervical junction and no cervical cord lesion or syrinx. I also showed a kyphotic curvature in neck which is causing muscle spasms. After 2 years, this somewhat explains why all my symptoms on on the right side of my body (side of the tonsils that are hanging the farthest), from vision issues, to occipital neurolgia on the right side, severe headaches that have taken me to the emergency room twice, daily headaches, neck and shoulder pain (only on right side), dizziness that they thought was an inner ear problem and I spent 6 months in vestibular rehab (which helped a bit actually), random nausea. Went from 20/20 vision to having to wear glasses. This all happened overnight- and when I mean over night , I mean literally overnight. 2 1/2 years ago I woke up one morning and was so nauseated and dizzy I couldn't even drive. This last severe for like 4 months and then when vestibular rehab started the dizziness became manageable to where it is just random or position based.

I finally was referred to a neurosurgeon (actually dr wanted me to just go to a Neurologist, but they don't seem to have much experience with CM, as I have already been through this many times with them saying I have migranes or tension headaches. So I did my own research and found a specialist Neurosurgeon through Barrow Neurological Institute in Phoenix (where I live)- Dr. Peter Nakaji. Has anyone heard of him?? I couldn't get in until October 28th- so until then :) He recommended I get a brain MRI CINE before we meet, so I do that this Friday.

I got on this site in hopes of a little support- and now I am more scared than ever :( Maybe somebody can shed some light. I haven't read much positive stuff ,so please help me out here.

I have 2 smalls kids (5 and 7) and my husband travels alot for work, so I am their main parent, care taker, soccer coach, errand runner, homework helper, back tickler, boo boo kisser, etc- I teach aerobics and am very active. Here are my questions:

1. Am I making my CM worse by exercising daily?? I have this horrible thought now that every time I run my brain just keeps slipping out :( ( I am highly anxious, so weird thoughts like this happen alot).

2. How many have you have lived with this for years and years and have not had any changes in symptoms- you have been able to manage them??

3. How many of you have had the surgery and have had success? I keep hearing the opposite, so I would like to hear some positive.

4. What type of things have helped manage symptoms?

5. I have never had any problems sleeping, but now after reading posts I am terrified I am going to die in my sleep and my kids will find me :(

Ok, enough of my panic attack- any supportive help would be great to this newbie CM patient :)

Thanks,

Rachel

2

Rachel, I’m sorry you have this diagnosis, but glad you have an answer for your symptoms. First off- keep in mind that the people are who are generally hanging around support groups aren’t doing as awesome- the people who doing well are probably out enjoying life. So, there probably isn’t a fair representation on a support group. There are many people who do very well after surgery. Does your headache get worse while you run? If not I wouldn’t necessarily think you should stop.

There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.

Vitamin d deficiency

Magnesium deficiency

Vitamin Bs deficiencies

Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.

Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.

Dysautonomia- Dinet.org

Tethered cord syndrome

Sleep apnea

I am glad you found us,
Jenn

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Thanks Jenn! I have already started taking Natural Calm Mangesium Supplement- but I will also look into vitamin D and vitamin B as well!

When I see the Neurosurgeon will he test me for all these other things? Do most Neurosurgeons?? I have already had an MRI on my Lumbar and Cervical spine and no tethered cord showed- nor did anything else with my spine.

My headache does not necessarily get worse when I run or teach aerobics, but I get daily headaches, so not sure if they are attributed to the "aftermath" of working out, or just because I have CM and it is a daily thing. ( I get them on days I don't workout too,so). The only thing I have to be careful of is when I teach Yoga because when I put my head down it feels like my whole head is going to explode!

Thanks for the information. I am trying to get the most research I can about this so I can ask appropriate questions when I finally meet with him on Oct 28th (seems so far away!!).

Rachel

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Rachel, that’s great that you have the MRIs- you are making the right moves. It’s safe to assume, unfortunately, that the NS will NOT test you for these other conditions. There are certainly some who do- but it is rare. I have seen so many times a patient asks the NS if they have EDS, and the response is something like, “EDS is way over-diagnosed, I don’t think you need to worry about that.” But the NS doesn’t actually go through the Brighton and Beighton criterias. Soooo, I’m suggesting you do a lot of research so you can trust that BS flag if it goes up. Test yourself with criteria and see if it seems like it could be a possibility. Any joint dislocations? Extra flexible, even if it was only in younger years? TMJ? IBS? Degenerative disk disease? Blueish sclerea of the eye? Hemorrhoids? Doughy/velvety/stretchy skin is a common finding but not all of us have that one. Many more symptoms…

Go to dinet.org to learn about dysautonomia (many of us have POTS type).

Ask your PCP for a sleep study to check for apneas.

Arm yourself with info and become an expert so you can pick a true Chiari specialized NS.

You can do this!
Jenn

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Yes Rebecca, I feel the same way! I think N’S stands for Neurosurgeon. My GP wanted to refer me to a neurologist first and I refused. I did my own research and thought going straight to a NS would be best. The Dr I am going to is one of the top NS in arizona, has won multiple awards and has rave reviews. I meet with him on Oct 28th, so hoping for the best.
Rebecca, what are your current symptoms?

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Rebecca, yes NS is neurosurgeon and NL is neurologist :slight_smile: to get an official diagnosis for EDS you can see a geneticist- they take a tissue sample and it can be pricey. You can see a rheumatologist, they will typically use the Brighton Criteria and the Beighton Criteria- a generally accepted alternative to the genetic testing, or depend on your NS to diagnose you.

Jenn

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Rebecca, I am sorry you are going through this. I am panicked as well. I know mine is minimally prolapsed so they consider it borderline and I guess my biggest fear at this point is meeting with the NS in Oct. And he says it’s just a monitor type things. Do people have to come in a wheel chair with 10mm herniation or higher to have the possibility of surgery? I don’t know??
And I have not been able to find anything that says people have lived all their life with very little symptoms and no progression, so am I doomed for progression? ? I don’t know! I am like you, so many questions spinning through my head. Like I said I have had these symptoms for over 2 years now and although not necessarily worse, other small things have popped up and my daily headaches are the biggest annoyance of all. I pray that God hears my prayers and will help me find some answers and solutions. Keep us posted on your journey as well, as I see we are both new to this and might have a road ahead of us!!

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I had the surgery and I am doing good. Perfect, no but a whole lot better. I starting to add Zumba to my daily routine. I workout till I feel my head start to hurt. My NS did a through job with the surgery. I still have bad days but nowhere near as much. I do have eds(not diagnosed) but I have all the symptoms. I try to ignore it and go about my day. Not all surgeries are some of us have successful outcome. I have the syrinx but it has gone down a little. Good luck

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My question is for anyone that has had the surgery what is recovery like? I was just diagnosed due to Mri from a car wreck. Have had severe headache since wreck that my orthopedic surgery sent me for neck Mri. All they want to give me is pain pills and adjustment. They just started to talk to me about the chiari malformations and treatments. When you read everything on the internet it can scare the crap out of you. I’m a single mother of two teenagers. So I have think about them and me.

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Tamara, yes everything u read is scary. That is why I have made a rule to 1. Find a neurosurgeon (not neuroglogist) that specializes in this to discuss the options with and 2. Stay off the Internet.
Unfortunately the people who are doing well living with it are living their lives and not worried about posting things on the internet. You typically get more post from people who are having a hard time. I had to be reminded of this as well. There is a brain and spine center at Cornell University called Weill Brain and Spine (www.weillcornellbrainandspine.com) that has great information, reassuring information and good success stories. I ended my searching there on a positive note :slight_smile: lol. Good luck!

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Believe me I have read plenty about him. Look at his actual bio through Barrow, not some random sight. I have done my research here and prefer not to go to a private practice person. I am not joining that fb page, but if u have a better recommendation here in az, then by all means share. Thanks

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1. Am I making my CM worse by exercising daily?? I have this horrible thought now that every time I run my brain just keeps slipping out :( ( I am highly anxious, so weird thoughts like this happen alot).

I would definitely slow down until you see the NS but as long as you don't feel discomfort then you are probably ok. I would avoid anything that seems to make symptoms worse.

2. How many have you have lived with this for years and years and have not had any changes in symptoms- you have been able to manage them??

n/a

3. How many of you have had the surgery and have had success? I keep hearing the opposite, so I would like to hear some positive.

I had surgery on October 18, 2012 and it changed my life in a good way! Before surgery I basically only managed to go to work and go right back to bed. I was dizzy, lightheaded, fatigued, and had head and neck pain. My arms and legs stayed tingly all the time. Now I have a great reduction in symptoms and am able to work, keep up with the house, socialize, and exercise regularly. :)

4. What type of things have helped manage symptoms?

Honestly for me resting is the main thing that helps. Advil helped but I have gastritis so they are too hard on my stomach for regular use. So when I'm feeling down I lie down. Epsom salt baths are nice as well!

5. I have never had any problems sleeping, but now after reading posts I am terrified I am going to die in my sleep and my kids will find me :(

Central sleep apnea can be associated with Chiari but not everyone who has Chiari has that. It wouldn't hurt to ask your doctor to order a sleep study just to give you peace of mind!

13

I am curious, what FB page? Razzle is this your FB group that is referenced?



Rachel Trulove said:
Believe me I have read plenty about him. Look at his actual bio through Barrow, not some random sight. I have done my research here and prefer not to go to a private practice person. I am not joining that fb page, but if u have a better recommendation here in az, then by all means share. Thanks
14

I had decompression surgery in November 2013 and so far I’m doing well. I have an occasional headache and that’s about it. Everyone is different and may respond differently to surgery and treatment. The best thing you can do is do your research, find a good doctor, and ask a lot of questions so you will know what to expect. All in all I would say I am glad I had the surgery. Recovery wasn’t that bad. I was back to work 6 weeks after surgery.