cerebellar tonsillar etopia 5.4mm

[jjcook0817]

hi all;
I been having severe vertigo for months, headaches on back of my head. very stiff neck with some swelling on left side of neck. MRI also showed degenerative disk disease with bulging, of C3-4, C5-6 and C6-7predominantly. i get very nauseated, it just ruins every day life i also notice me neck cracking all the time. the biggest thing bother me most is the vertigo, and stiff neck,  anyone have any answers.. I just got my MRI 3 days ago

[KerriC1]

@jjcook-  the ns I saw that dismissed chiari was at Washington u, he either couldn't see the kink in the brainstem or was scared of it and rushed me out the door.... Funny thing is as I was sitting in the hotel after surgery in Milwaukee his office called and wanted to schedule a follow up with me. I took great pleasure in telling them that I was 7 days post op and my ns uses the same exact scans done by them to diagnose this overcrowding and kink in the brainstem.... I  don't have too many good things to say about them,  sorry....

The chirp is also a big no no. I went before I had this diagnosis because I was in pain and thought it wouldn't hurt to give it a try!! Boy was I wrong! Good luck at your dr today and let us know how it goes!

@lassel- all I can offer is my experience and I'm aware that everyone responds differently to this, but I had really bad dizzy spells and vertigo both pre and post op. And suffered with positional headaches and whooshing in my head and ears pretty bad. I had my surgery on a Monday, was discharged from hospital on Friday, feeling tolerable but by Saturday I had a sudden droopy eye and blurred vision along with numbness and tingling in all extremities. This prompted a 7 day post op MRI which showed fluid in the surgical site and tracking along the incision. I followed the lay flat and hydrate rule and although there is still fluid there it's less than before, so I gather that it's slowly absorbing.

I still have dizziness but I think it's lessened since surgery. It also depends on what meds you will be taking post op as some cause dizziness so it's hard to know  which is which.... I hope I somewhat answered your questions although I'm sure I just confused you more! I pray your surgery goes well and you begin to have a better quality of life!

[lasel22]

KerriC1, I am having surgery next week and I was wondering if your dizziness/vertigo was made worse initially after surgery or if it was just the same and then gradually got better.  I fear that surgery and medicine will somehow make the dizziness and vertigo severe after surgery.

I've had it real bad to the point that I stayed upstairs in bed for a week, but mostly it's this constant mild vertigo that I keep under control by not over doing it.

Just wondering if surgery aggravated it?  I know I'm going to feel horrible after surgery as it is, I'm just hoping I can see straight and not feel like I am moving in the bed!

[jjcook0817]

Thank you. I believe the Nero us at Washington university of neurology. But does surgi at barns.  I  appreciate  the knowledge you have, I go today to family doctor, I don't get into my Nero here until the 18 th. But that's not saying much about these docs. Cuz he sent me to  chiropractor  I know she caused more damage , it's hard to find the right one. This  forum is awesome thank you . I will keep advise on this

[KerriC1]

Barnes is a very good hospital forany things. I don't think chisri is one of the things they know much about. St. Louis university is where I had my first cine flow study done and I found out through dr. Tew that it was done incorrectly and only partial at that. It's really sad that even the best hospitals don't quite get it.

I understand dizzy and vertigo. It's an awful thing to deal with. If would happen to me just moving my head sometimes, and it can be incapacitating. It has calmed down some since surgery but it took its sweet time to lessen. I really hope you can find some help,  just not sure it will be in the city. None of the Des I saw ever mentioned anything to me about my brainst being kinked and the specialist spotted it right away. The other guy would've been content to let me go on like that so I just don't have much confidence in them anymore

[jjcook0817]

I live at the lake. Lake ozark. Doctors here aren't great. My step daughter made me send stuff off to specialists at barns as she works there 22 years. So maybe I'll have better luck I hope.  Just bending over to pick up stuff I get dizzy. And nausea stomach aches from it. It *****

[KerriC1]

I went to Milwaukee and had the surgery, but have you tried dr frimm? He's in Chicago, and from what I've heard he's pretty awesome. There's a list of doctors on this forum that is meant to research to see if you're comfortable with them or not. I would totally recommend you look at it. Not everyone will like every dr so it's a tool for you to use and go from there

[Pattyrnc]

What town did u end up going to?

[KerriC1]

Hi! I live about 40 minutes south of St. Louis, and  I hope you have better luck than I did in my search for a well informed nl and ns. Some of my more humiliating dr appointments came from some really top notch hospitals in St. Louis. Not trying to discourage you by any means, but rather encourage you to seek out a specialist. I went to Cincinnati for my first one and got s bit scared of the thought of surgery. So when things got really bad a few years later, he retired..... But I found another and ultimately I'm about 10 weeks post op right now. I hate to say it but travel is quite neccesary! I wish you the best of luck!!

[selmaS]

Some of the related conditions could be responsible for your stroke...so make sure they do more testing and rule out ALL related conditions and check to see how your Chiari is affecting your overall health. as well as the symptoms you now have,

Chiari symptoms also cycle...so you can have periods of months, weeks...or years where you feel better....or worse...then it can change....

It is very important to know ALL the related conditions as it can also affect your treatments and how the Dr may choose to approach it.

With vision issues you will also want a neuro optho to check your eyes and optic nerves...

[jjcook0817]

I had theses symptoms before in nov 2013 I had a stroke. It came from months of dizziness, but then I didn't have the neck problem, or vertigo either, so I started having these symptoms in April this year. Getting more severe now, it not only affects my neck, vertigo, and eye sight, I saw and a local doc told me about this, haven't gotten to Nero doc yet to have him tell me about these results, this is everything I read off my results, and local doc telling me as well , so no I have not been to a chiari doc yet. I sent my results off to Nero doc at hospital in St. Louis. All I know this is bad and need relief, need ideas from all you to help. Thank you

[selmaS]

  Hi and welcome to the Chiari forum.

  There are some answers for some of the symptoms we deal with but b4  we can answer there are more questions....what other testing have you had? Are these all the symptoms you have had? Is it vertigo or dizziness you experience?

Have you been to a true Chiari specialist?