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Chiari Malformation Community
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Avatar universal

Chiari Expert in Dallas / Should I wait?

I was diagnosed "by accident" in 2011 with a Chiari Malformation during an MRI after an occular migraine. I'd had infrequent migraines my entire life, but up until this year, the chiari was just something I was aware of.

Fast forward to January of this year. I started with the strangest of symptoms. I started vomiting at complete random, several times a day with no cause. What lasted for about a week, and then I was just dry-heaving. I went to my PCP, and ended up at a GI, and went through several rounds of testing, and about a month later, I was still having dry heaves, but I was noticing that they were proceeded by episodes of extreme nausea that I hadn't noticed prior. Before then, I went from fine, to "omg, there it goes." I saw two GI specialists, had several special tests, and everything looked normal, but a general surgeon wanted to remove my gallbladder, thinking that could be the cause.

Before surgery, I decided to follow up with my neurologist, just in case this could be neurological, and he thought it was!  This could be related to my Chiari! (WHAT!?) Fast forward another two months, I went to a neurosurgeon, I saw an otolaryngologist, (inner ear specialist,) and again everything, except my Chiari, was normal. (I had a follow up MRI, I forget the technical terms, but I remember the offset is 10mm, and I had a CINE MRI, and it showed almost no CSF flow in the back of my head.) My symptoms morphed a little again, the dry-heaving stopped, and I started just having nausea or dizziness spells. I have trouble describing them because they were not vertigo, I do not "spin", but I don't feel anything in my stomach, its all in my head. The best way I can describe it is its very much like how I feel motion sickness. I would have horrible spells that lasted anywhere from 20-45 minutes, and then just be at a baseline of dizzy/off all day. I got to the point where I stopped driving (my husband had to drive me to work), and I had to be very careful walking because I had to stop a lot. It was bad. I was miserable, and I was scared of what was happening to me. The whole time I was getting headaches as well, but I can't tell you for sure if they were caused by exhaustion or the Chiari.

Then my surgeon prescribed Topomax, thinking it could help. And for a few it months, it did. I stopped having the dizzy spells. I had the common Topomax problems, memory loss, tingly hands/feet, weight loss, etc, but its been something I can live with considering the alternative. I stopped seeing the surgeon, and went back to my normal neurologist for regular follow ups.

The problem is that the dizzy-spells started coming back about two months ago. My neurologist has been increasing to dosage every month, but they've only continued to get worse. I'm afraid we've run out of options here, and I'm more afraid that the Topomax was a fluke.

My surgeon, who has treated Chiaris, but is not a Chiari "expert," was convinced that this was a symptom of my migraines being aggravated by my migraines, but that we probably wouldn't be able treat that way forever, but he couldn't tell me for how long. He wasn't in a rush to operate, which I appreciate, but he also didn't seem to know any other options after this. If the symptoms come back full force, which I don't look forward to, I can't continue without answers/options.

Long story short: This has been a crazy year, and while no one "wants" surgery, I almost would rather get it done now than later. I'm still young (27), and I can afford the time off from work with no kids. I have excellent insurance, and god-willing will continue to do so for the next year. If I wait a few years, who knows!? What if I have small children, or a different financial/insurance situation?

I've already made follow up appointments with my neurologist and my surgeon, but I had a few questions for the community here.

1. Has anyone else had any similar experiences like this with Chiaris causing vomiting/dry-heaving/nausea/dizziness??
2. Does anyone know of any Chiari experts in the Dallas or even Texas/Oklahoma area. I will drive for good healthcare.
3. I read some articles today on osteopathic treatments helping some chiari patients, has anyone else had luck with that, or is that hogwash?
4. For those that have waited to have the surgery, but eventually had it, do you regret waiting? I'm scared of having the surgery and it not fixing the problem, but I'm equally scared of waiting so long that I've missed out on large parts of my life while waiting and suffering. (My husband and I got married only 4 months before this started, and were hoping to start a family next year, but those plans seem far off if we can't get this stuff figured out.)
14 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

1- Yes, many of us have these same symptoms

2- We do have a list of Drs the members here have used and liked. it is only for u to use to research and is not a referral nor an endosrement -http://www.medhelp.org/health_pages/list?cid=186

3-Not sure what u r referring to can u expand on this?

4- I had surgery and do not regret one part of it.....surgery may not reduce all symptoms but it does restore the CSF flow that is obstructed and that can cause more and more issues...a syrinx to form etc....

I went most of my life with this condition not knowing what was going on....Chiari symptoms cycle so we get to a point we need to do something nothing is found and we begin to feel better and forget about it until the next flare....however, this can create more issues especially when u do have a obstruction to flow...u can get a syrinx or several of them to form...they can grow slowly over time or very rapidly....

Find a Dr that can do testing to see how ur Chiari is affecting ur over all health and see what related conditions u may also have....

U can still have a family  with Chiari...it can cause symptoms to flare...but it can be done...

Know u r not alone <3
Avatar universal
Thank you for the link! I can google with the best of them, but being able to read what other patients thought is the most helpful. Plus there isn't a lot of data or information out there about chiari experts.

The first place I saw information about osteopathic treatments was this link: http://www.newstimes.com/local/article/Osteopathic-care-offers-a-holistic-alternative-656777.php I've since seen a few other places mention it, but most places mention it in passing pretty dismissively.

The worst part about all of this has been the lack of information, and the frustration with not knowing. I don't usually know how to explain whats going on, and when the symptoms are really bad I have cognition problems that affect my ability to communicate. I've always had other health issues, and I truly wonder how many are interconnected with this. I've told everything to my neurologist and my neurosurgeon, but they seem uninterested in the things that don't look classically neurological. How do I get a doctor to do that kind of testing?

I know that a Chiari doesn't stop me from having a family, I'm just scared to start one, and then have the problems flare and affect my ability to parent, or be there for my children and husband. Plus, my doctor told me I would have to be weaned off my medication prior to any pregnancies.

Thanks for the support!
620923 tn?1452919248
COMMUNITY LEADER

Having a true Chiari specialist helps...they know ALL the related conditions and do testing for it.....

I had symptoms my whole life, I can recall having issues when I was a child.....I got married had 1 child and she was an adult when I finally got my DX part of this is bcuz there were no MRI's when I was a child and they did not use them to DX these types of conditions when they finally did use them, it was to detect  cancers......

Even after MRI's were being used to detect this condition, finding a Dr that could DX it or send u for a MRI was not an  easy task.,.,.plus they were expensive.....

As costs came down MRI's are done more routinely.......and many herniation's are found incidentally while looking for other things, so they were ignored and at times still are...

What meds are u on?if u have surgery now u will most likely be off meds after u recover.....or wait for the cycle to change......
Avatar universal
Right now my neurologist has treated patients with nonsymtomatic chiari's who have migraines before, and my neurosurgeon has done some chiari surgerys, but I don't believe either one is truly a chiari expert. I found the list of doctor's on the forum here and will as my neurologist to refer me to one of the doctors listed when I see him on Monday.

I had an MRI in 2001 that didn't notice anything, or didn't report anything. I tried and tried to get an actual copy of the MRI, instead of the report, and I can't, the medical records department can't seem to find it. My neurologist thinks it was just missed due to the older technology, because it had to have been there the whole time. I had some problems that year with dizziness that no one could diagnose, but they went away "on their own" and then didn't come back until this year.

I'm on Topomax and Diazepam right now for the dizziness and to treat the migraines. Both of which are not drugs that I would want to get pregnant on. Prior to this year, I never had to take a daily medicine for my migraines, I usually had about 2 migraines a year, and could just curl up in a corner with some pain meds and sleep it off. This year has been different. On top of the dizziness, I've already had about 6 migraines that have all been worse than my usual migraines in intensity.

If you can count what I had as a teenager as a "cycle," that only lasted 3 months, and did not affect my ability to walk/drive/go to school. It was just annoying and slightly frightening. Whatever this is has affected everything; my ability to walk, talk, work, etc. And it has already lasted 11 months.
620923 tn?1452919248
COMMUNITY LEADER

  Do not just go to a Dr on the list bcuz they are on this list, use the list to research the Dr first......not all on here are true Chiari specialists and may have the same experience as ur Drs....this is only to be a starting point in ur research of Drs that have treated a member here, once the member heals and liked the Dr the name is added....

Many times the radiologist only reports on what they are told to look for....some will report all they see....so it may have been there and over looked or just not recognized.

Oh ok...well TOPAMAX is a diuretic so ur Drs must feel u have a high CSF amount....and to try and lessen the pressure from it they are using this.....

I was not on these meds b4 my surgery only after...so I have no idea if u might see improvement from them.....but see y u would not want to get pregnant....I would think if ur Chiari specialist feels surgery is a good option for u that u have it b4 so u can get off the meds.....

I had cycles as a teen it would come and go...I might have it a month and then nothing for almost a yr and then have it again for  a few months ...and I am talking about a flare of really bad HA's....the other symptoms and issues were always there, I just never considered them symptoms or connected them to the HA's.
Avatar universal
I'd heard of one of the Doctor's in my previous research, and he'd popped up a few times prior, so I'm going based on the list and based on my own research.

My neurosurgeon initially prescribed both medications, and the way he described it, the Topamax was prescribed because of my migraines. He thought if he could cut that out as a factor he could find out if my problems were Chiari-related or migraine-related. Once I stopped having problems while on the medication that was the prevailing thought. Now that I'm having symptoms again even on higher and higher doses, I'm thinking it was just a fluke and that my flare was just on its way out when he made the initial prescription. He said that according to the CINE MRI I had, I had zero CSF flow in the back of my brain, and that indicated that probably was pressure in other areas, so you're probably right as well.

I've had depression, IBS, chronic fatigue, and mild headaches my entire life. I never knew that those could be related to this Chiari until I started reading this board. I can't wait to go back to my neurologist and neurosurgeon and actually be prepared for my appointments this time.

Thank you for all your help.
620923 tn?1452919248
COMMUNITY LEADER

  NO worries...keep me posted how things go.

  Good Luck <3
Avatar universal
I went back to my neurologist, and then on to the neurosurgeon I wanted to see. He is recommending the decompression surgery.

He said he's not certain that it will help any of the above problems, but he discovered while I was in his office that I've lost some sensation in my hands when he stuck them with a safety pin and it felt dull instead of sharp. (When I got home I tried the same thing on my feet and realized I don't feel anything until you break skin, glad I'd used a new needle and cleaned it with alcohol.)

I'm going to get a second opinion for piece of mind, but I'm still in shock. I think in the back of my head (pun not intended) I knew surgery was coming, but realizing I was losing sensation in my hands scared me more than anything.

I have a plan to talk with my husband and our families to get opinions and ideas later this week, and we're going to set a game plan. Ultimately its my decision, but I've always believed that the people that love me should have a voice.

Thank you for listening.
620923 tn?1452919248
COMMUNITY LEADER

  Just as a insight, make sure ALL related conditions are ruled out....ICP, POTS, sleep apnea, tethered cord, syringomyelia, ehlers-danlos....as they can affect how u feel and heal post op.

Talking with family is good, but do educate them on this condition as some may not understand the need for surgery....we all need the support but do not always find it with those we love.....I pray u do,
6945084 tn?1386341343
Hi Kristen! My name is Jess, I stumbled onto your post and wanted to say I'm sorry that  you are in so much pain. I know what it is like, I am 24 and have been through it too. Pain is truly the worst, it completely rules your life. Just don't forget that we are on here for support! I agree with SelmaS. Make sure you check for other conditions before you decide on surgery.

In 2005 I came down with the worst headache. I was one of those kids who thought it was normal to take 5 ibuprofen a couple times a day. I was just about to graduate high school and I couldn't get rid of the pain. A friend referred me to a chiropractor who realized after a week that I needed some testing. (I was also going to multiple doctors and they missed it)

Long story short, I just wanted the pain to go away, so I did the decompression. We didn't do any extra tests, they just assumed the chiari was the source of all my pain. This is what happened...

June 2006- Chiari decompression which was successful
- the next week my pain reappeared. The doctor ignored it thinking I just needed to heal

August 2006- Emergency Shunt placement - I had WAY too much CSF

September to December '06- I had 4 separate emergency revisions because I was either so lethargic that I'd drift into unconsciousness or I'd severely throw up from too much fluid draining.

December 06- Went to mayo and had the shunt removed and a third ventriculostomy
where I lost about 3 years of memory, still have short term memory problems, and I was on a feeding tube for a 1 1/2 months because I forgot how to swallow.

2007- I went to MHNI where I was in the program for almost 2 months-
I was sent home with a diagnosis of chronic severe daily head pain. They said it was all the symptoms of a migraine but much worse. No migraine medications worked and almost no narcotics.

later that year I found a doctor who did exploratory surgery called neurolysis. After 7 separate surgeries I finally stopped. The last one helped some.

Since then I have been taking methadone to somewhat control the pain. I have been in rehab programs, pain clinics, and I just cannot get relief either.  
I hate taking this drug because my body depends on it, and it is not very effective. I do get botox. Have you tried that? Also I get massage, acupuncture and minimal chiropractic care. I apologize that this is so long, but I wanted you to see what happened to me because I didn't check everything out.

Know that I am here if you need someone to talk to. It sounds strange to say that and to use a stranger for support, but only people who have gone through it truly understand. I lost most of my close friends, and I have a feeling I'm losing my fiance now too. Chronic pain is terribly hard to deal with, and it effects everyone close to you. Just don't ever think you are alone..
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

Thank u for sharing  ur Chiari journey with us and I encourage u to copy and paste it into a journal on ur profile page....that way u can add to it as I am sure u may have more to add.....

May I ask, did u ever find another related condition other then the excess CSF?
6945084 tn?1386341343
No I haven't. I have had doctors say fibromyalgia and occipital neuralgia, but the treatments had no effect. Last month I was informed that my neck is curved backwards and I developed scoliosis. I have tried pt, but now I am using a chiropractor. I was in a car accident in January and this past year I have gotten significantly worse. I can barely be out of bed. I have good days every once in a while where I can drive, but most of the time I can't. I also get extremely dizzy and nauseous. I have been taking Marinol if it is extremely severe, and it actually helps! So my dx is chronic severe daily head pain, that may be caused from multiple surgeries, injuries, and chiari. I am just a mess! :)
620923 tn?1452919248
COMMUNITY LEADER

  The reason I ask is u developed excess CSF post op, many times those that have had this happen found out post op they also have Ehlers-Danlos and the excess CSF is a result of the dura patch and a rejection to it....

Be very careful with a Chiro as they can cause more harm if not informed on Chiari....as u can see Chiari is life altering.

I pray u can get relief.
Avatar universal
Jess, Thank you for sharing your story with me. I cannot imagine all that you have been through. I can understand your reasons for cautioning others about surgery.

My journey has had a few twists in the last month. I lost feeling in my fingers, and my dizziness has gotten worse.

I've explored all other conditions ICP, POTS, ED, tethered cord, etc, and nothing fits. I've had my ears checked (balance problems), I have had my heart checked, I've been to multiple specialists, and no one has found anything, except for the Chiari. I have spent thousands on testing, and the only abnormal thing found has been the Chiari.

I'm relatively lucky to have only that as a problem, but I've made the decision that I can't handle it anymore. The dizziness and balance problems that its causing are too much. Losing feeling in my fingers was the last straw.

I found a NS near me that I trust and believe in, and we've scheduled surgery for later this month. I've gone back and forth on this for awhile, but ultimately I feel like this is the best decision for me, and my family has been supporting me the whole time.
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