Are my symptoms related to my chiari?

After many er and doctor visits I finally found out I have a chiari type I. Since then I've seen a neurologist who said that all my symptoms were coincidental and had nothing to do with chiari ( vertigo, horrible daily headaches, dizziness, sweating of face, full feeling in ears, confusion while driving in the dark and some others). Two weeks ago I went to see a neuro surgeon that said I had alot of crowding in back of head but that my headaches being frontal had nothing to do with chiari, he said surgery is done based on symptoms and quality of life and not on amount of herniation, mine is 8.8 mm. I can not handle the pressure on the base of my skull anymore and vertigo is back again, not as bad as when all symptoms started but enough to interfere with my life, plus because of it driving is not easy and I have a 35 minute commute to work everyday. I called surgeon twice, and going to have a SCF flow MRI tomorrow, hopefully it will explain why the pressure/headache is so bad. I am 44 years old and have no idea what triggered this now if I've had since birth. He did tell me that my SCF must be abnormal because of the tightness back there.
Any suggestions? Ideas? I'd rather not have the surgery but if it gives me a better quality of life I'm willing to do it.
Alexandra

[rod44]

Hi, Welcome to our Chiari Community
If there is CSF obstruction then you will most likely need surgery to make room for the fluid to flow...
you need to be checked for other related spinal conditions like Syringomyelia.....
The goal of surgery is to improve quality of life by relieving symptoms, it unfortunately is not a cure, this is I feel why most neurosurgeons don't want to do surgery, most NS are not familiar with CM 1 so you need to get a NS who has experience of CM....
visit our health pages for a list of Doctors that people here have experiences with and other info related to CM, the link to our health pages is at the top right side of the page

Ray

[selmaS]

HI Alexandra and welcome to the Chiari forum.

Sounds like u went thru the same thing most of us here went thru....until u get to a true Chiari specialist u will continue to hear something similar to what u mentioned.

It could very well be that u have had symptoms ur whole life, but saw them as normal and or thought something else was the cause....and since Chiari symptoms can cycle...get strong and subside....it is easy to get mis dx'd for yrs.

A chiari specialist will let u know if surgery is an option for u at this time, but is the better route to take.We do have a list of drs here that members have been to, PLEASE RESEARCH all drs and make sure u r comfortable with the dr. We r not suggesting drs, but a starting point for ur research.

Glad to have u as a member of our Chairi family, sorry u had to seek us out.

"selma"

[Alex265]

Thanks for all the good advise, I was impressed with the NS I saw but I'm no expert what do I know? I did an online search on doctors with Chiari experience and he was the only one around, he works out of Tufts New England Medical in Boston, MA(1hour 15 min from me) and is chief of staff of neuro surgery. His name is Dr. Carl Heilman.
Does the name sound familiar?
Alex

[selmaS]

Oh yes, he has been a speaker at Chiari medical conferences....sounds like u have a good one there. What he told u regarding the symptoms and quality of life. No good surgeon would say u r a candidate for surgery with out the CINE MRI- CSF flow study..which u r going for.

I know where the HA's r can be confusing and  the NS want to be sure u r affected by the chiari b4 they do surgery or even consider it. I think u should be in good hands with him...and many r monitored and do not have surgery...they may try pain management first depending on the test results.

"selma"

[Alex265]

Thanks for such a quick reply, I feel even better now that I hear people have heard of him, I was impressed with his "bed side manners" too, he went through the mri i had done at the er in detail, explained everything to me. Prior to seeing him I saw a neurologist that even though seemed very smart, did not really think my chiari was anything to worry about, he had a reason for everyone of my symptoms, including that i was being over medicated, he took me off one med "amytryptiline" which is great on chronic pain, had been taking it for 3 years for my back, where Dr. Heilman highly recommends it, so thank god back on it and back pain not so intense.

[selmaS]

I was actually at a conference where he spoke, so I know him from that and I have read many other things about him...I am sure if u google his name u will find him very connected to chiari.

I am glad he is addressing ur pain while he waits on test result...again, I feel u r in good hands...and that is only my opinion...not medical advice : )

"selma"

[Alex265]

Hi there,
What a long day, had my SCF flow study done today, took an hour when I was expecting a half hour, after that saw the neuro surgeon on call because my headache has been out of control for 3 days now, he saw my mri but had to pull teeth to get answers out of him, he did speak to Dr. Heilman's partner on the phone so who knows what's going on, they want me back to see Dr. Heilman to discuss (or so he says) my options about my symptoms being back,(was intense pain free for about 4 weeks, vertigo too, but both back again). The only two facts I got out of the resident surgeon were that (and I had to ask) I did not have, I think it's called a sphinx? or something with similar spelling, and that my spinal cord fluid was abnormal, but Dr. Heilman had already told me that it had to be because of the crowding I have.

[selmaS]

Hi..yeah that study can be an hour or longer....it can depend on the radiologist.

Well it sounds like they r listening and trying to see what they can do for u...I pray u get answers soon.

It is good u do not have a syrinx, but with abnormal CSF flow, one could develop over time....this is Y many with a blockage have the surgery to also prevent one from forming and to help slow the progression and hopefully reduce pain and symptoms.

Keep us posted : )
"selma"

[Alex265]

Thanks and I will, let's see what the office has to say today.

Alex

[Alex265]

Well spoke to Dr. Heilman last night, the SCF study not to bad, as we knew it showed alot of crowding and not much room back there, abnormal fluid flow and slight obstruction. So he says with my symptoms he'll perform the surgery to improve my quality of life. Here's my question, if I can deal with symptoms and put off the surgery for a while what could happen to me? could it get worst? or total obstruction? Has anyone here had significant change in their life by putting it off?
Alex

[rod44]

Hi Alex,
The risk that comes to mind is hydrocephalus or "water on the brain"  a condition where there is accumulation of fluid in the brain. This is a serious condition. You need to talk to your NS and your Family Doctor about what is best for you....

ray

[selmaS]

Hi...also a risk of putting surgery off is if u do not have a syrinx now, one could develop...a syrinx can cause perm nerve damage.....so, surgery can help prevent one from forming by getting the CSF flow back to normal.

There r many concerns, and I agree with Ray, ur NS should be able to indicate what benefits will be given if u have the surgery now and what risks if u wait.

"selma"

[redkim]

I had the surgery in Jan.  I decide to have it while I didn't have a syrix (SM), while I was young, and because I was in pain most day's and didn't have a great quality of life.  It's a big descision.  

Surgery is a treatment, not a cure.  Your symptoms could stay the same, get better, come back again later, etc.    Since I had the surgery I feel much better, personally.  But I know that there are things I can't do because it could agrivate my CM and make things worse or make symptoms come back.  

You have been given some good suggestions.  I would research as much as you can.

Good luck!!

Kim

[Alex265]

Thanks for all the suggestions, appreciate it. My biggest fear is coming out a veggie. No matter how great the surgeon he's still human. I had a hysterectomy two and half years ago, very happy I got the surgeon I got, when I woke up from surgery I was in agony and told him something was wrong, this went on for 12 days and he didn't believe me, on the 12th day I called 911 because I thought I was dying, needless to say had a cat scan and they found that he had put a stitch in my ureter, my right kidney was completely blocked and a few more days I would have lost it, I had to go under about 5 times to fix this problem, but thank God there was no permanent damage and after three months of this (had to have a stent put in for 8 weeks and switched half way through) I was back to normal.
I'm sure all will be ok, just this crasy fear of something going wrong again, the gray matter is nothing to play with.

[Alex265]

Well, today was the " feather that broke the camel's back" called doctor and told him to schedule the surgery for first or second week of january if possible, had so much pain had to leave work, usually they start on my way home from work. Just going to pray that all goes well and I have none of the things that could go wrong after or during surgery. Just can't live with pain anymore.
Alex

[selmaS]

HI Alex....I am so sorry u had so much pain, but it seems we all have that point where once that point is passed we know we can not take nemore.

There r some things u can do to try and keep the pain at bay....avoid stress...lol...I know this time of year it is not easy, and u have a few kids...right?.....so , I know.
But, once they r in bed, draw a warm bath and light a few candles and play some relaxing music.....

We do have a list of anti inflammatory foods on the Health Pages which can help as well.

Do not lift heavy objects from above the shoulders or below the waist.....I consider a gallon of milk a heavy object.....

These r a few things u can try until u have surgery.....

I pray u have a pain free evening
"selma"

[laratterman]

Alex,

There is so much good that has already been spoken, but I wanted to share with you a website that has a "long-list" of symptoms... maybe it will help you in knowing what's what!  Please go to chiarione.org and on the left side of the page, click on symptoms.

Blessings to you!

Lori

[Alex265]

wow, thank you for all the replies and good words, thank god I found this place, my husband tells I'm obssessed  with this, he's sick of hearing me talk about it, but I'm in pain all the time and scared out of my mind too,how can you not be, so many things, symptoms, surgery coming up etc.
Went to walk in clinic yesterday and thank god they gave me some percocet, does not take all pain away but at least takes intensity of it and I can function, they gave me enough until my NS mails me a prescription but then his nurse called and told me he does not want to prescribe pre op pain meds only post op and to see my pcp. If I don't get some I will not be able to function and with the holidays it's going to make it so hard to make it a good one for the kids.
I wonder, I had been intense pain free for a few days, but then pain started real bad on thursday, on monday tuesday and wednesday I had picked up at least three times daily a preschooler having tamtrums (new student), could this have started the intense pain again? My NS had told me not to do any heavy lifting and this child is chunky, Selma u tell me anything heavier then a gallon? Now it makes sence why all of a sudden. During my weekly wednesday meeting i did mention I couldn't keep picking her up because it was killing my lower back, and was decided two of us would be picking her up when throwing down and running away tantrums started, should I not pick her up at all? even with help?  Guess I waited to long.

[Alex265]

Hi,
Just checked out the chiarione.org website, I have so many of the symptoms it's scary but I've mentioned some of them to NS or other doctors I had seen before they say no, not related to chiari, some ex are: heavy legs, frequent urination, sinus problems for almost a year, throat closing feeling and so many more even the spots where my head kills always no also.

[selmaS]

Hi All...wanted to let u know we also have a list of symptoms on our Health Pages here on MedHelp......FYI

[n40066]

hey alex!
a belated welcome to our chiari family.  i've been mia for a while as i just had decompression surgery on 11/23.  i, as so many of us here, can related to everything you say, from symptoms to emotions.  from my own personal experience, i believe you are making the right decision to have the surgery.  many of my symptoms are gone completely, for now anyway.  the relief i felt was immediate in many ways.  i'd be happy to talk to you about if it will help you.  just send me a pm and i will give you my #.  

as for the husband, let him worry about what he thinks/doesn't think is real.  it didn't completely sink in for my family until the day of the surgery.  they were supportive all along, but just could not fully understand the magnitude of the problem until the day of surgery.  then, and only then, did they fully understand!

good luck and Godspeed on your recovery!  it's still easier for me to talk than to type, so again, if you'd like to talk, just let me know.
elizabeth

[Kadi223]

Hi there,

I have been diagnosed with Chiari and I have an apt. with Dr. Heilman in 2 weeks, glad to hear you liked him.  I searched out Boston Dr.s for the best, and he was one that I thought looked promising.

[omslp]

Hi Alex
I'm from Middleboro but work in New Bedford so I travel through Acushnet 2 days each week.  How are things with you??  How was your surgery??  I was just diagnosed with ACM1 in August and I do not have the severe headaches just a nagging one every single morning.  Sometimes it goes away for a while but comes back off and on all day long.  I started getting this humming in my ear and pressure in my head all the time now and at night my neck hurts no matter which side I sleep on.  Humming has gotten worse and now there's hearing loss also.  I have a 6mm herniation and after seeing the ENT I have an appointment with Dr Heilman in a couple of weeks.  Wondering what it was like.  I know he will not do anything but I need to know that what I feel is not just in my mind...
Olinda

[megthp]

I saw Dr Heilman last week.  I also have a 6-7mm herniation.  He was pleasant, laid back, easy to talk to and very thorough.  He took lots of time to answer all of my questions.  In the end, he said the surgery was technically an easy surgery, but the biggest risk of the surgery is that it won't alleviate my symptoms.  He ordered what he called a "chiari MRI", which is a combination of a cine MRI (to visualize spinal fluid flow and determine whether there is a blockage) and imaging of the spine to see whether I have a syrinx.  He worked with his radiology department to create this special MRI sequence just for chiari patients.  Depending on the results, we will discuss surgery.  

I've seen a few different specialists, and they aren't sure whether the chiari is causing my symptoms or whether I have some sort of chronic migraine.  At this point, I've been out of work for several months with debilitating symptoms, so even if surgery isn't a clear shot at alleviating my symptoms, I'm willing to try just about anything.

Best of luck with your appointment!
Meghan

[Stephiec79]

I am in central MA. I have an appt with neurology at MGH this Friday. Actually I was referred there by Dr. Heilman's office. They wouldn't see me because I don't have any recent MRI images, and my current NL won't order any so they referred me to MGH. I am so nervous, because I'm afraid that they are going to give me a hard time and over look my issues. Please keep us updated! Glad to see a couple of Bostonians in the group!

[omslp]

Hi and thanks for the response.  Tomorrow is my appointment with Dr. Heilman.  The more I read these blogs the more I'm convinced that my case is very mild.  So sorry to hear you are not working because of this...hope all works your way.  
Where are you from?  How long was your initial appointment?  When do you go back for the chiari MRI?
Olinda

[MelissaF916]

Wow!! After reading all these comments I am amazed. I was diagnosed a few years ago with a mild form of Chiari I. I too have a bulging disk as well as congenital fusion of my C4-C5 vertebrea. I experience the oddest symptoms and actually found this blog b/c I started exercising and EVERY time I do, I end up with neck pain and a headache the next day. I wanted advice on working out and came across this blog. I get neck pain, headaches, blurred vision at times, ringing in my ears, and I too get headaches from sleeping-no matter which side I sleep on. I have been placed on a medication that reduces the amount of CSF that my body produces. I think it does help. I do get tingling in my fingers/toes, but this is supposidly a side affect of the meds. I think I am still in denial of my condition. At 31 years of age, I just get tired of feeling bad and I try to pretend it isn't there. But the more I read, the more I realize, Chiari I IS what I have and it IS real. I am not a candidate for surgery as mine isn't as bad as  other cases and they don't feel it would help. Thanks for this blog! Any info. you can give me on exercising and what to do or not to do would be relaly great!!

[selmaS]

Hi and welcome to the Chiari forum.

May I ask u when the last time u had a MRI?..r u aware that u could have changes to ur condition?.....were u ever checked for related conditions?....like syringomyelia, tethered cord, ehlers-danlos? and others?

Since we have this from birth, many of us dismiss symptoms just like the drs dismiss us and say what u have is a mild case of chiari or it is an incidental finding...we adjust to deal with the symptoms that were feel r normal....the drs most have not been exposed to the new views on chiari....Old info on the web says it is a rare condition, but there r way too many of us for it to be rare, the only rare thing about chiari is drs that understand it.

Try getting copies of ur old MRI's so u have something to compare new ones to..and going forward always ask for copies of all testing and the reports, it makes it easier to get a second opinion.

We r happy to have u join us, but we r not happy for the reasons that bring u.

"selma"

[MelissaF916]

Funny that you ask me that! That is exactly why I'm looking for a new Dr. My neuroligist died suddenly so I went to see his partner. My symptoms aren't "worse" per say-but more frequent. I suggested another MRI b/c I'd like to know if there are any changes. She said it wasn't necessary!! She literally just sat there through the whole consult. She never checked me or anything. My old dr. ALWAYS checked me out EVERY visit. He checked my balance, my eyes (for pressure, etc. behind them) and all reflexes. She was a moron. So after that, I've been on the hunt for a new Dr. But I know I want one that specializes in Chirai!! Also, I have been working with a personal trainer and after EVERY session, I'm left with neck pain and a headache. I have done some research and I now believe that it is b/c I was lifting too much weight. According to all that I've read, I shouldn't be lifting any more than 15lbs. So I have a new trainer who is listening to me and knows my needs and my goals which is great. But I will for sure keep you posted as to my search for a neurologist!! I am going to check into the two in MD that were on the other page:) Thank you for responding to me!! It has been nice to read peoples comments and symptoms and know that I'm not alone!! The ringing in the ears, which is just one of my symptoms, has affected me since I was about 6 years old!! It drives me crazy! I had a traumatic car accident at age 16 and I think that's what triggered my Chiari symptoms to surface. I started getting "migraines" about a year later but wasn't diagnosed correctly until about 2-3 years ago! Any help/suggestions you may have, I will gladly take:)

[selmaS]

Well always ask for copies of ur MRI's and the reports, it makes it easier to get a 2nd opinion....and when looking for a chiari dr, make sure that is all they do that way u will have experience behind them and know the care will be there as well.

Keep me posted on ur progress

"selma"

BTW- ne changes in symptoms suggests a change in the chiari and should require a MRI if the other MRI is older than 6 months.

[MelissaF916]

I will do that! I work at the hospital where my MRI was done-so I have all the records:) But it was about 2 years ago! So I for sure want a new one! Thanks for everything:)