What Now?!?

Symptoms and Treatments
1

I need some opinions and I think I came to the right place.

I have had two surgeries for my Chiari

#1 12/2012, he removed part of the skull and just scored the dura and during surgery he said the CSF went to normal so he didn't want to do the full blown surgery if it wasn't needed.

Nine months later I started having issues again had a MRI and CSF was blocked again

#2 02/2014, this time he did the entire surgery including the lamenectomy and duraplasty.

In November 2014 I started having issues again and even completely black out, balance getting worse, headaches, right upper extremity weakness.

Had another MRI today, It states I have pulsatile CSF anterior to the medulla at the craniocervical junction but again, no obvious pulsatile CSF flow is indentified posterior to the cerebellar tonsils despite there being a widely patent CSF space (that is word for word)

It also states the tonsils are still low lieing but do not seem to be compressed.

So at this point I am really confused about why I still after two surgeries am not getting the CSF where it needs to be.

Would this means another procedure may be in order?

Does this make any since to anyone else? Thanks for your help and time!!

2

Hi!

The problem is that the surgeries are rarely a 'cure'. Because Chiari is a 'syndrome' (an accumulation of symptoms), there is no real 'causal' connection. So, while decompression surgery in theory should diminish the symptoms by diminishing 'intra-cranial pressure', it does not really get at the cause of the problem.

From what I have read on the subject, only 50% of the people who have the surgery have diminished symptoms (and, often, the symptoms return so there are multiple surgeries); and some people get worse or have new symptoms.

This is not to discourage anyone from having the surgery as, if the condition is caught when a person is young and the symptoms are not too severe, it could very well aid. But, it's no a 'cure' but only an rather imprecise way of getting at the real cause with a decent chance of relieving some symptoms though not necessarily in the long term.

So, that the symptoms recur after a period of time, or new symptoms crop-up, is not surprising but, more likely, the norm.

My sincere wishes for good outcomes.

3

My daughter had the surgery in October- her symptoms are back- migraines, dizziness tired a lot. MRI is scheduled for April. This is very frustrating.

4

Hi!

Really, it's impossible to provide useful advice as each case each unique.

I've been dealing with Chiari for over 25 years. Despite it having been very disabling for many years and excruciating pain the first few years, I've never taken medication or had the surgery (it was not possible in my case due to the fact that I have several conditions making surgery very complicated as to be dangerous). Still, I may not have had the surgery had I'd been a 'normal' case, as I am not convinced, from my research, that it is useful in the long term. I would not disuade anyone from having the surgery because, theoretically, one would assume that lowering the 'intra-cranial pressure' should help the symptoms if not 'cure' (that is, resolve) the condition. But it's just that, after the surgery, some people are worse and most people have the symptoms recur. I decided that the best thing to do was to 'accept' my condition and live within the new limitations; which was not easy for me as I was a high-achieving person who would normally 'push the envelope'.

I long ago abandoned the idea that I would become miraculously 'my old self' (use to run marathons, lift weights, work out four a day until I was 39 and was first afflicted with Chiari symptoms). But now, by being careful of what I do, I can live a life without having the worse of the symptoms.

What I highly recommend for pain and other symptoms is acupuncture. You might have to try three or four different acupuncturists before you find one that is right for your situation (usually can tell with a couple of weeks of treatment). While massage and other therapies provide temporary relief, acupunture best deals with the neurological symptom; and, while it's not likely a cure, it does deal directly with the nervous system which is what is most affected by Chiari syndrome. In my case, over a period of about six months of treatment, it reduced my pain by about 90%. Since then, I've only had treatments when I worsen my condition by doing something which is too much for me -- mainly lifting.

I wish I could be more helpful. It's a very frustrating condition because, one looks normal but, inside, things are very wrong. And, specialists will all look at the same MRI (I've had many over the years); all agree on the Chiari; and most often disagree as to what might be causing the symptoms. And, even if there is agreement, remember decompression surgery is not a cure but just another way to deal with symptoms -- as are drugs, acupuncture etc.

My sincere best of luck!

5

Chiari is a congenital malformation, so doctors do know the cause. It isn't a syndrome (a collection of symptoms akin to IBS). While it is true that surgery is not a cure, only a treatment, research shows that over 80% of people see some relief of symptoms post op. I was lucky to be in this percentage myself. Usually when they don't it's because they had other issues in addition to Chiari or they were inadequately decompressed. Another issue is having too much bone removed which can lead to the brain "slumping". If your current NS doesn't have satisfactory answers I would definitely consider getting a second opinion on your situation. Most chiari specialists will review your MRIs.

Look around on csfinfo.org for more information about conditions that can co-exist with chiari. I hope you get the help you are needing! Keep us posted!

6

Careful there. In many parts of the world. Type 1 Chiari malformation is just that and has nothing to do with any associated symptoms. Because of the variance of symptoms or the frequent absence of the symptoms the associated "disease" is in fact treated as a syndrome seperatley from the deformity.

If it were anything else, there would be very little controversy involved and treatment would be very straight forward with predictable results. This is very much an international board.

By the same token csfino.org and its "Real Doctor videos" so frequently refereed to here is generally recognized the world over (or for that matter in this country) as an advocacy group of physicians and patients in favor of a particular treatment track. they do good work in terms of awareness, but they are NOT a scientific group and should not be considered as one.

Anglyn said:

Chiari is a congenital malformation, so doctors do know the cause. It isn't a syndrome (a collection of symptoms akin to IBS). While it is true that surgery is not a cure, only a treatment, research shows that over 80% of people see some relief of symptoms post op. I was lucky to be in this percentage myself. Usually when they don't it's because they had other issues in addition to Chiari or they were inadequately decompressed. Another issue is having too much bone removed which can lead to the brain "slumping". If your current NS doesn't have satisfactory answers I would definitely consider getting a second opinion on your situation. Most chiari specialists will review your MRIs.

Look around on csfinfo.org for more information about conditions that can co-exist with chiari. I hope you get the help you are needing! Keep us posted!

7

Hello!

I thank everyone for their responses. I have checked out the website. I have submitted my records to Mayfield Chairi Clinic in Ohio for their professional opinion as well. I will keep updating on the answers that I get. My true concerns is the fact regardless of the surgeries I still am not getting flow posterior of the tonsils. I understand that which Chiair comes symptoms but the fact the they haven't gotten the CSF flow to run like it should after two surgeries is kind of scary to me.

8

I am not quite sure what you are talking about FixerUpper and angylyn. In many parts of the world including the NHS. Symptoms are considered seperately from a Type 1 Chiari and are treated as a syndrome. It was you that decided to take to task a member for having that experience or an experience different than you own. I fail to understand the problem with pointing out the CSF is not widley recognized as the authority you believe it to be. It is a advocacy agency in large part funded by Stryker. Their information is fine. No one suggested ignoring anyone. but consider there are many sources.

Of course your CSF docs are part of the scientific community, no one said they weren't. BUT they also are not THE scientific community.

Papers and research are presented in peer reviewed publications, and the best presented at various conferences by invitations. That usually doesn't include YouTube.

Occasionally a peer reviewed paper that is a compilation of multilple studies such as this one;

http://www.surgicalneurologyint.com/article.asp?issn=2152-7806;year...

Of course it contrass the statement "However it is the only true treatment right now and a life of pain pills and muscle relaxers isn't going to help anyone but pharmaceutical companies." despite statement of checking out options which of course is the problem when you really don't believe it

Somebody like chuck says something contrary or has a different experience they are corrected immediately, oh there is plenty of fluff around it, but its clear what some of you think.

Heres the problem. Surgery isn't the only option, lots of folks can't have surgery choose not to. fall in the multiple grey areas. They may be in the process of waiting for surgery, other had surgery and are in that 30% that fail (it doesn't matter why it failed maybe it is undiagnosed EDS, but mostly it isn't) are having a difficult recovery. medications, mindfulness, pain management, postural changes etc that can help them are suddenly a new an bad direction????

9

All this because an international member related his experience of the Symptoms being treated as syndrome and the CSF protocol is not generally accepted internationally and I said it was okay? I don't recall ever saying not to research. I did say that strangers on the internet's advice might not be valid. I would think that is common sense not a point of argument. I think you are reading far more into my few comments than is there.

In any event I have no idea what the mods are up too........

10

I thought I would jump in here to clarify some information about CSFinfo.org. All scientific material on the CSFinfo.org website is written by physicians or scientists. The materials are reviewed by our medical and scientific committee before being added to the website. All lectures are given by physicians or scientists. So, although the Chiari & Syringomyelia Foundation (CSF) is a patient advocacy organization, it is deemed a reliable source for medical and scientific information. CSF is the only organization of its kind to receive the distinction of being HONCode certified. Other big patient advocacy organizations such as the American Heart Association and the American Cancer Society also hold this distinction. See below.

Chiari & Syringomyelia Foundation
is in compliance with the HONcode
http://www.CSFinfo.org/
Validity of certificate 29 Aug 2014 - Aug 2015
Significance of the HONcode

The Health on the Net (HON) certificate serves as a guarantee that this health website, at the date of its certification, complies with and pledges to honor the 8 principles of the HON Code of Conduct as drawn up by the HON foundation.

Also— CSF is not exclusively sponsored by any one company. The implication that Stryker funds our organization is false.

Thanks so much.

Cathy Poznik

Chapter Coordinator

Chiari & Syringomyelia Foundation


TJ1 said:

Careful there. In many parts of the world. Type 1 Chiari malformation is just that and has nothing to do with any associated symptoms. Because of the variance of symptoms or the frequent absence of the symptoms the associated "disease" is in fact treated as a syndrome seperatley from the deformity.

If it were anything else, there would be very little controversy involved and treatment would be very straight forward with predictable results. This is very much an international board.

By the same token csfino.org and its "Real Doctor videos" so frequently refereed to here is generally recognized the world over (or for that matter in this country) as an advocacy group of physicians and patients in favor of a particular treatment track. they do good work in terms of awareness, but they are NOT a scientific group and should not be considered as one.

Anglyn said:

Chiari is a congenital malformation, so doctors do know the cause. It isn't a syndrome (a collection of symptoms akin to IBS). While it is true that surgery is not a cure, only a treatment, research shows that over 80% of people see some relief of symptoms post op. I was lucky to be in this percentage myself. Usually when they don't it's because they had other issues in addition to Chiari or they were inadequately decompressed. Another issue is having too much bone removed which can lead to the brain "slumping". If your current NS doesn't have satisfactory answers I would definitely consider getting a second opinion on your situation. Most chiari specialists will review your MRIs.

Look around on csfinfo.org for more information about conditions that can co-exist with chiari. I hope you get the help you are needing! Keep us posted!

11

I encourage anyone to fact check my opinions and links just as I have challenged them to fact check yours.

There is not one thing wrong with CSF, nor did I say their info was bad, was that CSF it is not accepted internationally as a scientific organization. It is a patient advocacy Group and a good one. (my apologies for insinuiting that a major manufacturer of equipment and supplies for Chiari Surgery was their only donor - clearly they are not)

I was clear there may very well be (and there is) a number of scientist/physicians that would and do disagree with their physicians opinions and positions. Internationally there is far less surgery done done Type I and no syrinx just as roughly 50% of NS in this country won't operate under those circumstances.

I haven't offered any medical opinions or suggested anything I say be accepted without question. The first post I made that lead to a mod melt down suggesting the OP was getting good advice from her doctor and many of the questions tests cardiac you were peppering immediately with were likely already answered and the bigger questions of associated disorders (EDS in particular) would be handled with the micro-array that would likley have been ordered by one of the specialists. Low and behold thats exactly what she confirmed, but by then your "information team" was concentrating its efforts on who I was and lost interest. In fact I believe the exact phrase was "one of my vacuums had fallen over and sucked my brains out"

The only other post I made questioning anything going on was after the remnants of that team decided to correct a member on his experience.

I challenge you to find a post anywhere where I disagree with surgery or attempted to point a patient in any particular direction or even offer a medical opinion beyond offering a reason to ask ones physician for advice. There are some new mods here broadening the information base and encouraging additional participation from members partially in response to a number of member complaints that these board were being dominated by several moderators. That has nothing to do with me.

As I said you are spending an inordinate amount of time putting words in my mouth. I would hope you would stay on offering the information and support much as you have for several years. Instead of going for me, why not discuss what I have said (not what you think I have said)???