Avatar universal

Should I go straight to a Chiari specialist? Should I have surgery?

After years of struggling with almost daily headaches, visual disturbances, coordination and other neuro issues, I am now finally on the road to getting answers. Maybe.

A recent MRI (Cine) revealed a 6mm cerebellar tonsil lowering with compromised CSF flow dorsally. From what I can tell, these findings--along with my symptoms--adds up to a Chiari I malformation.

I don't know if the scan revealed a syrinx; no mention was made either way. There is also a "patulous" sella turcica.

I had another MRI four years ago I had been told was "normal." Yesterday I called and asked for the report. It turns out that at that time I had a 2mm cerebellar tonsil lowering at that time and an "empty sella."

(I have discovered that an empty sella presenting with chronic headaches should be investigated for increased intracranial pressure and is not normal. I’m pretty upset that my MRI was nonetheless read as “normal” and absolutely nothing else was done, and now four years later my condition has deteriorated further. But that’s a whole other story for another day.)

At any rate, the radiologist this time has recommended a follow up with a neurosurgeon. My PCP put in the referral two days ago, but I still don’t even have an appointment. I’m admittedly going crazy waiting to find out what’s next.

After reading experiences on this board and other online resources, I’m not really sure what to do. I live in a community with a teaching hospital and level 1 trauma center, but it serves a relatively small population. Based on my research, I would guess that few or none of the neurosurgeons here have dealt with Chiari malformation in adults.

Based on the experience of others, I’m betting that I will be told that it’s not significant and will thus continue my journey to find someone who will take this seriously. I’m worried this will further delay definitive treatment.

At any rate, here are my questions from those of you who have already made this trek:

1) Should I already be looking to a larger community (with more neurosurgeons who have Chiari specialization) to try to secure an appointment? I’m lucky in that I have insurance that is almost universally accepted, so I don’t think that will be a problem. I’m more concerned about waiting periods and travel and all that. (I’m dreading how much this is going to cost even with insurance!) I’ve heard that waits to see Chiari specialists can be excruciatingly long. But I’d like to get in as soon as possible.

2) On a related note, anyone have experience with Chiari treatment in Dallas, TX? I’m looking at UT Southwestern. I can at least get a direct flight to Dallas. I’m also considering University of Colorado Hospital in Aurora (Denver area).

3) If surgery is given to me as an option, should I do it? I’m looking for honest answers here. I’ve read SO many horror stories that I’m pretty scared right now. My quality of life is definitely compromised—I can only work part-time, I don’t have the mental concentration and stamina I need to accomplish the things I set out to do most days, I’m in nearly constant pain—but it could also be a LOT worse. I’ve been able to “craft” a life that is bearable, and for the first time in a long time feel I am at least contributing something to the world. I’m still active and can travel with compromises made to accommodate my symptoms. BUT they’re getting worse. And there’s so much more I wish I could do. I’ve had to give up almost all my “big” dreams (like finishing writing a novel and get it published or going back to school) because I just don’t have the stamina for any big projects.

4) Is there anyone here who has had decompression surgery who is actually happy they got it? Anyone who is, say, 10 or more years out and who has not had a relapse of symptoms or required further surgery? And have you been able to return to an active, reasonably productive life?

I have a MILLION other questions, but I’ll start with these. My primary concerns are finding a neurosurgeon who will take me seriously and deciding whether surgery is the best option. I don’t want to be on more prescription medications. I’m already on medications for autoimmune disorders I have and my kidneys are compromised as it is (I can’t even take ibuprofen anymore for pain relief!). At this point, I am leaning toward an all or nothing solution. Go big or go home.
5 Responses
Avatar universal
I’m about in the same boat as you. Bless you in finding a dr. I’m very concerned as well, finding a dr has been a venture, however Selma, she will help you, she has lists of drs. Not to recommend, but yet give you guidance from others whom have used certain drs, whether great or no. I have learned when looking if it doesn’t say CHIARI in their description, no go, or at least that’s been my experience. I have already had 4 neck surgeries and a back, none done correctly. So I get your GO BIG OR GO HOME. Hopefully we BOTH can find a dr sometime that can guide us, and one we feel confident with. Best of luck to you!!
Wow...Sorry to hear about your experiences. I hope you are also on the right track toward finding the right doctor and the right treatment!
Thank you, I have empty sella as well, my thyroid dr told me my pituitary gland is not functioning but I have had an appt for over 6 mos to see “the. BEST?” Endo. In my state. I was just diagnosed with Chiari this yr, in Feb. my vision is my concern, I had to get new glasses after 10 mos. of my prior new ones, they had to put prisms in the lenses cause they said the blurry vision was due to my eyes trying to cross... it’s a horrible place to be when you can’t see your face in a mirror it is scary, it’s getting worse.... to find a real dr. Period for any of my med issues is a joke. Best of luck to you, if you find a real dr. you will hopefully be able to go forward!! Best wishes!!
Oh, man. So sorry to hear that! I've had double vision all my life, and now I wonder if it's related to this. I've worn prisms since the double vision was discovered, and it's made a huge difference. I hope it does for you as well. I can tell it's getting worse, but that could be age and not the Chiari. I hope they get your pituitary fixed. I need to have mine checked, as I think a lot of my symptoms are because of the empty sella.
Ty!! From what my eye dr explained the empty sella is from some form of pressure.... it helped my vision with my glasses, but I can not see my face to apply makeup etc. Maybe that’s a good thing since I’m getting up there in yrs...?? My eye dr, when I brought him my mri and blood test results, he knew nothing about Chiari, however from that appt, to my next a week later, he found out what it was and addressed it spot on. That’s very impressive to me since I can’t get a dr. here to address any of my issues, let alone these new diagnosis. It’s scary!! Where do you live? Have you had any luck with a neurosurgeon? I went to a “supposed” “Chiari specialist” with 2 new MRI’s read by 2 seperate neurologists and both said I had Chiari, he said I didn’t, and blew me off! Then I went to my neurosurgeon, that I have asked repeatedly for yrs now if I had it or not ( I have 2-3 family members diagnosed in the past 4 yrs.) he continually said no, I went to him about 2 mos ago with my new cds and he said I have it but didn’t feel my 2 pages of side effects had a thing to do with it. He did order me a ct of my brain and neck w/ and w/o contrast to make sure I have good flow in my arteries etc. I feel I need a CINE MRI, but I have been sick for over 3 weeks and I haven’t even made the appt. hoping it doesn’t show any issues but then who knows either way. I know I need my Hashimotos addressed as the meds at bottom dosage triple my nerve damage side effects! It’s just draining as I am sure you already know. Just curious if you have found a surgeon with any knowledge of these issues, my neurosurgeon said he does 2-3 chiari surgeries a yr... ahhhh NO, I want a dr that does 2-3 a day or week. Not gonna find that here will need to travel to New York I suppose. Best of luck as we all have a lot to think about and do...??!!!
Avatar universal
First of all, I want to admit that I am not 10 years out. That said, I had decompression surgery in Atlanta, Ga at Emory University Hospital 6 years ago and have been very happy with the results. No, I am not completely symptom free, but the difference has been astonishing. I would do it again in a heartbeat. The herniation may continue to grow, so I would definitely get it looked at. Although I chose Emory, I also liked Dr Kim at University of Texas in Houston. The key is finding someone who knows Chiari. Best of luck to you!
That's very reassuring. Thank you. So glad to hear that you had a good doctor and a good outcome!
Avatar universal
I’m only a year and a half out of surgery. From all the info I have read..... and I’ve read as much as I can find.... Chiari is progressive if you are starting experience symptoms then you will continue to experience them probably progressively, the longer there’s pressure on the nerves in your spinal column  the more permanent damage can become. Surgery is not a cure it is only used to manage symptoms, it has been my experience so far that you need  to find a neurosurgeon that has an extensive knowledge of Chiari, not all of them do.
Thanks for the comment. I too have read that the damage can be permanent. Some of my symptoms I've had for 20 or more years, so I'm realistic that not all of them will be reversible. But as long as I can at least get some function back, I'll do it.
620923 tn?1452915648
Hi and welcome to the Chiari forum.

I had my surgery in  '09...is that close enough? I had only one surgery....was told I needed two  others before I had the first and to date still have not had them.....

As for symptom free....surgery is not said to rid of us symptoms, it is done to restore CSF flow and slow progression....help prevent a syrinx from forming.

You said a syrinx was not noted.....but what area was the MRI of?  A syrinx can form anywhere in the spine, so if you have not had an entire spine MRI, you will not know if you have a syrinx or not.

As to how we feel post op.....it depends on you, your age and what other related and non related conditions you may have.

Am I happy I had surgery, you bet I am....I would do it again if I needed to....it was rough, I won't sugar coat it....and no I am not back to the life I had before, but I wouldn't want to go back to that life.....I worked far too many hours a week and felt like an 80 year old when I was in my 40's....I am doing much better, but I still have symptoms but they may be from my related conditions as many have the same symptoms. Hmmm productive life....I should say so....because of the changes to my life's path, being derailed by Chiari....I found new ways to be productive.....I paint, sew...and have a grandson I watch a few days a week, plus I help care for my sister in law who is an adult with Downs and early onset dementia....I also help my mother in law who is in her late 80's and has an ostomy anda had a stroke....I am doing more now with my life then I was before....but I still have to listen to my body and not over do it....and I have my moments when I just can't do more.....BUT I feel I am very productive..and it is also very rewarding what I do with my life.....

I really feel you need to take a deep breath and slow down....rushing into a DX especially if you have the wrong Drs....could lead you to more surgeries and to feeling worse then you do now...from the time I was DX'd until I  had surgery was over a year.....and almost a year until I met the Dr that would do the surgery....I am so grateful for being able to not only find the right Dr, but to have been able to see benefits from the surgery....it is not something that happens right away...it takes time, in fact over the course of several years until I saw all the benefits....and it was all worth it, for me. I am not sure what you mean by relapse of symptoms since I still have symptoms....no I have not had some of my worst symptoms return..I had drop attacks and have not had any since surgery.My headaches I would get when straining are rare.....but still on occasion...and I still get headaches....but I am better able to handle them now....I know what I need to help reduce the pain....and it works most of the time....again it is rare to have it that bad that I can not cope with help from  Ibuprofen and some CBD daily intensive cream.

I would strongly encourage you to search out a true Chiari specialist....CO has one of the country's best Chiari Drs and I heard he is back from retirement!!

Do not expect to get into a Dr right away, and even if you do, do not jump at the first offer of surgery....you need to make sure you are tested and have ALL related conditions ruled out before, and if the Dr does not look into those...run away from that Dr.
Thanks for the thoughtful response. I've read many of your other responses, and appreciate your helpfulness and candor.

To answer your question, I believe the MRI was only of the brain and not even of the cervical spine. Definitely not anything lower than the upper cervical spine at best. So I would suppose I will need further study to rule in or out a syrinx. I wish they would have done the spinal MRI at the time they did the brain MRI, as I know that the presence or absence of a syrinx will change how they approach this. Especially in light of the fact they knew this is what they were looking for when they ordered the MRI. (A CT two weeks ago revealed the herniated tonsils, so the MRI was primarily to check to see if CSF flow was impeded or not.)

Did you have to travel to see the surgeon who ended up doing your surgery, or were you able to find someone locally? How many doctors did you consult before you decided on whether to do the surgery?

I still haven't heard back yet about even getting an appointment with a neurosurgeon. I did some research on the ones locally, and discovered one who has fairly extensive experience with Chiari (though it looks like mostly in children). He's one of the surgeons in the office my PCP's referral was sent to. Do you think it would be appropriate to contact him separately to let him know the full story? This is obviously way out of my PCP's league, and I don't know if she really understands the condition well enough to explain it in the referral. Also, should I try to contact out-of-town Chiari specialists while I'm waiting to be seen by the local neurosurgeon?

Who's the doctor in Colorado you mentioned?
Dr Oro is the Dr is CO that had retired and I heard recently that he is back helping Chiarians.

As to the MRI of the entire spine it is also done to rule out tethered cord, and disk issues......

I did travel out of state to find my Dr.....I tried locally but there are very few that say they are Chiari experts that really are....some I feel got into it seeing it as a cash cow because so many of us are out there , this is not a rare condition, but well informed and experienced Drs are . Well I went to a Chiari conference and listened to many Drs speak on Chiari and related conditions and a few of them spoke with me personally while at the conference. Once home I made the decision to travel out of state because I had been to several Drs locally and it was so confusing....one said the radiologist was over zealous....the next said I didn't have Chiari...and the next said I did, but it was "above him" I asked for suggestions where to go next....he couldn't offer any....then I went to the conference and that is why it was easy to take that trip....and it was to see what they would suggest....I did not go to have surgery....I just needed more answers. I found out I also have Ehlers-Danlos Syndrome, that is a DX I had never had before.

If the MRI was done to check CSF flow was it a CINE MRI? A CINE MRI is one that shows the CSF in motion....to see how it flows....it is typically a two part MRI...the first part seems like any other MRI...then you are brought out to have a contrast added and a clip on your finger to watch BP.....

May I ask, did you get copies of your MRI and the report? If not, contact the facility that did the studies, not the Dr as they will charge you.....get copies of ALL testing going forward....request copies when you sign in for testing and you may need to sign for the report as it takes time for it to be ready, and the MRI on disk should be ready for you to take home the same day as testing.

It depends on your INS if you can contact Drs without a referral...if you can, there should be no reason to wait on the other Dr.....my PCP was not informed on Chiari either, but researched it and was and continues to be a great local source for those with Chiari to help them find help. I tried local NL's,to work with me post op and tried to set it up prior to surgery and none would take me on, so I used my PCP as my post op care provider...I have no use for the local NL and NS's....
Sorry for the delay in responding. But yes, the MRI was a CINE MRI. And thanks for the suggestion about getting the copies of the testing. I wish I had been doing this all along--I might have saved myself four years of frustration if I had even just read the report of the "normal" MRI I had four years ago.

It looks like the wait to see Dr. Oro is quite long, but I might talk to my PCP to see if she'll send the referral. (Looks like they require a referral along with tests before they'll consider taking on a new patient.)

How did they discover your Ehlers-Danlos? Did you have symptoms, like the hypermobility? I don't have any of the symptoms, but I suppose I should maybe have the genetic testing done just in case.

(By the way, it's been a week, and I still haven't even gotten a call from the local NS's office about an appointment time.)
It was at the office of my Chiari specialist.....they had their own NL on staff and he did an eval along with the intake with the NP.....I never thought I was hypermobile because I couldn't move certain ways....but was easy to bruise, slow to heal....but the reason I couldn't move was because my muscles were tight from holding me together....so even if we do not appear to be hypermobile we just might be. BTW- I never had genetic testing for EDS....just the eval at the office. Back then the Dr to see for EDS had a 2 year waiting list and a few states away.....I still have not made an appointment as I also no longer drive, so to make an appointment so far out and away when you need someone else to get you there is not easy....so I back burnered it until I really find I need to get it done.

That is not surprising....Drs take time to call patients...plus you may have missed the monthly meeting as to who they will take in this month....it seems many NS/NL hold meetings with the group to discuss patients and whom they will take on....
992677 tn?1537668903
You have already received some valuable input here. However, being as I recall being in your boat several years ago... we will add my input.

Firstly, a larger community does not necessarily mean better doctors for a given issue. For example - my own case - after many months of trying to find out what was wrong we ended up at Cleveland Clinic Main Campus in Ohio. Since then I have seen more NS and a couple NL in this massive hospital that DO NOT know what to do with Chiari than I have that do know what to do. Only two of those doctors seemed to be able to relate to the patients feelings or what you go through. Both of those Doctors are now gone from Cleveland. I do hear they have another there now who is supposedly skilled with CM.  

Every person has their own individuality just as we have our own physiological differences. As such we each will recover/recoup in different ways. Yet I respect your desire to research as with deformities such as CM that is the only way you will ever get an idea what to expect. No book or doctor can give truthful answers as to what you should expect.

Sorry I babbled enough so I'll try and answer what I think you were asking in shortened fashion.

First the surgery- do I regret it? NO!
Why, did it take away all the symptoms? No. In my case there is also a cerebral arachnid cyst that was growing and causing further compression and blockage. After the surgery the Doctor apologized to me as he said the post op testing didn't reveal the degree of csf pressure in my cranium. In his estimation some of my symptoms will never go away due to nerve damage caused in the cns from that pressure. The bright side of the story though is as Selma pointed out to you. No further damage can be caused by CM after the surgery.

Second- I'm in Ohio so can't really help with doctors in TX.

Thirdly- That is such an individual choice I refuse to give you a yes or no answer here. I know from personal experience that is most likely what you want at this time. I would highly recommend coming back to this list with your doctors comments and explanations though. Others may be able to offer input the more we know about your particular situation. One bit of advise I'd give you though. Write down all your questions now. Take those questions to the doctor. If he can't or won't take the time to answer them in a way that you can comprehend then more on. Just as there are dozens of M&Ms in a fresh bag - there are many more doctors on the planet. To find the right doctor is the key to your outcome. Thus again if he/she can't make you feel confident then the surgery should raise questions in your mind. Also perhaps take an astute friend or family member with you in case you miss something or forget to ask something that you wish to ask. My wife was very helpful in that way.

I do hope this babble helps you feel more comfortable at least to a degree.

Thank you! I appreciate your comments here and the others I've read on the forum. You have good words of wisdom. I'm still waiting to even get my appointment with the NS scheduled, but once I have some more information I will definitely be posting it here.

Your positive experience is very reassuring.
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