Chiari decompression for symptoms buy no CSF restriction?

[JillibilliMom]

16 y.o. has acquired mild Chiari from a head injury, extremely symptomatic (over 40 symptoms that appeared immediately after the injury) but CINE MRI shows no CSF obstruction, so it's not considered surgical.  However, I'm wondering if there is a surgeon out there who does something minimally invasive to relieve the pressure the brain tonsils are putting on the nerves within the brain stem?  Her NS said its the pressure on the nerves that are causing all her symptoms, but said just to continue physical and occupational therapy.  For what?  Indefinitely?  Shouldn't we be worried about permanent nerve damage?  Her Chiari headache is constant as are all her other pain and dysfunction symptoms.  Anyone know of a specialist who digs just a little deeper and helps just a little more?

[selmaS]

Hi and welcome to the Chiari forum.

The decompression surgery is done to restore CSF flow so that surgery would not benefit her. Are you sure her Chiari or low lying tonsils were acquired?..I mean, are you sure she didn't have Chiari before and her injury just triggered it?
And was the Dr that saw her a true Chiari specialist?

[JillibilliMom]

Both neurosurgeons have experience in Chiari, the second more aggressive one especially.  It just seems to me that if we know there's compression on the nerves, why can't it be relieved?  The NS is very positive that it was acquired.  She had absolutely no symptoms prior to her concussion/whiplash injury.  Everything started falling apart right after it happened. I guess she could have had it prior to, but does it really matter?  The injury could have triggered it, but in the end, Chiari is causing her symptoms.

I'm worried about long term nerve damage.  I mean, how long can the nerves be compromised before there is permanent damage?

[selmaS]

I guess I didn't word my question correctly.....did they DX with Chiari or low lying tonsils? Chiari is a malformation of the skull in which some can have symptoms all their life or not until an injury that triggers it and sometimes referred to as being acquired...OR low lying tonsils where the injury causes the tonsils to herniate and not a small skull.....it does matter since the congenital condition can have related conditions that can impact recovery post op.

I understand your concern, and I have had symptoms as long as I can remember and even getting a DX later in life 48 surgery at 49....I have bounced back better than I could have imagined.

[JillibilliMom]

Hmmm...well, she has both really.  The radiology report states "minor tonsillar ectopy without evidence for Chiari malformation.  But both neurosurgeons said she has Chiari, the second surgeon said it's Chiari 1, and explained that the impact of the TBI pushed her brain into an opening that was already too small to begin with.  So now I'm really confused.  Nobody explained to me that there was a difference between the two.  Which did you have?  I'm glad your surgery was so successful.  I just don't want her to wait any longer than she has to.  Her headaches are getting worse and no pain meds help.

[selmaS]

The big problem most of us have with Drs regardless if they are NS or NL is they consider any herniation of the tonsils Chiari when Chiari is the malformation of the skull and the herniation is a result of the area being too small....sigh....
I have Chiari with a partially retroflexed odontoid , tethered cord, mild scoliosis, Ehlers-Danlos....and a few other comorbid conditions....
Surgery does not always help with the headaches.....I still get them just not as many or to the same severity as before....and some can get worse so take this time and educate yourself and research the Drs as best you can as this is the most important time.....you need to have the right Dr. that is key. Also keep in mind surgery may not be the answer for your daughter at this time.....have her keep a journal as to when she has headaches to rate them 1 -10 and then keep a list of activities and even food she ate to see what could be her triggers to help  avoid those and lessen the headaches.

[ChiariWolf]

A severe fall can trigger symptoms. So yes an accident can as well. But neither can cause a true chiari malformation. Perhaps the NS is simply trying to explain without all the details??? Or he doesn't really know. Either way I have to agree with Selma in that it is unclear how decompression surgery could help if there is no CSF blockage.
If it were me I'd make sure the NS realizes you are a customer and deserve explanations for answers he/she gives you.

We all want relief especially when it is our child that is in pain. Not trying to scare you but remember this is a very serious surgery that you are discussing. If someone is messing around in your child's brain you want the absolute best even if it requires travel. It definitely requires research which you evidently are doing or you would not be here.

Sorry to hear about your daughter. I have a son dealing with worsening chiari symptoms. I know it is not fun but commend you for trying to help her.

Chiari Wolf

[JillibilliMom]

Thank you both for your informative responses.  I feel I need to look further for answers.  I need details!  How do I know if a surgeon is a true specialst or just an NS who performs decompression surgery?  I have no idea how to trust if a Chiari institute is truly the place to go.

[selmaS]

Most times when you google the Drs name it should indicate their specialities....if it lists a few things before Chiari then it is a surgeon that does Chiari in addition to other things and not a true specialist....you want one that lists Chiari and related conditions.....JMHO
We do have a list of names that you can research and if you have someone in mind I can PM you if they were not a good place to go...we can not say on the public forum about negative info on Drs or clinics......

[JillibilliMom]

selmaS - Where can I find that list of Doctor's names?  And how can I PM you if needed as you offered?  (Thank you for that, btw!)

I'm sorry I haven't responded sooner, my daughter was in a car accident and suffered yet another concussion.  Honestly, the Post Concussion Syndrome and Chiari symptoms are pretty much the same; we have no idea what we're dealing with here.

Thank you!

[selmaS]

OMG!! No worries....is she ok? Sending prayers her way, Tell me what states you can travel to for Drs and I will send you lists for the states if we have them.
PM (private message) is available when you accept me as a friend....then it is something you can do when you put the cursor over my name it should be an option and you should also find it on my profile page to be friends and also on notes and the PM's themselves.....

[Tufayo]

Hello im in the same boat. I live in upstate ny

[selmaS]

NY  state has a larger list, but you may still have to travel...an d you will want several opinions.....the list I will post below is not a referral nor an endorsement of those listed, it is a tool to help you get started researching Drs.
NEW YORK

Chiari Institute
Great Neck, New York
[phone]
[phone]
· Dr. Harold Rekate
· Dr. Salvitore Insinga


· Dr. Rohit Verma
University Orthopaedic Associates at Great Neck
611 Northern Boulevard
Suite 200
Great Neck, NY 11021

Tel: [phone]
Fax: [phone]


· Dr. Sol Mora
Caremount Medical Group
600 Westage Business Ctr. Dr.
Fishkill, NY 12524

· Dr. Amit Shelat
200 Old Country Rd Suite 370
, Mineola, NY 11501
Phone:[phone]


Dr. Paolo Bolognese  MD
The Chiari Neurosurgical Center@ NSP
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
[phone]

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310

[JillibilliMom]

SelmaS - thank you for the list!  I was actually getting info together to send to  the Institute in Great Neck when she had her car accident.  FYI - Dr. Rekate is retiring in December and is no longer scheduling surgeries, but they offered a Skype consult.
She was sideswiped and since she already had post concussion syndrome, she's very susceptible to concussion.  All her symptoms increased and it set her back about a year in her recovery.  It's very upsetting.  
We're in Michigan.  I will travel anywhere needed but if you have a list of others you suggest I'd greatly appreciate it.  I also sent a friend request.  Thank you!

[selmaS]

I went to TCi and had my surgery with Dr Insinga there and would have no doubts going to him again.....did they say who would be running TCI if he is leaving....Dr R that is....he came just after my surgery so I never had contact with him....
Sending prayers to your daughter and to help with finding the right Dr.....

[JillibilliMom]

She did not say, but Dr. Insinga is the only other doctor on the website.  I like that they'll Skype with us before deciding if she should come out.  I'm going to send the paperwork and imaging on Monday.
Thank you for your prayers, and your help, much appreciated!

[selmaS]

You are very welcome....do let me know how the skype session goes....that is something newer that was not done when I went....Good Luck

[lasel22]

Hi JillibilliMom, I'm sorry your daughter is going through this. I too had a smaller herniation with many symptoms and my cine flow study came back normal.  I saw many neurosurgeons who claimed to specialize in chiari but really weren't "true specialists."  I ended up having surgery with Dr. Bolognese and it helped a lot. I have other issues and am not 100% but I can function now.  Also during surgery, they use intraoperative Doppler ultrasound to look at flow before opening you up and my flow was reduced, it just seemed normal during the cine flow mri, but it wasn't.

Also, I sent my images and a description of my symptoms to Holly Gilmer of Michigan head and spine institute and she also agreed that chiari was the problem. She and her staff were very helpful. I never saw her in person as long island is closer for me, but just wanted to let you know since you are in Michigan if you wanted a second opinion.  Who knows you may have already seen her?

[JillibilliMom]

lasel22 - We actually saw Dr. Gilmer!  She confirmed Chiari 1 but she feels Jill's symptoms are from post concussion syndrome and doesn't feel she'd benefit from decompression surgery at this time. But since the car accident, her symptoms have increased tremendously and I'm concerned there may be more happening with the Chiari.  I'm going to contact her office to give her an update and see if she wants to do more testing.  Thank you for telling me your experience with Dr. Bolognese.  I'll look into him as well.

[selmaS]

Also check for whip lash it too can worsen Chiari symptoms.....and can get overlooked.

[JillibilliMom]

Yes, she most definitely has whiplash

[selmaS]

PT can help her with the pain related to that BUT make sure the PT is very familiar with Chiari before allowing them to treat.

[JillibilliMom]

We're actually looking into stem cell injection for the damaged neck ligaments.  Looks promising.  Also an occipital nerve block.  Plus, she'll be getting a new MRI since the accident to see if anything has changed.

[selmaS]

Keep us posted on what you find out....and I am interested in how the stem cell injection works.....

[JillibilliMom]

She had lidocaine injected in the occipital nerve and also a couple areas in her neck.  She's feeling relief from some of the headaches (she has about 6 different kinds) and also the neck pain, plus the tension headache that she normally gets at the occipital areas hasn't come back.  But, of course, her neck muscles tensed up so badly so she has that pain, but she's so familiar with her body that she can distinguish between the different types of pain.  Doc did lido as a diagnostic tool and feels since she had a positive experience with pain relief that the stem cell injection for the neck ligaments would be successful. He'll harvest them from her hips.  We'll see him Monday for Botox in her trap muscles, then schedule stem cell procedure 2 weeks from then

[selmaS]

Fantastic  glad she had relief and the Dr is confident to move forward to help her with more relief.

[JillibilliMom]

We're currently in Chicago to get some upright MRIs of the brain and neck.  Doc is interested to see how it all looks when she's upright since her symptoms are a bit better when lying down.  Should be interesting!

[selmaS]

Good luck....I never had an upright MRI ....but I did not have relief lying down. Keep me posted.

[JillibilliMom]

Looking with an unprofessional eye at the upright cervical MRI image, it looks like she has a retroflexed odontoid in addition to the tonsillar herniation.  Someone on a Chiari support Facebook group confirmed it.  That really compounds things, doesn't it?

[selmaS]

Yes, it makes the area even tighter....I have a partially retroflexed odontoid and it was the reason my Drs did a decompression surgery on me.......

[JillibilliMom]

I heard that having an RO makes it more likely for brain drop after decompression.  But your surgery was successful?  

I also noticed in this most recent MRI that the herniation doesn't look as severe as it did in the Cine MRI.  Could be less clarity and larger slices, but I wonder if it every retracts or varies?

[selmaS]

Not sure it is brain slump due to RO or the inexperience of the Dr doing the surgery....and it is the result of taking away too much bone......Yes I would classify my surgery as successful it was in May of '09 and I am doing so much better ...it took time to see all the benefits...and I took my time doing things, I listened to my body and stopped when I needed to....got to get back to doing that...as an older person having had the surgery and having related conditions I still have symptoms and usually it is because I am over doing it and pushing too much......but when I listen I feel so good.
Angles or different slices can change the appearance of the herniation.....imagine a upside   down pear....if sliced into 3 equal parts, 2 will be similar in length...but one will appear larger....the middle section will be larger...and the 2 side slices will appear shorter so depending on what slice is being viewed, it can appear that the length changed, when in fact it did not

[JillibilliMom]

I'm glad your surgery was successful and yes, i believe it's so important to listen to your body's signals.  My daughter has become extremely in tune with her body because of this.  And thank you for the information, you are extremely helpful!