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Surgery and symptom alleviation

I am probably having surgery soon. I have MANY chiari symptoms. 12+...After surgery do most people only have alleviation of headache or other symptoms too (i.e. - dizziness, imbalance, slurred speech, etc).

Dr. Ellenbogen at University of Washington said all they can really guarantee is that headache will get better after PFD. But Dr. Di said all symptoms could get better. Anyone have input on this? I know Chiari is incurable but right now my headaches aren't bad enough for surgery, it's my other symptoms that bother me more. And I don't want to go into surgery if all I can count on is the headache getting better.

Thanks for your time
Best Answer
620923 tn?1452915648
COMMUNITY LEADER
Hi...everyone is diff as to how they will respond from the surgery. Some can develop other issues, like pusedotumor cerebri also know as intercranial hypertension.

Some may need a revision.....some can be symptoms free for a few yrs and then get some  back...I feel, it depends on u, what activities u do, how long u allow ur self to heal.ect....plus, u have to look at ur own history....I am a slow healer bcuz I have EDS....so, I know it may take me longer than someone else....plus, I can not look at a teenager and compare myself to them...they have age on their side...lol...the older we get the longer it may take...closer to my 1 yr post op annv I found my balance issues getting better.....I felt stronger if that makes sense.....I still can be at a loss for words.....large crowds still make me feel tense.....and loud noise or multiple people talking at once still drives me crazy....it can not help everything : )

Were u checked for other issues like EDS, DDD, tethered cord?

"selma"

Were u told surgery would be a benefit?.
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1236570 tn?1276738525
lol! Go Dawgs!

I also was interested in the endoscopic version also but it just was not feasible for me to travel that far. If you go ahead with it I'll be very interested to hear how you are doing after.
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Avatar universal
thanks stephanie...Yes I have heard Dr. ellenbogen is amazing - unfortunately he wouldn't see me just had his PA call me on his behalf as he didn't feel I was surgical yet. To be honest that was frustrating as all I wanted was a consultation to understand more about chiari. The reason I am looking to travel clear across the US to Dr. Di is because he is the only NS in the US who performs the PFD endoscopically. He patented the surgery and I believe only 3 Doc's in the world can do it - same procedure but only a 2 cm incision so recover time is less...

So glad to hear your surgery went well at UW - It's a great hospital - Go DAWGS! :)

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1236570 tn?1276738525
Dr. Ellenbogen did my surgery and if you do decide to go ahead with it i STRONGLY recommend him! I think that he says its only definite for the HA is because the other types of symptoms can be quite vague and can come from any number of other things and he does not want to get your hopes up. He's pretty good at giving it to you straight so you can make an informed decision. However I know Dr. Di is held in high regard also. If you're like me, I went and got a third opinion for a tie breaker. One doctor gave me a 50/50 chance of getting better and the other two told me I was a pretty classic straight forward case and would probably benefit from doing the surgery. But both also told me that I wasn't in a emergent situation and to take my time making my decision so I could be absolutely sure it was what I wanted.

Good luck,
Stephanie
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620923 tn?1452915648
COMMUNITY LEADER
oh I forgot to mention...someone with EDS has a higher risk of rejection ...so a patch for a PFD can not be foreign...mine was made from skin harvested from my scalp.
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620923 tn?1452915648
COMMUNITY LEADER
well....it all depends on which type u have...but joint pain...hyperflexing a joint...popping in and out of the socket...like a shoulder or hip.

Easy to bruise....slow to heal.....here is a list from the web:keep in mind u would not have all of this...it all depends on the type of EDS u have...if memory serves me, there r 5 types.

Symptoms of Ehlers-Danlos syndrome

The list of signs and symptoms mentioned in various sources for Ehlers-Danlos syndrome includes the 41 symptoms listed below:

Joint looseness
Fragile small blood vessels
Abnormal scar formation
Abnormal wound healing
Soft skin
Velvety skin
Stretchy skin
Curved spine
Eye problems
Weak internal organs
Weak uterus
Weak intestines
Weak large blood vessels
Hyperelastic skin
Fragile skin
Hyperextensible joints
Joint dislocation
Bleeding tendency
Bruising tendency
Soft pseudotumors
Calcified cysts
Atrophic scars
Visceral anomalies
Widely spaced eyes
Epicanthal folds
Broad nasal bridge
Subcutaneous nodules
Gastrointestinal hernia
Diverticular effusion
Synovial effusion
Premature birth
Congenital hip dislocation
Club feet
Crossed eyes
Blue membrane around sclera
Perforation of eye globe
Diminished cornea
Myopia
Glaucoma
Easy bruising
Pseudotumors
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Avatar universal
What are the symptoms of EDS?
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620923 tn?1452915648
COMMUNITY LEADER
Hi...

1- DDD= degenerative disk disease....we all get this as we age, chairians tend to get it sooner...it can cause a herniated disk which could imping a nerve....


I ask about these as I was dx with them and know all too well how they can give similar symptoms as chiari....so it is important to look and know.

I am not allowed to drive bcuz of a herniated disk in my neck...too much movement...turn ect can cause a CSF blockage as the disk is herniated in an area I have  stinosis  as well.

Stinosis= narrowing of the cord.

No worries

"selma"
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Avatar universal
Thanks for your response.

1. Were you checked for other issues like EDS, DDD and tethered cord?

He said my lumbar spine looked normal so I think tethered cord is ruled out.
What is EDS and DDD? what are the symptoms? Diagnosis?

2. Were u told surgery would be a benefit?

Dr. Di believed surgery would alleviate or help my symptoms. He was QUITE confident of this. He said DIAGNOSIS - 100 percent chiari - symptoms - definitely from Chiari - he said surgery SHOULD help.

Thanks again for all your insight Selma!
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