Dr. Recommends Chiari Surgery

[Angelika_23]

Hello,

Well, I went to Wisconsin and the doctor recommends Chiari surgery for me. He wanted to go ahead and schedule it, but I held back on that. I wanted to talk to my husband about it. Plus, I feel like I would like to hear another validating opinion before I let someone cut into my head.

What do you guys think?

Angela

[worththewords]

Personally, I would get a second (third or fourth) opinion if I were in your position. That's a big decision to make and I wouldn't want to rush into it. Best of luck to you in the decision making process and keep us informed of what you decide to do.

[stellakitty]

Before letting him cut into your head you NEED to be evaluated for a connective tissue disorder... If you have EDS or something that changes the gameplan... Unfortunately I know from personal experience!!!

I had the surgery June '06 and went from being unable to sit upright and on O2 (with tons of other sx) to putting around the mall wihtout my wheelchair like a normal teenager. But this was after I had contracted Bacterial Meningitis AND several strains of staph that required the doctors here in Denver to go back into my head only 3 weeks after the surgery. According to my doctors I'm very lucky that I didn't die ( I wouldn't know.... That experience is a blur to me.) The sense of normalcy I regained only lasted 3 months as well... Now I'm almost worse off than I was before....

I'm on opiates daily that I wasn't on before the decompression because the head and neck pain are now totally unbearable... I had headpain before, but I was medicating it with a spray ("Stadol") probably only 3-4 times a week. My right leg no longer works either... I could go on all day about what is wrong with my body now.... This is becuase I have severe EDS (according to genetics at University of Iowa) and I have cranial settling and cranial cervical instability.... I should've had a "cranio cervical fusion" at the same time as my decompression (according to Dr. Menezes University of Iowa).

I am awaiting the CCF... I go back to Iowa on Jan. 18 and hopefully then we will hav everything figured out...

But I think you need to make sure that your "glue" (collegen) is up to par before undergoing this surgery. I don't want to see you go through the same thing that I have been going through. Plus this surgery hurts like **** (that part I do remember and remember it quite well....)

Alexa

[Rachel]

Hello Angela,

Chiari surgery is a big step. It may be the right thing for you to do, but I would definitely recommend getting more opinions. Also, like Alexa said, do check into EDS and make sure to rule that out before surgery.

I hope that you can find some good advice from several doctors and make a well informed decision.

All the best,

Rachel

[Sophia3]

I think you get at least a SECOND opinion....also there are new ways to do the Chiari surgery with a one inch incision.

Does the doctor YOU see do it that way?

You need to discuss this on message boards with POST OP Chiari pts and anybody you know who has been through the surgery(ies). It can often involved more than one surgery.

I say this not to be negative but factual. I would need to know your total dx and body parts affected, risks to health to leave things as they ARE... What if it does not help the ANS stuff? You will have that on top of recovery.

however the bits and pieces I have heard. you have real neurological stuff going on, right? Like parts of body go limp?

Could you walk a straignt line heel to toe?

You need to make a lists of pros and cons.

AND who can come to your house and take care of you and your kids while you recover.

RESTING and NOT doing things is mandatory with this surgery.

Some folks go out and go on roller coasters and snow boarding, and I have heard some surgeons say to them, "do not come to me after I fixed your neck by your careless behavior"

ALSO Stella kitty gives great advice about EDS. Rule OUT that.

I am surprised he would NOT be more conservative in his approach to you.....if a doc could prove life threatening problems, then I would do it. I am taking he found serious out of bounds of the norm on your neurological exam?

Like if your spinal pressures are HIGH, frequent headaches, visual problems, and problems with arms/legs/pain and such, . . .

I hope this post helps more than it confuses. Talk to your chiari buddy and SEEK COUNSEL!!

You need to digest this a few days, Angela. and there are the logistics of travel by air if you go back to this surgeon.

And help with the kids is the biggie.

And let us know what you decide. I will then support you no matter what.

[Maxine]

I second what Stellakitty said. You want to be definately sure you don't have EDS. I was not even diagnosed by a geneticist that I had hypermobile EDS--(HEDS) until I was 47 years old--- I have been hypermobile all my life, and had I been diagnosed in earlier years, I may not have the spine problems I have today----at least not as severely as I do now.

I was told I have chiari -0- also, but I also have congenital cervical spine stenosis, cervical/cranial instability, and a host of other spine issues---(see signature line). I already had surgery to correct two severly herniated disks. After the surgery to correct the herniated discs, I had a fusion, and a titanium plate added to the area--(c5,6, and 7). Six months after the surgery I started to have more problems.

The problems excellerated more after that. The surgeon was not aware of my EDS----I wasn't aware of my EDS either, not until 4 years after the surgery. The area where I had my surgery healed well, and is still holding up well. If he hadn't used the titanium plate, who knows what would have happened. Not knowing about the EDS, I think the surgeon made the best decision at the time. Even "normal" people can have a cascade of problems above and below an area that is fused and plated, because those areas are stressed more. When a person has EDS, this is amost certain---------and usually much more severe.

I did not have a decompression, so my cervical/cranial instability has remained "micro", meaning, no cranial settling.

I have had several opinions, and most said I didn't need chiari surgery, but the surgeon who did my cervical spine fusion surgery said he was concerned about a prominant vetebral artery pressing on the brain stem that may need to be corrected.

He also said I needed a full cervical spine laminectomy, and the congenital stenosis is causing a lot of symptoms. The orthopedic surgeon agreed also.

However, both surgeons realize what would happen to my cervical/cranial instability if my neck has bone removed, and a fusion from c-3 and down. The posterior fossa--(lower skull) is small, and combined with the vetebral artery pressing on brain stem---(combined with the instability), is the main reason I continue to be evaluated on a regular basis by my local neurologist, and the orthopedic surgeon my EDS specialist suggested. However, surgery is on hold for now until a better way is figured out to handle my situation.

Caution needs to be used in your situation. Make sure you do not have EDS. If the surgeon is not aware, or not experienced with EDS, consequences can be severe. A geneticist who specializes in EDS can rule in or out an EDS problem.

I'm sorry your going though this right now, as I know this can be really scary, frustrating, and confusing.

Please take your time in this decision, and make sure you do not have EDS.

Big Hug to you.

Maxine :0)

[Mrs. Burschman]

Angela,

We're here for you while you figure everything out!

Sending you a big (very gentle!) hug,

Amy

[Angelika_23]

Thanks everyone!

My husband is a wreck - he is just about to fall apart.

I have made an appointment to see a doctor at the Cleveland Clinic next week. I can't believe I got in so early! They assured me it was a chiari specialist. I am very interested to see what he has to say.

I really appreciate all your support and advice. You are all wonderful!

I will certainly bring up the EDS thing next week when I see the doctor.

Angela

[Rachel]

Angela,

I'm glad you'll be able to get in to see a chiari specialist so soon! I hope the appointment goes well and that the doctor has some good advice for you. Let us know how things go.

Rachel

[dizzygirl]

Im in the same boat u are in girl! this is a really hard decision to make...im sending you a PM....

[ajw4790]

Sorry I don't have any words of wisdom, but I just wanted to wish you luck! I think a second opinion makes sense, and I hope it goes well and is helpful!

Sounds like an awful lot to deal with on top of everything else! Hang in there!

[MightyMouse]

I hope your husband and you can take a deep breath and make your choices with all the options well understood and well researched by you. Do talk to, or at least contact via forums, Chiari folks. You can check out the World Arnold Chiari site, (google WACMA). Chiari surgery, generally speaking, has mixed outcomes--so be sure that you're particular case is one that absolutely requires surgery before you do anything.

Make absolutely certain a connective tissue disorder is ruled out--I have one and probably still would have had my spinal surgery anyway b/c of the condition I was in, but I would have made some different choices about what type of graft was used if I was aware of my collagen disorder before my surgery took place.

Hang in there. Nina

[kjdube]

I had the surgery in 2002 and it was not painful at all (this is probably uncommon).

But it took 5 months to be able to walk again as dysautonomia and other problems afterwards prevented recovery. And all the chiari problems did NOT go away, in fact some things are now much worse.

They did not know at the time I had EDS and POTS, not to mention elevated intracranial pressure. The ICP is worse since the surgery and now I am at risk of losing my eyesight -- although these things could have excelerated faster without surgery and there is nothing anyone can do to fix my problems.

I had opinions prior from several chiari experts. Some of the doctors could not believe I could even walk, much less be physically fit, and all said the surgery was necessary to prevent further damage.

My advice is to go to the best you can afford, if you can go to the Chiari Institute in NY, Dr. Lazareff in CA, Dr Oro in CO, Dr Frim in IL, Dr Bejjani at UPMC, Dr Ellenbogen in Seattle, or Dr Heffezz in WI, these are some of the top chiari specialists.

Also if you have kids better have them checked. All of my children have chiari also. Join the chiari support group, you will learn much from this group..

http://health.groups.yahoo.com/group/chiari/

Take Care

Keli

[Angelika_23]

Hello,

I have set up two appointments for second (and third) opinions. I am seeing a neurosurgeon here in the Cincinnati area on Wednesday, and going to the Cleveland Clinic on Thursday. I am hoping that everyone agrees, so that I only have to make the decision on where to have it done. It would be awful if all three of them had completely different opinions.

I was in touch with a person who had hers done here in Cincinnati, and it was so nice to hear positive things. Those chiari boards are terrifying to read. I think I will stay away from them.

And yes, I will ask about testing for EDS.

Thanks everyone for your thoughts and input

Angela

[dizzygirl]

hope that your upcomimg appointments go smoothly....

[Maxine]

Angela,

My EDS specialist/geneticist is in Cincinnati, but a referral is required. If you would like his name and location feel free to send me a PM.

I'm one of those who saw about 5 neurosurgeons. Three agreed on the congenital cervical spine stenosis, but two blew it off as nothing, 2 agreed on mild chiari with little or no herniation, and two of them agreed of cervical/cranial instability. As time progressed, my local neurologist has been taking me more seriously. My lower skull is small, so basically I have stenosis there----thus the squeezing of the brain stem area from that along with the prominant artery.

There is also a lesion spotted there (medulla) from my local neurologist, along with lesions in peri-ventricular area of my brain. I saw on orthopedic surgeon recommended by my EDS doc, and he is one of those that agreed on the cervical/cranial instability along with one neurosurgeon. About three of them agree on serious disk disease.

I saw one local neurosurgeon, and one neurologist that were so lost, that FRANK from MASH is a better Doc then them.--

I felt a real mess until the orthopedic surgeon confirmed the instability that I know I have, as I can feel it--- Then he told me that my major problems come from the stenosis, and instabiltiy---along with more disc herniations and desiccation.

The lesions don't help either.

I do hope you have an easier time ----and the other opinions aren't as mixed up as mine were.

Hang in there.

Maxine :0)

[Sophia3]

Wow. I am GLAD you are getting THREE opinions.

I hope you make the best decision for yourself. I look forward to a full report of all your doctors visits. And what they say and how you decide.

At least doctors are paying attention to your complaints finally.

Good luck with the visits.

[Angelika_23]

Okay, now I am annoyed.

I was looking on Cleveland Clinic's website (just for fun) and noticed that the doctor I am seeing is a neurologist, not a neurosurgeon. Not only that, but he does not specialize or even seem to have an interest in Chiari! I called the clinic and asked them about it. They said I have to see a neurologist first, then if the neurologist feels it is necessary, they will refer me on to a neurosurgeon. Sheesh!

We've done the neurologist thing here, and they all ignored the Chiari. Is it possible the neuro at Cleveland will take me seriously, r will this just be a wasted trip?

Angela

[Maxine]

I went to the Cleveland Clinic, and they had me see a physical therapist MD first. She thought is was necessary to see a neurosurgeon. She said I was hyper mobile----(this was before I saw the EDS geneticist---about 2 years before). I went to see the neurosurgeon, and he said I had problems with my spine, but did not think I had actual chiari. He also blew off any instability issues, even though I told him I could literally feel my neck move horizonally---- I might only be a fraction of an inch----but that's enough! It's really all over the place---it slips and slides---clicks and clacks---ect.

He wanted me to do a bone scan to see if I healed properly from my cervical spine surgery in 2002. I never got it done, as several x-rays showed everything fused well------but I have the help of a titanium plate to keep things in check. However, everything above and below it went down hill, and became even more unstable.

There is pannus growth on the odontoid bone, and if you look this up, it usually will say something about instability, even ADVANCED instability------ As I have already said, I have the instability, but no cranial settling.

The PT/MD also said I should see the POTS Physical Therapist, which I heard was a joke----

Maxine :0)

[Michelle Sawicki]

There is a special way that chiari surgery must be performed if you do have EDS. Even then, there is no gaurantee that patients will improve, or that the symptoms will not return (or even worsen) with time. Please watch the video titled "Ehlers-Danlos conference" on the Chiari Institute's website.

Michelle

[Angelika_23]

Thanks for the advice Michelle!

I saw a neurosurgeon here in Cincinnati. I really liked him. He did not jump on the surgery bandwagon so quickly. He is ordering some CINE MRI's because he wants to see the movement of my CSF. He also said I might be having complications from my meningitis I had back in 2001. If that is the case, then the Chiari surgery would not be helpful. He also said that would not be as easy as Chiari to fix. (As if the Chiari surgery is easy...)

I am waiting for the MRI's to be scheduled. Hopefully they will be soon.

Angela

[Sophia3]

Angela

I am SO HAPPY you got a second opinion so soon ..and he is NOT jumping on the Chiari bandwagon (A most complicated merry go round !!)

Also if it is complications from a previous illness, that is good he is evaluating THAT!

Here' hoping and praying meds can fix the problems or any pressures you are having..and you can tolerate the meds...even if you have to start on PEDIATRIC doses.

Do keep us posted as you must feel like you have slipped into ANOTHER WORLD.

Hey, wasn't that the name of a SOAP OPERA!! It was great in it's early years but I digress.

Try to stay patient (NO EASY FEAT!!) as you await the next turn (Wasn't there a soap AS THE WORLD TURNS?) Hmm..sorry, not funny.

I am sending thoughts and prayers to you and a blanket for this cold weather!!

[Angelika_23]

Hello,

Had my CINE MRI's today. My left ear was just pulsing in pain when it was over. I don't know if the earplugs they gave me caused that, or what. The noise didn't seem to bother me, so I don't think it was a loud noise thing.

My tachycardia decided to rear its head more than usual today, and had the techs in a fluster. They kept checking the finger monitor and moving it around. I wasn't nervous about the MRI, so not sure why it happened.

We had to drive home in a snow/sleet storm. Not fun. Made the tachycardia all the more interesting.

Am home now with a slight earache (it is slowly going a way) and a headache (it is slowly coming on).

Hopefully I'll get some results next week!

Angela

[Sophia3]

Good to see an update, Angela. Hope your ear is getting better. Let us know when you see the doctor for the results.

The snow is turning to rain here now, with occasional sleet hitting the window...should be a soggy mess.

Heard a local guy on talk radio today said he went to the mall this morning and NOBODY was there!! Afraid of the big WHITE DEATH...he said he got his Christmas shopping done in 90 minutes!

Anyway, glad you got home ok.

[Angelika_23]

Okay,

Got my results back from the doctor here in Cincy. HE says my problem is mild and is not severe enough for surgery. He advised me to see a headache neurologist and follow up with my cardiologist.

I feel like someone just punched me. I thought I had an answer, and now I have two well-known doctors totally disagreeing with each other. Who is right? Is Chiari causing my dysautonomia, or do I have POTS only???

Angela