Chiari Malformation Community
Surgery advice please!!
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Surgery advice please!!

I am scheduled for Chiari surgery on August 30 in Pittsburgh with Dr. Jho. He does this surgery endoscopically. I have not seen him in person yet (appt on the 29th). I sent him my brain and cervical spine MRIs and a bunch of paperwork and he called me on Tuesday saying I need surgery for the Chiari and then another 2 for cervical stenosis. I have it on both sides of my spine in 3 places each.  

I feel pretty good about my decision to have the surgery, just wondering if anyone has any reasons why I shouldn't have it done? Has anyone regretted surgery? Is it crazy to decide this over the phone and through the mail? Dr. Jho has done the procedure many, many times the nurse assures me, but I can't find anyone who has seen him.

I will go back 2 months later and have another endoscopic surgery for cervical stenosis and then back again 2 months after that for the final endoscopic surgery for the cervical stenosis. Again, does anyone have any thoughts on that?


Please feel free to be as honest as you like! I really want to make sure I am making the right decision. In a way, I would like more time to decide, but know that more time does nothing but add to my worrying! I'm scared at this point that the damage will get worse if I wait. I'm having a really hard time walking at this point and feel like waiting could just cause more damage.


Thanks you for reading :)

**forgot to mention...I told his nurse that I have never had a CINE MRI. She said she has never heard of that and it's not necessary. Should I be worried about that??
16 Comments Post a Comment
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620923_tn?1393294254

  Hi I would advise u to meet the Dr b4 u decide to have surgery with him...a NS gets paid when they do surgery...u want a Dr that can tell u y u need surgery, that u have a syrinx or a CSF obstruction...ect...

I would not feel comfortable with a Dr that schedules surgery without meeting u and doing a physical exam first....this just sounds odd to me...

DO u have a syrinx?....this is not a surgery u have to rush into...what r ur symptoms?
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Avatar_n_tn
I agree with Selma 100%!!  
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Avatar_f_tn
He wants to meet me the day before. I live in Virginia and he is in Pittsburgh. I thought it was common to send MRIs and paperwork because there are so few specialists? I was told I can always cancel the surgery for the following day if I choose to.

I was only told that I have a 10-12 mm Chiari and Cervical Stenosis at C4, C5, and C6 on the left and the right side of my spine.

I have constant dizziness, numbness in arms/hands/feet/legs/face, pain on the left side of my neck, fullness in my left ear, headaches at times but not too bad, trouble using my hands, very off balance, coordination problems, some cognitive issues (short term memory loss, trouble finding words, spelling things incorrectly), trouble walking. Its become really hard to walk over the past 2 weeks. I'm scared it's going to get worse and will become permanent.
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620923_tn?1393294254

  It is common to send ur info, but u generally have a visit with a full exam b4 surgery is even suggested....I have never heard of surgery being suggested with out the Dr seeing u in person....that does not sound right.

Please see a few NS's b4 u decide on surgery at all.

I was dx'd with Chiari and cervical stenosis and waited a little over a yr b4 I scheduled surgery.....

Unless u have breathing issues or drop attacks this is not an emergency issue, take ur time.
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2054597_tn?1344048250
That sounds very odd i have never heard of such a thing,a doctor booking a surgery over the phone a brain surgery at that! and hasnt even seen you yet! I deff agree with selma on this personally me ive been too 4NS and  finally the 4th one i knew was it ive seen her many times and has had many mris done and i go back to her in oct to book my surgery If i was you i would highly suggest you deff go see or try to find another NS (chiari specialists) who will do a fully exam n order all the correct mris and go over everything with you befor talking anything about surgery. It is a MAJOR surgery n you have to be sure to know youve found the right NS. Good Luck with everything
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Avatar_f_tn
Whoa, that sent a chill down my spine.  Why no exam, why so many surgeries?!  What is stenosis on both sides of the spine?

Please get another opinion from a Chiari specialist.   And best of luck.
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Avatar_f_tn
I have seen a NS here in Virginia that wants to do the Chiari surgery (he has seen me already). I see him again this Monday and at this appointment he said we need to discuss surgery. I have seen an ENT (to rule out inner ear issues) who also said I need the surgery. I sent my MRIs and paperwork to The Chiari Institute who accepted me as a patient. I am waiting on a call back from a nurse. I want to make sure they agree with Dr. Jho's diagnosis. I thought surgery scheduled over the phone was weird too, but his nurse said I am free to cancel the surgery on the 30th if I don't feel comfortable/confident on the 29th when I see him.


I really appreciate your comments. I felt good about my decision, but now I'm not sure. I thought this was how it went being that Chiari and Chiari drs are so rare. Please let me know if my added info still makes you think I'm making a bad decision.
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Avatar_f_tn
Viva001 -

Spinal stenosis is an abnormal narrowing (stenosis) of the spinal canal that may occur in any of the regions of the spine. This narrowing causes a restriction to the spinal cord, resulting in a neurological deficit. Symptoms include pain, numbness, paraesthesia, and loss of motor control. The location of the stenosis determines which area of the body is affected.[1] With spinal stenosis, the spinal cord is narrowed at the vertebral canal, which is a foramen between the vertebrae where the spinal cord passes through.[2] There are several types of spinal stenosis: lumbar stenosis and cervical stenosis being the most frequent. While lumbar spinal stenosis is more common, cervical spinal stenosis is more dangerous because it involves compression of the spinal cord.
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Avatar_f_tn
Yes, I know what stenosis is; i was decompressed for cervical stenosis in 2000.  I have never heard of it referred to "on the left & right side of the spine."  
Did the othe drs agree w/arthroscopic surgery, 3x?
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Avatar_f_tn
Im sorry Viva001! I misunderstood you. I'm probably not explaining it correctly. He said cervical stenosis at C4, C5, and C6 on the left and right side. I'm still probably not saying it right...I get a little confused about all of this!

I will ask my local NS on Monday if he agrees and when the Chiari Institute finally calls back, I will also ask them. If they are not all 100% giving me the same answers, I will definitely rethink this!
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Avatar_f_tn
Maybe endoscopic surgery is done differently, on the sides of the vertebrae?  I had an extensive laminectomy, from the back.  You night want to ask about that, and also if there would be fusion involved.  From my understanding, that is even more invasive and is avoided if at all possible.

Where in VA are you?  I always recommend my NS in NC.  I'm 9 wk post op, & my recovery has been nothing short of a miracle.  (I know that Chiari will always be with me though).
Good luck & Keep us posted.  There are many experienced people here.

Btw, how do you feel?
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Avatar_f_tn
Yes, it is done on the sides of the vertebrae and there is no fusion involved. Everything about his endoscopic procedure appeals to me. After reading about his procedures I want no part of the traditional type surgeries. I will be out of the hospital in a day or two or recovered in 4-6 weeks for each procedure. I know nothing is definite, but I have to hope this is how it will go :)

I'm in Va Beach. Where are you in NC?

I am feeling pretty bad and happy to have this all in process. I am having a very hard time walking and even standing for more than  a few minutes. I am pretty young and am just ready to get my life back.

Thanks so much for your replies Viva001, and to everyone...I really appreciate it!
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1679858_tn?1346768781
I think from a doctor's point of view (I am not one) that they would schedule an appointment with you first, to do all the necessary testing etc, BEFORE they worry about setting the surgery date.  It seems rushed to me!
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Avatar_f_tn
I would slow things down, it seems very rushed to me.  I'm 8 weeks post op PFD and fusion c1, c2 and I will tell you-- this is a major surgery with a recovery that is very up and down.  Don't get me wrong, it's ultimately up to you, but I would be very leery of someone who is recommending a major surgery prior to meeting and hearing my story and how the Chiari is affecting my activities of daily living.  Take your time.  A good doc will understand and be there when you're ready.  
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Avatar_n_tn
Not only the rushed piece...  but you have to be comfortable with the surgeon.  We talked to a surgeon on the list and really didn't like him at all.  He seemed to really know what he was talking about, but there was something about him we didn't like.  Then our family doctor sent us to another well respected surgeon but he was a flake in our opinion!  No way I was gonna let him cut into my husband's brain!  It was the 3rd surgeon that we fell in love with instantly.  

You can't meet a surgeon one day and have surgery the next....  it's not right for HIM to schedule things that way, and it doesn't give YOU time to get to know and TRUST him.  

Just my opinion...
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2054597_tn?1344048250
Did you end up making another app with a diff NS? or did you end up seeing that one?
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