Multiple surgeries for Chiari?? Even years later??

[Lovemygirls2]

I am scheduled to have decompression surgery for my Chiari on October 28- 3 weeks from Tuesday.  I am beginning to get a little nervous about it.  My question is this?  Are there alot of people out there who have had the decompression surgery and then maybe years down the road start to have all the symptoms all over again?  Seems like that is a common theme lately on the forum.  Just curious as to how many people out there have had either multiple surgeries for their Chiari or years later after the surgery begin to have problems again.  My husband and I were just talking last night after reading some of the posts- he said it would really stink to have to have this surgery every so many years!  I thought yeah it would!  I would also love to hear from anyone who has had the decompression surgery once- and they are still doing fine years later.  I just kind of like to know what to expect!  If possible!  :)

[selmaS]

  Hi and welcome to the Chiari forum.

I am glad you got some positive info from this thread, however it is older and the member you are addressing your comment to has not been active since the last post on this thread....

I hope you continue to share your Chiari journey with the rest of us on a current thread...or starting a new one and letting us know more about you.
Know you are not alone <3

[JanetKP]

I was so pleased to read that after a second decompression surgery, you experienced a marked improvement. I had Chiari decompression March 2013 and a syrinx removed April 2014. Now my symptoms have returned and I feel I really should make an appointment with my Chiari surgeon. But I was hesitant to do so. Having read your post, I most definitely will make an appointment.

[selmaS]

  Hi...Glad they were thorough with the thyroid, but with Hashimoto's u can switch btwn being hyper, hypo and normal...it is never ending it seems....I know I have been both hyper and hypo and for the last few yrs told my levels are "normal" so no more meds....which I feel I am hypo again...

Yes, I had surgery, this May it will be 5 yrs....time flies....

Ne surgery is a trauma to the body and may cause hair loss.....but deff keep checking ur  levels...I get mine done every 6 months bcuz of how they can change.

Have a Joyous Easter <3

[Geri_bytheriver]

Hi again.  Ehlers-Danlos was never brought to my attention.  I can only assume that wasn't part of the problem.

Have a Blessed Easter !

[Geri_bytheriver]

Hello, Thank you for the information.  Iam hypothyroid, they ran all T3, T4, TSH, always very thorough.  I also had a para-thyroid tumor in May of 2011.  Hypercalcemia/hyperparathyroidism, caused hair loss in front part of scalp.  

I had trans-oral decompression, apparently they "screwed" three to four imaging devices on my head, and during the fusion surgery they had to lift my cranium to like retro-fit my skull on rebuilt cervical spine.   So hair loss is probably "normal".  I live in Lansing, MI and go back to Cleveland Clinic (Ohio)  in May 2014.  I'm going to ask about it then.  

Have you had surgery?

I was a mess prior, and was unable to do anything the whole time.  Was very traumatic !!  Had pain from May of 2012, and subsided after they awakened me from the medically induced coma In December 2013. Its a miracle and I feel incredibly blessed for finding surgeon in Ohio.

[selmaS]

  Hi and welcome to the Chiari forum.

When did ur hair start to fall out as it is normal post op, but if ur surgery was in Dec it should have stopped by now....

When u say ur thyroid is "normal" Have u have more testing such as for an auto immune thyroid condition? Many only look at TSH and it is possible for these levels to be in the normal range and still have a thyroid issue.....ask ur Dr to look at free T3 and Free T4 and TPO antibodies and TSH....

May I ask how do u feel? Are u off all pain meds?

Do u also have Ehlers-Danlos that u had a fusion?

[Geri_bytheriver]

Hello, I had Chairi surgery December 2013, first Dec. 10th  decom- pression trans-orally, next on the 12th I had Fusion on back of head and neck.  My surgeon was Dr. Krishnaney at the Cleveland Clinic.....Wonderful staff, awesome place...I feel they saved my life.  My hair is falling out at a rapid pace.  Is it related?  My thyroid is normal.  Thank you
Geri

[selmaS]

  HI and welcome to the Chiari forum.

Thank you for sharing ur chiari experience with us...it is so good to hear from others that have been thru the same thing.

  So many that have lingering issues are finding that they have other related conditions to chiari that have caused some symptoms to continue.


   And depending on how long a nerve was compressed it is possible to have some nerve damage....ur Dr can tell u if that is the case if u have lasting effects post op.

  Again, thanks for sharing and I hope u stick around and continue to share ur journey with us.

    "selma"

[tkay64]

I had surgery in Feb. 2000.  Two more surgeries that year to fix pseudomenigiocele..(bag of leaking spinal fluid on back of my hear where patch didn't seal)  Turns out I had MRSA at the site of the surgery....inside my head not on the skin.  Doin pretty good from that surgery. Swam everyday per dr orders to strengthen neck muscles.  Took several years for the aphasia (wrong/forgotten words) to get better, still get headaches and really dizzy with weather fronts, and extremely windy days.  Lots of people that have had some kind of brain thing experience this.  I worked hard reading and talking to get over many symptoms.  I had Chiari 1, couldn't feel below knees, tripping, dropping things (hands getting numb) and extreme headaches pressure in temple and around ears and jaw, the only relief I felt was to hang my head over backwards on a pillow or off of the bed.  Wish you all well

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing ur chiari experience with us, this is so valuable to newbies of the condition and we can not say it enuff that we have to research the drs to make sure they r in fact well experienced with chiari.

I am sorry to hear u r developing pressure HA's again, have u been to have testing to see if it is PTC?

   "selma"

[pughouse]

I have had two surgerys. My first one was done by a doctor with little experience who caused more problems then he fixed. (that was my won faught for not researching better. The second time which was two years later i did alot of research and found the best Chairi doctor in the country, at Johns Hopkins in Baltimore. This one was much better. It has been six years and I can feel all my symptoms coming back. With me it is mostly severe pressure, plus the severe nerve damage my first doctor did.
best advice to you is research your doctor...

[gem10]

The cause of a chiari malformation is from a  too small or mishaped head.  This happens when you are forming as an embryo.   Things need to be changed internally. Things are crowded internally.  So dont waste time with anybody other than a chiari specialist.  

[na1960]

My SIL was just diagnosed with Chiari, yesterday, 10/30/08.
They have referred her to a neurosurgeon immediately because the condition is much worse than they expected. She has gone for follow-up MRIs tonight specifically on the surgeon's instructions.

My question to all of you.....
We are in the Chicago area.....you mentioned a well known surgeon in this area.
Would you please forward the name?

[cdavis1963]

Thanks for your comments. You're right, I need to take care of myself as well. After Brier's surgery it will be time for my check up and I definitely will folllow through.

cdavis1963

[cdavis1963]

Good luck with your surgery on Tuesday, I hope everything goes okay. We will be
having surgery Nov. 12 at Vandy for Brier. I was a little disappointed to hear from Dr.
Tullipan that NO ONE ever gets 100% success with this surgery. He says at best we can hope for 80-90% relief. I am not satisfied with those odds. I talked to St. Louis
Childrens Hospital yesterday and they said the same thing. If God wants my child 100% then he will be and I have to keep praying and believing that . Good luck and I'll check on you later.

cdavis1963

[Lovemygirls2]

I read your post to Shane99 and I wanted to let you know that I too go to Dr. Hampf and will be having surgery on Tuesday. I too am very happy with Dr. Hampf.  I am so sorry your son is going through so much!  I can't imagine a little one having as much pain as we have!  I know your son is your top priority, but like Shane said- you have to take care of yourself too so you can take care of him.  I know- when you have children- they are who you worry about.  When I found out I had Chiari- then I found out there was a 14% chance my children could have it too- I began instantly thinking about them. I just wanted you to know that we are practically neighbors when considering the world of Chiari- I live in McKenzie Tennessee about an hour from Jackson.  I know Dyersburg very well- I used to live between Trenton and Dyersburg when I first got married 11 years ago.  I will certainly be praying for you and your son!  If you need anything or have any other specific prayer needs just let me know!  Good luck with your appointment Monday!

[Shane99]

Don't put off the surgery too long. If you are having spine issues, then you have syringomyelia and that can lead to paralysis pretty quickly. Don't risk paralysis to yourself while concerning yourself with with your child. It's not reversible! And that can't help anyone.

My doctor is Dr. Carl Hampf at Baptist. He is a Chiari Specialist and I'm very happy with him. Unfortunately, he doesn't operate on children or I would recommend him. But you might consider him for your surgery.  

[concernedmom2008CM]

Hello, Im new on here, But have a few questions, My son had decompression surgery in 2008 at 8 yrs old. His recovery was crazy, and not the normal.. many issues a lot of pain and it took at least a year for recovery, It was apparently very unusual and dr said he had never had anyone with problems like him…Anyway he's now 18 started having headaches, I got him in and today received news he has chiara again and now has a syrnix,  We meet with dr the 24th (he's out of the country doing seminar)  Question is everything i see says it shouldn't reoccur? wondering if this is common? did our surgeon make a mistake? and IF and since theres now a syrnix does that mean DEF surgery ail be required???

[selmaS]

Hi and welcome to the Chiari forum.

There are a few things to address.....one Chiari does not go away because someone had surgery....Chiari is a malformation of the skull making the area too small to hold the cerebral tonsils, surgery creates more room to allow CSF to flow.
Since your son has a syrinx, it is possible that his CSF flow was obstructed.

Next what type of surgery did he have...many times Drs do a less invasive type of surgery on children...they do not open the dura and any relief tends to be temporary.

Some with Chiari have had multiple surgeries, many times it is a related condition that can affect the outcome of the surgery.

Was your son checked for related conditions?

Not sure what is meant by DEF surgery?

[cdavis1963]

Hey Shane,

Thanks for responding.He is in the book for being the first NS to do brain surgery on a
21 week term baby still in the womb. He implanted a shunt in the baby's brain and has
done many more since then. I am worried that my son does have a syrinx since he has
deteriated so rapidly, his last MRI was 6 months ago. That's one of my questions for Monday. I have really studied alot about chiari in the last year since I was diagnosed and especially now with Brier. It really affects children differently than adults. Yes, I do have lots of neck and spine problems and I am bothered alot by my chiari.I was told to just wait it out as long as I could and have an MRI every year to look for changes. Some
days are really tough. Right now I have to focus on Brier. Who and where is your doc?

Cdavis1963

[Shane99]

Hello, I'm sorry to hear about how much pain and problems your son is having. Hopefully the surgery can help. Have they prescribed any medication to help control the pain?

Is your son diagnosed with Chiari 1 or 2 (or worse)? Yeah, 12mm is big, especially in a small child. Does he have syringomyelia? Have they mentioned anything about syrinx or a fluid build up in his spine? It sounds like he does judging from the symptoms.

I can't really say much about Dr. Tulipan. I don't now much about him other than him being a Professor of Neurological Surgery at Vanderbilt. I wasn't aware he was considered a Chiari expert, but I don't claim to know all of them. I would guess his credentials are enough to be considered that, seeing as he teaches neurological surgery and specializes in pediatrics. He's in the Guiness Book of World Records? For what?

As for question, what I can think of right off;
*If you aren't sure, find out what type Chiari he has (Chiari I - IV).
*Ask about syringomyelia - does he have any syrinx, if so how many? And if he does, are they going to need to operate for that also?
*Find out if he has other spine issues like spina bifida.
*You mentioned that his procedure was different. Find out what he does and how it differs.

Be sure to take a notebook with you and write down what he tells you, don't rely on your memory because you're most likely going to be overwhelmed while talking to him. Also, go ahead and write down beforehand whatever questions you can think of, that way you don't forget while talking to him. Make him explain to your satisfaction - but keep in mind, you might not be able to understand completely no matter how much he explains, he does have over 8 years of advanced education, plus decades of experiance. Get him to spell any unfamiliar word, that way you can look it up later and/or come here and ask us questions :).

Are you basically aware of what Chiari is and what the operations usually do? You mentioned having Chiari yourself. How long have you known about it and are you having any major issues? 8mm, is a pretty good sized herniation. That's large enough to really start effecting the spine.

Good luck and if you need more info, let me know and I'll see what I can do.

[cdavis1963]

Hi Shane,

My 3 year old son is scheduled for chiari surgery Nov. 12th at Vanderbilt with
Dr. Tullipan.He has been having symptoms since he was 7 months old. I finally got
him to a doc in May that would listen to me and understand that I am not just an
overprotective mother. His symptoms are really bad. His herniation is 12mm. He screams with his head pain atleast 8 times a day which lasts anywhere from 2min to over an hour. These are followed by bouts of vomiting which in turn just sends us into
another round of pain. He complains with his hands burning and he can't even play like
a normal child without it causing pain.He doesn't sleep good at night. He also has the gag reflux and choking which causes more head pain. We have no choice but do the surgery at this time. With all this being said, you are from Tenn. as well as us. We're
from Dyersburg. It sounds like you have learned alot through your own experience. We have an appt on Oct 27 with Tullipan for final questions and concerns. What things should I ask that maybe I haven't thought of and do you know anything  about him? He is
in the guiness book of records for other things and says he is a chiari expert and that his
procedure is different than other surgeons. Send me any info you have and please pray for Brier. Chiari has changed our lives, I can't work anymore and we're having to sell our house not even to mention that there is no normal routine anymore. I just want him fixed
right the first time. I forget to mention. I also have chiari with herniation of 8mm but I don't have time to focus on mine right now.

Cdavis1963

[Lovemygirls2]

I appreciate the prayers!  I agree with Shane about being watchful and aware of your symptoms.  You don't want it to get as bad as Shane's was!  Today was another one of those days for me!  As I was trying to teach 5th graders- I was thinking how I was so thankful my surgery was Tuesday- I just don't know that I could work much longer if surgery wasn't a short time away!  So- my prayer for you is that you will know when the time is right!  I hope we can get together sometime- I told Shane it would be our own support group!  Good luck!  

[sissy114]

Correction, Don't know where i got the 27th.  But know that my prayers are with you.
Shane said he would keep me posted. Again, wish you the best!!

[Shane99]

Sorry we weren't able to meet the other day. When do you think you may be coming back into Nashville?

I think the reason that so many people on these boards seem to have problems can be explained as, this is a board basically for people having issues with Chiari. If someone has the operation and gets all better - they don't come back to the boards. :)

As far as you having the surgery; I know that the whole idea of having your brain operated on is daunting...and very scary, but I think Lovemygirls and Dr Hampf are right, you'll know the time. The problem is, the time may be when you are in so much pain or having so many problem that you can't get around and you'll NEED surgery.

But if I might offer a bit of advice; if you start having a noticable drop in health or rise in pain, schedule the surgery as soon as you can. This can sneak up on you and we all know how slow the medical field can be. If you wait too long, you will be in a lot of pain and at risk for damages to your brain and spine.

I'm having problems from my Chiari after the surgery, but mine was caught late. My herniation was at 20mm the first time I ever hard the word "chiari". I'm still glad I had the surgery, because it could have been a LOT worse!

My wife and I were discussing how, here six months later, we're very blàse about the concept of brain surgery. It's just a thing that happened, not the shock we had when we found out I would have to go through it.

You'll be okay.

[sissy114]

I will be thinking of you all day on the 27th. I'll pray that everything goes well for you. My main concern is that so many people on this forum has had to go back for more surgeries, mostly for leaks. I don't know if they had a specialist, but Dr. Hampf said
that it was a very small percentage that had leaks. Again I am not sure that my symtoms
are bad enough to go through the surgery. I guess I will just pray about it and hopefully
make the right choice. While I was at Dr. Hampf's office I kept wondering if you were still
there, maybe one day you, Shane and I might meet. Who Knows?

                                                                                         Best of Luck!!!!
                                                                                         sissy114