Multiple surgeries for Chiari?? Even years later??

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!  :)

[rozia]

If you have the right surgeon it shouldnt happen . are you in Tenn? There are no chiari experts there . you may want to see a Dr. In Arkansas and there is one in chicago . all over the us. if you want further let me know

[Lovemygirls2]

Thanks- that's reassuring!  I am going to Dr. Hampf in Nashville.  I am not sure if he is officially classified as an expert, but I do know he is one of only two in Tennessee that is very knowledgable about Chiari!  I have actually been told that he is an expert.  I felt very confident with him and he was an amazing doctor!  I feel like I am in good hands!  Thanks!

[rozia]

I will remember his name that is good to know . Take care

[rozia]

there is also a Dr. Boop in Memphis

[sissy114]

Hey, just wanted to wish you well with your surgery. I have been hoping for answers to the same questions that you have. I too have heard that Dr. Hampf is very qualified in
chiari malformations. I have an appt. with him Oct.20th. Do you live in Tn.?  I am in day
Dayton,Tn  which is about 3hrs from Nashville. Please  let me know how things go, as
soon as you are able.

                                                    Good Luck!!!!!!!!!!
                                                                                                                                        

[Lovemygirls2]

I do live in Tennessee- I am 2 hours from Nashville.  I will keep you posted after surgery- I will try to keep all of you posted!  What time is your appointment with Dr. Hampf on October 20?  Because it is funny that we will be in his office the same day.  I go to get all of my pre-op stuff that day.  Which of course that will be at the hospital, but I have to go into Dr. Hampf's office for him to fill out my disability insurance stuff.  Isn't it funny- you three hours away and me two hours away are going to be there the same day!  Funny!  :)  Good luck and keep me posted about what they say about you.  Dr. Hampf was wonderful!  I was fully prepared to have to go in and defend myself like I had with the other doctor- but I never had to defent myself!  So- what is your herniation?  It is so nice meeting other people fairly close to me with this.  I teach 5th graders and they were asking me today how long after surgery before I would feel like calling and talking to them.  I tried to explain to them that I don't personally know anyone that has had this surgery- so I don't really have anything to go on.  That is hard for them to understand.  But this forum....helps so much!

[sissy114]

My appt. is at 12:45 . What time will you be there? My herniation is 8-9 . I really am not  
sure what to do. One NS in ms. said he wouldn't do it if he were me, another in knoxville
seem to think would be sucessful. Hope Dr. Hampf will help me decide what to do. What
are you symptoms? how long is your herniation? It makes me feel better to know that
you and Shane feel so confident with Dr. Hampf.  One more question    Do you have
syringomyelia or syrinx and or they one in the same? should know this but i don't have it.

[Shane99]

Syringomyelia is the condition. Syrinx are what the actual blockages are called. So, basically they're the same.

Yes, I'm happy and comfortable with Dr Hampf. He's a great surgeon. The only complaint I would have with him is he's very quite. You'll need to know what all to ask him, he tends to not really volunter information. I mean, he's forthcoming with answers easy enough, I just don't think he thinks to fill his patients in on everything. He just tells you the basics and waits for you to ask questions.

I recommend to everyone going through this . . . or really any medical procedure; Get a notebook and keep it with you. Take notes of your symptoms and problems. Write down all your questions as you think of them. Take the notebook with you. That way you'll have everything on hand and won't have to rely on memory while you are talking to him. Also, right down whatever he tells you for further study at home.

His nurses and office workers are very good about getting back with answers and they are a friendly group. So, if you do think of things you want to know, just call them and they'll help however they can.

If you decide to get the surgery let me know. Maybe I can visit you in the hospital and we can admire each others scar :). LoveMyGirls informs me that we are called zipperheads :D.

[Lovemygirls2]

My appointment for pre-op stuff is at 11:00 and I was going to take my insurance stuff to his office before I go and pre register at the hospital.  I really hope that Dr. Hampf can help to clarify some things for you!  It would certainly be difficult to have one doctor say don't do it and the other say do it!  Maybe everything will become clear.  Shane99 had some great advice about a notebook.  I started doing that also and it has really helped!  Dr. Hampf actually commented on how he was impressed about how organized and prepared I was!  :)  Guess I got a gold star!  My herniation is 5 mm.  My symptoms range.  I have the crazy bad headache most of the time.  I have balance issues, short term memory loss,  pain in my neck that goes up behind my ears and eyes.  I have the pain across my shoulders and into my right arm.  I have symptoms that mimic both fibromyalsia (fibromyalgia) and chronic fatigue.  That's a list of several of the symptoms- there are more, but those are the main ones!  I don't really know if I have syringomyelia or not.  Dr. Hampf never used that word but he did say that I had a pocket of spinal fluid near my herniation that was blocking my spinal fluid flow.  As I have researched and talked to someone on this forum with a Big BRAIN- I THINK that pocket of spinal fluid he was talking about would be a syrinx!  Not 100% sure- but I think so!
And yes- I have read that once you get the surgery you are called zipperheads! I am not one yet- but will be in 3 weeks!  :)

[MamaD3755]

I have had surgery twice for Chiari. The first one was in 1999. It definitely halted the snowballing effect of the symptoms. I was still left with vertigo, nausea, and shoulder pain. The tonsils were still blocking the flow of fluid, so I had surgery 2-1/2 years later to shrink the tonsils. It was much more difficult the 2nd time, but it did fix the problem. It took a while to feel good, but eventually I felt almost normal. I was actually jogging and swimming again. I was hoping to do a triathlon next year, but as of last weekend, I have the pain back again that I experienced when this whole thing started back in 1998. I'm not sure if I will be heading back to the Dr. I haven't been able to drive for a week since I can't turn my neck. I'll see how long this lasts before I decide to start all the tests again.

[Pig378]

Hi, My name is trenna nixon i had a chiari malformation in april of 2007 I had collasped and was rushed to st. david's and they did an mri and It took the doctor to operate about a month. Please let them do your surgergy, you don't wanna suffer I did a lot, but Thank the Lord, above I am still here I have pain but I also have 5 siblings to take care of. So god is good all the time he will never let you down no matter, what happens. Then I experience something with my 4 year-old daughter her balance was not stable and this is her first year in Pre-Kindergarten, and I took her to her pedriatric and I had them to do an MRI, on her and 2 weeks, she went back to her neurologist because she had seizures, and he referred her to a specialist that fixes the Chiari Malformation, I am at the hospital right now as we speak typing responding to your comment about the chiari malformation, she had surgery on Wednesday, she is bless came out of surgergy with flying colors. She can go home she just have to have a bowel movements because of the pain medicines it's hard she stopped up but we are working on that really hard. So see God, will take care of you no matter, what the doctor says or a specialist or anybody says, he will never forsake you in your worst time or need, So you just have to keep on believing and trusting and don't never doubt him. Remember, he may not come when you want him. but he's right on time. Just pray all day and all night and I promise you every thing will be all right,By the way I am 35 years old

[Pig378]

Hi, My name Is Trenna Nixon I had surgery a year ago for a Arnold Chiair Malformation and i still have pain, but I am trully blessed.God, took care of me and I have a living testimony, he will do the same for you.I thought that I was going to die my syptoms (symptoms), were unbareable, but I close my hospital door, and I prayed and I prayed and when I went for surgery, on May.16,2007 it was me and the good lord, i stayed in ICU, for about a week, came out started my Therapy, and I've been doing good every since. Trying to find me another pain specialist doctor, becase I am a single parent and my kid's come before anything in my life including me and I didn't keep my appointments, so they dropped me but god, found me another doctor. so I am okay with that. My daughter just had surgergy, on Wednesday, and she is doing so great Listen, when I tell you God, is good all the time he really is we are very blessed. So have the surgergy and Pray day in and day out and watch what god, will do for you.I promise. God Bless you and keep you I will always have in my prayers always don't worry yoursef it will be alright I promise tell your family and your husband to pray constentlly.

[Pig378]

bless your heart you will be fine. I promise you I was about the same. My shoulders, had swollen up so bad, and I couldn't even swallow anything no more, whatever, I digest it came right back up and I started tripping, I had a stroke, on my left side, I was so dysfunctional I didn't know what to do. I had to have the surgergy or I would of died and I would have been paralysis, from neck down, because I had a path in my spinal cord, that was stopping the fluid that protects the brain from doing it's job, So trust me been there done that. Trust and have faith and everything will be alright, I promise. Have the faith and believe and God, will do the rest.

[sissy114]

Well, I met with Dr. Hampf yesterday and was very pleased with him.  He said the
decision is mine but thinks the symptoms will probably get worse.  I am still so afraid
to do the surgery. I hear so many people on here say they have had to go back for more
surgeries and that really scares me, since my problems seem so small compared to
others. Do you or anyone reading this know of any ways to help the pain without the
surgery?  Again i only have aching arms,neck pain and shoulder pain. I can't sleep at
night because of my arms hurting so. Dr. Hampf thinks that it will probably get worse
and since it effects the quality of my life, i should consider it. Wish i knew what to do.
Anyway, I hope things go well for you and please keep us posted.       sissy114

[sissy114]

As i'm sure you read the post i sent to lovemygirls2, i saw Dr. Hamp and really liked
him. I am still so afraid but have to decide if i will have the surgery or not. I keep hoping for some kind of sign but probably hoping in vain.  I keep forgetting to ask if anyone knows if insurance co. consider this pre-existing?



Thanks!
sissy114

[5757]

Have you seen a DO or cranial osteopath?  We are checking into this type of treatment for our son before we will even consider surgery.

5757

[Lovemygirls2]

I am glad you liked Dr. Hampf!  I was thinking about you Monday- knowing you were there the same day I was.  The only experience I have, obviously, is my own- but I will share my experience with you, and I hope it may help.  Doctor Hampf told me the same thing- the symptoms would get worse.  He told me that I would know when the surgery was needed.  He said when the pain gets to a certain point- the patient knows when it is time!  Mine was to that point when I first met him and my symptoms have continued to worsen.  Unfortunately, I feel he is right about the symptoms continuing to progress and get worse.  My symptoms started last fall- if I could rate my symptoms with a 1 being minimal and 10 being severe.....last fall they were probably a 3.  Within 8 months- May of this year symptoms had probably progressed to a 5 or 6.  By the time I went to Dr. Hampf two months ago- symptoms were probably a 7 or 8.  Now- my symptoms are pretty much an 8 always.  I am so thankful I have surgery scheduled for Tuesday of this coming week.  I tell my husband, OFTEN, that if I wasn't having the surgery soon- I wouldn't be able to make it!  I have been very prayerful about the whole decision of surgery and I feel very confident that I am doing the right thing!  I hope this in some way has helped!  I think honestly- when the time is right for you to have the surgery- you will know!  Good luck with your decisions- I hope you get your "sign" you are hoping for!

**Note to everyone on the forum- my surgery is Tuesday- October 28!  I would appreciate any prayers and happy thoughts!  Shane99 will update you guys on how I am doing after the surgery!  Thanks for all the support everyone has given!**

[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 (symptoms)
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  

[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]

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!!

[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!  

[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

[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]

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]

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.  

[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!

[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

[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

[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?

[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.  

[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...

[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"

[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.

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"