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!  :)

[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 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, 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.