I had surgery in Jan.2007 but still have problems?

[sev72]

I was just wondering if anyone has had the surgery but then had return symptoms? I am 35 years old and it worries me. Thanks in advance to any responses!

[(Not so) Spunky]

Are your problems getting worse, or are they the same as before the surgery? The surgery isn't supposed to "fix" what's wrong, just stop it from getting worse. And I have read of many of people having multiple surgeries. I would contact you NS and ask for another MRI to make sure things are ok. I just had my surgery last month, so I obviously am not "better" yet, so I can't help from personal experience. My NS did tell me that it could be up to 2 years for your "wiring" to sort itself out, and you can develop new symptoms that come and go, and your old symptoms to come and go, but until that 2 year mark, there is no "normal" and at that time they re- assess to see what good the surgery really did, and if you'll need another.  

[sev72]

I am new to this support group so bare with me. I do not even know if I am posting back in the right area.

I suffered for 8-10 year with this condition and had no clue what was wrong. I finally had my chiropractor friend tell me to go get "THE" MRI. I could not turn my head for over a week and I told my husband something was really wrong. I thought at first it was a pinched nerve, but I had unreal headaches (worse that usual). So,, I go to get the MRI and I get a call back almost immediatley to go have a Cranial MRI. Boom-there it was...Arnold Chiari with an Arachnoid cyst. On Mother's Day even...what the luck!
So..the journey began...look for an NS. I had to go through county hospitals so I had to wait 2 years for the surgery. It was painfull, well the first few days..no it was H***!  and I was getting marrried 8 weeks later. It was supposed to have the surgery a year before and was waiting, then out of the blue they had the date of Jan 26, 2007 and if I did not take that it would have been even more time, so I took it! I was very lucky because my NS knew I was going to wed soon so he went easy on the hair-cut:)

I had a lot of break through headaches and alot of the blurred vision come back and go since. I had an MRI done 6-7 months ago and it showed the arachnoid cyst had gotten bigger, but I could not get an appointment do to it being a county hospital (No insurance-even though I paid cash for the procedure) I finally got a letter saying that I can call to set up an appointment so I will be doing that today...
I am finishing my nursing degree and it is so hard to take care of my kids, go to school full time and work and try to act like things are "Okay..today" as everyone will ask how I am doing today.

I am sick of it being an "Are you okay Today?". I would to just feel great!
I was told a up to a year , but this is the first time I have heard two years. Thanks!

[razzle5150]

This is probably due to a surgeon that doesnt know about Chiari . There are Chiari specialist all over the US .

[ChiariSyrinx]

Hello, my 8yr old daughter has gone thru the decompression surgery in Oct 2007 and she still has the headaches and back pain. She still also has the very large syrinx from it also. Her syrinx (pocket of fluid goes from C5 to T12 and is going to be drained in August. Do you have the syrinx from it also?  If you want to see my daughters Xray, we have a page on http://www.realitycharity.com/view_item.php?listing_id=2939 and if you click on attatchments, it has her Xray and you can see it clear as day. We are still doctoring so we are learning as we go. Hope I help you some. Take Care and Best Wishes

[razzle5150]

who is your Daughters Dr. ?

[razzle5150]

I looked at your xRAYS AND saw you are in Arkansas. Please tell me that Dr. Adada dint do the surgery. Who did you go to? DR. Anthony Capocelli is the Chiari expert in Arkansas . He is in Fort smith . Here is my email if you want to talk further . ***@**** . maybe I have talked with you before.

[Shane99]

I recently had Chiari and syrnix surgery. It's only been about 2 and a half months, but I still have severe dizziness. It seems like the doctors are wanting to list me as "well" and send me back to work. But I'm a school bus driver and don't want to go back and risk wrecking a bus load of kids.

[sev72]

I know how that feels. With all my symptoms coming back (for about 3 months now) they are just now deciding that they need to see me again. It is horrible. I was so excited when I had woke up from surgery. I thought, finally, I am going to feel normal. Boy was I wrong. I never felt normal, better yes, but I pray that I will live my life out of pain again.

If you ever need to talk, just let me know! Take care...and prayers coming your way!
God Bless!

[lente018]

Hello All and thank you for such a site.  I have some of the same problems and hope that hearing my story might help you to understand or feel validated about your own.  I know that hearing your stories has, already, helped me.  Thank you for that!!

I also had surgery and still have problems!  I was diagnosed in Oct. of '06 and had surgery in Nov. of '06.  I feel better, but not much better.  The problem is that my new MRI shows that there is no signs of Chiari, whatever that means.  My symptoms are still here and I know that I "still"  have and always will have ACM.  I'm a good patient who does not complain so I know that I am part of the problem and I must get assertive with these doctors, for as of now, no one is helping me and I am desperate for some sort of help and validation!! The surgeon sent me back to the neuro. who is now sending me to a headache specialist.  They don't even seem to "hear" my other symptoms and seem to think that I am depressed (Well, yeah........sometimes, but depression is not causing my symptoms...........doctors!!...my symptoms are causing my occasional depression). Finding this site was my blessing for today.  I did not know that there were so many other people out there with problems.  My doctors make me feel like they are so perplexed because I am the only one.

Have any of you had a "clean" MRI, but still have symptoms?  I have multiple symptoms and know that I cannot work any longer.  I am a teacher and I have two small children, I just can't go on acting like nothing is wrong.  I am not doing my students or my family any justice.

I hope that I have made some of you feel validated.  There are people out there who are symptomatic after surgery.  What can we do?  Does anyone know?  How many of us have had surgeries that were considered to be successful?  I know mine was.  Don't get me wrong, I am a little better, but I don't know if I would do a second one.  I really just want a doctor to recognize that I have ACM and treat me for it.  

Thank you for being here!!  You really have been my blessing for today.  I am, usually, in good spirits, but I keep everything to myself and have noone to talk to so when I get down, I get down.   I do belong to a group in my home state and that has helped a great deal.  This, I am sure, will continue to be a source of help.  I only hope that I can, one day soon, return the blessing.

[dieselann]

I have lived withACM for 25 years. the first 11 the doctors didn't take me seriously. Finally one did and I had decopression surgery. I was like you, I am not a complainer but I should have been more persistant. They had told me That I should just learn to live with my headaches. Obviously they didn't suffer from them. So be persistant. I am now and I have a great doctor here in Canada. At present I still have some minor symptoms but nothing serious. I am contacting some specialist in the States to see if they can give more info to me and my doctor. He wants to learn more about this too.