Just diagnosed yesterday , i need to hear some positive outcomes of the surgery??

[chiarichat]

I was diagnosed yesterday with CM. It came as a major shock as i have lived 31 yrs of my life as a normal healthy person. Other than suffering headaches which i thought were due to my neck and back problems that id has for years! Then i started getting a really sharp pain in my ear which then travelled up into my head.  My GP ordered an MRI and the rest is history. She said i would most likely require surgery as the prolapse is upt o 13mm. Ive read quite a few stroies on various sites and havent heard too many positive things. Are there any out there???

[BekahDarling]

I just had Suboccipital Decompression on September 1st. I will say that by day 2 in the hospital, I opened up my eyes and saw CLEAR for the first time in a long time. As of late, I had been feeling "foggy" - almost "drunk/hungover" feeling. I am 25-years old and a personal trainer, so I have maintained a healthy lifestyle which I believe has helped me thus far in my recovery. I am steadily up and walking about now (8 days after surgery). I remained in the hospital for 4 days, and then did 2 solid days of bed rest at home.

My nuero said he drained ALOT of fluid that was being blocked from my head/neck area. I cannot WAIT to get back to my normal self and heal 100%.

You have to have the determination that you will get better, the faith to move you forward, and SUPPORT from family and friends.

I needed the surgery and so happy to have found a great nuerosurgeon.

Good luck to you.

[selmaS]

Hi and welcome to the Chiari forum.

Making sure u have a true chiari specialist is key for the best outcome.....but it is major surgery and there is no way to guarantee the outcome or how u will respond to meds .

Do be sure u r checked for other related conditions as this can cause u to have issues after surgery....like Ehlers Danlos or tethered cord...syringomyelia.

Becky mentions how the PFD is a means to slow progression, it is not a cure, u may continue to have some or all the symptoms u currently have...but if u do not have a syrinx, surgery can help stop the formation of one which could cause perm nerve damage.

Make sure u r comfortable with the dr that will perform surgery....so many have to have re-do's as a result of the NS not being  experienced enuff to do this and be able to anticipate ne surprises once the surgery begins.

I had surgery 16 months ago....I still have pain....and other issues as I still have other surgeries ahead of me for related conditions.

But, the surgery was successful as it has prevented the formation of a syrinx and to date, I do not have perm nerve damage.

If ur symptoms r manageable...and u do not have a CSF blockage ur dr may be able to just monitor u. ....but again u must seek advice from a dr that deals with chiari daily and one u feel comfortable with.

Becky is right, if u r of faith....pray for guidance.

"selma"

[bbisweary]

hi,

I just had my decompression surgery August 20th at the Cleveland Clinic with Dr. Di.  He does an endoscopic surgery which helps tremendously with the recovery time.  Here is what I can tell you thus far.
For over 7 years I couldn't stand up after sitting or lying without stifffness.  I was like a very old woman (I'm not 50 yet). Within 8 hours after my surgery when they first got me out of bed, to our amazement I stood right up.  To us it was a miracle.

Secondly, although I am still having some headaches, the horrible pressure headaches that nearly drove me insane are gone.

Third, my balance is at least 85% better.

I can't and won't tell you what to do about surgery, but will say my herniation was also 13 mm.  Dr.Di explained that the surgery is not a cure but to stop the progression before I could possibly suffer paralysis, he said they can't tuck our brains back up in our skull, but that after relieving the pressure and freeing the CSf to flow the way it is meant to flow, that the perk alot of us get from the surgery is relief from some or even sometimes all of our symptoms.

On the other hand, some people, a few, doesn't get any relief and maybe get some new problems.  I hope this helps.  If you are a person of faith, definitely pray about guidance for yourself.

Best wishes for the right decision for you,

Becky

[thieb9]

Hi. Sorry to hear that you are going through this. I have not had surgery yet..I will be having the surgery most likely with in the next 2 months. I have found mostly not so good stories.. In my opinion though most people tend to talk about the negative more than the positive.. Every person is different in their recovery.. I follow alot of blogs and the people that have had a good outcome tend to slowly stop posting things, and I think its because they are out enjoying life, doing things they could not before.
My advice would be to find a NS that you are comfortable with and knows about Chiari.. I went through a whole mess of them before I actually became comfortble with the thought of surgery. Best of luck to you