For those that have had decompression surgery

[beebaa]

I'm trying to mke the decision as to whether or not to have surgery. I have a 17mm CM, no syrinx and no headaches.
My biggest problem is brain fog and fatigue. My NS however, doesn't think the surgery would help with this. I'm therefore left wondering if it's worth having the surgery.
So I just wondered if those who have had the surgery could comment on whether your cognitive functions improved after surgery?

[Viva001]

I just want to say as a new member, in catching up, that you provide very good advice Selma.

[selmaS]

  Hi Devin has not actively posted since Jan of this yr....but, I did want to reply to ur post as I understand ur fears....I am going to be 3 yrs post op this May and I am doing well....so much better then I was b4 surgery.

Ur NS can make a difference in how u do post op as well as ruling out all related issues b4 u have surgery.

Chiari is life altering, and if u do not have other medical issues going on, surgery should help u do many things u can not do now...BUT- u do have to allow ur self to heal.

  When is ur surgery scheduled for, we do have a thread u can post the date , or u can post it here...I like to add a Prayer thread for our members.

And if u have questions...post them here or start a new thread.

[CJLead]

how are you doing now two years later since your last post because I am going to have the surgery and i am scared to death. I am a person who has been independant all my life, raised four kids alone and became very educated and one doctors mistake has changed my whole life.

[*Stormy*]

Hmmm..I find that really strange..he is basically telling you the opposite of what my NS did. When I asked him what would happen if I didn't have the surgery, he said it would most likely keep progressing. That is what most of us are told...so I don't quite understand why he would say that...I was told that the surgery would stop the progression...which it did and I improved!!

I can only comment on my story and that is...I had headaches and neck pain for several years (didn't realize it was anything) then within 6months I got rapidly worse until I could barely walk. My theory is I upped my running to train for a marathon and the constant jarring triggered the symptoms.

Other people have lived with Chiari for years and had no problems...it is just so unpredictable.. One thing I would say though is that I had no idea I had it and if I did I would have changed what I did...so that is one advantage you have. I would find a NS that will do regular MRI's though...at least once a year..

Good luck
Carolyn

[Devin215]

Hello,
I had the same debate with myself about the surgery although my Chairi was only 4mm. Yours is 17 and depending on your symptoms I personally am for the surgery. I have had a very rough time and will admit that this surgery is not fun nor easy to deal with I had complications after but am satisfied that I did something to prevent the progression of symptoms before they got worse. All the research that I did said that surgery will help prevent progression and in some cases help reduce symptoms. You will need regular MRI's after to make sure it doesnt come back and nothing else happens. The problem with Chiari is that is is unpredictable. You don't know if you will maintain where you are at or if it will progress slow or fast. Along with that if it stays there for a long time (I am not saying it will) it could possibly cause nerve damage or a syrinx if there is restricted CSF flow. I researched things almost every night for 7 months before I finally decided to do the surgery and though I dont feel perfect and probably never will I am glad I did it as a preventative measure to help from having to deal with horrible symptoms in the future. This decison is all up to you and you will know when you are ready. I made my decision when I couldnt take the pain anymore and it started infringing on my  everyday life. Take it this way. There are risks either way on whatever decision you make. If you think you can go on a little longer then by all means see how it goes. The surgery is very dangerous and invasive. Let me know if you have any questions. Just know too that you are not alone in this and all the people in this forum will be there for you. They helped me a ton with questions and answers.

[beebaa]

Thank you for your replies. I am seeing a NS who is a Chiari expert.
He told me that the CM usually doesn't progress, but everything i'm researching is telling me otherwise.
He told me that he wouldn't operate as a means of stopping the progression, only to deal with the symptoms i'm currently having. I'm frightened that by the time I have more symptoms it will be too late to reverse them.
I have periods of dizziness, tinnitus and I do have a lot of pain in my neck and back, but these things aren't as disabling as I find the concentration and fatigue are if you know what I mean.
I also have a lot of anxiety, and i've been told by my GP and a NL that my symptoms are most related to my anxiety than my CM. I don't know what's true.
I don't want to have surgery if I don't have to, but I don't want to leave it and have things progress either.
I was also a bit concerned that he didn't think I would need to have regular MRI's if I don't decide to have the surgery. That seems strange to me. How else will I know if i've developed a syrinx or the CM has gotten worse.

[selmaS]

Hi and welcome to the Chiari forum.

B4 u consider surgery...make sure  the dr u saw is a true chiari specialist.

I also wonder if u were checked for a CSF blockage and overcrowding....I would venture a guess that since u do not have life altering symptoms that this may be something to put off for a while.Try to get a second opinion, I know that my NS would not have done the surgery if my symptoms were brain fog and fatigue......I know that it is not something that is easy to deal with, but u may end up with a lot more symptoms after surgery....so if u can press on with those u have...and u do not run the risk of nerve damage if  u do not have the blockage or overcrowding...then do so.BUT do keep an eye on it and call ur dr ASAP if new symptoms occur.

I pray u find the answers u need.

So glad to have u join our little family here, so sorry for the reason u had to seek us out.

"selma"

[*Stormy*]

Hello and Welcome!!

I am 4 months post op...I would say that the brain fog has got better for me too. I can hold a conversation w/o forgetting mid sentence, I handle group social situations better and I can go to Walmart w/o having to run out of there holding my head!! There is still some days with the fog..but much better...

As for the fatigue..it is still here..but I have found that I have Hashimotos which has not been controlled yet so that could definitely be the cause of that.

For me, I had other symptoms that were more severe for me and my worst one (my spastic, ustable gait) DID get much better!!

It is a hard decision with surgery...if you can live with you symptoms and they are not greatly affecting you life, you may be able to wait...but only you can know the answer to that. It is also a balancing act b/c in a lot of cases it does progress, you could develop a syrinx...so you want to have the surgery b4 you have permanent damage..which makes it way harder to recover. I didn't have the choice, by the time they figured it out with me, the damage was done. I would ask the NS those questions, what is the chance of progression? What do I do if I start noticing additional symptoms? What is the chance of having permanent damage if I wait? You have to remember that surgery is NOT a cure but a way to stop the progression!! That is why your NS won't guarantee any improvement b/c it varies from person to person and they really have no way of knowing. Very tough decision, I wish you luck and I pray that you don't see any progression of symptoms.

Carolyn

[ChiariWolf]

I'm only a few months post op right now, so long term we'll see. But having qualified that 'yes' most days the mental fog is much better.
Not by any means back to what used to be normal for me but still better.

Wolf