where to research decompression surgery

[althena12]

My son was just dx with CM and the NS recommends decompression surgery this summer after he graduates from high school.  The surgeon is a Chari specialist.  I would like to research the surgery and the pros and cons of the different types of patches that are used.  I would also like to get some feedback from people who have gone through the surgery and how they are doing.  Thank you for your help.

[selmaS]

Hi.....I can only echo what everyone else has already said...if u ask 5 of us that had surgery we will each give u 5 diff experiences.....everyone will react diff to the surgery and the meds......we do have a list of Zipperheads that way u know which members have had surgery....I had mine in May of '09 and have my experience posted in my journal....u r welcome to read it...just click on my name ...that takes u to my profile page.

And if u have ne direct questions...like neone here use this dr or have this patch....just ask.

Glad to be able to help
"selma"

[dpulum]

I had decompression surgery in November of 2009 and my sister and nephew have also had it done.  I really experienced a huge amount of relief after the surgery, I still have some pain and pressure in my head, but the rest of my symptoms are gone.  My nephew (who was 6 when they did his surgery) and sister have also had signficant improvement, for them it made CM something they could live with instead of having unbearable symptoms.  My nephew still has some issues with motion sickness and my sister has some headaches, but otherwise, they are also doing well.  I really think you just have to make sure you have a doctor who knows what they are doing and that you have to be patient with the recovery process and do what the docs say after the surgery.

I hope you are able to find relief for your son.

Tina

[ChiariWolf]

Ditto what Ray said. In addition he should know that the recovery time is not a short one. Mentally I felt better almost imediately, physically it's been a little over four mos and counting. Chiari had robbed me of much physical strength that is returning but very slowly. Mentally I still have good days and bad days. Some days are even short but great days. Most days there are still chiari symptoms that I'm slowly learning to cope with or should I say how to deal with. Perhaps the hardest thing of all to deal with though is when a family member or members don't understand as Chiari can be extremely limiting at times. One day you may be able to do something and at a moments notice your done, you can't continue even if you wanted to do so. It can be difficult for some who do not have Chiari or some other such physical/mental problem to be empathetic to these limitations.

This is one of those surgeries that no one can really tell you if it's nessasary. You're own body will tell the truth as it is really determined by the amount of blockage. Again as Ray stated 'this is not a cure' there isn't a cure.

Wolf

[rod44]

Hi, it is important to be aware that decompression surgery is not a cure, the purpose of surgery is to relief symptoms, It allows the flow of CSF to be restored

Ray

[shanmomof3]

Hi and welcome to the forum! I have not had surgery yet so i can only tell you what i have learned through my own research and from others here. I'm sure others will post too. First, if you dont mind can you tell us who the surgeon is? 2nd, was your son checked for other conditions related to chiari such as a syrinx, tethered cord, or EDS (ehlers-danlos syndrome)? From what i know there are 4 different types of patches .... cadavor, bovine (from a cow heart), titanium mesh, and your own skin (usually from the thigh and most times on people with EDS because of healing) As for recovery, a lot depends on the patient and if they have any other conditions. We are all different and therefore heal differently. I'm sure others will have more info for you. Glad to have part of our group! -- Shannon