Posted , 60 users are following.
I had decompression 6 years ago for a servere malformation. Recently I have been getting similar symptoms to those I had before my operation . Can a malformation grow again after decompression? I would not like to go through the operation again.
3 likes, 194 replies
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Dugbay yeltzer
Posted
I'm asking the same thing I had surgery in 2007 and I wake up and my ears are plugged and I feel dizzy
b2wc97455 Dugbay
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Kamatsu yeltzer
Posted
I am wondering the same thing as you....can the malformation grow again. I have developed symptoms and a MRI I had last week has confirmed that there is a problem. My GP has referred me back to the neurosurgeon who did the operation 12 years ago. The thoughts of going through that surgery again is very upsetting and then living with these horrible symptoms is upsetting as well. I'm hoping that something less invasive is available that will correct the herniation.
Have you had any answers fro your neuro?
yeltzer Kamatsu
Posted
Yes after a fashion. Had a MRI that confirmed Decompression and cauterisation had worked but he was wondering about CSF pressure levels requiring lumber puncture. I've not had this done yet as other medical problems took preferance.
Kamatsu yeltzer
Posted
Sorry you are dealing with so much. Do you have medical coverage? I am fortunate that all of my medical issues are covered here in Canada. It is not a perfect system and often there is long wait times, but without it I could not afford treatment. I waited 2 1/2 weeks for the MRI, but the other tests were done in a couple of days.
I believe my current Chiari issue is causing heart problems. I've had a bunch of tests and will see a cardiologist in a couple of weeks. Have you had any heart problems?
Hope things improve for you soon.
yeltzer Kamatsu
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Kamatsu yeltzer
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Kamatsu
Posted
We have health care here as well, I'm so thankful for that. I see many that are suffering because they don't have access to health care.
Kamatsu
Posted
Just found out that I have another 12 mm syrinx as well as the hernia. I believe that the syrinx is larger than that but because I did not have a full spine MRI it was not diagnosed. Waiting for the new MRIs including full spine, thorax and ENT. Be nice to know exactly what I'm dealing with.
i also get a spurt of fluid from time to time. No warning which is a bit embarrassing.
malisa21904 yeltzer
Posted
I had my surgery 12 years ago and still suffering from back and neck pain, pulsatile tinnitus, nausea and vision problems. The only way to find it out is to have a CINE MRI and possibly a lumber puncture.
b2wc97455 malisa21904
Posted
carolyn02852 yeltzer
Posted
Hi There. I can understand how your are feeling, my daughter was diagnosed at 13years old after many years of symptoms which were basically discounted by her pediatrition. Her chiari was diagnosed as a finding when having tests for epilepsy which started in her 13th year. I live in Canada too, and once we ended up at sick kids things moved very quickly (love them, she's too old now, very sad day when she aged out at 18). I can tell you that the pain was quite intense, but children are very resiliant, she somehow played high level hockey throughout the whole thing. She found that regular strength advil was the best, and the less sleep she had the night before, the worse the pain. I also found that when the neck pain got really bad, a bit of voltaren on the upper neck seemed to help. Best of luck, Sick Kids will take good care of her, there are very few hospitals, neuro's up here that know what Chiari is, but Sick Kids seems to know the most out of all of them. Make sure they give you neurological referrls when your daughter ages out.
Pneel yeltzer
Posted
Is one of your symptoms your heart beating in your ears? I had my surgery in 2006and it all happened so quick I can't remember all my symptoms but this is one I am having lately and it is driving me crazy.
Kamatsu yeltzer
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b2wc97455 Kamatsu
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Kamatsu b2wc97455
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Hi
Still waiting for all the testing to be done. The person in charge to organize the tests is very incompetent. I've been jumping through hoops trying to get things done and in the meantime hoping that my condition doesn't get worse with permanent damage because of the syrinx.
Thank you for your support. I will advise when I get the tests completed.
yeltzer Kamatsu
Posted
Reading a lot of comments on here I am glad I live in the West Midlands UK. I know I had trouble for years with my GP practice and Neurologist, but I am thankful I was eventually referred to Mr. Flint. What is it with Chiari, why don't Doctors understand. Could you imagine if the problems we face were for any other complaint there would be uproar. Needs to be a lot more attention from the medical sector and the general public, seems so sad that only sites like these can provide help. (Rant over). Good will to all CM sufferers.
b2wc97455 Kamatsu
Posted
Please back togo GP if need be go to A&E so that they can out you - straight to neurologist then directly to Neurosurgeon - If you can't stand with the painn---that what I would do..its getting worse..if leave it too long..it will also damage the muscle around the nexk..spine..etc