For now they have found no syrnix and I am wondering what is an “operable” degree of herniation. I am very symptomatic and things are going downhill now. So far I know I have a 12mm herniation and papeledema (spelling?) And uneven lateral ventricles.
Just trying to see what to expect from this initial consult. Worried and needing to be “fixed”, but don’t want to argue with a doctor. My son was decompressed about 4 1/2 years ago, so this is not my first rodeo, just the first time I have to advocate for myself (which is a weird feeling).
You guys are an amazing support system. Its hard to talk about thos with others who just don’t know what it is like to have this internal pain and suffering daily.sorry for all my questions!
Honestly… I want the surgery more than just about anything. But, I have young children (5, 3 & 1) so I am very worried about me missing things during my recovery.
Unless your herniation is very large it really isn't the deciding factor for a NS to recommend surgery. The main component is CSF Blockage and then symptoms and herniation size. Additional medical complications are also considered.
Please try and not worry. I am sure your NS will recommend whatever treatment they feel is best. You know the questions to ask from your sons experience. If you disagree with the NS medical opinion get additional opinions, until you get a general consensus from NS you respect. Don't argue. You won't be able to talk a surgeon into doing surgery if they don't agree. It's not worth getting yourself upset. That will just make you feel worse.
Just stay calm and talk to your NS and if they don't recommend surgery ask them why and who they would recommend for a second opinion. I always recommend to everyone they don't go alone to the NS first or diagnosing appointment. Do you have someone to go with you?
I hope & pray you get the right decision for you from your NS & you find peace& health in the process.
Mine is only 9mm but my symptoms are progressing and am already missing things with my children on bad days…I decided to do surgery because I don’t want to risk permanent damage and could use a better quality of life.
I have a 24mm herniation and lots of symptoms. Im six months post op now. It was a good choice for me. The compression on my brainstem and such was pretty significant, so I am still dealing with many symptoms to some degree or another. I do believe things would have gotten much worse if I hadn’t chosen the operation. I have seven children ranging from 13 yrs down to 1year old. It was tough after surgery but I had a really helpful church that provided me with volunteers to be here especially in the first weeks, to supervise my kids while I was going through the most difficult part of recovery. Get support. There’s an awesome website www.lotsahelpinghands.com that I used to help coordinate meals, rides, childcare before I went into surgery. That way I didn’t have to try and figure things out while I was recovering. Your kids need you. A few weeks or even months of you being down recovering from surgery doesn’t have to be the only thing they remember about their childhood. There will be many more days when you can be more on top of your game following surgery. Not pushing you towards surgery because it has its own risks and potential disappointments but permanent nerve damage has its consequence too. You have lots of support here and many very wise and educated minds to pick at so don’t be afraid! Lots of love, Randi
Papilledema (or papilloedema) is optic disc swelling that is caused by increased intracranial pressure. The swelling is usually bilateral and can occur over a period of hours to weeks. Unilateral presentation is extremely rare. Papilledema is mostly seen as a symptom resulting from another pathophysiological process. i.e. Chiari Malformation is one.
I am so sorry to hear you are having problems. Have you been checked for CCI Craniocervical Instability which can mimic Chiari and POTS symptoms. It is a condition seen in EDS. EDS is seen in combo with Chiari. If you surgeon is not well versed in Chiari/EDS/CCI and the other related issues which many are not they will miss it. This is one of the top reasons for failed decompression surgeries. When was your last MRI? There are things such as CAA clivo axial angle, GO Grabb Oakes, RO retroflexed odontoid, medullary kyphosis, BI basilar invagination that need to be looked for and an upright MRI with flexion and extension can change a lot. If these things are severe enough it csn usually be seen or seen as a possibility on a supine. Then a rotational CT can be done to look for horizontal instability. I have videos from the ecperts that explain these issues. Please feel free to ask questions.
My herniation is only 5mm and I am having surgery tomorrow. I have significant CSF blockage and over the past 12 years my symptoms have just gotten worse. Believe me, I am scared, and not looking forward to the long recovery, but it has significantly affected the quality of my life. I am a shell of the person that I used to be.
I have tried been to a ton of doctors, tried numerous meds, accupuncture, PT, etc. and ruled out everything else that could possibly be causing my symptoms. I have constant headaches, dizziness, vertigo, neck pain, brain fog, etc.
From everything I have read and every NS that I have seen, it is based on symptoms and CSF flow. Good luck with your decision.
BigD821 would you keep me posted? Im a 5 mm with so many symptoms. I just got diagbosed this year but Id like to know how your surgery and recovery go for you.
All the best, speedy recovery, God bless you and many prayers!
I was diagnosed in July of this year with 9-10mm herniation. My symptoms have progressed quickly over the last 4 months.
My MRI-CINE showed a significant CSF blockage and am having decompression surgery October 15th. The headaches have almost been debilitating.. Praying the decompression surgery is worth it. Will keep everyone posted as I go through this journey.
Great resource Thank you. I will add it to our Resource Page.
mommarudy said:
I have a 24mm herniation and lots of symptoms. Im six months post op now. It was a good choice for me. The compression on my brainstem and such was pretty significant, so I am still dealing with many symptoms to some degree or another. I do believe things would have gotten much worse if I hadn't chosen the operation. I have seven children ranging from 13 yrs down to 1year old. It was tough after surgery but I had a really helpful church that provided me with volunteers to be here especially in the first weeks, to supervise my kids while I was going through the most difficult part of recovery. Get support. There's an awesome website www.lotsahelping hands.com that I used to help coordinate meals, rides, childcare before I went into surgery. That way I didn't have to try and figure things out while I was recovering. Your kids need you. A few weeks or even months of you being down recovering from surgery doesn't have to be the only thing they remember about their childhood. There will be many more days when you can be more on top of your game following surgery. Not pushing you towards surgery because it has its own risks and potential disappointments but permanent nerve damage has its consequence too. You have lots of support here and many very wise and educated minds to pick at so don't be afraid! Lots of love, Randi
I had surgery last year and I have very small children. You mentioned that is one of your concerns.
My children (today) are 5 and almost 3. My surgery was last October (10/31/2012).
It was difficult; it still is. I am lucky that my husband is very supportive and good with the kids. I used to be their primary caretaker, then he was, and now (since this summer), I have been easing back in so that we are now sharing taking care of the kids...unless I don't feel well, of course.
I try to look at it that way - my kids have had a chance to really bond with their dad while I recover and he has developed his own parenting style without me there to take over when the kids became difficult.
My experience was the same as Emmalines friend’s,just a small herniation but a miserable life for many yrs.The symptoms of patients is a far better rule and the proper tests,the NS that knows about chiari will do mris that will let them get a good opinion of what’s going on,tilt table is a good test and helped my NS in dx but the key is finding a specialist in this field most reg NSs are not very trained in chiari.