:::Waiving hello:::: I know this is a loaded question, but please hear me out.
I'm 32, fit and active, recently diagnosed in May with 15mm Chiari. I had been having the head pain for the almost 4 years when my mom pushed me to see a doctor about it. I was immediately sent for an MRI. I've met with two NS with two major hospitals in my area and they both immediately want me go for surgery.
I have read people with far worse symptoms and for longer who are not facing (or offered?) surgery. I don't understand this. I don't really want to do surgery. Besides 15mm being on the larger size, I am told that there is really very little spinal fluid flow. My head pain is consistently a part of a days, but it doesn't stop me from living my life. Its the only symptom I really have.
I just can't stand the thought of recovery as I have 2 kids under the age of 4. Missing out and not being able to care for them will kill me. Also, I run a small company and I truly cannot "not work" for anything more than a week. Luckily, the bulk of my work happens in my home office. So I am hoping that on that front I will be ok.
So in all my rambling, I am wondering why I am being pushed to have surgery and should I do it? I've had 3 surgeries (all childbirth related) and I know the recovery struggles - both physical and emotional - and its just so awful. I have a high tolerance for pain, but the emotional aspect of surgery recovery is much harder for me.
I'll probably annoying at this point, so perhaps someone can talk me off my ledge. Thanks for reading!
Having CSF Flow Blockage is very serious. I am sure that is why they are recommending surgery. My pre op CM symptoms were not that bad I thought & I almost became a quadriplegic from CSF Flow Blockage. The pressure it caused almost destroyed my C Spine. Please call and ask the NS's if the CSF Blockage is why they are recommending surgery. I know you are scared and I don't mean to scare you more, this can just be very serious. I wasn't pushed to have surgery I didn't have a choice. Some people do well in their recovery. If you have major CSF Blockage surgery is a necessity. I am very sorry. All I could do was think about my young daughter and I had less than 24 hours between dx & surgeries. Please follow up with your NS's & look at this as a blessing in disguise. They found your blockage before you had lasting complications. No one wants to have surgery but at least you will be able to be a parent to your children. I am against CM surgery unless this very reason or other major health issue is involved. I hope you able to find peace within yourself. Do not think of surgery as a punishment. Blame lies nowhere or with no one. I am very sorry. Please step off the ledge and think about what's important to you and what you are willing to go through to save and protect it. The strength is there inside you just waiting to be harnessed. You can do this. It's not easy but as a parent we do things we never think we are capable of for our children.
This is exactly what I needed to hear, thank you. It hasn't been spelled out to me regarding the CSF flow, and I have just been focused on the symptoms, of which I have very little. I'm stubborn and tend to take on too much, thinking I'm invincible. Thank you, thank you!!!
I agree I was able to work and look after 2 small children although I did have symptoms headaches were not a major concern however my blockage was so bad it has caused a syrinx causing quiet damage. I say quiet because apart from intermittent numbness and thoracic/ chest pain I didn’t know it was there. I was given no choice in surgery and had it 8 days ago. It is hard but my mum has moved in to look after the kids there is no way I could be working I can do emails though. I will be off 3-4 months. It will hopefully worth it though as it will prevent further I ongoing damage which can be irreversible. No one can tell you what to do I was glad I was given no choice as I had virtually no flow but knowing your flow level is the best way to decide. Good luck x also I am missing doing things for my children but hopefully this is temporary and will allow me a better life in the future. X
Just make sure you have plans to have childcare for several weeks if possible. You may not need it, some on here recovered quickly. I, however, had a very painful and complicated recovery. My husband had to take 2.5 months off of work to care for me and our three boys last summer. They were 8,5, and 10 at the time of the surgery. It was miserable. However, now a year later it is better. I was in a scary place before the surgery. It had to be done with the rapid progression of cognitive and motor symptoms. Just be prepared. I have undergone more surgeries by 33 (when I had mine done) for various things than most in a lifetime. Four on my foot after breaking seven bones, spinal surgeries due to degenerative disc disease, etc. And I have birth to three very large baby boys with full induction and no pain meds. However, nothing prepared me for this recovery. I wish I had believed it more when I read people’s stories on here talking about how hard it could be. I was always known as one though girl, but this shocked me. Definitely do it if you feel it is right, just make sure you are prepared for the possibility of a long recovery.
I was introduced to my sister's friend who has Chiari and had 2 surgeries. She feels better now but she told me that if you don't NEED surgery, don't have it. She said that recovery time is long and she had to go for PT for a while to get herself back to functioning normally. For me, I do not want to have surgery either unless it is absolutely necessary. I have a 7mm last time I got an MRI like 5 or 6 years ago and was told that I should just monitor my symptoms and if I start feeling worse to see what the next step it.I have 2 kids too and have to work, I can not just be out recovering for that length of time. I would say if you have no other symptoms that are limiting you and nothing that is going on not causing you damage to your body then wait it out. But I'm not an expert, and really, who is with this ailment that we have? lol But that is jus my opinion.
Hope you find the best option for you and are having a pain free day :)
My thought (and I am postponing surgery until I absolutey have to have it) is that you never should have any surgery unless it is interfering with your quality of life and are willing to take the worst case scenario if the surgery doesn’t work or there is a com
Sorry to hear of your challenges both from your diagnosis and the decisions that you now need to make. I too was 32 and had 3 young children when I was diagnosed with Chiari II malformation. I saw 9 neurosurgeons before a correct diagnosis was made at the Cleveland Clinic. The problem in 1985 was that no one knew how to “fix” me! I ended up at the Montreal Neurological Institute for surgery after almost a year of looking for help and progressing Chiari symptoms. (I do not live in Canada but my health insurance covered the surgery there anyway!)
MY SURGERY WAS TOO LATE TO HAVE A GREAT OUTCOME!!!. While I certainly had a tough few months after the surgery caring for children and trying to run my household the surgery saved my life. My worsening symptoms included the usual headaches and pressure, double vision, ataxia and balance problems, numbness in both of my hands and a basic feeling of being unwell. The worst symptom for me was progressive difficulty breathing as the Chiari “tonsils” herniated a few centimeters more every month. The nerves that controlled my lungs and diaphragm were compromised and the last surgeon that I consulted told me that I would have died within the next few weeks without the surgery.
Your family needs you and if this surgery is necessary then you will need to adjust to your new “normal”. I have many lingering effects from my condition and had to accept a life different from my expectations.
I am now an active grandma, professional musician and small business owner and the few people who know my medical history are amazed at my very positive attitude and outlook on life. I have made lemonade with my Chiari lemons and hope that you will find the strength to do the same. I have an amazing husband of 41 years who has been incredibly supportive throughout our life journey and who has been at my side during many subsequent surgeries and hospitalizations.
Please ask for help from friends and family and don’t be afraid to admit that you will need that help for quite awhile. You and your family can live with Chiari and come out stronger on the other side of your surgery.
Okay, quick question, my most recent cine MRI stated that I have some restricted flow posteriorly. Are there varying degrees of restricted flow? I was hoping to wait to have surgery since it's not completly blocked yet? I don't have a sryinx.
yes unless you want to get worse PARALYSED OR URINATING ON YOURSELF . EXACT WORDS FROM MY NS .. SURGERY SAVED MY LIFE DO YOUR RESEARCH WISH YOU THE BEST:)
I had surgery 11/29. I had ever complication you can have and some my neurosurgeon had never heard of. I ended up needing a shunt and having 4 surgeries. I spent 87 days in the hospital and a still not right. Had I known in advanced this would happen I never would have had the surgery.