Hello all, went for my post op today and received some disturbing news, I have to have a 2nd surgery due to a collection of fluid sitting in the spot where I had my first chiari surgery just 4 weeks ago which is causing excess pressure within my head. I don’t understand how come this was not told to me on July 31st when I first got sick and had to be rushed to the ER or the 2nd time when the ambulance had to take me back to the ER last Wednesday. How come we have to continue to suffer before people and physicians take us seriously. We are our body so who better than us know what’s wrong with it better than we do, I feel as though I would not have had to suffer for nearly 3 weeks after surgery if someone would have just listened to me on July 31st. I am so thankful to my NS he is so awesome. When he finally did get the true facts behind what was actually going on he is on it just had that it took so long. The plan this time is to reopen the incision drain the fluid and open the dura this time as well, hope to start feeling better soon
Thank you Abby
Did they do a MRI or CAT Scan when you were in the ER before? That makes no sense. I am so sorry. You didn't have a Duraplasty with your original surgery?
My daughter had to have a second surgery due to a spinal leak near brain and had to be reopened after one month it was hard but she got thru it. Make sure the incision is not leaking as infection is a factor too. She is 8 months post op and finally better with only occasional headaches. God bless
LT,
Also ask him what he is going to use as a dura patch and let me know what he says. Some are better than others.
Sorry to hear about this, but glad you found out what it was. Keep us posted. You will be in our prayers.
I'm sorry that you are having to go thru this, but glad they found the cause. Keeping you in my thoughts!
I am having so much pressure in my head. They jus say thats how it is. I have an mri coming up to see how things look a year after surgery. I want to kill myself. No one cares. My own spouse would rather just watch tv or make excuses for why we havent done anything about the way i feel. Spouse is older than me by 13 years. I am very disoriented and confused about what ever task i have at hand. I need help from some one who can help me advocate or help me with steps to take. This site is very weak when it comes to helping people emotionally
Thank you everyone, I had a MRI my first ER visit on July 31st and apparently the fluid was there then but again I was never told, I didn’t have a duraplasty with the first surgery but he plans to do one this time around, my MRI film just reached my NS at my post op on yesterday, how ironic. I just pray that this time around everything goes well and I can finally have some type of quality of life. I know it’s a process and I was doing so good at one point but as with any surgery things happen so I won’t get discouraged although it can be hard when you’re screaming something is wrong and it looks and feel like no one physicians especially are listening to you, scream louder. I will keep everyone posted and thanks so much for the support
Kyle,
I actually work on a large amount of Member Advocacy issues. We as Moderators don't know unless Members tell us they have a need. I received a text Message from a fellow Moderator minutes ago that you needed assistance.
I understand pressure inside your head. My current pressure headache started the beginning of May.
What has your Dr. Said about the pressure you are feeling in your head? Has they mentioned Occipital Neuralgia or Intracranial Hypertension, which can be Chronic or Psuedotumor Cerebri? It can also be a symptom of Chiari. There are many things that can help. What medications are you currently on? Is the dr you are seeing a headache specialist or a Pain Mgmt Specialist? Let me know the answers to these questions and we can go from there.
As far as your wife or any love one.....They can not comprehend the level of intensity you are feeling this pressure and pain.I never understood until I myself became ill in 2001 what chronic pain actually is and I worked in Healthcare.I tell everyone that doesn't understand...to imagine the worst possible pain they have ever been in then think about living with that 24/7. Then I try to explain about Chronic pain and becoming hypersensitive and makes normal pain unbearable.
I think you definitely have a couple things you should do first. you have to get your pain/pressure under control. Only a Dr. can do that. Sometimes I even have to break down and go to the ER. I also keep emergency medications on hand when my regular ones just don't cut it. Talk to your Dr. or find a new one or I will help you find one that can help you in your area.
Then sit your wife down and explain to her what you are going through even if she doesn't want to listen. have her join here or read my post. You need her emotional support.
You have ours.
Then promise me no matter how bad things get you will let someone know if you are thinking about Harming yourself. I will message you my contact information even. I more than understand.
I must give you the Crisis Hotline Number in case you need to reach out to someone and feel like no one is there
1-800-273-TALK.
I have been there. I totally understand. I am still there at times. I mean it when I say this Forum and it's Members has definitely saved my life multiple times. I am not ashamed I am very truthful and this Disorder and related Disorders are unimaginable. I wouldn't wish this on anyone and when I read about a sick child with CM it brings me to tears because I know how bad I feel every day and it hurts me so bad knowing they are feeling the same possibly. I know I had a severe CM situation but when I say I understand there is no one on earth that understands more than I do and I am so sorry you are having to live like this. Please call me if you need to talk.
Tracy Z.
http://www.ihrfoundation.org/intracranial/hypertension/info/C16
http://www.ninds.nih.gov/disorders/occipitalneuralgia/occipitalneuralgia.htm
http://www.wichiaricenter.org/oth/Page.asp?PageID=OTH000006
Kyle said:
I am having so much pressure in my head. They jus say thats how it is. I have an mri coming up to see how things look a year after surgery. I want to kill myself. No one cares. My own spouse would rather just watch tv or make excuses for why we havent done anything about the way i feel. Spouse is older than me by 13 years. I am very disoriented and confused about what ever task i have at hand. I need help from some one who can help me advocate or help me with steps to take. This site is very weak when it comes to helping people emotionally
I am so very sorry to hear that this has taken so long to figure out. I am new to your site and it is very unsettling to me that there are so many people suffering from this! I had my first surgery 20 years ago and not many people, doctors include, had much knowledge on the subject… I visited numerous doctors before my initial diagnosis, so I understand your frustration to some extent.I had my first follow up MRI yesterday due to a variety of symptoms that have cropped up again and I am starting to feel that old frustration of having to convince those around me, family included, that this is serious.
I wish you luck and keep you in my prayers for your next surgery
Kyle: I hate that you are feeling so down and unsupported! Please call the crisis number above. Chronic pain is so hard to live with and you may need to seek counseling to learn coping skills. There is no shame in that. Many of us have been there. Don’t give up hope. Keep seeking a doctor who takes your pain seriously!
StillHappy: I’m so sorry to hear that you have another surgery on the horizon. I’m glad that you will be getting relief soon!!!
My prayers are with you both!
Thank you so much Relieved
I'm so sorry this has happened to you. Hang in there, hopefully your pain and suffering will end soon. You're in my prayers. x
So Sorry to hear what your going through. The ER understands so little about chiari malformation. so I request they notify my daughters neurosurgeon as soon as I arrive when related to chiari to save us the stress involved with them blowing off her concerns . Just a tip maybe it will help 
My daughter has been decompressed x2 already and had many issues with leaking ect…and it’s a everyday struggle for her and her pain related.
Thanks so much everyone
Dear Stillhappy,
That is such a difficult thing to have to do again and I am sure it was very frustrating to have them not acknowledge it before now, before this surgery make sure to find out when they cut through the dura this time, what type of graft will you be using? I know with my granddaughter's graft, they made an incision and took the skin from above the other incision when they went in. Using your own natural skin is usually better for less risk of rejection. Her NS also said he always cuts through the dura and from what I have heard so often about first time when the NS does not , there is quite often a second surgery needed after all. With my granddaughter's when the NS cut through the dura he also went further in and cut open a web and said that the cerebral fluid immediately started flowing out ( as it is supposed to ) so it was a good thing he went further than some do otherwise that would have been missed entirely. She also had ( substantial tightness in the back of her head and of course herniation ) necessitating the removal of bone at the back of her head also . Enough rambling LOL Good Luck Grammie
Thank you so grammie, I really hope everything goes well this time around because I am so afraid that I will have to go through another round of pain and suffering which terrifies me. It seems that the type of patch matters I’ve heard that mentioned alot so I will call and find out because he did not mention the type to me. I’m just so ready to have some type of quality of life or some kind of “normal”. Thank you to everyone for the much needed information it really helped me alot