My last doctors appointment had sent me to a neurosurgeon who "offered" the decompression surgury. All of my research on this is making me "NOT" want the surgery and wonder what the effects can be long term? I have significant crowding going on with my stem into the canel. And have a list of things going on but how far does it go??? If it moves more at all??? Any input would be great.
Thank you so much..... What caused you to be bed ridden??? i've noticed alot of people feel symtoms go away when they lay down... but i feel even more pressure in my head and when i wake up, i have a hard time coming to physically and focus wise(not due to tired) ... I'm where you are when it comes to caring for things around the home (barely like I use to)... what animals do you have?
Wow... your the first one who relates to stating the "pressure" in the head?? I keep trying to find the proper position at all times when laying down.... and "Brain fog" is a scary thing. I have it more often than not...... Does this worsen without surgery??? There seems to be so many people that have more problems afterward.... My boyfriend has horses on our ranch here and I want to learn to ride so bad, yet am affraid what it can do to damage me more.
thank you so much for your replys.... in researching the surgery i fear the upper part of the stem pulling down from the brain when they make that hole.... thank you and i am so happy you shared your experience with me.... Stay strong!
My doctor left the surgery up to me. He made it clear that my symptoms were caused by impairment of spinal fluid flow and that they would not improve without surgery. He said if I decided against surgery we could do regular MRIs to make sure the condition wasn't worsening. I was barely getting by as it was. I had pressure in my head, crippling fatigue, lightheadedness and dizzy all the time, and was going numb all over. I decided to go ahead with surgery and take a chance on a better life! So far, so good. I had surgery in October. I'm back to work, fatigue, headaches, and dizziness are much improved. I still have some residual numbness but it's improving. Overall I'm very, very glad I had the surgery!
How common is surgery, OOC? I know there is no "magic number", but a lot of people here seem to talk about recovering or scheduling... is that a common outcome?
I don't know how common it is in the world at large but I'd say in this support group more people have had surgery than have not. Basically there is no cure and surgery is one of the few treatment options so it's fairly common. Depending upon the severity of symptoms you may not need surgery.
I’ve read that there are an average of 3500 chiari decompressions a year… I was diagnosed in 2004 and my symptoms have just progressed. I’m a registered nurse and am experiencing numbness and tingling in my arms and legs, dizziness, and headaches. I’m not that bad but I can’t afford to get worse. I have substantial crowding and the beginning of a syrinx. I’m all about preventing progression. I run an infusion suite for autoimmune patients and know what progression looks like. I just pray for the best.
I was never told about the possibility of a syrinx and nothing has been looked at other than my head... I never received an MRI of my spine at all.. is this something that they should have done?? Also, i'm reading alot on vision problems which i've been having alot of. Something that is odd is that there is pressure point in the middle of my back where if pressed on while i lay down, it's like everything goes away... The relaxation is INCREDIBLE to the point of even feeling better breathing, my mind feels clearer and no pressure in my head.... but to ask my boyfriend to continue to press on my back would be out of the question... it only requires a small amount of pressure... would a back brace help me? I am sooo obviously affraid of surgery.... another thing i've noticed is my ability to go to the bathroom... it's maybe 2 times a week.... if i feel pressure i get dizzy and pass out... is this something that is part of it??? i'm so sorry for all the questions...
I tried to fight it for 4 years, I thought the surgery would be way too risky. My symptoms progressed over the years and all the meds my doctors tried to give me made me sicker than the Chiari! Had surgery last month and it has really been a blessing. Hasn’t resolved everything but I can definitely say I have significant relief. So glad I did it!
If you decide not to go for surgery, keep a detailed list of what meds doctors try to give you, when they increase or decrease your dosages, etc. it may turn out that future symptoms can be attributed to meds and not from the Chiari.
Best of luck with whatever you decide!
I concur with Sparkyschick about the meds. I have had to keep a detailed journal to keep track of my symptoms and possible side effects of meds. I definitely felt worse on the meds. Nortriptyline made me have an extremely rapid heart rate and very dizzy every time I stood up. And topamax seemed to cause some visual problems. I really don’t want to try any other meds if I can help it. My headaches are on the mild side at the moment. I am newly diagnosed (last month). I don’t know if surgery is in my future yet. Trying to see how I can manage for now and if my symptoms get any worse. You are not alone. Good luck.
I still get the pressure when I stand up?Ive had decompression surgeryand 2 dura graft repairs too.Do u still get the pressure on standing?x
Emmaline said:
I had positional headaches and pressure when I was upright. I imagine the herniation was forced down farther when I stood up due to gravity, so I was more comfortable when laying down. My herniation was 18mm.
Brain fog is typical for some of us, and comes and goes through out the day.
There are 4 furbabies in my house. 2 cats...Madeline, and Elliott, and 2 Pekingese dogs...Emma, and Katie. =)
Thank you for all your replies..... Everyone helps me. Especially the information on the medications to watch out for... I am not one to like medication AT ALL.... Pressure I feel happens at any given position. Some more than others. Laying down is my worst position to be in (causing no sleep)... and wow what a wake-up call i get when i do fall to sleep laying down. Everything is off when i get out of bed. other times it effects me when i'm moving around trying to do work around the house. Tomorrow i have my appointment with the neurologist 'again' and he wants to go over with me the reviews that the surgeon sent him. I'm hoping he'll have someone who he can send me to for a second opinion on surgery. There aren't many where i live. Thanks again for all your help!
Shadow,
I'm not an expert on Chiari by all means but from what I am finding it is extremely important to have a neurosurgeon that specializes in Chiari. I realize that clipping anneuysms, removing brain tumors is way more difficult than Chiari surgery but each surgery is not text book. From what I read the neurosurgeon has to get in there and then decide exactly how to do the surgery for each patient -- kind of like a tailored fit. I've been told that if you just go to any neurosurgeon you might end up worse than you started. It would be worth the travel time and money to seek a specialist.
Just my opinion,
Melissa
The first doctor I went to - very pleasant (recommended and had done many surgeries for chiari) and wanted to do surgery immediately. I chose a 2nd opinion. personality - typical neuro-surgeon. But, his comments - your symptoms do not
warrant such a major surgery at this time - if it changes at any time that would be the time to reconsider and then decide.
For me, it was the right choice - no surgery. If symptoms continue, change, get worse, then I will reconsider surgery.
hope this helps
SD