I was just diagnosed last week w/ Chiari's after being rushed to the ER twice in 2 days with the most severe pain in my head that I have ever had. Only way I can describe it is I thought I got shot in the head. Now, I have been getting "normal" headaches for over 10 years, but nothing that 2 Tylenol didnt cure.
FOr the past several months, I have had classic symptoms of Chiari's. but just brushed it off (stiff neck and shoulders, urinary incontinence, balance problems, pounding headache when I strained to havea bowel movement, ringing in ears, insomina)
My NS is VERY cautious, which is great. He said he doesnt take cutting into someones brain/skull lightly, and doesnt want to rush into surgery. he is sending me to a neurologist Monday for their opinion, but honestly, I work in the medical field and see people everyday who are hooked on narcotics, and i dont want to be one of them. I dont want to be put on pain meds, only to end up having the surgery anyway. If it was up to me, I would have had the surgery yesterday. I want my life back. I was a very active 37 year old mom of 2 boys who used to love going to the gym everyday. I will trade 6-8 weeks of recovery time from surgery to get my life back. Please, am I crazy for wanting to go ahead with the surgery?
It's a terrible quandry to be in. At least you've got options. Many people don't. I know that doesn't solve your dilemma- especially with young children to think about. I suppose it all hinges on how much faith your surgeon has that surgery will significantly improve your quality life, which by the sound of it has suffered a lot. That's if he's willing to do it. Seek a second and third opinion. Some surgeons are very cautions and conservative. They just don't want to take risks regardless of the benefits to you. Others are more bullish and confident.
I speak from experience because I have a brain tumour which is amenable to surgery. The first surgeon I saw was pretty nonchalant, if that's the right word. Casually scheduled me for surgery but I decided to seek a second opinion. The next surgeon I consulted practically pushed me out of his office telling me it's not cancer and I was probably born it. Of course, he had the benefit of a new scan a year later that showed the tumor hadn't changed. Anyway, it's a long and complicated story. Suffice to say MY quality of life is close to zero at the moment. I have a constellation of symptoms which are supposedly not related to my tumour. I'm not so sure. So do I elect to go for surgery and hope my condition improves or put up with a miserable quality of life? It's funny, but one of the things that dissuades me is that I have a receding hair line and surgery would leave me with a visible scar. That should be the least of my worries, but hey! Vanity vanity.
It all comes down to risk and benefit. Surgeons will tell you the risks. You have to decide on the benefits. Suffice to say, many people have had very satisfactory outcomes from Chiari surgery.
Sorry if none of this is any help. Hopefully someone whose had the surgery will respond with their experiences.
Best of luck to you and hope you have a satisfactory resolution at the end of it all.
You are absolutely not crazy for wanting surgery. I am 29 with 8 and 9 year old daughters. Before my Chiari became symptomatic, I was a soccer player, full-time employee, volunteer, student, etc. but I slowly lost my ability to function the way I felt I should with the effects of my Chiari/syrinx; honestly, it was a downward spiral and affected all components of my life.
Rather than continue to spiral, I advocated for referral to neurosurgeon instead of neurology due to the need for surgery in order to fully correct a Chiari/syrinx rather than just cope with it using meds. My neurosurgeon recommended surgery and I chose to wait a few months to schedule because my deterioration had plateaued and I needed to feel like I had everything (work, school, childcare, house help, vacation planned, etc) in order before committing to surgery and recovery. Sounds silly but I really wanted to be able to do the surgery on my own terms, so that I (and my family) was mentally and emotionally prepared for the long haul, rather than urgently trying to prepare for coping with both a life-changing diagnosis and major surgery.
Heads up that recovery is not a 6-8 week process though. I was in the hospital for several days, on major pain meds for several weeks/months (hubby/friends/family watched children, cooked and did housework), could not drive for months (on pain meds plus lack of mobility in my neck), am still in rehab (managed by both a physiatrist and neuro-ophthalmologist) and on partial medical leave from work/school. Recovery estimates from my doctor(s) is that it will take about a year for me to get back to a new normal (but surgically, I am healed and my symptoms have improved drastically). I don't intend this to be discouraging but want to make sure you know what this surgery entails, especially as a parent. Although I'm still recovering, I would have the surgery again in a heartbeat because even though I'm not back 100% yet, I'm in much better shape to parent and live my life fuller than I was pre-surgery.
No, you're not crazy, but please be careful. I know you have the connections to get in and have it done quickly, but please make sure you have a great neurosurgeon. There are very few who truly are up to date on chiari and newer surgical methods. A botched surgery, an incomplete decompression, if too much bone is removed, you could end up in a lot worse shape than you are now.
This surgery isn't something to take lightly. I'd kill to have your connections so I would not have faced the dalays I have/am facing. It took me nearly 6 months from the onset of severe neurological symptoms just to get an MRI. Drs were trying to blame my symptoms on my autoimmune diasease(Ankylosing spondylitis). I'm sorry, but arthritis doesn't cause severe headaches, vertigo, tremors, etc.
I finally have a consult with a neurosurgeon on Dec 22, 4 months after my Opthamologist found I have optic nerve swelling from intracranial pressure. My vision has continued to get worse, my headaches are daily & debilitating, I can't drive due to vertigo, I can't take care of my 4 kids or my house. When my headaches are bad, I get horrible stabbing pains: nerve pain, back behind my ears, my trigeminal nerves too, plus it'll feel like someone's shoved an ice pick in my eye sockets down to the back of my head. It's horrible. I can't stand being around my children most of the time; too noisy. I spend 3/4 of my life shut up in my bedroom with blackout curtains closed. My quality of life is nonexistent.
I was" fine", with occasional headaches and neck pain and strain I thought was due to arthritis, just a year ago. Things got worse after a slip-and fall accident where I hit my head and got a whiplash.
I know that when we r feeling really bad we all want surgery to "fix" us back to the way we were...we all want our lives back...however, once chiari rears it's ugly head that may not be possible and u need to be prepared for that as well.
Surgery as it stands is a means to slow progression...it is not a cure or a fix..it may help how we feel, and we can develop other issues as a result of surgery..... meningitis, a CSF leak, brain slump, peusdotumor cerebri(HHI), seizures,epilepsey,and it is possible that we will continue to have the pain......
If u have a CSF blockage I would understand wanting to open that up and avoid a syrinx from forming, one reason I had mine.....but u do have to consider all the possibilities and if u do not have a blockage, than mayb u r in a chiari flare and it will calm down and u should just monitor the area to avoid ne issues such as a blockage or a syrinx.
BTW 6 to 8 weeks for recovery??? not sure where u r getting ur info, but it can take longer than this, and u really need to see if u have ne related issues...like Ehlers-Danlos, which I found I had and had no idea, but I heal slower as a result.....
It can take up to 2 yrs to fully recover from this surgery....the outside scar may heal in 6 to 8 weeks...but we r all diff...so do not think u will be back like new in a short time.....it just is not so.
Glad to have u here, but sorry for the reasons that brought u.
What they all say is very true! And 6 to 8 weeks is not what it takes to heal! That is what it takes for the initial incision to heal up! I'm hitting my one year mark next week! I'm not healed yet! I've had time periods where I've said "I feel great" and that the surgery was a success!
But currently I'm fighting a lot of swelling in my neck and unexplained swelling which is causing a lot of pain.
There has been neck pain. Memory struggles.
I am anxious to get back to working out and want to train for a marathon! Being that a year as past I'm frustrated that I'm not able to train yet! I wanted to share this with you, so you know that all of this takes TIME! That is something you have to prepare yourself for if your going to go forward with this!
I was diagnosed with Chiari 8mm in August this year after I was rear ended at high speed and sustained a concussion and whiplash. I have been going thru the Chiari run around and will finally see a true Chiari specialist in a few weeks. I have been offered surgery since I do have a partial CSF blockage posteriorly. Neway, on my good days I wonder the same thing am I crazy for contemplating this surgery, but on my bad days I am ready for them to just cut my head off. Drastic I know but thats how bad it can get.
I also have planned to have the surgery after I get caught up with work and after the holidays and a good spring cleaning in the house. Pushing myself like I am doing makes me realize just how not ok I am. It just seems a little bit like "nesting" I did before I had the boys. Everything had to be in order.
I think as long as you go into this with a positive outlook and understanding that this surgery wont cure you but will hopefully make you feel much better you will be fine. Make sure you allow lots of time to heal. Good luck and welcome!
I know someone who just went in to see Dr. oro on fri - and he told her although she has symptoms, she is not a good candidate for surgery. She has normal csf flow, and doens't have ant SM. yes, she has other symptoms, mostly extreme headaches, but I am getting the impression Dr. Oro is only doing surgery on people who have CSF blockage. I think the reason why is because the surgery is a big deal. You must remember you will not go back to normal. You also need to decide if you will be able to live with it if something goes wrong - are your symptoms so bad that is is worth possible dying from the surgery? Dramatic yes, but a possibility.
About the pain meds - I didn't want to be on them either, but I am starting to realize I most likely will be on them for the rest of my life, unless there is a miracel cure. not only do I have nerve dmamge from th Chiari, I also have Occipital Neuropathy. Nothing they can do about it except give me steroid injections which only last a week. I got my surgery in July, and I still, still have terrible headaches. I still get the numbness in my fingers and legs. I still have horrible pain in my neck and shoulders, I still get extremely tired. I still have trouble with my vision, even more so when my head is pounding.
My surgery is considered a success. I have normal csf flow now, my syrinx have shrunk. But I still have the rest of my symptoms, except the comprehension and trouble speaking.Thankfully that has gone away.
I will be living in pain for the rest of my life. There is no way around it. I had to have the surgery because i was getting completely incontinent, couldn't barely walk, couldn't barely speak or understand anything. My csf was so ruined i almost died in bed one night. Thar was when i decided to go ahead witht he suregery, because it was a matter of life and death. At that point, even knowing I could die from the surgery, I knew I could die without the surgery. THAT is when you should get the surgery. I think so many people want to have their headaches go away and get back to "normal" and they are not realizing that they WON'T be back to normal. Not ever. You might get a little better, but not normal. This surgery is a risk, and it should not be a decision made flippantly. You need to understand you could get worse - and are you at the point where that is ok with you? I want everyone to realize that you do not go into surgery, and six months later you are ok. It doesn't work like that.
You are not crazy for wanting to be better. But you do need to make sure that you are bad enough that if you were to have a stroke or an anurism or get menigitis, that you were at the point where you had no choice.
Crazy! Well is it crazy to put stitches in a large gash so as the attempt mending it? Of course not! To get and wear glasses so as to see better? To take diabetic meds to control the sugar of a diabetic? We are all hard wired to self preservation. Chiari doesn't feel or act like something for which our bodies where prepared to endure.
That said, take heed to what Selma has tried to express here. There is no 'fix' for Chiari. Even some of the better Chiari NS, may tell you "oh you are fixed now... you don't have Chiari now" Sorry to say but that is a load of cockroach left behinds! The surgery is hairy because of the areas in your head they have to operate. The risk is high and thus the need for the best Docs. But your medical experience may or may not help you with this one. Only time can help.
I had surgery over a year ago. There is no way I'm cured [despite what Dr Di says] and there is no way the symptoms are all gone. Are they better? Are they enough better that left to do this again I'd still have the surgery? Absolutely!!! However, we have others here on the forum who have had surgery more that once and still are not doing well at all. So please, with this one, weigh all the odds cons and pros. Don't be afraid of the surgery but don't put your trust in the Doctors for this one either. This Chiari is a hands on curse that you must deal with yourself. Many in the group here have been through the run around and are still going through it. We will of course be here for you. But even the best Doctor will admit that he doesn't really understand this one totally. Chiari is a wicked, evil, conniving and deceitful little bugger. It will lie to your central nervous system over and over. It will make you feel all sorts of weird symptoms that can make you even question your own sanity. So it's really no wonder that Docs don't understand it.
Not trying to scare you. Just trying to commend your positive attitude while warning you to do your research. A goal of 6-8 weeks will prove very detrimental in the long run. Recovery takes a lot of time. Your central nervous system is askew, totally askew. Tell me, what part of your body isn't effected or affected by the central nervous system?
Again, crazy? No way. But, again, weigh all the odds carefully and for your own sake make sure your outlook is realistic for the long term. Then decide.
seems as though the girls have given the brutal honesty of the chiari world and i hate to say it but #1 they are right and #2 we are brutally honest because that is the only way to get people to truly understand.
i am 9 months post op. was an all american soccer player. rostered for the national team
i was a very fit 32 year old female. ran marathons. was a police officer and won the physical fitness award for my police academy class. i am the mother of two little nuggets 2yo and 6yo.
i get where you are. i get where you want to be.
this is not a quick fix. this is life changing. i am now retired. i am no longer able to run. i can barely keep up with basic house chores let alone go to the gym for a killer workout, spin class, whatever i felt like doing.
so do your research, be persistent and most of all, be sure that this is the only option you have. be ready to change your life. you will never "be cured" as the doctors like to say.
let me know if i can help you in any way. all the best.
I personally have not had the surgery yet (dec 3rd) but Im pretty sure most people with chiari at some point have felt the same way. But I agree with everyone else. Surgery isnt a cure and it isnt something to take lightly. There are many people out there that have had surgery with good sucess, and many people who have stayed the same or became worse.. It is a major surgery and it comes with major "possible" complications.. My deciscion was based on the fact that I do have a csf blockage and I do have a cervical syrinx that is growing pretty fast.. So for me the risk of permanent nerve damage is something I dont wasnt.. In my opinion I would make sure that whoever your doctor is will test you for all of the other things that go along with chiari. My surgeon wa very blunt with me and told me flat out that the surgery may not help ANY of my symptoms. I do feel that if your surgeon tells you this will be a guaranteed fix, then its time to look for a new dr.
I have a 9 y/o daughter that has had symptoms of headache, dizziness, nausea, aching for a couple years. PCP did work ups & never really found anything. Well 4 weeks ago she had a bad fall down hardwood stairs & hit the back of her head off 7 steps. Diagnosed w/ a concussion. 4 weeks later all previous symptoms worse, headache nonstop of varying degrees, dizziness, nausea & tingling in legs which is new. MRI turned up Chiari Malformation Type 1 of 7 mm. Neurosurgeon wants to try migraine meds prior to considering surgery. Her appointment for neirologist is taking over 3 weeks. Had full MRI of cervical , thoracic & lumbar regions. Get results in morning. Meanwhile after straining for bowel movement tonight her symptoms are flared up & now we can add double vision to the list of symptoms. She seems to be getting worse. MD in call told me Chiari is never an emergency call neurosurgeon in morning. I am an RN BSN. I feel helpless up until 1230 am w/ sick child. Who will miss yet another day if school. I feel like I'm getting no where fast. HELP?? Any suggestions?
I am 26 years old and have been waiting 8 weeks of my 15 mediacl ei for my surgery. I have a 3 year old daughter and Im very worried if i should get the surgery or not seeeing as i am a single mother and need to work to make ends meet. I dongt know what to do anymore and am honestly looking to go back to work and not get the surgery. I dont want to be playing soccor with my daughter one day and drop. im very nervous and dont really know how to deal with all this. any suggestions
I would consider surgery.
Im now 39 at your age I was diagnosed, I HAVE to take narcotics, I hated and fought not to take them,now no choice.
My life is a wreck,if I had your options, I would take surgery. God bless
Burdzmom and all the others are absolutely right with their replies. As i read your post and all the comments, I am in tears! It is so hard to live a life with this ugly thing every day! And it breaks my heart to know that there are so many others out there that are struggling daily with their quality of life in the balance. I suffered for years and like you Just wanted my life back, and it is still a tough pill to swallow that I am not the same and never will be due to the Chiari, the surgery and the other health issues that go along with it.
When you are making your decision, please weigh all the options and just know that as others have said, we are not trying to discourage, to bring you down even more, We are just being honest about all outcomes and any expectations you may have, I know I had MANY and I was let down pretty hard, and I am at the 2 year mark. I think what makes it so hard sometimes is the fact that I can go a couple weeks sometimes and feel great, so I get excited that maybe things are going to get better, then BOOM! It's like someone flipped the light switch and it's all back to the same.
So like the others have said, do your research, make sure you have an experienced NS should you choose to go ahead w/ the surgery... and most of all you have to learn to be strong, patient, ask for help when needed , make sure you have a good supposrt system and I do alot of praying! My faith & God have really been my #1.
Healing Prayers to you & Strength for your family
I am 60 years old, spent 20 years serving in the military and still working for the Federal Government. I had my surgery 3 weeks ago, it took two years to diagnose my Chiari. I have always been active but when my balance was shot, my left side of my face paralyzed, I became disoriented, in a brain fog, lost my short term memory and hearing all on my left side, passed out driving down the highway.... I wanted answers. Finally the VA gave me a diagnosis, the neurologist wanted me to wait 3 months to see if the symptoms went away or worsened before referring me to the neuro surgeon. Two weeks later I told her to give me a referral because the symptoms had gotten much worse, now I had the harsh voice, difficulty swallowing, felt as if I was going to pass out, icy hot shooting pains down my spine and legs, shin and ankle would go numb. I honestly thought this is it I'm going to die. I waited and waited for that referral and finally went to see my Air Force doctor who got me an appointment with a neuro surgeon the next day and I left that appointment with a surgery date of 19 March. Other symptoms came with a vengeance, I was making the bed when my brain started pulsating and my heart racing, I had to lay down and I thought I'm going to die from making the bed! It became not when I get the surgery it was "if I live long enough to get the surgery". After the surgery the first thing I noticed was the lack of pressure. I still feel like crap but some days I feel good - but like Jenandmike said if you push too hard Bam you feel as if you are back to day one. I know I'm not crazy and I prayed for the surgery. I got a letter setting me up for another MRI from the VA a couple days ago, still no surgeon appointment - I swear it if it weren't for the military doctors I would be bed ridden by now. I had never been bombarded with so many symptoms in my life and I thank God for guiding me in the right direction.
No you are not crazy. You like me want to be out of pain and have a normal life with your children. I myself went from bodybuilding , figure competitions, gym daily, vacations and playing with my daughter each day , to not being able to do much but lay in bed all day in pain. By the time I was finally diagnosed I had chosen to have the surgery within less then three months, Just came home yesterday.Yes it was the worst pain I have ever endured in my life, still very bad ( having a hard time with meds , and everyone is different )
I wouldn't change it though. If this is what it takes to get back to being a normal person and active with my child and family then in my book it's worth it! Without it the Chiari would have progressed and with already losing feeling in some extremities who knows what would have happened. I'm thankful I did.
You do what you feel is right for you. Your NS would not do a surgery that he didn't think was absolutely necessary so I wouldn't worry about that. Just make sure you ask questions and go with a NS you are comfortable with.
I wish you the best!
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