My back story is a little long and unless anyone wants to hear it i'm not going to bore ya'll. I just want to say to those of you that have the option of surgery - and what I'm about to say may or may not apply to all of you- so please don't get defensive. i'm just putting it out there. And I haven't been on in about two years either so I don't know anyones stories here.
All I want to say is there are some people on these sites that I really feel like WANT something to be wrong, and are reaching and grasping at anything just to have the surgery. Ok I take back want something to be wrong. maybe want their Chiari to be worse than it is. If you are having minimal symptoms, and I want you to REALLY sit back and go through all the posts and take a good honest self evaluation against those who have had it really bad-and please, please, don't jump into surgery if your symptoms are minimal. I was one that didn't have a choice- I was going to die- but i'll tell you the only symptoms that got better were my speaking like I was drunk and even that still happens and my comprehension of others. Everything else is the same OTHER than the fact that my cerebral spinal fluid is somewhat flowing normally now and I have room back there thereby allowing me not to die. I have nerve damage in my brain now, nerve damage in my spine which caused nerve damage in my body. I STILL have a 27/7 headache, still get numb, still pee my pants at times, and about 3-4 times a month get the full blown crushing oh my gosh I am going to jump off a bridge headache that lasts anywhere from a day to a week. I can honestly say the surgery did NOTHING for me, other than change the fact the Chiari won't kill me ANY TIME SOON. My prior symptoms, honestly, were tolerable compared to this. No, I didn't jump into surgery. And maybe what I'm irritated at now is that now I just have a whole list of NEW things wrong that weren't there before the surgery, and I didn't have a choice.
So all I'm saying is if you DO have a choice, really decide if it's worth opening a new box of problems. so many will tell you it is NOT a cure- yet we all look to those that say they are doing GREAT and we get blinded by anything else. I FULLY expected to be OK after about a year. It's been almost three years now and I'm just getting worse. The surgery MAY just make you WORSE and that would be a damn shame if you really didn't have a bad case to begin with.
I also didn't have a choice. I was quickly becoming a quadriplegic. I had 16 Hour Emergency CM & Rebuilt C Spine Surgeries. I live in severe chronic pain and feel like my head is bolted on 24/7. I have a vision problem and Occipital Neuralgia, daily headaches, and neck and shoulder pain. It will never get any better. I am not bitter. I have never asked God "Why Me." I just would never want anyone to live like I have to daily. I also was recently diagnosed with POTS, EDS, Severe Degenerative Disc Disease, Spina Bifida Occulta and was diagnosed with Geniculate Neuralgia and had MVD surgery prior to my CM1 dx.
It took me 52 Specialists and 4+ years to get to the right NS that knew I had Geniculate Neuralgia & what it was & what to do, then he found my CM1 almost too late. I have the best possible PCP and Specialists and I still struggle, but I won't Give Up.........Not Today at Least.
MVD Surgery-12/4/2004
CM & C Spine Surgeries - 9/26/2005
Discectomy C5 Fused C6 - 8/2011
I volunteer with this Forum to give back what you have all given me.Tonight I am up sick and have been in the hospital again this week. I will never be the person I used to be, but I make the best out of my skills and time each day when I am able to do things. Chiari is difficult. Almost impossible at times. This is my story and I rejoice with everyone that does well. Just please understand why I can't tell you to have surgery unless you have a major and I mean major health problem. It doesn't mean I don't care about your symptoms and am not empathic. Just ask me about mine and about my life then think about what's worse. I am probably one of the kindest people that will assist anyone with anything. I am very analytical and have a medical education and background, but most times speak with my heart, because this is that devastatingly important. I know too many Chiarians and their stories. I am not Jaded.....just Honest.
Thanks for posting these latest accounts. Takes a brave person to open up like this but it is very helpful to people like myself who are still trying to decide whether to go through with the surgery or not. Having read other accounts from people in the group I have written to Dr Fraser Henderson asking if he can help me with some advice as no-one in the UK seems able or willing to commit themselves to answering my questions. Once again well done and thanks for the help.
It always the best thing to hear the truth. Everybody has different views and experiences. And nobody should walk into this kind of surgery, blind. Only that way can people make informed decisions.
Im sorry to hear that you are not doing good. And I am grateful for your honesty.
@dodge - whereabouts in the UK are you?? I know how you feel… there is hardly anything or anybody here in the UK who can provide advice
I had been scheduled for surgery, and due to a family crisis, I have postponed it six months. In the past few weeks my symptoms have all but disappeared. I don’t know how or why and don’t care, but for whatever reason I don’t need a surgeon to crack open my skull. So, I guess I am headed back to “watch and wait” status. I understand your words, and I appreciate the sentiment. Thanks.
Sorry guys but my first reply doesn't seem to have been picked up.
As I said I am living near Maidstone in Kent and currently being treated at Kings College Hospital in London but sorry to say am not finding them very helpful.
Maybe this is off topic, (I'm new to this) but I'm wondering why so many doctor's I've talked to say don't do anything until the neurological systems are bad. I have constant pain, and have had it for as long as I can remember. I had signs of Chiari when I was born, however they assumed at the time I had congenital torticollis (they discussed surgery for that at the time but instead decided on physical therapy for me as a baby.) My neck pain was always explained as caused by that until I finally had an MRI at 30 and they saw the Chiari 1 with what the radiologist described as 8 but the neurosurgeon described as 12mm herniation. Currently I've been diagnosed with Chiari, Degenerative Disc Disease, Severe Osteoporosis (diagnosed at 40), Osteoarthritis, Myofascial pain, Sjogren's and now Fibromyalgia. I am now 56, I have constant pain, migraines at least half the month, headaches daily, and very limited mobility (meaning I can't do anything physical, limited driving and lay on a heating pad half the day.) Yet, I look completely healthy, can tolerate taking all the different kinds of medication and as long as I limit my activities and pace myself I can maintain. All my doctors say just take the medicine for the pain, the muscle relaxers daily and don't think of surgery until/ if I start having more neurological symptoms. I'm scared of the surgery since I haven't heard of many successful ones, so that's ok with me. I'd love to hear of some successful surgeries, or just that the status quo I'm maintaining is OK. BTW....I'm in Atlanta, and am satisfied with my doctors, but if anyone has a doctor they'd suggestion for a second consultation, that would be great.
I couldn't agree more with what you say. Both my daughter (18mm) and I (6mm) have chiari and while we have debilitating headaches and other pains at times, surgery is not a route we want to take. I feel that if this can be managed for as long as possible without needing to go that route then we will seek alternative routes and alter what we do so we do not make it worse. Like you said, surgery is risky and does not guarantee a cure or that it will make things better. Unless we are told we need it, it simply is not an option for us at this time. Thanks for sharing that!
I had an extremely successful surgery and smooth recovery. I know I don’t post here enough to offer encouragement. I know more people personally with chiari that have had a successful surgery than have not.
When I went in for surgery I was terrified and had prepared for the worst because of all the horror stories I had read. I prepared for a horrible long more than a year recovery. I was so pleasantly surprised when I was back to work part-time at 4 weeks and full-time at 6.
I’m thankful everyday that I choose surgery and have my life back from the clutches of chiari.
The decision to have or not have surgery is such a personal one. I had surgery 9/20/2011 by Dr Oro.
OK I am so torn right now. I go back to my doctor on the 12th to give him my final decision about whether I want the surgery or not. And if i do, I hope and pray mine is a success but then I read so many posts saying it didn't help them. My NS says that he believes we should head it off before it becomes debilitating b/c within the last year, I have rapidly gotten worse. I don't have the life threatening symptoms right now...no seizures, no fainting, etc. BUT I do have tremors throughout my body regularly and extreme dizzy spells so are these signs that those things are coming. I have daily headaches with neck pain (its awful) and tingling. I have started stuttering alot and can't remember where I am over half the time. I blurt out the wrong words often and can't walk more than a few minutes at a time without completely giving out. These are just of the few things going on, while not life threatening they are VERY life altering. Would you tend to agree with the doctor in doing the surgery now b4 we pass the point of no return or what?
@frustrated - I do think chances of recovery are better the earlier you do it. Last year I had no problems in the spine. And 10mths later I have a pre-syrinx. Which is massive change in 10mths.
This is why im having surgery (amongst other reasons). Better to try and to help things now rather than wait for all the permanent spinal cord damage sets in. Again this is just my opinion. Only you can decide whether its worth the risk or not. Its good to hear the bad stuff… so you dont jump into surgery for the wrong reasons. It took me a year to make my decision. Not a decision I took lightly. Good luck
Elizabeth, I also am in Atlanta. My symptoms started last August with severe headaches and temporal lobe seizures that we weren’t sure about, then in November, myoclonic seizures started with severe headaches, dizziness, stuttering, not being able to get words out, balance problems and severe weakness on my right side, times I can’t pick up a fork. I started off at Emory university’s epilepsy clinic, thought I liked it at first since they treated the temp lobe seizures with meds and helped, but once very thing else started, I stayed overnight for video EEG monitoring, the seizures, they state, were not epileptic in nature and said I was suffering from conversion disorder, the seizures and everything else were psychogenic, they said. Which is what a lot of people in the forum have been through. I saw a psychiatrist, also at Emory, who disproved this, yay! Then was sent to the headache clinic, where was given topamax and imitrex as needed. These didnt help, because the headaches are spinal fluid flow related, not migraines. There are 2 ladies in my community who went through similar things over the years and had the same diagnosis problems until they both went to UAB med school for possible answers. They were diagnosed and referred to their chiari malformation specialist, Michael rosner, md. He is in hendersonville, North Carolina. I went through the same steps, once I learned their success stories, and am having surgery June 26. I have been out of work since November, i am a dentL hygienist–so i cant work with seizures, dizziness weakness or balance probs, and my daily quality of life varies day to day.
B4 anyone chimes in with a story about dr rosner,because he is slightly controversial, please hear his success stories, and realize he is quite a renegade. He will tell you the painful blunt truth, and speaks at conferences about his philosophy that the decision to do surgery is based upon the degree of symptoms, and the blockage of CSF flow. Not always the amount of herniation. I am only a 5 mm story, but no one found this, after Emory I saw another neurologist, and although nothing can help until the surgery, hope is out there for me. And if you get to your breaking point, you can always atleast go for a consult. They are amazing.
Thanks for that reply Amsand211. Thankfully, I don't have any of those issues yet, just the pain, etc. and my "battle scars" show up on x-rays and lab results, so I never got sent to the psychiatrist thankfully. I hope it goes well for you. Please update us after your surgery. Best of luck! I can't imagine working and having to deal with those issues.
Frustrated- ok before I had my issues arise of my entire body becoming paralyzed- ie my lungs- these were the symptoms I was having too, and I also was seeing Dr. Oro- and even he was saying I needed surgery ASAP. So yes, I personally DO agree with doing it before you get worse. I'm talking to the ones that have headaches here and there and are going to every specialist out there being told they are not that bad and also asking about filing for disability all the time- which by the way I WAS denied lol. Anyways- yes you seem to be on the path I was on, and whathappened is I lost my mediciad for about 6mos and in that time I progressed so mch and so bad that's when I started having my episodes of being paralyzed all over. You DON'T want THAT. And I'm not saying it's bad for everyone. You may come out the other side just fine. again I;m talking to those that aren't so bad.
frustrated said:
OK I am so torn right now. I go back to my doctor on the 12th to give him my final decision about whether I want the surgery or not. And if i do, I hope and pray mine is a success but then I read so many posts saying it didn't help them. My NS says that he believes we should head it off before it becomes debilitating b/c within the last year, I have rapidly gotten worse. I don't have the life threatening symptoms right now...no seizures, no fainting, etc. BUT I do have tremors throughout my body regularly and extreme dizzy spells so are these signs that those things are coming. I have daily headaches with neck pain (its awful) and tingling. I have started stuttering alot and can't remember where I am over half the time. I blurt out the wrong words often and can't walk more than a few minutes at a time without completely giving out. These are just of the few things going on, while not life threatening they are VERY life altering. Would you tend to agree with the doctor in doing the surgery now b4 we pass the point of no return or what?
We live in South Africa an my sister was diagnosed a week or so ago with chiari. Her hernia is 8mm. She has most of the above mentioned symptoms and we can see her deteriorating almost daily. Where can we find a chiari specialist in SA?
My chiari doesn’t seem as bad as many of you. But it has altered my life nonetheless. After 4 months of continual headache and head pressure, back pain, etc., etc., I opted for the decompression. I took the risk. I wanted to nip it in the bud. Did not want to watch my symptoms continue to worsen. I am 9 weeks post-op now. There were times I doubted whether I did the right thing since I wasn’t progressing as well as I thought I should. Four weeks ago, I found out I also have POTS. In retrospect, I now realize my POTS symptoms began about 1-2 weeks after my chiari symptoms kicked in. Since my surgery, I no longer have the continual headache or pressure or back pain. That much is better. I do have a large numb area on my scalp. It is beginning to get some feeling back, albeit sore to the touch. I have had a couple migraines since surgery. Now it seems my main problem is POTS. In a way I wish I had known about the POTS prior to surgery. I think what I might have done differently is to explore other conditions commonly associated with chiari and rule those out prior to the decompression. Just my two cents. I am now trying to determine the cause of my POTS. Good luck to you. It’s a decision each must make for herself. Overall, I am glad I had the surgery.
I am so terribly sorry. I am in tears right not but cannot bring myself to tell you yes have surgery. I have honestly told two Chiarians to actually have surgery. I will ask you some questions that will help you to decide.
Do you trust your NS and his opinion? Did you ever feel a need to get a 2nd opinion?
I think you are having serious symptoms. You call them VERY Life Altering. Can you live with those symptoms?
Do you know CM can get worse quickly without any outward symptom changes?
Did your NS tell you paralysis and even death is a possibility of not treating a major CSF blockage or large herniation, Syringomyelia and a host of other complications, including damaging your Vagus Nerve which has many lasting possibilities?
Is your speech problem while you are having headaches? I have Complicated Migraines and have been told they may lead to a stroke. Has your NS gone over your speech and headache concerns?
What does your loved ones think is the right path for you?
What does your gut tell you to do? It is never wrong.
Some Chiarians do really well with Decompression Surgery. Just please ask yourself these questions. I only want what is best for you and I think you have already made your decision but are scared and that is normal. Please do what is best for you. There is life post Chiari decompression surgery. It may not be perfect but we make it the best we can regardless of our post op symptoms. I Love and feel joy and happiness and am a productive, mostly optimistic , positive person. Even after my bad situation. That is just me...an optimists optimist. This is not easy. All I can promise you is no matter your decision you will not be alone.
There is a Success Story Group under Groups. That is great...I am also sending out a broadcast requesting Positive Stories.I just shared my story. It's not pretty, but it's what I have to work and live with.
Thank you for your thoughts on this. I trust my NS as much as you can. He is a great doctor and although is not a specialist in Chiari he did training in NY at the Chiari Institute. He told me the doctor he studied under but of course I couldn't tell you who for the life of me lol. Living with these symptoms, yes if I want to go to a less hectic job and/or stay home all the time and do nothing. I don't like going places and hate ppl coming over, I would just rather be to myself 24/7. My computer friends is it, I have no social life b/c it is just too stressful. But that's fine too b/c I enjoy solitude lol.
My symptoms have worsened in the last year dramatically while my NL was treating me for Ibuprofen addiction and Migraines. He told me nothing was wrong even after seeing my first MRI, told me none of these things could cause headaches :-/ (Chiari and a 1 cm penial cyst - noooo they don't cause headaches) So that is when I started researching and asking around and found the NS I have now. My MD referred me b/c she knew I was getting worse and here I am now.
He did NOT tell me paralysis or death was an option but he did tell me that I would almost 90% for sure end up having it done eventually but that it was up to me if I wanted to do it now or wait b/c it is my body and only I know how I feel. I loved hearing that from him, most treat you like you are stupid and like you don't know your own body.
My speech problem is all the time, not just with the major type headaches (Migraines). I say some of the weirdest things sometimes but my family knows I can't help myself and we just laugh it off, what else can you do right? One night I asked my DH if he put the puppy in the fridge. (I meant BBQ) I knew what I was saying but couldn't get it out even after 3 or 4 times. I just said nevermind, just go put it in the fridge HA. The stuttering is just annoying.
My family just wants me to do what I feel I need to do and are behind me 100%.
I will be talking more with you all and appreciate everyone giving your input and telling your stories.
TracyZ said:
Hi Frustrated,
I am so terribly sorry. I am in tears right not but cannot bring myself to tell you yes have surgery. I have honestly told two Chiarians to actually have surgery. I will ask you some questions that will help you to decide.
Do you trust your NS and his opinion? Did you ever feel a need to get a 2nd opinion?
I think you are having serious symptoms. You call them VERY Life Altering. Can you live with those symptoms?
Do you know CM can get worse quickly without any outward symptom changes?
Did your NS tell you paralysis and even death is a possibility of not treating a major CSF blockage or large herniation, Syringomyelia and a host of other complications, including damaging your Vagus Nerve which has many lasting possibilities?
Is your speech problem while you are having headaches? I have Complicated Migraines and have been told they may lead to a stroke. Has your NS gone over your speech and headache concerns?
What does your loved ones think is the right path for you?
What does your gut tell you to do? It is never wrong.
Some Chiarians do really well with Decompression Surgery. Just please ask yourself these questions. I only want what is best for you and I think you have already made your decision but are scared and that is normal. Please do what is best for you. There is life post Chiari decompression surgery. It may not be perfect but we make it the best we can regardless of our post op symptoms. I Love and feel joy and happiness and am a productive, mostly optimistic , positive person. Even after my bad situation. That is just me...an optimists optimist. This is not easy. All I can promise you is no matter your decision you will not be alone.
There is a Success Story Group under Groups. That is great...I am also sending out a broadcast requesting Positive Stories.I just shared my story. It's not pretty, but it's what I have to work and live with.
