Hi and welcome to the Chiari forum.
Yes, there are Drs out there that do not have a clue about this condition and related conditions.
One of them Syringomyelia, a syrinx forms in the spinal cord, left untreated this condition can lead to paralysis and perm nerve damage.
Many of us have surgery to prevent a syrinx from forming....I know I did, all we need is an obstruction of CSF flow and symptoms .
All of these surgeries are elective unless of course u end up in a life threatening situation and it is done very quickly.
Far too many have had emergency surgery and many of them have had set backs,....and u do not get to select the Dr and make sure they do know Chiari or if they are well experienced, u have to take whom u get.
Many times those with a syrinx may not experience a lot of pain as the syrinx stops the signals from getting to the brain....so it is not an indication all is well....and IMHO is a time for more testing.
My surgery will be 5yrs ago this May, and I am doing so much better.
We are all diff and I can say I was scared too, but also knew I had to do something....
If u feel u may have gotten a mis-DX do get copies of ur MRI and the report and get another opinion.
We do have a list of Drs for u to use to research Drs....the list was compiled by the members of Drs they have been to, treated by and liked.....it is not however a referral nor an endorsement for ne Dr on the list.
If u have ne questions about related conditions u need to rule out as well....let us know.
Hi, yes i know exactly how you are feeling. I havent been to a neurologist yet or neurosurgeon. I just have the mri and start of some symptoms. I am 42 and went my entire life clueless and not worrying about this. Now i worry what this will bring for my future. As i go thru each day the shock is wearing off and i am learning to except what i have. And although my life may change a bit i am still alive and can enjoy a life with my kids. I still dont know if i will need surgery but you better believe i am gonna fight for the life i have. Am i scared.....oh heck yah...who wants surgery. But get yourself a good neurosurgeon that you trust. Doesnt sound like you really trusted those who were going to do it. My girlfriend also had this and said life will be stressful until you get all the facts and make educated decisions with a doc you trust. I also have a strong faith and know He is there when i get really nervous. I pray for you and all of our fellow chiarians as we llearn and grow from all of this. Good luck and keep us posted
I too was fine but one day my symptoms started to progress... I haven't had the surgery either.... I too went my whole childhood without knowing but was Dx'd at 24 Im now 32 up until 2 years ago. I had no idea that some of the stuff I thought was normal turns out are symptoms... my symptoms got real bad about 15 months ago to the point to where they (my Dr's) took me off work. I understand ur frustrations Fully!!!! Hope that you can find some answers and figure out some way to get at least back to some normalcy! Prayers go out to u!!!
I know your frustrated. My 26 years on this earth and I would never wish this upon anyone. I was dxed in January of this year, as I continue to learn about Chiari and speaking to many (7) neurologist and neurosurgeons, I finally found a Dr I think I am comfortable with, though I have yet to see him, he's working with me and my PCP, so when I do go to him I will have done all testing required as well as the reports so he can see them for his self. The things we adjust our bodies to because we have lived with these symptoms all our lives really turn out to be symptoms caused by Chiari. I personally use to trip over my feet or would run into walls or objects that I thought I cleared but we laughed at and I was known ad clumsy. My symptoms started when I was 15 and learning how to free dive. But I never got a DX until I was 26. I started to have bad migraines at that point and the drs and er would tell me was pressing my body to it limits, that I needed to relax. Not once did they stop or think hey let's actually do some testing and find out. I try to not let this control my life. At first I was depressed but now I'm leaving it all in Gods hands. I try to live my life normally. I ride my horse when its pretty out, I do climb mountains when I go home, I play with my nieces and nephews. I plan to scuba dive this summer off the coast of Bahamas. I try to live my life as carefree as before, though some days I must take time to recover as I did too much the day before. But other than that I try my best to not let this get to me at all. No I have yet to have surgery though I might in the next year or so. I try my best to keep my head stable as much as possible. I use a pillow I made from crocheting that seems to help relief pressure on my neck and lower back I love it. But any ways some of us do live normal lives as much as possible. I hope your journey has success! I hope u get some normalcy back into your life! My thoughts and prayers go out to you!
I've been living with this condition for over 28 years now.
There is more for your body to find out about this condition as time progresses.
The one thing you cannot do ..is to fall prey of panic attacks, from seeing how your body
is feeling and acting, as well.
doctors and the medical community, 'pretend' they know about this condition, but they don't...
I was crushed by a 2000 pound tree back in 1984, a year later my life started to go downhill..
Too many symptoms to list...but the one present feelingis FEAR...
I have not found any 'respectable' relief, except oxycodon for the pain..but beyond that..I been out on my own..
sometimes an occasional doctor asks me about this condition, but they dont get to be experts just by acknowledging the condition...anyways...just don't be affraid...always surround yourself with your loved ones and feel open to receive their feelings for you..
best of luck...
Hi and welcome to the Chiari forum.
It is true we can not let fear drive us...but we also can not deny there is help out there...not all of it proper help that is for sure, so we do need to educate ourselves so we can identify when we have found a true Chiari specialist...
There is a very well respected Chiari specialist in CO. ....see our Drs list and do some research....
Many times it is the underlying related conditions that can affect the outcome of this surgery.....so having a Dr that will do testing for them and take precautions is one that will be able to minimize post op issues.
May I ask, was your condition considered congenital or acquired?...
I would have had the surgery the day my Surgeon suggested it if it was possible, turned out I had to wait 5 weeks.
It's better to have the surgery BEFORE your symptoms get worse, worsening symptoms are an indicator of damage being done to your nervous system.
I woke up in recovery feeling like I had brand-new legs. No pain, no half-cramping feeling in my calf muscles. Haven't had a headache since the surgery either ( I'm just 9 days post-op).
Yes, you need to find a surgeon who knows this surgery and has done it in the past. Ask him questions about his experience.
Also know that the horror stories are a small, yet vocal minority of the result of surgery. Underlying conditions can affect the outcome to a large extent. Basically healthy folks will do better in most cases, while folks with Lupus, diabetes, or other conditions may not heal as well. I just flat out asked my surgeon what percentage of his chiari patients developed CSF leaks, and he explained exactly how many, and the various reasons why some folks develop leaks. I felt relieved that he was upfront and honest about the risks involved.
In response to congenital; I had a dialog with my doctor about this; she stated that it was a somewhat hereditary condition; while I argued about the creation of my syrinx caused by the pressure created by the tree branch that fell on my back that many years ago (-but i'm not a doctor, so I suppose she has more resources in this case). But I also told her about one underlying condition that might be a clue to a possible reason for the formation of Siringomielya in my life...When I was a baby, my mom and everybody used to laugh at me because " I had a WOBBLY head..!! and my dad used to 'wrap some sticks (like a little wooden fence) around my body so he could actually see my face and be "able to recognize if I was actually his son"..!! (joke)...And so, the 'wobbly head' condition, was diagnosed by a local doctor as "lack of strength" on the neck muscles, but that was 1959..I reason that so much movement would possibly cause 'other' effects on the body at such tender age...and, in addition, I have an extensive family, but I turned out to be the 'weird one'..nobody in my family has this type of problems...I'm working on going out on the streets to announce this horrible condition, that it seems that not even the medical community know about it..so yes..!! I'm very pro-active about SM..glad you can share.
Bobble head is one of the descriptions that one Dr used to describe CCI which is cervical cranial instability....(?) anyway many with Chiari can also have Ehlers-Danlos*....and if your syrinx is congenital, then it may be possible for you to have EDS* as well.
Did you have a ruling on Chiari? or any other related condition like EDS?
Thanks for the response;..no..I've never heard that term before, and I've just wikipededia the name, and does not 'feel' familiar, besides, no doctor has ever mentioned that name to me...I was always very physically active until I became 28 y/o..I was a 'goalie' for a soccer team and still when I began to feel 'weird' at the start of SM, I was a very active and normal person..I worked as a civil engineer assistant for 26 years in construction sites until 5 years ago, my legs and my arms lost strength and began to hurt immensely, besides loosing grip and coordination, began to feel 'drunk' and dizzy, and last year I developed constant 'blackouts' and lately going through amazing stress and depression, maybe my own body is aware of the so many screwed up feelings and sensations and is reacting with max anxiety..too much.....thanks
Hello; sincere greetings...A lot of people had surgery to stop or reduce the CSF (cerebro-spinal- fluid) from flowing into the spinal cord at around the base of the skull; where is mostly the area that is compressed and that is where most of the syrinxes are formed in the case of SM (Syringomyelia) Chiari-1 (I'm no doctor) and I'm speaking from personal experience only, but in my case, my original neurosurgeon advised me that it was a 50/50 chance to get well after the surgery, that was back in 1996. In trying to acquire a second opinion; back in 2008, I ended up in a nightmare..I was referred to see a "group" of neurosurgeons, who run a very respectful very corporate looking tortilla making machine'..where patients come in one after the other and are processed the same day..They figured, after reviewing my medical records, that "I was not suffering from no- Syringo-whatever dysfunction..!! They said that the nagging pain and lack of grip on my right arm was a case of a "PINCHED NERVE" in my right elbow.. (And I believed it...!) I was happy to hear after all, that I actually did not have an "ugly neurological health problem" only found on sci-fi stories. The main doctor said.."it's better to operate you arm instead of your brain"...After the surgery, the pain became unbearable in my right arm..About a month after, I went back to the tortilla-making-corporate-looking building in Surprise, Arizona and after being checked out by the neurosurgeon; he sent me so see a sinister looking character of a woman, dressed in a pretty straight looking executive dress at the office next door, and she said.."We are very sorry, but we only give a 30 day warranty in our work..."..I became angry, because my right arm had become a painful dead weight object that I had to carry around for the rest of my life, and still, the main problem of SM, was never addressed..!! So I told the woman.."Listen, I'm not a beat up old car that you just take to the mechanic to have the brake drums and rotors replaced..!! I brought you my arm and you guys destroyed it..!! So she just said..I'm sorry...Also that hospital turned around and charged the medical costs to the company I worked for at the time, as being a 'workmen's comp' case, which it was total BS...The point I want to make is; beware...since this type of surgery is well up there in the $$$$.. there are hospitals and snake oils salespeople, offering free cruises and vacation packages after your surgery, but in reality; they totally don't know a lot about SM>
Not all Drs are specialists on this condition....and it is best to search one out....
Many of us take what a Dr tells us as the facts when they can be wrong....I went to Drs for yrs and was given all sorts of DX'd and reasons for why I felt as I did, but it was not until II got to a true specialist after more testing did I get a DX that made more sense and a treatment that has made a huge difference,...
Many of us have lead "normal " lives and worked at physical jobs...it is possible to work and be active with this condition for a long time, but once symptoms start to worsen, it is then that we are forced to look beyond the Drs that do not give credence to our DX.
In a world of SM; and so little known about it, the only source you can rely on for further medical assistance is the one provided by references from people who've actually had a high percentage of success on their operation. Can you provide the actual name (or names) of an SM specialist neurologist..? I'll give you the case; Recently I was invited by a local SM support group to be part of their cabinet. When I received literature from them informing me about SM,, (basic knowledge), there were more advertisements for "free MRI/CT scans".."free hospital stay".."a trip to the Bahamas"..IF you get your surgery done with them...
There were more 'free gimmick" advertised to get your surgery in their hospitals, than free home remedies on how to aleviate your pain and all the 'weird' sensations created in your body by SM. I called one of their hospitals 'just to test the waters', and there was always the 'hidden thruth'
..All advertisement led me to the same hospital...just a bunch of middle man creating false advertisements for the same hospital in Vicksburg, Miss...Please, don't think I'm trying to bash on the medical community..I admire my nurses and doctors..! ! and I have always been humble to be at their care, in hopes to find relief for this horrible condition...the only proof there is..is that there might be a good faith for them to try to help you...but most of them, do not know "specifics about SM" and that is how you end up getting burned, and once burned, is a totally different ball game, also, I'm not a 'divergent' who is just trying to 'stir things up', is very 'disheartening' to tell your doctor of the new findings or new sensations from your condition, just to hear from him say..."Is just part of your condition" but he does not tell you how to find relief.. In addition, most times in these forums, people suffering from SM, hardly speak about, what sensations do you feel with this condition and how you find relief, at least temporarily from them..I don't know your name and I don't care what you name is really, so why can't we speak about the reasons to find relief from SM, instead filling spaces with comments...?
Such as:...I'm a 56 years old male, and my prostate goes off acting out without actually having sexual arousement at the time...that thing begins to
work and does not stop after over 40 times..!! when a normal operating prostate only pumps at the moment of extasy and for 8 or 10 times at the most...An that is very frightening..!..or something like: I cannot drive anymore, because I suffer from black outs, but I also cannot ride in a car because every little bump on the road, triggers pain sensations on my arms or chest...Why cant we really speak about 'these' sensations created by such a terrible condition..maybe somebody is taking notes and is working to help out us all....Believe me..I'm not ventilating and I appreciate your input on this..but just remember..All this is not about me; there is a bunch of little ones who are suffering from all this and they cannot voice their feelings or concerns and how they; in an evolving world, "feel different" than others as they are growing up...we need to help them. thank you
WOW....that is scary....I would deff run from all that stuff...free is never free.....
I totally understand your frustration.....and not having a syrinx I can not offer insight from a personal experience....but I do know that the best Drs to see for this condition are those that also treat Chiari as they are related conditions and one can develop as a result of the other.....
We do have a few people on here with a syrinx and I will ask one to chat with you, as they can offer insight on a personal level and is also a male and may be able to comment...
The frustration you feel is very similar to those that we also deal with trying to find a true specialist and most do not list the many symptoms we suffer from hence we have the the unofficial list of symptoms thread....
Thank you selmaS...I'm glad you understand and hope to link up with somebody with related symptoms. I will definitely hang around this forum.
And I will urge fellow members to be 'specific' about their every feeling and symptom they go through with this thing..no matter how personal might sound..there's no shame in being sick; being honest and true will crack the doors faster than being proud and quiet.
There is relief around the next corner...together; we can make the turn.....!!
thank you and with all symphaty and admiration for anybody who is a Sm and Chiari patient; imagine the medical community still trying to understand this craziness; how do we expect to get common folk to understand us...? anyway..be brave, stay strong.
Thanks you for the kind words...and you are right , since it is hard to locate Drs that understand these conditions we can not expect family and friends to understand them....
It takes time and patience to get thru this journey.....and there is a light at the end of the tunnel.....
The more awareness we can get out on these conditions the better we ALL will be....September is Chiari awareness month and walks are done all over...getting involved is one way we can help with awareness.
Kudos to the awareness walkers..!! For patients who can actually walk, my hat is off to all of them...for the rest of us; we just sit on the sidelines cheering and stirring up the crowds...!! Hoorrraa...!!
Allow me to start a thread called 'timeline' if it's not too scary to read for 'newly' diagnosed SM/Chiari and patients already versed in this dysfunction and with the intention to make non-patients of SM/Chiari aware of 'how in general' we; as sufferers of said dysfunctions, have to encounter on a daily basis... Also be aware that; as things stand right now, in the legal system of ours, SYRINGOMYELIA and CHIARI-I..are not considered DISABLING conditions, according to the BLUE BOOK written by The Department of Social Security, which in many regards, adds up to the aggravation of not being able to work and still be able to lead a life, most likely depending from the income of "whomever feels sorry for us" or somebody genuine interested in our well-being, be it a wife a son or....Legislators MUST understand, that when you cannot provide for yourself; you suddenly are at your own mercy, and basically forcing you to become 'panhandlers', and not by choice, but by default from laws established created by pure ignorance, and ignorance in the sense of 'them' (whoever makes the laws) not knowing about both of these neurological problems, the same as our families not knowing or understanding our condition..(I'm not a politician and I'm not a doctor) I'm speaking from personal experience..According to SS, you must prove that you are crazy (or) mentally retarded to be able to collect disability benefits, because, if you can see; you can can still do some type of work, regardless of how many years you worked during your life or how many 'disability certificates' you have collected from your doctors.
Say a person with a yearly 150k income suddenly develops SM, try guessing how is life would be after...? It takes from me the help of my wife and 1/2 hour of time to be able to get out of bed in the morning, just to be able to flex my body from the overnight stiffness...!!
1984-I was crushed by a large tree branch, friend's yard cleanup accident
1985-Tingling and numbness right arm
1987-Pressure and pain on chest from coughing, sneezing, crouching.
1992-Originally diagnosed with Syringomyelia /Chiari-1 (after 4 years of extensive studies by different doctors, spinal taps (*), Ct scans and MRI studies) ****BEWARE..!!! Spinal tap is a horrible and painful procedure, and not REQUIRED to be able to SPOT a syrinx in the spinal cord..they can see a syrinx with a simple MRI...!!!..please say NO to spinal taps..!!!!
1994-Developed extensive panic attacks, became disabled with FEAR
1996-Young doctor prescribes PROZAC ending 2 year panic attack ordeal
1998-Doctor misdiagnoses my neurological condition and prescribes imipramine for depression, nearly killing me.
2000-Became weary and only took Tylenol for pain an Bengay ointments to aleviate numbness and pain on both right arm and leg.
2002-Began training in a different branch of my work, lack of strength all extremities.
2004-Lost important job due to frequent visits to hospital and being absent from job.
2005-Developed vertigo, disorientation and pain both legs.Had to 'pretend' I was okay to be able to work, even If I walked 'sideways' at the workplace..co-workers began to label me as 'retarded', because I could not retain information and my attention was not with me..it was in 'lulu land'.
2008-Was again misdiagnosed and my right arm was destroyed with a gone bad surgery diagnosed as 'pinched nerve condition' on my right elbow.
Yes, I am all to well aware of the Blue Book and that Syringomyelia and Chiari not being on the list....I am sitting unemployed for 5 plus yrs now and no income as I know I do not have enuff DX'd to get disability approved....
It is scary as so many of us do have a similar looking timeline as far as trying to get a proper DX and it not actually happening.....
At this point post op I think I could walk, if there was one here...when there was one, I couldn't have made it...Murphys law.
...I'm very sorry to hear about your unemployment...
As I took off in a hurry last night, I could not finish my timeline; and the unemployment part is the last part of that...which I'm also in the same boat..
5 years without income...I been licking candy wrappers from the sidewalks, because I cannot afford to buy one...The worst part is that in better times; and because you were able and physically fit to provide for yourself; I'm sure you saw the good side of this life, as I did, and that; in itself, creates a world of pressure in somebodys life, even without having to deal with something like SM..sorry to heard that..
Timeline (continued) for anybody interested in reading the developments of how SM, has slowly been deteriorating my life.. (and I love my life, just as much as anybody, but still I'm not willing to give up on this...)
2009-I was removed from engineering work, because I could not retain technical information and specifics on engineering. (work I have performed for 28 years...)
2010-Spend one year in school training to become Auto mechanic, graduated and got hired. Had to bribe young mechanics in the shop with free lunches to help me remove parts from cars, because I had no strenght on my arms and my legs were hurting a lot. Manager figured I was too old and troubled with medical issues and gave me the door after one month.
2011-I got smart and I went to truck driving school and proudly received my CDL. Sitting the whole day driving a truck, did not seem like a big deal, but it was...The box, continually crossed the traffic lanes as I drove long ways, because of lack of coordination and strength in my arms. I loved that job, and again I was removed from job for safety reasons after 3 months on the job.
2012-A simple act of picking up a piece of paper from the floor became a great deal for my health and I've saw an incredible amount of new electrical dysfunctions in my body caused by SM..very frightening stuff...Waking up without being awake and in a daze for over an hour, was very frightening..!! (and nobody know why this happens) while all your loved ones look until you regain the complete conscious level that allows you to respond to commands and other people talking to you...a 'limbo state'..a 'mortem condition'..not good.
2013-The bank takes my only house away and my truck gets repoed, me and my family go on homeless until mid next year..no help around.
A bunch of 'pretty little colored' papers printed all over at public assistance offices, welfare office, public libraries, who promise free compassionate counsel and resources to help you when you get in this situation and phone numbers printed by the millions that only take you to a disconnected line or a stupid robot, just blabbering B.S....Bad, bad system...!!
2014-We find charity in a mid-decent place to stay by the efforts of my wife and my kidd. who; by my code, never had the need to work, because I wanted to provide for them..(my choice; proved to be wrong, but that is the way it went).They turned out to be my heroes in this story.
Aug-20-2012 Just got through with another doctor who suspended my pain medication, because I refused to jump into a swimming pool to begin a physical therapy program....(wtf..?) I can hardly move without getting a jolt of electrical pain in my chest and my extremities and suffocates me with pain..!!! How in the name of God these people make you do things without previously consulting the ramifications of this crazy condition...!!??SM/Chiari, both conditions totally misunderstood.
Presently typing this with my index finger, bouncing around doctors, who can't help to look at me like a strange little animal from another planet, when I mention the word SYRINGOMYELIA....
--end--- thanks for reading
I live my life as normal as possible. As for many years I haven't been able to hold a regular job since I have headaches for two weeks out of every month. No job will let me off every month for two weeks do to my debilitating headaches. So I turned to one thing I knew how to do that allowed me to rest in between each show. That was rodeoing, horse jumping, horse dancing, and show competition. It was until this spring when I was training was when I had to give that up too. Due to the fact my horse was spooked by a family of black snacks and he threw me. I didn't want to give up my only income and have my loved ones take care of me but it is a must. I'm going to try to go back to school in finish my degrees in Radiology Tech and Vet Tech. That way I will be doing something worthwhile. I do house cleaning when I'm up to it. I take care of my animals and I take care of my horse but i might not be able to ride him again until next year unless I have surgery. But other than that I try to live life as normal as I can. You must not let this not beat you. You must conquer it. Though some days your body will need to rest. But enjoy the good days that you have. As they are worth it.
Hello and Good Morning,
I am going to let you know it is normal to be scared. This was scary to me and I was in the military and been to a few conflicts. I had several issue and symptoms that I put off as old age. I looked back after doing research it was Chiari for a long time. What caused mine was I thought having a heart attack while driving. But turned out to be Bells Palsey. The did a CT scan and found it and made me a appointment with a NS at UT hospital. You can read my journal entry titled “MY Surgery and after”. It will tell you what I went through. Yes you can live a normal life; I may have to do things a little different. I am not able to do the rides anymore but I am watching my grand baby do them for me. For you to get off the table means you did not trust the doctors. Find one that you are comfortable with and understands you. Until then it may be a little scary but you are never alone, you have me and everyone else on this forum beside you.
The longer you wait the more nerve damage you will incur and the less likely you are to recover what you have already lost. When your brain leaks in around your brain stem the damage to your nerves can be extreme. The brain stem is in control of all brain activity including telling your body to breath – I still wake up gasping for air and notice that when I concentrate on something really hard I stop breathing. Trying to find a comfortable position on my pillow at night is very difficult…needless to say I do not sleep well. I still have most of the symptoms I had before the surgery and of course fibromyalgia (damaged nerves). My neck and shoulders hurt most of the time. I felt as if my head was too heavy for my neck before the surgery and I feel like my throat is closing when I lay down. By the time I was diagnosed my Doctor said “Have the surgery or die.” The one thing I am grateful for is the lack of pressure on my brain. I do it all again in a heartbeat – I’m a 60 yr. old Great Grandmother 5 months out from surgery and thankful I can watch all of my grandchildren and great grandchildren grow into wonderful unique people. The headaches, aches and pain, and depression are all controllable. Having my life is a blessing, God sent me to the right people at the right time. You have been diagnosed there are thousands of others who are praying for that right now. Please don’t wait, have the surgery now before you run the risk and end up like me – still living with everything but the pressure on the brain.
My AC is at almost 9cm, has worsened over few years. I have not had an MRI Over 3 yrs. no surgery. I feel wonderful in comparison to my past. I get better, I work out eat right (no acidic foods, no preservatives, organic honey and maple syrup, no packaged foods, do Ltd organic red meats, organic poultry & wild caught
Seafood; no bad fats,; do coconut milk; whole grains yes-no to whole wheat; this diet is really easy & quick to adjust to. I try not to over do it. Work FT, which includes travel. I mtn bike ride, no longer high intensity, at low-med. Blessings and strength to you!
My wife had the surgery back in 2009. Pre surgery life sucked. Constant pain lethal doses of medications and so on and so on... she was 25 years old and on disability. Post surgery she came off all the meds graduated college and working full time in the medical field. Life was good then recently she has developed very low blood pressure 57/35 and started passing out when standing this leading to seizure like activity. She has spent most of July in and out of the hospital. As I type this response we are back in the ER after finding her passed out sitting on the side of the bed having a seizure. She's 38 now use to work out and run in 5ks. Her doctor who released her last Thursday said this was just normal. I wonder if when he can't breathe because my hands are around his neck and I tell him its normal if he will agree? Just feeling the frustration that this illness brings to the loved ones of those who suffer. Is this Chiari malformation associated ? We dont know