Just back from my docs, and wat he tld me confused me completely so im hopen ye can help. As ye prob know by now i have chiara and a syrinx. When i saw my nerologist he told me it was a life long condition even after surgery ,at the moment they are not goin to touch the syrinx. But after visting my family doc he told me i would be perfectly fine and healty in 3 to 6 months no more problems and thats why i coudnt get disability. Im so confused and getten fed up with all the docs at this stage im been told so many diff things i donno were i am. Is chiara a life long illness even after surgery??? And is my syrinx one, dont get me wrong its not that i want it to be one i just wanna know what im up against plz help.
I’m sorry that you’ve been given so much conflicting information:( Are your doctors experienced with Chiari? There is currently no cure for Chiari. The decompression surgery is a treatment, not a cure. Syrinxes usually shrink after the surgery, but sometimes a shunt is needed too. Even if the syrinx shrinks, you may still have pain and other symptoms from it, because permanent damage could have already been done. There is no way your primary care doctor can know if you’ll be symptom free in 3-6 months. It doesn’t sound like he knows much about Chiari and syrinxes. My PCP downplays this condition too. If you need to go on Disability, have your NL or NS help you instead. I hope this helps.
You’re doctor is misinformed. Completely. You can get disability for syrinx’. It’s in the disability bluebook. You can go to ssi.gov print it out and show your doctor, they are completely stupid for not even researching their patients illness. Good luck and god bless. I’m thankful all my doctors have understood my illness and how its different for everyone.
-Rexy
I agree with Crystal. I was able to return to work for about 8 months, post Chiari decompression and fusion (skull to C-3) surgery. I did well for awhile. But then I started having high intercranial pressure which required a lumbar shunt surgery. Not all people require this, but some do. It is wrong for any doctor to promise that you will be symptom free. Much is yet to be learned and each person is different. I would work with the NS and have a discussion about disability.
Ironically I live in Limerick Pennsylvania here in the States (Our two school systems are sister partners). Unfortunately, your experiencing something all too common when it comes to rare disorders and physicians who are not experts in them. Specifically I mean your family practice physician. Not to be too harsh, but I wouldn't listen to what a family practice person says about a rare neurological disorder, or at least take it with a grain of salt and always default to what the expert says. A syrinx is formed inside the neural fibers of your spine due to poor circulation a flow of Cerebrospinal fluid, which is a thick liquid manufactured in your brain that baths both your brain and spinal chord in nutrients, helps remove waste products and provides some shock absorption as well. Your Chiari's malformation blocks the flow of this vital liquid, not allowing it to flow properly or in sufficient enough amounts. While the actual mechanical reasons why a syrinx (cyst) forms aren't actually well known, it's quite common that such cysts form in the spinal chord with Chiari patients. The result of this cyst is physical pressure on the neural fibers inside the spine, which causes pain, paralysis (partial or full depending on the size of the cyst/syrinx) and weakness distal to the cyst (or parts of your body "below" where the cyst has formed.
Surgery to correct the root cause of the cyst/syrinx is the only viable cure in all the literature out there on the topic. Sometimes, with surgery, and if a syrinx is large enough, the surgeon will place a shunt (drain) to help the build up of fluid in the cyst drain away. But, to date there are no medications that cure a syrinx and even pain management meds treat only the symptoms of the syrinx, not get rid of it.
By life-long your neurologist "may" (not speaking for him/her) meant that even if they operate on the Chirari and stop the original cause of the syrinx, and that causes the syrinx to drain away, some percentage of the damage to the spinal chord done by the pressure from the syrinx MAY be permanent. To say that you would be "perfectly fine and healthy in 3-6 months" - without any surgery - is completely irresponsible and unrealistic. To say that you would be "perfectly fine and healthy in 3-6 months - AFTER surgery - is not as unrealistic but as many as 60% of patients who have had surgery still suffer lasting effects and do not achieve complete recovery.
I would ask your family practice physician how many Chiari's malformation patients they have had, or are those opinions based on reading they have done, not real experience. Ideally the neurosurgeon is the one to listen to as the expert.
It's unfortunate that your doctor told you these things. I am post Chiari with Syrinx surgery 3 years now. I was 46 when I was diagnosed and I was having severe symptoms from falling to back aches, headaches, dizziness, etc. I was considered a stage 3 level. My doctor didn't even know how to pronounce the name Chiari (he asked what a chiari was using the ch sound and not the "K" sound), so he was no help with me getting disability. I was turned down 3 times and finally had to hire a lawyer which took another 18 months. It is considered a disability, there is NO cure, and depending how large the syrinx is and the level of your symptoms a surgery is supposed to help. Mine didn't. After 3 years I suffer now from fibromyalgia and rhematoid arthritis. I can barely walk, I use a cane, me speech has become slurry, my memory is going, I'm in pain every moment of every day. I can't sit longer than one hour without having to stand and I can't stand more than 20 minutes. My doctors have me on morphine because of the severity of my condition. Last June I fell and hit my head and had a concussion for one week, it shifted my brain just enough for another pocket of fluid to start building up on the brain again. My neurosurgeons told me there is nothing more they can do except make me comfortable. My daughter just moved in with me today to help take care of me. I would get a second opinion from a neurosurgeon that specializes in Chiarimalformation. As for your doctor, he can go on web MD and see how severe the symptoms are with this disease, there are videos on youtube that have detailed pictures of a normal brain and one with a syrinx, there is much out there for education and knowledge of this disease. I know every case is different, and not everyone's are as severe as mine. I wish you the very best of luck. Please keep us posted on your outcome. Lovingly, Antoinette
I'm sorry that you've been given so much conflicting information:( Are your doctors experienced with Chiari? There is currently no cure for Chiari. The decompression surgery is a treatment, not a cure. Syrinxes usually shrink after the surgery, but sometimes a shunt is needed too. Even if the syrinx shrinks, you may still have pain and other symptoms from it, because permanent damage could have already been done. There is no way your primary care doctor can know if you'll be symptom free in 3-6 months. It doesn't sound like he knows much about Chiari and syrinxes. My PCP downplays this condition too. If you need to go on Disability, have your NL or NS help you instead. I hope this helps.
Thanks so much for ur replys i am the first one to walk thru my docs doors with this condition and i think ye are all rite he hasnt a clue im startin to wonder if im really in safe hands or not my nerologist is great really nice and easy to talk to but i still feel theres alot i dont know and ive surgery in a week. ill def have a chat with my nerosurgeon about the disability be4 my op and get all the answers. Ive so much pain in my back and diff kinds of symptoms but i feel like my doc isnt takin me seriously ive been diaganoised with ocd and to be honest i blame all the stress sorry i went off on a rant there thank u guys i dnt feel so confused any more
Your family doctor probably doesn't know squat about chiari. My granddaughter's pediatrician didn't even know what it was. That's why she went so long undiagnosed. You need to talk to your neurosurgeon to get an answer about the disability. My granddaughter now 8 had the surgery and it did relieve some of her symptoms and at least she is not paralyzed or dead, but she still has problems and probably always will. She is still trying to learn to write and to read. If she does anything like getting on a trampoline, she starts having problems with her neck. Get another opinion.
1st - don't let any doc tell you that you can't get disability (they aren't in your body); 2nd - any doc that is not understanding your situation is not work you time (as far as I'm concerned). They don't necessarily have to be nice, have a good bedside manner or such, but they need to 'get it'.
If a Chiari specialist said that Chiari is life-long - then it is life long. Normal doctors just don't know what the specialists know. And, my understanding is that the information on you and your Chiari from your Chiari doc can assist in you getting disability if you decide to try. [Be forwarned that almost everyone gets denied the first time around, and then have to fill out an appeal to finally - hopefully - get disability. So, don't take it personally if you are denied the first time.]
Good luck Caroline! I'm sending you well wishes & gentle hugs,
Everyone has given you some great information. I actually saw 52 specialists before I was sent to a Neurosurgeon that actually knew what was going on. It's very hard to find neurologists , neurosurgeons and especialy PCP's that are knowledgeable on Chiari Malformations. It doesn't matter what country you are in. Chiari is a life long condition even after surgery. Unfortunetly,your syrinx won't just disappear. Please know we are here for you to help you along the way with your Chiari experience before surgery and after. I am not sure about your disability but I agree you should talk to your Neurologist or Neurosurgeon. Please don't be afraid to ask for referrals to Chiari Specialists. You are your own health advocate. I am so sorry you are not getting correct information from your Dr's. I really think you need to find someone new. Please know we are always here for you to answer questions or just to be there for you. We all understand.
Thank u for ur reply im so sorry dat u've had such a difficult journey all the symtoms that u listed i have too and no one seems to understand except everyone on here im so thankful to have ye all thanks again
Love caroline
colorpurpleilove said:
Hi Caroline,
It's unfortunate that your doctor told you these things. I am post Chiari with Syrinx surgery 3 years now. I was 46 when I was diagnosed and I was having severe symptoms from falling to back aches, headaches, dizziness, etc. I was considered a stage 3 level. My doctor didn't even know how to pronounce the name Chiari (he asked what a chiari was using the ch sound and not the "K" sound), so he was no help with me getting disability. I was turned down 3 times and finally had to hire a lawyer which took another 18 months. It is considered a disability, there is NO cure, and depending how large the syrinx is and the level of your symptoms a surgery is supposed to help. Mine didn't. After 3 years I suffer now from fibromyalgia and rhematoid arthritis. I can barely walk, I use a cane, me speech has become slurry, my memory is going, I'm in pain every moment of every day. I can't sit longer than one hour without having to stand and I can't stand more than 20 minutes. My doctors have me on morphine because of the severity of my condition. Last June I fell and hit my head and had a concussion for one week, it shifted my brain just enough for another pocket of fluid to start building up on the brain again. My neurosurgeons told me there is nothing more they can do except make me comfortable. My daughter just moved in with me today to help take care of me. I would get a second opinion from a neurosurgeon that specializes in Chiarimalformation. As for your doctor, he can go on web MD and see how severe the symptoms are with this disease, there are videos on youtube that have detailed pictures of a normal brain and one with a syrinx, there is much out there for education and knowledge of this disease. I know every case is different, and not everyone's are as severe as mine. I wish you the very best of luck. Please keep us posted on your outcome. Lovingly, Antoinette
I cannot stress enuf how much ye replyin means to me i felt so lost but now i dont im gonna talk to my neurosurgeon and nerologist nd see if i can find a chiari specialist in ireland thank ye from the bottom of my heart it means the world to me