Exercise Tips for Chiari Patients

Exercise Tips for Chiari Patients

The first and most important exercise tip for the person who has just been diagnosed with a Chiari Malformation is to keep on walking.  Walk right out of that doctor’s office, while remaining calm and relaxed. There is a possibility that you will never experience the symptoms associated with the condition.  But then, you might be one of the unlucky Chiarians who has lived a life with headaches caused by their cramped brain pushing through their lower skull and into their spinal column.  Whether you currently have symptoms or not, after getting your doctor’s okay, remember to keep on walking—or running, or dancing, just continue to exercise.  Strong scientific evidence shows that physical activity has a therapeutic effect on people with all sorts of health challenges, including those people with Chiari Malformation.  The type of exercise recommended will depend on the stage and symptoms of the Chiari patient.

Let’s Get Started:

  1. Make sure your health-care providers approve of any physical activities you are currently doing.  If you are starting a new exercise program, talk with your medical team to determine what physical activity would be best for you.
  2. If your fitness level is low, start slowly with shorter sessions (five to ten minutes).
  3. Take frequent breaks during activity if needed.
  4. Choose exercises that don’t put stress on your neck such as walking, cycling or water exercises.  These are low-impact activities, which involve large muscle groups and can be done continuously.
  5. Wear cushioned, support tennis shoes to reduce neck and cerebellum pounding.  Before purchasing your shoes, look into which shoes are specially made for walking and running.  Test the shoes in the store before buying them.
  6. Avoid sports and activities that strain your neck such as football, soccer, basketball, or tennis.
  7. Be careful of any physical activity that puts you in jeopardy of falling and creating trauma of any type.
  8. Avoid lifting more than 15 pounds when strength training or backpacking.  Heavy lifting is generally not recommended, especially if you have an associated syrinx.
  9. Listen to your body.  Stop exercising if the activity exacerbates symptoms like increasing headache pain, nausea or dizziness.
  10. Focus while exercising.  Many Chiari patients have problems with balance and coordination.  On days these symptoms seem worse, avoid crowded gyms and health clubs.
  11. If you are experiencing some numbness in your hands and feet, choose a sitting exercise such as riding an exercise bike.
  12. On some days you will not need a list of do’s and don’ts when choosing your exercises.  Headache pressure can increase with simple acts like bending over or stretching overhead.  This can happen when the cerebrospinal fluid (CSF) becomes restricted or blocked.
  13. On the days when your symptoms are worse, allow yourself to take the day off from exercise, without guilt.  Sometimes complete rest will be just what the doctor ordered!

What is Chiari Malformation? 

Chiari Malformation is a serious neurological disorder in which the lower part of the brain, the cerebellum, descends out of the skull and into the spinal column, putting pressure on both the brain and spine.  This crowding of the brain and spinal cord produces a “cork” effect which disrupts the normal flow of cerebrospinal fluid (CSF).  This condition can cause extreme headaches, neck pain, weakness, balance problems, numbness in limbs, visual disturbances, respiratory problems, trouble swallowing and speaking,  and a host of other problems.  Decompression surgery would be necessary if symptoms progress to the point of imminent nerve damage and paralysis.

This article was written by Debbie Pinjuv
January 6, 2010

 

 

80 Responses to “Exercise Tips for Chiari Patients”

  1. Virginia says:

    Hi everyone,
    I had an amazing time reading everyone’s post through this cite. I was diagnosed with chiari – malformation in 2004 right after my first surgery doctor ordered MRIS and the filling year about the same time I had another brain surgery. I was a single parent mother of a 1 year old back then. I was scared when I had to under go this surgery on my brain. It pretty much started with tingles on my left side tiny finger and went crawling on to my upper left side arm, shoulder, neck and although my left side body leaving my left side almost paralyzed. I did not experience headaches. I experienced blurry vision, weakness, tingling, numbness, and paralysis on my mouth feeling like if I had pins and needles in my body. I has taken me 11 years to recuperate from this downfall. I never lost hope to recuperate eighther. I was told to not have children because it could affect me. I have been blessed with 2 children. I am able to walk and run. At the beggining of this journey I had to be bathed, combed, fed, and family members do my daily life errands for me which I hated to depend on others I was an independent woman before this whole tragic started. Now I only experience the weakness
    and tingling throughout my arm and fingers and upper shoulder and neck I am going to therapy and using the ultrasound has helped me relax my symptoms. I’ve had read all of your post about exercising I can talk about what has helped me. I started to walk and I’ve done exercise which I can tolerate and know when to stop. Exercising helped me relax and take all that tension in my muscles it helped me sleep throughout the night. I’m glad I could relate to people that have had chiari. I always wondered if I was the only individual with Chiari. It could of helped me read all of your post when I first went through my personal experience.I wouldn’t like anyone going through this experience because it can be difficult to go through something rough like it happened to me.

  2. Sylvia says:

    Thank you Virgina. Your post helped encourage me. I was diagnosed with Chiari 30 days ago after completing an MRI due to headaches, head pressure, and dizziness. I’ve ran many half marathons and now I’m unable to run without having head pressure. I was a little discouraged after being diagnosed, but these post have encouraged me. Thank you!

  3. What are the exercises recommended for one with this condition syringomyelia am 31yrs old it started at 27 it just gets worse now am bound to a wheelchair,is there any chance for me to get better just need a list of exercises to help me at home because I don’t manage transport costs to the hospital to do my physical therapy please help me am a double opharn and have no relations am just being taken care of by the church Reverand

  4. Tameka says:

    Hi my name is Tameka I was diagnosed 90 days ago. I was scared because of no knowledge. I have always experienced quite a few symptoms. I have 10mm do u think i will need surgery. And do u think surgery is beneficial. I just want my quality of life to be back to normal. Im always in some type of pain.

  5. Demi says:

    I got diagnosed back in March after 3 months of headaches, dizziness and throbbing pressure in my head I had a ct scan and MRI. I have Chiari Malformation 1 and it is 9mm.

    I want my life to go back to normal, I am only 22 and a mother of 2. It just sucks 🙁

  6. Jodi says:

    I was diagnosed with Chiari Malformation type 1 with hydrocephalus in 2012. After 4 child births and a lifetime of doing things I probably shouldn’t have been doing. Back in the day I guess this wasn’t heard of. Life has been a roller coaster ride but I am surviving. I am a nurse and perform my job daily however I sometimes pay the price for things I do that I shouldn’t. I have opted not to have the surgery and am finding there are a lot of things I can no longer do that I enjoyed at one time. I think my biggest complaint is not being able to tolerate the heat. I love to get on the Harley but cannot wear a helmet and I love to garden which I can no longer do if it is too hot out. My face and head just throb and turn red then I begin with an uncontrollable sweat a drop in blood pressure and dizziness. This is only relieved after hours of being inside with air conditioning. I also gained about 40 lbs because of not being able to do a lot of exercise programs that I used to participate in due to extreme head pressure. I am going to the Gym this week to see if they have any recommendations at this time. My question is how many of you have had the surgery and had success?

  7. KaiMalikh says:

    Hi I was a lab tech. In 2008 I was diagnosed with Chiari. I was so scared. I would be drawing blood and my hand would open up. I would bend over to pick something up and pass out. Losing my balance and headaches. I had the surgery. I think I was to far along when I found out so it didn’t help me. Now I’m home trying daily to find out ways to make my life a little normal. As it gets progressively worse.

  8. sellis says:

    For years I went to doctor visits with unexplained symptoms – I was starting to feel like it was all in my head, and technically it was! After a 2 day/temporary paralysis of my right arm, some vision disturbances and an increasing frequency of migraines, MRIs were ordered and my chiari and syrix were found. Thankfully, I have good insurance and I opted to have decompression surgery right away. That was in 2012. I found a doctor who helped pioneer the surgery and did some internet reading (scary) to understand further what I could be getting myself into. The recovery period was scary and my post op care directions were not the best. I ended up in the emergency room 24 hours after being released from the hospital, and my recovery was rough. At times the pain was so great, I thought it was permanent, that surgery was a mistake and that my young-ish life was over (34 at the time). About 4 weeks after recovery, the pain went away and many of my symptoms pre-surgery went away. I didn’t have my syrinx drained and continue to live with syringomyelia, but that is manageable for me. I do not have migraines with the severity and frequency that I had pre-surgery and I have full sensation in my feet again. If you’re young, healthy and your neurosurgeon thinks you’re a good candidate, I would recommend it. The recovery is rough & very intense, but lasted only about 6 weeks for me. Good luck.

  9. Cindy Miller says:

    I can’t imagine living with Chiari and not considering surgery. I was diagnosed in 2006 and at that time just suffered from the awful headaches with bending, coughing, laughing, sneezing. I began to stay away from people, groups, anywhere where I might laugh or talk a lot. I had decompression surgery in 2007 by a local NS. One month later I had repair to a dural tear and a month after that and hydrocephalus, I had shunt surgery. I did okay for a couple of years and then developed a syrinx. It actually shrunk on its own without surgery but symptoms kept getting progressively worse. I had 24 hr. nausea, inability to swallow (I had a peg tube to eat or drink), numbness in different places, constant hiccups, dizziness, and many other symptoms. Medications helped very little if at all. In 2011 I found a Chiari specialist in Denver (John Oro, who recently retired) and he basically saved my life with a very successful decompression surgery. Almost all my symptoms were reversed with only occasional headaches from too much bending or coughing. My suggestion to anyone suffering with Chiari is find a specialist whatever it takes! There are a few Chiari Centers in the US and the relief you will find with staff who are familiar with everything about Chiari is amazing.

  10. Tasha says:

    Hello. I was diagnosed with Chiari about a year ago. I was having pain and inflammation in my left shoulder. My chiropractor referred me to an orthopedic specialist who ordered an MRI. He diagnosed me with both Chiari and syringomyelia. I was then referred to a neurosurgeon who did not recommend surgery. He will continue to monitor the growth of the cyst in my spinal cord. Right now, I continue to suffer with problems with balance, headaches when I cough, dizziness, and bladder control issues. My symptoms are mild compared to many others. I am grateful for that. The diagnosis can be frightening, but I’ve learned to cope by making a few minor adjustments. I avoid wearing high heel shoes because I’m prone to falling. I avoid reaching over my head or climbing ladders because of the tendency tendency to become dizzy. I’m being treated for bladder control issues/-but with very little success. I deal with the pain and stiffness in my shoulder as best I can, but it’s an ongoing issue. At this point, my symptoms are bearable, and I manage life pretty well. My goal this year is to manage stress effectively, because it can further complicate many health issues. Be well!

  11. Wilson says:

    I have just been diagnosed with Arnold Chiari malformation type 2 last Monday after being in hospital for a second time in 10 months. The symptoms on both occasions were quite frightening. First symptoms included pins and needles in arms and hands and heaviness in legs. It then worsened and literally my whole body began to spasm and hand/wrist locking. Was completely unable to move. After a CT and two MRI ‘s the diagnosis was given.
    I am home now (6 days in hospital) and trying to get back to normal given I have two children (6 & 3years). I have been left with a dull headache and completely and utterly shattered. I am due to see a neuro surgeon but in the meantime am trying to remain positive, doing the things I have always enjoyed.
    Just wanted to share as I feel a little unsure of what lies ahead but don’t want to worry my husband or parents.
    Louise

  12. debbie says:

    That sounds so awful! I admire your positive attitude! Please know you’re not alone in your struggle with this illness! We’re sending all good thoughts and well wishes to you!

  13. carok says:

    Hi everyone!

    Im so glad I found this site! All of your comments are right on like my symptoms. I had the Chiari surgery 3 years ago and a year ago I started feeling the symptoms all over again; However, I now know the triggers and stay away from all of them. I have the numbness, tingling, dizziness all the time and I use 2 controls when I’m working at the computer because the right hand numbs after 30 seconds. Ok so here’s what I find helps me:
    I take imitrex as I feel the pressure headache is coming. I take Dramamine for dizziness and off balance feeling. The dramamine relaxes my neck and head muscles, and eyes.
    As for sleeping, I put a few pillows under my mattress (not just pillow stack under your head because you are bending you brainstem.) so my head is elevated while I sleep. This way my brain doesn’t have too much shock when is rise out of bed.
    I only bend down using me knees.
    I had a breast reduction to alleviate pressure, it worked wonderfully.
    I only wear Naturalizer shoes (they have good looking one’s now even with heels).
    I don’t sit on a sofa that doesn’t have neck support.
    These are the things that make my days more productive.
    I hope this has been helpful! Thank you for sharing!

  14. debbie says:

    Thanks so much for sharing what helps you deal with some of your Chiari symptoms!!

  15. Ashlee says:

    Hello,
    I was diagnosed with Chairi malformation one in 2000,after the birth of my fourth child. I was only 24 years old. I was suffering excruciating migraine’s dizziness and blurred vision. The doctor was looking for a tumor in my brain and found this. He brought me into the room told me that it was no big deal! Of course I was happy that there was not a tumor, however I was not quite sure what to expect from the diagnosis. After seeing this doctor a few times he told me he does not do the surgeries for this because they find that patients look better without the surgeries then they do with. After the birth of our fifth child my symptoms got worse. I found a new dr. I was still told the same thing. He also was not willing to do the decompression surgery. All of my life I wondered why I never felt the heat. I have lived in Florida for over 20 years and up until a year ago I was never hot. I would turn the air up all the time because I was actually cold I never left home without a sweatshirt. I have had my L5 removed and my lower back and my C5 and c6 fuse. My left leg is numb constantly my foot swells along with my right arm being numb. At age 40 my memory is awful. If it is not written on the calendar and I am not constantly reminded that an activity doctors appointment Ect. is coming up I will forget it. I forget my own children’s names, events, what I eat etc. I felt isolated and alone for many years. My family does not really understand what this is, nor do they really care to hear about it! Reading many of your comments has help me greatly!!! I think each and everyone of you from the bottom of my heart. I see a pain doctor each month for the pain in my neck arms leg back. I am so tired of taking pain meds. My husband does not support me having the decompression surgery mainly because I have never healed well from any surgery that I have had. This is a very scary outlook for me. I have read on many sites that even after you have the surgery you cannot regain anything you have already lost. I was wondering if any of you have a drooping eye? It is very noticeable and pictures and I try to keep my hair over at least one of my eyes. I tell the pain doctor each month when I am asked did you fall, yes of course but I thought with Grace. Once again I think each one of you for your post you never know who’s life you’re touching with your words. Many of you have Touch my life and made me feel that I am not so alone

  16. Patricia Tanis says:

    I was recently diagnosed with 9mm chiari and small syrinx. Pain has been there for years but has gotten increasingly worse. I don’t believe doctors saying it’s a structural problem requiring a structural repair. Even asked my Dr if that is the case, why don’t many people develop symptoms until their 30’s or 40’s. He said they aren’t sure. Anyway. Found multiple people online that have gone to the Chiari center in Barcelona, Spain. Every one of them has had great and lasting results. Their theory is different than in the USA and actually makes sense. Fast recovery and only 24hr in the hospital! Too many people have risky decompression only to have symptoms return. I have had a consultation with them and gonna try it before consider having part of my skull removed and a patch sewed around my brain. Doctors in the USA don’t do the procedure because it is not taught here. They are controlled by the FDA and insurance companies. Neither have your best interest in mind. Something to consider.

  17. nerie says:

    I was diagnose with Chiari 1 with syringomyelia, after a year i was operated, now I’m still working as a nurse technician,I’m doing 14 hrs. duty /day,living a normal life,I learn to put my Trust in the Lord who is the maker of our life,Everyday i “m doing exercise for my back,eating healthy food ,fruit,vegies,fish,drinking lots of water and juices,sleep at lest 6 to 8 hrs a day.I pray my personal testimonies will help you a lot..God Bless.

  18. James says:

    I am a 37 years old male named James.I was diagnosed with chiari malformation on in June 2016 after a fall and I hit my head on the concrete.My symptoms are vertigo,numbness in feet and hands and also my body starts going numb as well.Anyway hopefully some of y’all read this.when I get to feeling real bad I can’t stand for more than 2 minutes or I’ll be really nauseous and I don’t have balance.I have to lay down and be really still.anyway I want to share with everyone what I have found out doing some research and studying our condition and studying my self and experimenting.”Water and sleep is very very important” when I drink around 2 gallons of water everyday and sleep atleast 6-8 hours my symptoms vanish.When I start sweating and I don’t get enough fluids it will have me in bed for about 2 days.Our brains are suspended in cerebral spinal fluid and when our choroid plexus cannot get the csf where it needs to be our brains will start sinking and the more symptoms will occur.not trying to get to scientific here just try drinking 30 ounces an hour for a couple days and see how you feel just water are brains are very delicate and make sure you are getting salt and other vitamins.fruit,especially celery it contains a large amount of water.Water helps my brain move back into a position to whereas I have little or no symptoms at all.so I hope this helps someone out there.Its easy to forget to drink plenty of water most folks are chronically dehydrated as it is but for people with chiari malformation we cannot function being dehydrated and deprived of sleep.dont use tv and cell phones or computers when it’s time to go to bed the light from the screens tells our brains to be more active just get some really good rest.the csf cycles hardcore when we are sleeping and our brains and body is flushing out neurotoxins.hope this helps some one.

  19. Ray says:

    I’ve been diagnosed with chiari 1 and syrinx in 1996 I had decompression in 2005 I put it off for a long time then decided that at least if I gave myself a chance of hopefully slowing things down it was better than maybe leaving it to late , I was afraid of possible things happening , thank goodness it went well up to now nothing’s got worse except I now have a claw hand which some people say is nerve damage and muscle wastage, I have gained weight through not being as mobile as I used to be but can get around . It’s nice to hear of other people having same concerns and trying to be positive about things but also voicing our worries , I hope you all get the help and information you need to feel better about this illness .

  20. Dar says:

    Hi James, (nov 4th 2016 post)

    I’d like to hear more. I’m newly diagnosed with CM 1 and soon to have surgery – endoscopic third ventriculostomy.
    All comments in this thread have been very helpful – but thirsting for more knowledge and your research findings are welcome.

  21. Rebekah says:

    I was in a car accident In April 2016, a lady ran a red light. Afterwards I started having symptoms.laughing sneezing stretching coughing cause pains in my head and neck. It’s indescribable. Sometimes pins and needles in my head and numbing sensations. The pain goes from my neck up my head and I can’t move or response when someone asked if I’m ok. Sometimes my arms & hands get pins and needles. A fluid spot was found in my first mri. I was sent to a neurosurgeon then for a contrast mri. It was confirmed 2 herniated discs and Chiari malformation just yesterday. Surgery for both was mentioned. I’m going for a 2nd opinion on the 17th. It doesn’t sound like the surgery takes away all the pains and ailments. If it’s not going to rid them and fix it what’s the point. Many that have commented seem to have new symptoms afterwards or had to have more than one. Anyone try any other treatments with success? If I don’t need brain surgery I’d rather not have it. Anyone try a holistic approachwith long term results? .

  22. Tina says:

    Hi Everyone,

    I am 54 and was diagnosed a month ago with Chiari 1. Grew up having seizures, fainting spells, weak neck, “stingers” or shooting pain from base of skull up into top of head when throwing a ball, speech problems and tongue thrust (developed an open bite). At 40 got braces and dentist told me I had tongue thrust. Couldn’t hold my head up in a salon sink. Had a bout of bell palsy at 22. At 5 was hit by a car and had concussion (came to at home) and at 8 I hit the back of my head on the ice and remember vision loss for several hours, had concussion. Not sure if my Chiari is congenital or from one of my concussions. I need to ask Dr.

    Had hemiplegic migraines (vision loss, speaking difficulty, paralysis on one side of body) when pregnant and some after. At 33 started having chronic classic migraines with vision loss, aura, vomitting, tingling in fingers and face. Horrible head pain came on about 15 minutes later. Had a daily headache and pain. Neurologist diagnosed me with silent migraines.

    At 42 a Rheumatoid Dr diagnosed me with fibromyalgia. At 49 had a TIA, Neurologist now thinks it may have been Basilar
    Migriane. My Migrianes are better since I am post menopausal. My arms and hands fall asleep at night and holding a phone too long. I snore and don’t sleep well. At times I have dizziness (once for 3 weeks), hoarse voice, gagging, nausea, jerky eye movements when reading, lightheaded, pain in NECK, base of skull and shoulders. Pain under armpits and down into elbows. DROP things constantly. I also have uterine prolapse with bladder and bowel issues.

    On Wed I saw a Neurologist at Wi Chiari Center at Columbia St Mary’s in Milwaukee Wi. I hear they do 2 to 3 surgeries a week. Met a 31yr old girl with her dad from Houston there, she had surgery in November and recommend the Dr there. I had Blood work, MRI, and exam. I have herniation of the cerebellar tonsils and brain stem. He did not tell us the mm of the herniation and I was scared to ask. He showed us the images on the computer and where the CSF was not flowing properly and where it was grey instead of white.

    I was also diagnosed with Cervial Spinal Stonosis. Which complicates everything. I have to wear an Aspen Vista Collar for 2 weeks, so Dr can figure out what symptoms or coming from the Stonosis and what symptoms are the herniation of the brian compressing the spinal canal. I have noticed in 4 days of wearing the collar, my neck, base of skull and shoulder pain are so much better, almost gone. My numbing in arms and hands is much better. I still at times gag, have nausea with strong odors, lightheaded, dizzy and pain in forehead temples eyes when I bend over and come up, dropped a few things

    I hope some of my info may help someone. I do not want surgery for Chiari unless I cannot bear the pain any longer, have constant dizziness, or paralysis starts. I may need it on my discs and vertebrae. So scary.

  23. Gods child says:

    Yall just need to Pray and trust God because some people really have never experienced any symptoms. God is in control

  24. Jane says:

    64 and just had cranial decompression surgery. Found this 6 months ago. Have had major trouble using my hands for last 6 years. Hard surgery immediately because my syrinx is very large and filling the entire cord canal in my neck. Surgery ok. Recovery so far hell on earth. Supposed to get better soon. I will update after 1st Dr. Appt on Wednesday.

  25. Shannon says:

    I was just diagnosed a week ago, and have to say this has been one of the most stressful weeks of my life. I tend to be a bit of a worrier anyway, but after joining every facebook group I could, and scouring the internet non-stop, all I could find were sad and depressing stories. I felt like I was just handed a death sentence. I’ve cried for days, haven’t eaten, haven’t slept… just awful. In my research, there was always this little sentence that would come up saying “some people experience no symptoms and just need to be monitored”(which I course I totally disregarded) followed by the barrage of others describing their struggles and their sad stories. This site and the comments posted here have given me some hope – so thank you for that! I am lucky that at this point, I have very few symptoms. I was diagnosed “accidentally” after having a neck mri for some pain issues related to what I thought was disc degeneration. While I do have that going on in my neck and back, this is how the Chiari I Malformation was found and diagnosed. One of the first things I thought about was… If I am going to have this “Chiari Cloud” hanging over my head for the rest of my life, how can I do everything I can to stay heathy? Reach and maintain a healthy body weight, exercise regularly, and keep stress under control? Sounds like a good place to start. Being newly diagnosed, I am still struggling with that today, as the stress, anxiety and fear are ripping through me right now, but I am doing my best to get a handle on it. I do know that I will do EVERYTHING I can to live the best life I can. I will not curl up in a ball and give up – because I CANT. I have children, a husband, a mom and a sister who are counting on me. Will I cry – yes, will I struggle down the road – maybe, but we all struggle sometimes don’t we? Keep your heads up fellow Chiarians. focus on the POSITIVE. That’s what I am going to try and do anyhow.

  26. Elviemanasan says:

    Hi my name c elvie from phillipines..i had diagnose chiarymalformation last 2013.and since then every day i had head ache and dizziness.no medication been thru..no one can.explaine what chiary is..back pain and dizzness is improving..

  27. L says:

    Hi, im 27 and I got diagnosed almost a year ago with chiari malformation type 1. I was told I had this my whole life and I did have symptoms here and there. But my doctors and parents always thought I was being dramatic when I told them what I was experiencing. Last year around this time I got two concussions 2 weeks apart from each other. The first one was caused at work I hit the back of my head. The second time I jumped up in the air and I guess I landed wrong and ended up falling right on my head. After a few weeks I got an MRI. A week later I got a phone call from my doctor telling me I have CM 1. I had no idea what it was. The minute I got off the phone with her I looked it up. I went to a specialist and we tried all different types of meds. Nothing was working they were making things worse. Also making me very spacey and. Just not me. So after trying five different meds I said I wanted to talk about surgery. Well the last few months I have seen a surgeon.my symptoms have been getting worse and worse everyday. I have really bad headaches that start at the back of my head/neck. And it goes all around my head and to my forehead and behind my eyes. Alot of the time my head feels like it’s bleeding. My hands will randomly go numb for a few seconds or sometimes few minutes.my neck is always throbbing my shoulders are also always throbbing. And also have really bad pain In between my shoulder blades. And my whole back. Also I have balancing issues and dizziness. I have short term memory loss. I’m in pain all day everyday it’s now effecting my work, my social life. I can’t take the pain anymore so my surgeon and I have decided that surgery would be th best option for me. Which I’m having surgery for it may 5th. It’s coming up and I’m so scared to have it done. I have read a lot of things about people gaining weight before or after the surgery. This may come off wrong but I’m scared of this happening to me. I haven’t gained any weight since I as told I have it. And I asked my surgeon if any of his patients have gained weight after the surgery. and he said no this surgery will not make me gain weight. But then I come acros some comments and people have said they gained weight after it. Like I said this may come across wrong but I’m the only one in my family that is skinny and I can eat a lot. I’m told I’m built like my grandfather. But I’m scared that I’m only this may because I have CM. I do have body image disorder so that may be why I’m so worried about it. But has anyone that has had the surgery not gain weight after? I’m just wondering just so I can prepare myself for whatever is going to happen.

  28. Mary says:

    I’m a 51 year old female that was finally diagnosed with Chiari malformation 1 in 2011. Shortly after the diagnosis surgery seemed like the best option….that was a joke. My symptoms only got worse. I had to stop working in March2011, had surgery in August 2011 and was awarded SAD in December 2011. I had major depression afterwards. I really thought my life was over then. I also developed a cyst in my spinal cord after surgery which made thongs worse than ever.However God blessed me with my first grandchild which gave me reasons for living. He was a major blessing. My activities are extremely limited and cause horrible pressure headaches, dizziness, nausea imbalance, poor coordination, trouble swallowing,.ears ringing unable to bend over and chronic fatigue.
    However God guides me through each day with my grandson.
    My pain is exacerbating by movement, heat, laughing, coughing and sneezing. The only help I get is strong pain meds. I have finally accepted my life for what it is. I’m happy to find others that share my problems. Thanks and keep on posting….

  29. M says:

    I am 26 years old I have chairi 1 I have had the decompression surgery with removal of my c1 in January 2013 since then I have had an additional 3 “repair” surgeries. After my first surgery in Jan 2013 the hardware moved and was tangled with my muscles and nerves sticking and pointing out of my head so march 2013 had a microscopic repair. March 2014 hardware moved again had to re open and repair. Nobener 2015 hardware moved again and had to be taken out completely leaving my brain exposed with no protection. I still daily deal with extreme fatigue constant headaches pressure sometimes dizziness back pain head face and neck pressure as well as stiffness spasms hand and finger cramping and so much more. I would love to workout and exercise but am afraid of movement. It was found accidentally on an MRI in 2009 and instead of sending me to a neurosurgeon I was sent for cortisone injections EMGs burning of the nerves in my neck and back.Until June 2011 I was diagnosed with Chiari through another MRI and was finally told to GOOGLE a neurosurgeon which I found the best who actually specializes in Chiari. I also have an 8 year old and I just want my life back with her and my husband! Also I suffer from allergies and sinuses so I found the only things helping me are Claritin helps relieve the pressure and ib profin 800 takes the swelling down. Unfortunately I had to stop the ib profin because it is really bad for my stomach and caused more problems. I hope this helps Good luck to all dealing with this condition!

  30. Michelle says:

    Hi, thanks for all the comments. Was told 4 weeks ago that I have CM not sure what 1, been having symptoms for about a years but getting worse pain in head, neck, shoulders, arms and legs also have fibromyalgia so not sure how much the pain may be that. Been referred to a neurosurgeon what will aye except when see them. Stay strong all?

  31. Jacqui says:

    Thanks so much James for your observation about water. I was diagnosed nine years ago and have adapted my activities in terms of management of the condition. I know the impact of stress on my symptoms due to previous crisis driven jobs. Although, I realized humidity exacerbates my symptoms (e.g. headaches, dizziness, etc.), I did not make the correlation between water in terms of the cerebral spinal fluid. Overall hydration is important to the body so I strive for at least an intake of 64 ounces a day and more on humid days but never considered more than a gallon. Will see if increased water intake helps. Thanks again for your observation.

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