How does everyone cope with this?

Hi all,

As a fellow Chiari sufferer I feel for all of us! This is just a horrible thing to have to live with and not many people can truly understand what we have to live with on a daily basis. Thankfully I have an apt this Friday to see my 2nd specialist and I am hoping I get some kind of encouraging news.

My question for everyone is this: How does everyone cope with their Chairi? I often find myself struggling to come to grips with what I have. I sure could use some inspiring stories. (I am sure there are not too many out there, because this is hell to live with) but perhaps there are some people out there who are coping with it better than me and I could sure use some pointers.

Also, how many of you have days like this. The day goes along normal, you feel pretty good and then BOOM!! out of nowhere it hits you, and your arms/fingers/legs/toes start getting tingly and numb, headaches/dizziness hit you and you feel like hell out of nowhere? That was my day today and it was not fun. Just was curious to see how many others get days like this?

Thank you all for taking the time to respond

Shane

I got on intermittent FMLA through my work. I called out every single day for two weeks in March. It was very hard for me. I ran out of vacation/sick time. Our finances are in a horrible state. My husband was/is frustrated and bitter towards me (i'm the breadwinner) and the kids felt neglected. Ultimately, I found a doctor locally (while waiting to see a Chiari specialist in AL) who was sympathetic and tried to help me. She put me on preventative migraine meds but they only quelled a few of the symptoms, I was still in pain. She's also running a nerve test to rule out any other possible reasons for my weakness/pain/numbness in my right hand. She ordered another MRI (my third this year) this time of my cervical spine.
Coping? Ummm for me, I'm just learning to pace myself and not put too much on my plate. If I don't feel good, I just don't feel good and I've had to explain to my friends and family that this is how it is for now. I use 'for now' because I DO believe I am going to get better. I will not accept this as a debilitating disorder that is going to prevent me from living my life. I have too much going for me right now to lose it all to THIS!

Now I'm still frustrated with my MRI's, doctors and prescriptions. I'll probably be starting a new discussion here in a moment about THAT. But overall, my 'coping methods' are just staying positive and trying to find what I CAN DO and take pride in those moments when they occur.

Good luck to you!

Hi Shane God bless you. I was diagnosed a year ago and I understand about the “boom” that just happened to me on Sunday when I was on a road trip with my husband. It is horrible when it hits. There’s no relief. Anyhow I treat my Chiari with Advil daily per my neurosurgeon

and if it’s worse I add Tylenol and ice packs. I don’t take any prescription medication because since this is a problem of inflammation and a structural problem medications only have side effects that caused me to get worse. I also do massage therapy every week or else I will get weak and tight, but I know my day is coming where discussions about surgery late this year may take place. I am not getting any better in fact I am deteriorating and have gained 25 pounds in the past year due to muscle weakness bc Im unable to do physical activities anymore.



Also have you had a Cine mri? This type of Mri determines whether or not you have CSF flow on your Chiari side. If you have a csf blockage this is probably the cause of all the pressure, numbness and can eventually can lead to a syrinx or blockage in your spine and cause further neurological damage.

Also my faith in God keeps me strong and joyful and I try to stay busy with work which also is affected by this condition at times but I do my best each day and hope to get better soon. I am very hopeful!

Hi Shane, I was diagnosed with a chiari malformation back in october. I've had issues with balance, migraines, fainting, etc for years! Back in October, I got the worse pain in the back of my head. I had never had this particular pain before. I called my neurologist and he had me come in. He sent me for an MRI which revealed a 5mm chiari malformation. when I came to the support groups to find out what the heck a chiari malformation was, people were asking me if I was flexible and telling me about Ehlers Danlos. I'm in Maryland, so they recommended going to see Dr. Henderson. Sure enough, I do have Ehlers Danlos. And I have craniocervical instability. My chiari was caused by Ehlers Danlos. It makes my entire medical history make sense. Dysautonomia, hashimotos thyroiditis, multiple prolapses and surgeries, mitral valve prolapse, double jointed, etc. I am in a collar until I am able to get it fixed. I saw my general practitioner today for the first time since I was diagnosed with chiari and eds. I was telling her that I'm very grateful that everything worked out the way it did, or else I wouldn't be able to see Dr. Henderson. She said something to the effect of how bad it is that this is happened. And yes, I understand this is horrible!! I hate it! I don't want it at all! The last thing I want is brain and spine surgery or any surgery! I didn't mean I was grateful to be diseased! LOL Of course not! But if I have to have surgery, thank God things all happened in a way that I am able to see the best surgeon specializing in EDS/ chiari in perhapse the world. And things happened over a period of years leading up to something that we didn't even know I was going to need, and they had to happen in a certain way for it all to work out for me to be able to get the care I need from Dr. H. The way the insurance and medicare worked out is amazing. And I'm grateful just for the fact that Dr. H is 40 minutes away from my house! And I'm grateful that after all these years, we finally have an answer to why I am so sick. Why I was so young and having things that happen to 80 year old ladies happening to me. To why I can't walk straight, why I faint, why my joints pop out of place, etc. The doctor wasn't understanding me! I hate chiari and EDS! But I thank God everything worked out the way it did, so I can get this mess taken care of. And she is a major key to why it all worked out so well! I can't do much these days. It take everything to get anything done. Even getting my mail from the mailbox is tiring. But I am also thinking that this is going to be in my past once I get this fixed. I am planning on a major improvement! And the thing that helps me to stay positive is being grateful. And the thing that keeps me grateful is that at the same time back in October that I got that bad pain in the back of my head, my cousins wife got a bad pain in her head. We were both going for MRI's at the same time. I was diagnosed with chiari. For her, they found a tumor. She had it removed, started chemo, and lasor knife treatments. But cancer kept popping up everywhere. I had an appointment with Dr. H for May 28th, and people would say "I bet you can't wait". But I could wait, because I knew that by the time I saw Dr. H, Debbie would be gone. And I didn't want to wish time away, because with the going of time, Debbie would be going too. I got a call early to see Dr. H. And so I went early. And that week that I saw Dr. H, Debbie died. She passed away one month ago. Although I was shocked (because I never knew a brain could herniate) I am so grateful that I was not given that cancer diagnosis, that I try to smile through the pain every day, just like Debbie did. I have a huge surgery ahead of me. Maybe more than one. Thats quite a fight, I guess. But Debbie had no chance, diagnosed at stage 4. So I guess that is what helps me to stay positive. But it is hard to live with constant chronic pain. Especially when limited by balance issues and muscle weakness issues. You get bored and have nothing but time on your hands. Tv usually stinks! lol And my concentration is shot anyway! But I focus on the positive! I look for funny short videos online and I love funny and cute pictures. They make my day! And I take it one day at a time and pray a lot! Have faith that things will get better! I always remember that our bodies may be frail but our souls are strong! We are meant to be fighters and survivors! And to have faith! Lots of hugs, love and prayers!

It is so wonderful to know that we’re not alone,we have a great support group here.They can help us cope because they know our pain.My journey was very long and it was lonely I didn’t find this site until about the same time I found my specialist,that had taken 27yrs.!The thing that helped me was my faith in God,I know there’s a reason for all things in my life.This has to be one of the hardest conditions to face,it is so misunderstood by the reg.medical community,our mental suffering is as bad as the sicknes, especially if the diagnosis takes years.Never stop looking for answers that is how we cope too,in the end it finally paid off for me,we are our own advocate.We have to lean on those who will support us,my husband has always been there for me but no one can understand like those who face the pain of this condition.

I have to say that at this point, i almost wish i could have surgery as i have not had it yet. I am only about 5 mm but they said i had no need for surgery at this time. But they did find a very small syrinx in my spine, right next to a bulging disk. I am trying to get in to see the guy in Hershey, PA that a few people in these support groups told me about. The neurosurgeon i did see here in town said "I only operate on the Chiari if it is past a certain degree of herniation." I just stared at him. He knows nothing about Chiari! He is supposedly one of the best neurosurgoens in the area but not for Chiari! How do i deal with all this? Pain medicine and headache medicine. My job doesn't help much since that is what is making the pain worse in my back and neck but i can't do anythign about that until i find a job outside of retail. Sitting in a car for over an hour kills me too so i am about ready to do anything in order to get rid of the pain. But, being an athlete all my life, i am used t pain and i have a higher tolerance for it then other people. So, i just deal with it, just like i deal with my year round allergies. LOL Skating at derby practice helps a little as the rush of air past my body is what soothes me.

Furie18:

You need to find another chiari dr!! My neuro as most good chiari neuros will tell you the size of the chiari is irrelevant!!! If you have a syrinx already you are running the risk of more neuro damage and maybe paralysis. Im 5mm and Im suffering. That neuro doesn’t know what he’s saying!!! Have you had a cine mri yet? This will determine if your csf cerebral spinal fluid is blocked or not. Please find another neuro. My good friend has an awesome chiari surgeon in PA. I will get you his name!!

God bless.

I was diagnosed 17 years ago, and have been in the chiari shuffle ever since. I saw Dr. Rosner last month in NC, and in less than 2 hours he confirmed through a physical exam and my MRI everything that I had been experiencing my entire life. But, with that said, insurance won't cover an out of state doctor, so it is still a struggle.

But, with that said, I've had a lot of time to go through the different stages of grief, and gradually accept that this is my life. I'm not one of those people who felt great and then BOOM. I've been sick my entire life, so in a lot of ways I struggle more with the wish to be like healthy people, with normal lives.

Now, I cope by looking at things realistically, practically, and positively. For example: my hair is too heavy, ok, I'll cut it shorter. Still too much for me, ok, I'll cut it all off. It's just hair. It is not who I am. And, now I'm happy that the weight isn't causing extra pain and I have that extra time each day that I would have spent on my hair. I don't even have to wash it every day. At the same time, I recognize that I miss my hair, and I allow myself to feel the loss. I allow myself to be in that moment of grief, but I don't wallow in it either.

Honestly, I've found that this entire ball of wax has given me the opportunity to become a better person, because it's either I give up and become miserable, possibly commit suicide, OR I come to terms with who I am, what is happening in my body, accept that I can care for myself, but ultimately I can only do so much, and be happy and grateful for what I have. Life will always be difficult and painful -- for everyone -- not just us. So, I do my best to focus on myself as a person, not this illness, and surround myself with similarly positive people.

Symptom wise, I only take Acetazolamide for the intracranial hypertension. I have been on every other medication known to mankind and they either didn't work, or the side effects destroyed me. My pituitary gland has been squished by the hydrocephalus, so I don't feel the effects of pain pills. Instead, I go to acupuncture twice weekly, which helps to drain the CSF, reduce inflammation, and alleviate the pain. It's given me my life back to a large extent, as I work diligently to find a way to afford a Chiari specialist.

We're strong! We can do it!

Hello, yes, I have many days like this too. I almost feel that if I DON'T have some type of headache or pain that something is wrong because I live with the pain daily. I found out I have Chiari a little over 2 years ago but have been putting off the surgery by trying different meds and chiro, massages, etc.. but after 2 years I am finally going in for surgery to do the decompression surgery in 2 weeks. I have lost my balance and tore the legiments in my leg, was splinted and was on crutches for 2 weeks, I can not no longer do daycare or be a foster mom due to my health. I am hoping and praying that this surgery will help because I am tired of living with this pain every day of my life and seeing my children look at me with sad eyes cuz mommy is stuck on the couch or in bed not feeling well. I pray you get some relief and answers.

Jozy, i want to try to get in to see a Dr. Iantosca in Hershey. Yes, the neurosurgeon i saw had no clue. I left his office as frustrated as i was when i went in. It took all i had to not correct him right then and there... in front of someone who was actually shadowing him that day. My neurologist seemed ok with me wanting to see someone who knew more about Chiari.. so far. LOL With my husband's schedule though its hard for me to schedule very far in advance because he is out of town a lot and i don't want to waste whatever time we do manage to get. But, i plan on seeing someone else by the end of summer. The headaches are weaker than they used to be but my neurologist can only do so much. I have only ever had regular mris. No flexion, cine, etc. I was going to ask the other doctor about them whenever i can get in to see one. i am supposed to have another MRI this fall for my syrinx. they said it was only a small one and they were going to watch it but i read up on them and with a bulging disk right next to it, i am a little worried about it. It's just so frustrating!

That being said, i have a question for any of you. Have any of you had problems regulating your blood sugar when your symptoms get really bad? I have been having a hard week this week with my blood sugar stabilizing as well as dehydrating due to a broken ac at work. But my blood sugar is what scares me. With a small syrinx and all, i am wondering if any of you have had these problems. I am not diabetic but i do get hypoglycemic, but i can usually catch it before it gets too bad. This past tuesday though i had my sugar drop only about 2 hours after i had eaten breakfast. is this normal for those of us with Chiari?

Furie 18 Im getting you the name of my friend’s Chiari neurosurgeon in PA!



Also, on the blood sugar part I’m not sure but I do know that I just came up with high triglycerides for the first time in my life. Also when I did my blood work the last few times the nurses said that my blood was very thick and that was due to dehydration. I am constantly drinking as much water is I can.



This chiari makes your body crazy.



I’m not sure about your insurance but you definitely need to do a video MRI the cine Mri to determine whether or not your CSF is blocked and why you’re having the formation of csf which are cysts or syrinx.



I believe any one of your doctors can request an MRI. It does not have to be a neurosurgeon or neurologist. My chiropractor requested MRIs and I got them done. My Cine Mri answered a lot of questions.



I saw my Neuro today and mentioned what you were going thru and he said you really need to find a good neurosurgeon that will listen and understand Chiari.



Email me anytime. Talk soon! Jozy

LOVE this!

Seeramoni said:

I got on intermittent FMLA through my work. I called out every single day for two weeks in March. It was very hard for me. I ran out of vacation/sick time. Our finances are in a horrible state. My husband was/is frustrated and bitter towards me (i'm the breadwinner) and the kids felt neglected. Ultimately, I found a doctor locally (while waiting to see a Chiari specialist in AL) who was sympathetic and tried to help me. She put me on preventative migraine meds but they only quelled a few of the symptoms, I was still in pain. She's also running a nerve test to rule out any other possible reasons for my weakness/pain/numbness in my right hand. She ordered another MRI (my third this year) this time of my cervical spine.
Coping? Ummm for me, I'm just learning to pace myself and not put too much on my plate. If I don't feel good, I just don't feel good and I've had to explain to my friends and family that this is how it is for now. I use 'for now' because I DO believe I am going to get better. I will not accept this as a debilitating disorder that is going to prevent me from living my life. I have too much going for me right now to lose it all to THIS!

Now I'm still frustrated with my MRI's, doctors and prescriptions. I'll probably be starting a new discussion here in a moment about THAT. But overall, my 'coping methods' are just staying positive and trying to find what I CAN DO and take pride in those moments when they occur.

Good luck to you!

I have had the SAME thing with blood sugar! Where I eat and shortly after my blood sugar drops. Is this a symptom of Chiari?

Furie18 said:

Jozy, i want to try to get in to see a Dr. Iantosca in Hershey. Yes, the neurosurgeon i saw had no clue. I left his office as frustrated as i was when i went in. It took all i had to not correct him right then and there... in front of someone who was actually shadowing him that day. My neurologist seemed ok with me wanting to see someone who knew more about Chiari.. so far. LOL With my husband's schedule though its hard for me to schedule very far in advance because he is out of town a lot and i don't want to waste whatever time we do manage to get. But, i plan on seeing someone else by the end of summer. The headaches are weaker than they used to be but my neurologist can only do so much. I have only ever had regular mris. No flexion, cine, etc. I was going to ask the other doctor about them whenever i can get in to see one. i am supposed to have another MRI this fall for my syrinx. they said it was only a small one and they were going to watch it but i read up on them and with a bulging disk right next to it, i am a little worried about it. It's just so frustrating!

That being said, i have a question for any of you. Have any of you had problems regulating your blood sugar when your symptoms get really bad? I have been having a hard week this week with my blood sugar stabilizing as well as dehydrating due to a broken ac at work. But my blood sugar is what scares me. With a small syrinx and all, i am wondering if any of you have had these problems. I am not diabetic but i do get hypoglycemic, but i can usually catch it before it gets too bad. This past tuesday though i had my sugar drop only about 2 hours after i had eaten breakfast. is this normal for those of us with Chiari?

Thanks for all this Abby.... I bookmarked this page! <3



Abby said:

We know what your saying. We too, have days like your describing. Here is wacma's list

Some POSSIBLE non-surgical/ drug free methods to alleviate ACM symptoms- also useful for post-op patients and as life-style guidelines. Bernie Meyer, Editor (internautbhm2@comcast.net) Updated 7-10-04

Shortest list- Reduce/eliminate neck stress in daily activities to include sleeping.

Short list

1. Wear highly cushioned, support shoes to reduce neck, cerebellum pounding. Commercial cross-trainer sneakers are recommended - New Balance, Nike, Reebok etc.- test before buying.

2. Avoid neck-stressing activities (football, soccer, basketball, wave pools, diving, tennis, roller coasters, other amusement park rides of high G forces, lifting in excess of 15 lb, backpacking, falling asleep in chairs, extended reading with head bent etc.)

3. Get plenty of rest and sleep (eight hr minimum). Pillows and sleep position are very important. Soft, small pillows with fiberfill are very good for this i.e. little or no "push" back. (see expanded list below for other comments about pillows). Most Chiarians are side-sensitive. Use a large pillow(s) etc. to prevent rollover onto affected side. Elevate your bed at the head 4-6 inches by inserting old telephone books, bricks, boards or blocks under the front frame legs. Have a strong relative or friend assist you. If possible, do the same when staying at a hotel/motel or at the home of relatives." Stop eating and drinking three to four hours before bedtime to reduce the need to get up at night.

4. Avoid caffeine, alcohol, aspirin and/or high salt diet if tinnitus is a major symptom or any of these dietary items increase other symptoms.

5. Stay in excellent physical condition via walking, exercise bikes and other non-neck stressing activities - STAY LEAN

6. Sit in soft recliners with high backs and foot rests.

7. Support reading material with elbows on your knees/thighs or chair arms. Read "straight" ahead. Use book holders or music stands. Look at computer monitors straight ahead.

8. Drive if you have to but use wide vision mirrors and get seats with high backs. -Take your time and limit your driving to short distances at slow speed preferably during the day. Some Chiarians find orthopedic collars help reduce neck stress when riding in a car etc. Some do not.

9. Relax and avoid stress and noise. Don't tighten the neck muscles. Stay "cool".

10. Put soft cold compresses on the neck/ brain joint area or on the top of your head for about an hour while lying down (these are soft compresses). Some Chiarians prefer warm compresses.

11. Straining during bowel movements should be avoided. Eat plenty of roughage and eat at regular times. Drinking herbal tea containing senna may help give pain-free relief from constipation.

12. Heavy jewelry, scarves, ties, tight collars, bras, rings, bracelets and watches might feel uncomfortable. Adopt a casual life style and don't wear them.

13. Try to avoid waiting in lines where stutter stepping is involved. Uneven surfaces or checkered designs in floors maybe difficult to walk on. Focusing on an object in front of your or closing one eye may help when dizziness hits.

14. Do crossword puzzles to assist short- term memory retention. Ditto for playing cards.

15. Take calcium supplements to assist in bone enhancement especially after surgery. Be very cautious using vitamins and supplements- most have not been thoroughly tested for primary and side effects. As always, check with your doctor first.

16. TENS machines may help ACM/SM patients, especially those with spasticity (cervical, thoracic, lumbar muscles) and spinal pain. TENS units also can help with headaches. You can buy one for use at home. As always, check with your doctor first.

17. Avoid cervical traction.

18. Lumbar punctures, spinal taps or epidurals can be dangerous for Chiarians. Always ask your doctor and insist they review the literature on these procedures with respect to increasing herniation.

19. Brushing teeth or gargling can result in sneezing. Minimize head motion during brushing and not bending the neck when gargling.

20. Avoid chiropractor adjustment. Most chiropractors have no experience in treating ACM's. One member's herniation significantly increased after cervical adjustment. "That is because I herniated from 3-4 mm to 15-20 mm in 8 months with this treatment (documented on MRIs)".

21. Review daily movements to include cooking and cleaning. Eliminate as much neck stress as possible. See the items on the expanded list below for some helpful hints.

22. Use the special tray that most beauty shops have for washing hair for people who cannot lean back on blunt sink rims. Chiarians should never lean back on the edges of sinks.

23. Methods to reduce neck stress during house cleaning/cooking are listed at http://www.pressenter.com/~wacma/pamshints.htm

Expanded list (use Find on the Edit Menu to quickly go to key words)

1. Increase foot/ankle support by wearing Nike, Reebok or New Balance Air-crosstrainers or similar highly cushioned/ supported shoes (i.e. cushion the cerebellum). Running or walking shoes typically do not have the proper support. The crosstrainers are sold in most sneaker stores. Since each brand is a little different, it is recommended that you test the different models before purchasing. All come in different colors to include black. New Balance crosstrainers get my personal nod as Nike has changed their style resulting is less support and cushioning. (from Sarah- Use gel pads as inserts in your shoes , ...... put em in before you choose the shoes , 'cause they take up more room . They add more shock absorption. Berkinstock makes a similar insert pad that's good too. These help when fashion dictates something other than athletic shoes.

2. Avoid neck "jerking"/stressing activities such as football, basketball, tennis, weight/furniture lifting, wave pools, roller coasters, backpacking, extended reading or sleeping with the head bent down or up, etc.

Notes from Jim Foutty:

When you think of Chiari malformations, picture in your mind an orange with a cord through its middle sitting on top of a soda bottle. If you get hold of the cord and pull downward, this is in a simple way, what is happening to our brain. It is trying to make its way down through a very small opening so what we must do is to stop and reason carefully what we do and the affect it will have. Lifting heavy objects, squatting down, bending a lot, working overhead and using our upper body are some of the things that will cause a downward pull or a swelling of muscles in the neck and therefore cause increase in symptoms. Be careful of anything that puts you in jeopardy of falling and creating trauma of any type.

3. Get plenty of rest and sleep- use a small soft pillow, fiber better than foam, and extra side pillows/rolled towels to prevent rolling to a neck-pinch position,- sleep with your head higher than your feet,- a head down position can cause significant pressure on the neck. Dr. Milhorat recommends sleeping on a bed that is elevated to some degree at the head board. Some Chiarians use a water-base pillow. (http://www.mediflow.com). Other types, a sobakowa pillow, a feather pillow. When staying at a motel/hotel/guest quarters, roll up two or three large towels and insert them between the mattress and the box springs near the head board. Sneakers will also work. Don't forget to remove the "risers" before you leave.

Eight plus hours of sleep are recommended by most Chiarians. If possible get a nap during the day. It helps to refresh and get through the rest of it. Stop eating and drinking three to four hours before bedtime to reduce the need to get up during the night.

Notes from Sue Marsigli:

Not finding a pillow that is comfortable enough post operatively is an issue many of us face. Before anyone has surgery the issue is much easier to face as you are only dealing with finding the position in which you can put your head and neck that will not increase any of the symptoms.

After surgery you are still dealing with this issue, but in addition, you are dealing with scar tissue, sore incision sites, bony pain or pain from the hardware and never mind if you have to wear some type of brace to sleep in.

Sleep is usually interrupted for many of us and yet this is probably the only time that we are able to unload our spine for any length of time and this is needed to aid in the healing process. I wish there were a magic answer of a pillow or bed that would work for everyone. What is important is to try various amounts of different things and constantly reevaluate what you are doing. Is my head and neck in a neutral position-how long does it stay there before I have to move, what position causes increase in pain, how long at a stretch am I really sleeping? The list of questions goes on and on.

Get your spouse or even a child to look at you when you are sleeping and the next day (don't need to wake you up after you finally got to sleep) let you know what position you were in. You may need to brace yourself with some pillows or towel rolls. I do know that with scar tissue a hard surface is probably not going to be your best bet but then also you don't want to go with something too soft. I think that when you get some type of material that has some play with it you have a better chance in succeeding to achieve the correct amount of support.

I also think that we tend to forget about using some terry cloth towels rolled to the correct height to wear around your neck to sleep with. The material is soft enough to not irritated the scar tissue and yet strong enough to give the bony alignment that you need.

Sleep patterns take 6 weeks to change so don't expect to change things overnight. If you are able to comfortably sleep for two hours then I bet you are on the right track and that with time your pattern will increase. You will constantly need to change things as you heal and some things get stronger-muscles and scar tissue so be ready to make adaptations.

I bought a pillow from Brookstones and have found that is the only pillow that I can use to sleep with. It is called Tempur-pedic and it is a little bit pricey standard size $99 ($130 queen size), but it is amazing and I highly recommend. I know that when I bought it I thought here goes another one that will not work. The salesman told me to keep the plastic on it and if it did not work to return it for a full refund. They couldn't buy it back from me now. It works on the theory of the heat of your own body allows it to conform to your head and neck. I think that this is great, especially if you have had surgery. When you have had surgery there is scar tissue that has formed and when you use an orthopedic pillow that is supposed to put you in so called normal alignment, the scar tissue is stretched and therefore it is uncomfortable. This pillow molds to you and gives you support instead. Hope this helps. I know that my breathing and swallowing and hear difficulties are better with this.

Instructions for a Postoperative Pillow (from Patrick's Mom)

· Purchase an inexpensive down pillow (king-size is best). · Remove any protective zip-on liners that may have come with it. · Equally "divide" pillow in half by pushing all the down out to the sides. · Pin the center of the flat pillow ticking with straight pins from the edge to about half-way through to prevent the down from moving back into the center · Either by hand, or by machine, baste-stitch in the center from the edge of the pillow up almost to the middle, across 3/4" and back down the other side returning to the edge of the pillow. · Return pillow to any liner and give it to your favorite Chiari patient!

This pillow keeps direct pressure away from the surgical incision when the patient is lying on his/her back, yet allows them to turn from side to side without needing to reposition the pillow. A king-size pillow works best because it provides cushioning across the entire length of a hospital bed and allows extra room for turning from side-to-side. (A king-size pillow is difficult to push through the arm of your sewing machine, but it is possible!) But if you take this pillow with you to the hospital, be sure to put a vinyl liner around it to protect it from post-surgery nausea!

4. Avoid caffeine, alcohol and aspirin. Salt typically increases blood pressure which is not good for a lot of reasons to include an increase in ear ringing and possible influence on ACM's Note: abstinence from caffeine and alcohol is also recommended for individuals suffering from Meniere's disease) (note: let your symptoms be your guide. If a glass of wine or beer does not affect your symptoms and you are not on any medication, enjoy. Your doctor/pharmacist also should be your first authority on diet).

Notes from Suzanne Chisum:

Dr. Milhorat told me something interesting.... he called it Meniere's Syndrome... it is when a person with Chiari has a build up of fluid pushing on the semi-circular canals in the inner ear and it produces Meniere's like symptoms.

He told me that he operated on 70 people with these symptoms, having them go through a thorough exam by an ENT and then he has them go through it again after the operation and has seen great improvement

5.Stay in excellent physical shape with walking, exercise bikes and other non-neck stress activities- stay lean,

6. Sit in soft recliners with high backs and foot rests,

7. Drive if you have to but use wide vision mirrors and get seats with high backs. -Take your time and limit your driving to short distances at slow speed preferably during the day.

From Sarah - Wearing a soft cervical collar when in a car is found to be helpful by many Chiarians before and after surgery .

I also use a cloth sleeve filled with the plant potting granules that hold water , just sew it to fit my neck , soak in water a few hours , and it holds the water turning into a firm gel .....this then evaporates in the heat over several hours ,....makes a huge difference when its 90 or 100 degrees outside :) I like using old silk ties from the thrift shop for this ....great fabrics and colors etc. for pennies ! and non toxic :)

8. Relax and avoid stress and noise. Don't tighten the neck muscles, stay "cool".

9. Put soft cold compresses on the neck/ brain joint area or on the top of your head for about an hour while lying down-these are soft compresses. As per Darlene, Arab Chiarians use cold compresses/ cloths wrapped around their heads to alleviate some of their symptoms. Darlene also notes that a lot of Arabs have mild ACMs. Hot showers help some Chiarians with bad headaches. Some Chiarians use hot/warm moist sandbags on the back of their necks.

Note from Donna Corman:

Last fall at a craft sale I bought this thing that could be put in the freezer or in the microwave. It works great. And is so simple to make. It's just flannel material sewed in a square and filled with rice. Make them any size you want. The one I have is about 8" x 8" and is filled with three lbs of rice. They just look like those bean bags we use to play with as kids. Be careful the first time you put them in the microwave. Each oven is different. Please start out on the lowest setting first. These things work wonderful and just the light pressure feels good when I must use them on my head. I used the frozen vegetable bags the other night because I needed so many for my legs.

Other ideas for ice packs:

We found ACE manufactures an ice pack that is reusable and soft (conforms to the body). Its order number is 207516. Hope this helps someone. Faith

Also, here is a recipe for an ice pak. gallon zip lock bag 1 cup water 1 cup alcohol

Mix water and alcohol. Put in freezer and freeze, it will be mushy and comfortable. And can be reused and reused. Cheap. Martha P.

10. Straining during bowel movements should be avoided. Eat plenty of roughage and eat at regular times. Drinking herbal tea containing senna may help give pain-free relief from constipation. Notes from Darlene: Straining for difficult bowel movements increases intercranial pressure...and we all know what that can lead to. At the '97 CSN conference, Dr. Tator was quite outspoken about maintaining bowel routines so that ACM and syringo patients do not have to strain during bowel movements. This can cause problems and is a leading cause of complications. Those in a post operative condition have to be really careful as the use of the narcotic pain meds predispose you to the old concrete bowel syndrome.

Use a stool softener, or speak to your doc about it...but don't let it happen to YOU!

From Peg: A healthy vegetarian diet really helps with the constipation. It is much higher in fiber and beans/lentils ferment and breakdown faster then meat. When I start having increased constipation which is often I decrease meat and increase beans with much success.

There is the "gas" problem but if fiber is added gradually and beans/lentils are used as the source of protein daily the body adjusts and the gas problem resolves. This also can often alleviate the need for bowel medications which can interfere with nutrient absorption. For anyone with a history of coronary problems a well balanced vegetarian diet can also be very beneficial. Adequate water intake is also very important, I stress water not soda or coffee. I am a registered dietitian who has treated many people with constipation and have post surgery symptoms from ACM, I know how bad straining for any purpose is to our well being.

Another benefit to the vegetarian diet is for those of us who have difficulty chewing, I fatigue with chewing, beans are much softer then meat.

11. Support reading material with elbows on your knees/thighs or chair arms. Read "straight" ahead. Use book holders or music stands. Look at computer monitors straight ahead.

Notes from Andrea Traugott:

Using a 'puter is probably one of the worst ACM symptom exacerbators there is... sitting and staring and using the keyboard can mess up even the healthiest body let alone ours. Have the screen (or monitor) at eye level and if at all possible get an ergonomic chair for the back. BUT remember to sit in the new chair correctly (butt to the back of the chair, not on the edge... feet flat (no leg crossing) and keep your back as straight as you can in the back of the chair. You can also get an ergonomic keyboard to help the strain on your hands, wrists, arms and cervical area of the neck. The keyboard is slanted/sloped and you'll need to get used to using it.. my hubby bought me one for my birthday and I love it!

Also remember to BLINK!! It lubricates the eyes and prevents dry eye.

Notes from Sarah in Paradise:

I also found 2 other things that help. I use a rocking chair in the mornings while at this desk ......don't have the faintest clue why but the motion of moving helps some ............and I set a timer to go off about every half hour and do 5 mins of stair step or stretching . if I sit to long stationary (as I have a tendency to do when engrossed on the puter ) I get stiff and achy ....makes the rest of the discomfort harder to ignore !!

12. Heavy jewelry, scarfs, ties, tight collars, bras, rings, bracelets and watches might feel uncomfortable. Adopt a casual life style.

13. Try to avoid waiting in lines where stutter stepping is involved. Uneven surfaces or checkered surfaces may be difficult to walk on. Focusing on an object in front of you or closing one eye may help when dizziness hits.

14. Do crossword puzzles to assist short term memory retention. Ditto for playing cards.

15. Take calcium supplements to assist in bone enhancement especially after surgery. As always check with your doctor first.

16 Be very cautious using vitamins and supplements- Most have not been thoroughly tested for primary and side effects-

17. TENS machines maybe useful for ACM/SM patients, especially those with spasticity (cervical, thoracic, lumbar muscles) and spinal (cervical, thoracic, lumbar) pain. TENS units are also useful with headaches. You can buy one and use it at home, but first check with your doctors.

18. Avoid cervical traction! it's good for your cervical vertebras, but a time-bomb for your herniated cerebellar tonsils.

19. Acupuncture might help. But find a Japanese/Chinese expert.

20. Lumbar punctures (aka spinal taps) can be dangerous for ACM patients... always ask your doctor: "what about lumbar punctures and ACQUIRED ACM? Herniation increase?" and expect "yes..., er... but we need spinal fluid to test,..." improperly performed lumbar punctures = ACM trigger. Ask Allison Rutan RN, neuro nurse about this, her email is: ■■■■■■■■■■■■■■■

21. Brushing your teeth can cause problems. During the over-active phase, I switched from a toothbrush to a water pik or other circular motion tooth cleanser. It is the in and out motion of the brush as it strikes the soft tissue in the mouth (plus the act of watching it in the mirror) which is likely stimulating the gag reflex or sneezing.

Try closing your eyes when you brush you teeth, then try to clean the teeth without touching the tongue and roof of the mouth...use a mouthwash type dental cleaner for this.

Also you may want to try the mouth rinses that have a numbing effect...chloraseptic etc...and rinse with that first to numb or decrease your gag reflex a little. There are also prescription oral rinses that have a numbing effect, Tantum oral rinse comes to mind.

I found switching to the water pic and forgetting about vigorous brushing motion was the best for me. When I tried to close my eyes I fell over and that presented a whole other set of problems : )

22. For sleep apnea which is a symptom of some Chiarians, consider using a device called "Silent Night" or another one called "Thorasnore". they both work basically the same way by moving your bottom jaw forward to help keep the airway open when you are sleeping. These devices are contraindicated if you have TMJ.

This list can be given to anyone, anytime, anywhere. It is a compilation of suggestions made by WACMA members over the past five years.

Well, its been a while but i finally got an appointment to see Dr. Iantosca in Hershey, PA. He is in my network and a heck of a lot closer to me than Dr. Bejjani in Pittsburg. LOL I go to see Dr. Iantosca at the end of June. Anyone in here see him? At the unite@night walk today, i talked to a few people who have heard he is pretty good. all i know is that my neck has been getting worse lately and my back is slowly hurting more and more each week. I am wondering of my syrinx may be getting worse. Either way, at this point i really don't care what needs to be done as long as it helps! But i do have a question for all you folks in here.

Have any of you had problems sleeping before being diagnosed? I mean to the point that you actually get a good nights sleep and you wake up more tired than before. I have been fighting to fall asleep for over 5 years and with this condition i just dont' know how much more i can take of this! This past week i had to fight to stay awake when driving to work 3 times. THREE!!! melatonin doesn't help, my headache meds that are supposed to make me drowsy dont help enough, and neither does warm milk, tea, or anything else i try. i am at my wits end and my husband says he thinks i may have restless legs syndrome because i can't seem to keep them from moving around when im falling asleep. Once i am asleep, im fine but he sometimes thinks i may not be breathing right either. I will be talking to the neurosurgeon about all this but i want to know if anyone in here has had this. Like i said, i am about at my wits end. We are starting to price mattresses as the one we have is about 12yrs old from what he remembers. He had it before we met in 2005. i am willing to try just about anything to help me fall asleep. Currently i take one benadryl, (1) 20mg celexa, and (2) 20mg cymbalta at night and i know it doesnt' last long enough. Any ideas? I am tired of causing him to worry about my breathing (severe allergies that i get shots for) and scaring him with restless legs.

Hi sweetie glad you found a good doctor. From my experience with Chiari in the past year and a half I am also at my wits with sleepless nights. I’m looking into the decompression surgery very soon because my symptoms are getting worse. However as far as the breathing at night and your sleeplessness, perhaps it is that you are not getting enough oxygen during your sleep. You may be experiencing sleep apnea or it could be your heart beating too fast / arrhythmias which is what I have… . sleep apnea and arrhythmias. It can also be the Benadryl which causes your heart to race at night while you’re sleeping and you don’t even know it and is causing you to wake up exhausted Usually when you wake up exhausted during the day and you can’t function it’s because you are not getting enough rest which therefore the cause may be not getting enough oxygen during your sleeping time so you may want to look into why you’re not getting getting enough oxygen at night. I also get the restless legs, spasms all over, ringing of the ears as well as back pain along with the zillion symptoms of Chiari.

You may want to do a sleep study test? Usually they do them in the hospitals. Either a pulmonologist, a cardiologist or your Neuro Dr. can request this test for you. My sleep study test showed that I was not breathing at night and not receiving enough oxygen. Strangely enough I had the sleep study test done even before I knew I had Chiari a few years ago. Not getting enough oxygen while you’re sleeping is also affecting your brain not getting enough oxygen, think about it. I personally only take Advil daily and Tylenol if needed but sonetimes I’ll take a half of a Clonopin and that helps me sleep and rest in fact it helps even up to three or four days. All the best with your visit.

Yes you have just describe my entire week past. Everyday BOOM out of no where I have to seek a bed and rest.

I got in to see Dr. Iantosca in Hershey and man was i happy when i left. He looked at my mri's and the "syrinx" my neurologist said i had is most likely NOT a syrinx. He said the size of it was just so small that it is a normal small pocket of fluid that still flows through the spinal column but just had a little extra room. He said its nothing to worry about. BUT because my back and neck seem to have been getting worse each month, he scheduled me for another MRI of the head, neck, cervical spine, and the thoracic spines. I asked about a flexion and he said that it is actually part of the regular Chiari testing they do (can't remember wha the called it). So they are supposed to be doing that too. He said that if the spot hasn't gotten any bigger then it is just as he said and not an actual syrinx. While that is good, i had to officially retire from my Roller Derby because my back and neck have gotten so bad lately. I need the time to focus on getting my body better. And after trying a small cheap version of a TENS product, i think i am definitely going to get a TENS unit for at home. :-) OMG how good the small spot felt on the lowest setting! LOL Have any of you ever used one? When i did the research on them, i found that even though they use ultrasound gel for them, you can also use a pain cream and the pain cream will actually HELP it! I am so happy i am able to see this doctor, even if he is a 2 hr drive one way. It is so worth it!!!! Andmy mris are scheduled for the same day as my next appointment because they get the results right away and get them to the drs office for my appointment. LOVE IT!!!!! :-D

I am jealous that you get to use a tens machine those are the best. However if you have any electrical problems with your heart like arrhythmias (like myself) they can be very dangerous. Unfortunately the only type of relief and therapy that I can get is massage therapy. Glad to hear your news … hoping all goes well!! God bless

Jozy, yes i am a lucky one i guess. as long as i keep it on a low setting. :-) most of my nerck and back problems are related to teh muscles and such so it should help. But other stuff it won't help with. I don't have any problems with my heart, just my asthma, allergies, and stomach problems. LOL You know how hard it is to keep it all in check? Then i have people tellin gme this will help, that will help, etc. I say no, it won't because of i did that, then this will flare up. Oh well, i at least know how ot control each one to a certain degree. Blood sugar is my hardest though lately.

Steve, i am so glad to hear that the doctor your son will be seeing has given talks on chiari. I would make sure you have read transcripts or at least a general info from his talks. Just to make sure he is on the same page as you may be. My doctor in Hershey is actually at a Children's Neurology section but he works on adults too. He really knew what he was doing so that eased my mind. Maybe call his office to ask about a consult with you and your wife to discuss how you want to approach the subject to your son? If he has dealt with kids then he may have some ideas as well. but, its only a suggestion so you don't have to. :-)