Hello Dear readers!
I am so sorry for being MIA, but as most of you know, Chiari and EDS can be horribly unpredictable. I haven’t slept or really gotten any rest in about a week. Haven’t been able to eat much due to nausea ect. I did want to share something that I and I know many of you in the Chiari/EDS community have been championing for, it looks like the state of Pennsylvania is going to pass the Compassionate Marijuana Use bill.
Now, While Chiari/EDS aren’t specified on the bill, traumatic brain injury and chronic pain ARE included, which is huge! At the same time, we can submit a petition starting in July 2017 to have other conditions included. This is something I will be working very hard on in the next year and a half to make sure all of us who need treatment can get it, and hopefully expand the bill into other states.
Here is the bill.
Its a little difficult to read through, but you get the idea.
What do you think about this idea readers? Are you on board with marijuana use for pain control?
I am interested to see what the community thinks about this topic!
Look forward to hearing from you community!
- Chronic fatigue, often diagnosed as CFS/ME
- Chronic Pain of ALL kinds, including RSD/CRPS, arachnoiditis, neuropathies, radiculopathy, neuralgia, fibromyalgia, etc. often invisible on scans
- MCAD (Mastocytosis or the newly recognized Mast Cell Activation Syndrome aka MCAS – ICD-10 code to come soon hopefully in 2014)
- Fibromyscular dysplasia (deformity of the arteries, especially leading to the kidneys)
- Autism Spectrum Disorders (all levels) and related disorders (OCD, ADHD, SPD)
- Mood disorders, especially anxiety and depression (likely organic in origin and/or secondary with ASD)
- Thyroid issues (high and low, often auto-immune despite normal TSH “levels”)
- MS and other auto-immune disorders (RA, Sjogren’s, Lupus, Ankylosing Spondylitis, OA, more)
- Arthritis of all kinds, especially early onset Oestoarthritis in the spine, neck and hands, but RA common also (really AI also)
- Irritable Bowel Syndrome (IBS) & proclivity toward constipation, but with quick flips to diarrhea (likely food allergies/MCAD)
- Incontinence at any age (often from occult tethered cord and/or MCAD or allergy induced)
- Frequent (seemingly idiopathic) nausea and vomiting (may be from impinged vagus nerve/MCAD/hiatal hernia/gastroparesis/Chiari)
- Dysautonomia of all kinds, most notably poor temperature and BP regulation (high or low, see POTS below)
- Raynaud’s phenomon (blood vessel constriction from cold, stress) pronounced “ray-noe’s”) – a form of dysautonomia
- POTS (Postural Orthostatic Tachycardia Syndrome) – a subset of dysautonomia involving BP drops and syncope (fainting)
- Hyperadrenergic POTS (aka HyperPOTS) – a subtype of POTS involving more variable BP and adrenaline responses
- NMH (Neurally Mediated Hypotension) – another form of dysautonomia affecting BP
- Livedo Reticularis (purplish/white “mottling” on skin surface from likely small capillary spasming)
- Frequent joint dislocations and subluxations (partial dislocations) or being so-called “double-jointed“
- Mitochondrial disorders and deficiencies
- Kidney trouble including diabetes insipidus
- Diabetes miellitus and Metabolic X syndrome
- Sensory Processing Disorders
- Tinnitus (ringing in the ears)
- Insomnia (trouble falling and staying asleep, multiple causes in the EDS patient including pain and hyperadrenergia)
- Sleep apnea, both obstructive airway issues and Central Nervous System (CNS) Apnea (neurologic in origin requiring a sort of breathing “pace maker”)
- Cranio-cervical settling (which may cause the CNS Apnea) and attendant neuropathic issues and glaucoma
- Hypotonia (unusually weak muscles despite “training”) sometimes presenting as “floppy babies”
- Syncope and pre-syncope (fainting and near fainting) and unusually low BP
- Dizzyness (with or without syncope)
- Common Variable Immune Deficiency (CVID) of all kinds leaving us prone to frequent & worsening recurrent infections of all kinds, especially respiratory & UTI’s
- Interstitial cystitis
- Lymphedema, Edema and angioedema (the latter comes with MCAD triggering usually)
- Lipoedema (not the same as lymphedema, also spelled “lipedema” in US) an adipose (fat) tissue disorder causing unavoidable weight gain
- Tendonitis and bursitis of all kinds (aka “soft tissue rheumatism”)
- Keratoconus or thinning /”pointy” corneas
- Uveitis (inflammation of hte uvea of the eye, common with ankylosing spondylitis)
- Varicose and spider veins, often early onset
- Migraines and headaches of ALL kinds and durations, (often driven by hydrocephalus from MCAD)
- Food and drug allergies and sensitivities with a lot of paradoxic and unexpected super sensitive reactions
- Bleeding disorders including Von Willebrand’s
- Mitral valve prolapse
- Aneurysms of all kinds, anywhere
- Easy bruising often from no apparent cause or injury
- GERD (weak hiatal sphincters and MCAD can contribute here – the stomach produces acid in resopnse to histamine from food reactions)
- Gastroparesis (slow stomach emptying) and dysmotility (poor digestive movement) beyond just constipation and IBS
- Chiari malformation, including occult (hidden) Chiari aka “Chiari Zero” formation (“saggy” hind brain, often protruding through the back skull, but not always)
- Tethered cord
- Syringomyelia or “syrinx formation” in the spinal cord (may be caused by long term hydrocephalus)
- Spondylolysthesis, spondylolisis (misalignment of the spinal vertebrae in various directions – front -to-back, side-to-side)
- Cranial cervical instability, esp C1-C2 “owl turns” and “bobble-head” issues (trouble keeping head on neck, literally, with resulting neurologic issues)
- Thoracic outlet syndrome, brachial outlet syndrome
- Seizure disorders and epilepsy
- Fallen arches (pes planus)
- Bilateral hip dysplasia (ability to “pop” – aka sublux – hips out and back in easily, which should be avoided!)
- Cerebral Spinal Fluid (CSF) leaks including CSF rhinorrhea, CSF otorrhea (CSF leaks out nose and ears) or anywhere along the dura (lining of spinal column & brain)
- Celiac disease and all forms of gluten sensitivity
- Malabsorption and malnutrition and nutritional deficiencies despite diet and even supplementation sometimes. (Poor absorbption).
- Electrolyte imbalances (often low potassium)
- Osteopoenia (low bone density) and osteoporosis (brittle bones), often early onset
- Scoliosis (deformity of spinal curve) of all kinds including kyphosis (aka “roundback”, forward bent spine)
- Hiatal hernia (stomach to esophagus sphincter) and all other forms of hernias just about anywhere (inguinal, duodenal, abdominal, etc.)
- Costochondritis (pain at front rib attachment point to sternum)
- Chondromalacia (cartilage loss) of all kinds, especially patellae (loss of cartilage in the knees, but can occur elsewhere, e.g. hips)
- Frozen shoulder
- Petechiae (dark purplish spots, essentially flat blood blisters under the skin, common in those with MCAD with high heparin levels)
- Metal and other environmental allergies, especially nickel sensitivity (ELISA testing often helpful, pre-test all implant materials)
- Diastasis recti, (splitting of abdominal wall along the midline) even in males and unpregnant females
- Striae aka “stretch marks” even in males and young (prepubescent) females (i.e. not always associated with pregnancy!)
- Strabismus (crossed eyes) or wandering eyes from likely weak eye ligaments
- Bruxism (jaw clenching, tooth grinding)
- TMJ pain and issues, subluxations and dislocations (Temporo-mandibular joint syndrome, jaw alignment trouble)
- Restless Leg Syndrome (RLS) and leg cramps (often eased by increased magnesium)
- Neuromas in the feet
- Plantar Fasciitis
- Chronically low Vitamin D and B12 levels (caution urged for those with MTHFR mutations with the latter, may need a different form of Vit B)
- Weak or crowded teeth, many need early or partial dentures
- Urticaria (hives) and Urticaria Pigmentosa (persistant hive-like patches, part of MCAD above)
- Hair loss early, and even in women, especially those with signs of MCAD or iron imbalances
- Deviated septum (misaligned nasal cartilage)
- Trouble swallowing & choking issues, often neuropathic in origin from CCI, sometimes due to floppy laryngial tissues
- Esophageal spasms (can extend to anywhere along GI tract also)
- Skin tears or rips, trouble suturing, would dehiscence (trouble healing post surgery, especially soft inner tissues)
- Liver problems, including fatty liver and lesions, enlarged liver
- Enlarged gallbladder & spleen, appendicitis (may be MCAD driven)
- Vocal cord dysfunction
- Hearing loss from a variety of causes, some bio-mechanical, others neurologic
- Diverticulitis and diverticulosis
- Crohn’s and colitis
- Leaky gut syndrome
- Retinal detachment and tears (rips)
- Keratoconus (“pointy”, droopy corneas)
- Dry eyes and blepharitis (bacterial eyelid infections), as well as retinal tears and more
Hello my dear readers.
This will be a very short post. I am not doing well physically or emotionally. Today was an especially rough day, but I wanted to share a quick post with you. Please go read them. They are enlightening.
I will be writing a very important blog post this weekend for a dear new friend Cat. She lives in Australia, and is struggling to come over here to the USA to have her THIRD brain surgery.
Thank you all for your kind words, love, and support. I will be back with you all soon!
A letter from a doctor to those with chronic diseases
Hello dear readers.
I have been away from both blogs for a little bit lately. My pain has been horrible, uncontrollable, and making me wish it was all just over. Its hard not to have those thoughts when you live with the pain I and others do. I’m still not feeling well enough to write, so my husband and care taker wrote a post for me from a caretaker and spouse’s point of view. Please welcome Jason Thompson.
When my beautiful wife was first diagnosed with Chiari in 2013, it changed our lives forever in ways we never could have imagined. It has created new obstacles, unforeseen challenges and persistent frustrations. However, despite all of those hurdles, it has also given me a deeper appreciation for what matters most in life, and an even deeper appreciation for the incredible woman I married almost nine years ago.
The transition hasn’t been easy for either of us. It’s not just a few minor changes; it’s a whole new way of life. Being married to someone who suffers from a chronic condition like Chiari and EDS means taking on new responsibilities, but it also means finding new and meaningful ways to support your partner. For too long, I thought that just meant getting up early and doing the dishes or folding the laundry (and yes, taking on a larger share of the household responsibilities is certainly part of the equation). What I’ve come to realize is that supporting a partner emotionally is far more important than chore you might complete around the house.
Loving someone who lives with chronic pain is a constant struggle because the pain can twist their mood and outlook in awful ways. But that same sweet person still stands in front of you, crying out for understanding, acceptance and love. Pain takes away so much; loving someone who is in constant pain means finding new ways to give our loved ones a life worth living.
If someone you love has been diagnosed with Chiari, EDS or another condition that causes chronic and debilitating pain, here are several pieces of advice I’ve found to be invaluable.
Support, Don’t Demand
One of the areas where my wife and I have struggled most stemmed from my habit of dictating what she should and shouldn’t do based on her pain. It’s OK to have a conversation from time to time to voice your concerns if you suspect your loved one may be doing something that is counterproductive or even a little bit dangerous. However, this doesn’t mean you should treat them like a child. Allow them listen to their bodies and do what they are capable of doing. Be willing to discuss their capabilities and limitations, and offer suggestions of ways you can support them rather than making them feel like an invalid. Having an honest discussion about these sorts of things is paramount. But lecturing your loved one and treating them like a toddler will only breed resentment.
This one seems like it should be obvious, but I can’t tell you how many times I’ve caught myself trying to “fix” my wife’s problems as quickly as possible when she says she’s hurting. Sometimes, my first inclination isn’t to listen; my priority is always to do whatever I can to make her feel better ASAP. In many ways, I think that’s a natural male instinct to adopt the role of a protector, and many parents doubtlessly feel the same instinct with their children. But oftentimes, your partner or loved one doesn’t need protection or a solution. They just need someone to listen and understand what they are going through, and to be able to connect with another human being. Pain is isolating, so when someone in pain reaches out to you, the best thing you can do is reach back. Not with a bottle of pills or a list of activities they should or shouldn’t do, but with an open hand and a sympathetic ear.
As I alluded to earlier, pain can often bring out the worst in people. But it is important to realize that the anger and depression associated with chronic pain won’t last forever. Someone in the throes of pain might withdraw or lash out when they are feeling their worst. Understand that if you respond to that negativity with more negativity, you only have yourself to blame. Instead of responding to a terse or angry comment with frustration or angry, focus on the reasons why they might be reacting in a negative way. If you know they are in pain, suggest ways to help. If that fails, give them reassurance that you care about them, and be willing to give them some space if necessary.
Most of us don’t fully comprehend what it’s like to go to sleep at night wondering if we’ll wake up tomorrow in too much pain to even get out of bed. I’ve heard too many stories of people who have Chiari whose partners jumped ship because they couldn’t handle the situation. I often wonder how many good relationships have gone down the tubes due to an unwillingness or inability to adapt to a partner’s disability, and more importantly, how many goodhearted people have been cast aside due to simple misunderstanding or just plain selfishness. In the end, leaving behind a good wife, husband or loved one due solely to their medical issues will never enrich your quality of life.
Patients who have chronic conditions don’t have a choice. They have to live with pain and physical limitations every day. But everyone around them has the ability to make a choice. We can decide whether to reach out a helping hand, offer a shoulder to cry on, or even just provide a sympathetic ear. Believe me when I say that every time we’re willing to make that kind of choice and give a little piece of ourselves, that love is appreciated more than we could ever possibly fathom and returned tenfold. And perhaps just as important, it shows us the love we have within ourselves.
When we are in pain, we don’t always take into account how those around us are feeling, nor can they truly understand what we are going through. I hope this post will be able to help some of you talk to your loved ones, and help them understand what we are going through.
Stay positive my dears!
As my dear readers and followers know, I have been having a really tough time lately. I don’t feel the need to dredge up the details, things just haven’t been good.
Those of us with chronic pain sometimes have those “why me” moments. Not that I feel sorry for myself, but there are days when I wake up, and my pain and limitations just get to me. Today started out as one of those days.
That was until a kind and dear person contacted me to let me know she was thinking about me, and had written me a poem to brighten my day.
Most people don’t realize that all it takes sometimes is just a kind word or message to really make someones day. No matter what someone may be going through, reach out to them and let them know you care. It can make all the difference in the world.
I was thinking of you today when I took my morning walk, I stoped to admire a flower struggling from under a rock.
The rock was strong and made the flower tilt, but nothing seemed to stop it as it thought it would never wilt.
Ever up ward it stretched reaching it’s petals towards the sun, but no matter how much the rock tried the flower seemed it had won.
To remove the rock would kill the flower with all the hard work it had done, to overcome such obstacles such as this little flower had won.
So, I continued on my walk and that’s when you occurred to me, always meeting obstacles but always gaining control, you never let things stop you from going where you want to go.
So I thought I’d write this poem for you,and every word of it is true, and bring a smile to your face and tell you I am here for you! Have a wonderful day Christina!!!
Woke up to a horrible comment on my Facebook the other day, but the day turned out alright in the end. Sometimes you have to look past the stupidity of people. You can’t educate those that don’t want an education. I decided to delete the negative comment, but wanted to share with you readers what I said in response. I don’t advocate retaliating or getting nasty, but I felt like something needed to be said.
“You don’t know anything about me, and it is OBVIOUS you don’t know anything about my condition. Before you make a snide and hurtful comment on what is a labor of love, why don’t you educate your self. Chiari is a progressive condition. I also have Ehlers-Danlos syndrome. My surgery WAS NOT A FIX. Do you want to know what my surgery did for me? It kept me from dying and made me WORSE. Not that its any of your business, but I was there for my husband EVERY SINGLE DAY he was in the hospital. I am not supposed to drive, but I drove and hour round trip every day for two weeks to see him and help take care of him. Even when my pain was at its worse, I still was by his side with no thought for myself.
This condition will kill me at a young age, but I guess I should just “take the fix the drs gave me and be happy” as you so eloquently put. Please educate yourself before you start talking about something you have no clue about. That I needed to get over my condition, I should be happy with the fix the drs. gave me. Was I even there for my husband when he got sick? I need to get over my condition and move on.
I gave myself a few days to think about this post. I wasn’t sure if I should give this person another thought or a minute of my time, but then I realized something needed to be said. People with invisible diseases face prejudice EVERY SINGLE DAY. It needs to stop. We need to stop judging others period. You have no clue what someone is going through. How about the next time you open your mouth to say something ignorant, or decided to hide behind your keyboard and make comments, you stop and actually think about what your saying. Ask questions. I can say for myself I LOVE when people want to know about my condition, because it means they care, and want to learn.
Ok. Rant over! Now on to the positive. I was recently asked to write for Hope Soup. So far I have written three posts for them, A Child With Chiari, What You Don’t See, and Intimacy and Invisible Disease. My post “A Child With Chiari”, broke records for viewership on the blog! I am also helping Hope Soup set up and run a foundation, The Hope Soup Foundation, to help others with invisible diseases get the help they need to get treatment, connect with others, and hopefully find answers. So Life with Chiari has been a busy gal! I am not giving up on this blog either. I will still be writing different material for both. After all, my webmaster has to eat!
So dear readers, please visit me over at Hope Soup, and be on the look out for the foundation to get started!
Its good to be back to blogging! I have missed you readers! I want to share something with you that really got my blood boiling this week.
This weekend, I went back to Ohio to visit my Dad and other family on his farm. I was having the time of my life. As most of you know, I hardly ever get to leave my house, so this was huge for me. I got to go to a horse show, took all kinds of photographs, and had a wonderful time seeing people.
I am going blind in both eyes now, and I want to experience everything I can before Chiari steals my sight as well.
Since my Chiari community is such a huge part of my life, I wanted to share my good times with my Chiari group. The backlash I received for riding a horse just turned my stomach and broke my heart. While most of them were happy for me living life on my terms, quite a few more said some really horrible things to me. The vicious things said on my post got so bad the admin of the group had to delete it. Its such a shame that we all have this horrible condition, but we still feel the need to gang up on one another. We need to come together as a SUPPORT GROUP. If you don’t like a post, or you feel someone is endangering themselves, there are more positive ways to go about it. There is no reason to make someone feel badly because they decided to finally take their lives in their own hands.
I understand there are a lot of things we aren’t “supposed” to do. I get it. I really do, but I am not going to spend what precious little time I have left on this earth rotting away in my chair! I’m going blind, and my body is betraying me at every step. I can’t sit back while life passes me by just to get a few days more. If I had fallen off that horse and died, I would have died happy. For the first time in a very long time, Chiari and my pain didn’t hold me back. I was the master of my day, and it was one of the best of my life. I don’t want my friends and family to look back and say, “Sure, she had a few more years, but she never left the house.” I would rather them say, ” Christina lived her life to the fullest. We miss her and love her, but she didn’t let her condition hold her back from her adventurous spirit.”
So go dear readers! Live your life. Seize the day. You have Chiari, or EDS, or some other condition, but it by NO MEANS has you!!!
Photography Courtesy of Carousel Photography
I have been having a really rough time getting my Chiari and EDS symptoms under control, so I thought I would share with you some things that have helped other Chiarians when they are having problems. They may help, they may not, but it never hurts to try. Please do not try any activities that you have not first cleared with your doctor!
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 Chiari and syringomyelia 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, but some insurances with cover the cost. 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. A Chiari Sister recently died from a lumbar puncture.
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 Chiarians. 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. Increase foot/ankle support by wearing Nike, Reebok or New Balance Air cross-trainers or similar highly cushioned/ supported shoes (i.e. cushion the cerebellum). Running or walking shoes typically do not have the proper support. The cross-trainers are sold in most sneaker stores. Since each brand is a little different, it is recommended that you test the different models before purchasing. Use gel pads as inserts in your shoes , put them in before you choose the shoes since they take up more room . Berkinstock makes a similar insert pad that’s good too. These help when fashion dictates something other than athletic shoes.
24. 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.
From Andrea Traugott:
Using a computer is probably one of the worst Chiari symptom exacerbators there is. Sitting, 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. 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.
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.
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 Mediflow Pillow. Other types use a sobakowa pillow, or 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.
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, bone pain or pain from the hardware. Also, 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 neck 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 it. 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 feather 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 re position 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. 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!
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.
(Meniere’s disease is a disorder of the inner ear that causes spontaneous episodes of vertigo — a sensation of a spinning motion — along with fluctuating hearing loss, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear. In many cases, Meniere’s disease affects only one ear. People in their 40s and 50s are more likely than people in other age groups to develop Meniere’s disease, but it can occur in anyone, even children. Although Meniere’s disease is considered a chronic condition, various treatment strategies can help relieve symptoms and minimize the disease’s long-term impact on your life.)
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
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 and sew it to fit my neck. Soak in water for a few hours and it holds the water turning into a firm gel. This then evaporates in the heat over several hours keeping you cool. It makes a huge difference when its 90 or 100 degrees outside. I like using old silk ties from the thrift shop for these. They come in great fabrics and colors for pennies.
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.
We found ACE manufactures an ice pack that is reusable and soft (conforms to the body). It’s order number is 207516. Hope this helps someone.
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 Chiari.I know how bad straining for any purpose is to our well being.
I also found two other things that help. I use a rocking chair in the mornings while at my desk. I don’t have the faintest clue why, but the motion of the chair helps some. Set a timer to go off about every half hour and do five minutes of stretching . If I sit too long, I get stiff and achy.
This list can be given to anyone, anytime, anywhere. It is a compilation of suggestions made by WACMA members over the past five years.
I hope some of you were able to find this helpful.
Stay Positive Dear Readers!!
This is from my friend and Chiari confidant Aimee Zemanek 🙂 I am re posting this with her permission.
It has a lot of great info and is another perspective on Chiari.
Aimee’s To-Do List/Recommendations for Chiari Decompression Surgery
Remember that it takes a full month for every 15 minutes that you are under anesthesia before your body fully recovers. You might feel great a few weeks after surgery but DON’T over do it. You will get tired very easy. Listen to your body.
I had my stylist shave my hair for me before surgery. Ear to Ear from the Occipital Ridge down. Don’t worry about your hair… it grows back! Mine was completely back in about 8 months. I occasionally get sad that no one can even see my scar any more because my hair all grew back.
*ASAP* Look into and see if you can get this pillow ordered and delivered in time. I got mine from Med Pillow. I still sleep on mine every night. If you are a back sleeper it will help to keep your staples away from the pillow. If you are a side sleeper, then that hole supports your neck muscles while your shoulder fits perfect in the middle.
Print out the form for a temporary handicapped parking permit and have your surgeon sign it BEFORE your surgery. That way you will have it already when you get out of the hospital. Here in Texas they gave me one for 6 months. This will prevent you from having to walk so far during recovery. You get these at the same place you pay for your car registration and get new license plates.
Plan a dinner party or something for the night before. Don’t sit at home and think about what is going on the next morning. Go have fun with friends and get some good food.
Get gift cards for area restaurants so you can send visitors to go pick up food for you since hospital food sucks. I also had gift cards for the area bubble tea, frozen yogurt and gelato places (is there a pattern here?)
Have someone with you at all times, 24/7, around the clock. No exceptions, while you are in the hospital. I would say this should be the first couple of days at home too.
Most important! Listen to your body! We are not all one-size-fits-nobody. We know our bodies better than they do! (They kept saying I had to stay on a “clear liquid diet” in right after surgery ICU but that overly sweet apple juice, jello and sherbet just made the nausea worse. I sent my dad out for milk. The nurses were furious but I never got sick again and was eating a Wendy’s hamburger the next day for lunch.) My body was used to drinking a lot of milk (like 3 gallons a week) because I had been taking anywhere from 7 – 22 prescriptions every single night for the past 4 years and 4 ½ months.
I will try to put this one delicately. Anesthesia basically puts our entire body & all of the internal systems to sleep. It will take a little while for some of these systems to wake up… including your digestive system. My Suggestion would be to make sure they give you some sort of “Dulcolax” or “Ex-Lax” type medication before you leave the hospital. You do not want to be dealing with those types of issues a week or so later. Straining with 15 staples in your head will make you want to pass out. *If you catch my drift
Ear Plugs… Hospitals are loud!
Make sure you have button-down or large V-neck pajamas to put on after the catheter comes out… you will want out of that dumb gown.
Don’t forget socks… preferably if you can find the no-slip kind with the nubbers on the bottom.
Wet-wipe face cloths. Washing your face will feel good even when you can’t get out of bed.
Take your own pillows in colorful pillowcases (so you can tell which ones are yours).
Take chap stick… hospital air dries out your lips.
Straws that bend – bending your head to drink will be an issue at least until the staples come out.
Hair Scrunchies / Rubber Bands, this will help keep your hair away from the incision, and make it easier to wash.
Scarves! This cold weather we have been having will be very sensitive on your neck / staples / incision. Especially with part of your hair missing the back of your head/neck will get cold. 13 months after my surgery and I still love my scarves.
The first few days at home, sleeping in a recliner might be more comfortable than sleeping on your bed.
Once you get home, if it is possible try and situate yourself somewhere in your home that is on the one level with a bathroom, kitchen, bed … If it is possible. Stairs after surgery will add pressure to your incision area and plus you might not be able to walk them alone. Please think of safety as well. I had a hard time walking where I was going because I couldn’t tilt my head down very far. The first few weeks when you get home you need to be pampered. No lifting, bending over, or reaching over your head. (Nothing Heavier than a Gallon of Milk)
If possible purchase or get a loan of a shower chair for bathing and you use a hand-held shower hose to wash down your body to get refreshed. And if/when someone can help you. Have them present, if it is someone you trust they may even wash you down gently.
For your care takers…take a comfy pillow / blanket for the waiting room since they probably won’t let anyone sleep in the ICU room. Have a CHARGED phone in case they need to send you a text message.
When we washed my hair… I put my remaining hair in pig tails and leaned over the double kitchen sink. My mom held a towel over my incision and washed one ponytail at a time (one in each side of the sink). This will be 1000* easier if you have a spray nozzle on your sink.
Once you get home… someone can use a cotton ball and baby oil and get the sticky glue residue off of your scalp from the band-aids. Take this process slow and easy.
Oh… and if you think you are going to sneeze… brace yourself and your neck. Put your hands behind your head with your elbows in front of your face and hold on. I’m not trying to scare you… but sneezing with 15 staples in the back of your head hurts worse than the surgery itself. ( Hurts like hell with stitches too! Hurts even after surgery esp. when you have fusion!!)
Check out all the t-shirts available that talk about our condition…I ordered the “too much brain to contain” shirt and wore it home from the hospital. (just make sure you don’t buy anything that says The Chiari Center Foundation… sadly, that is an organization that is being investigated for embezzlement and making money off of people who are suffering.
The drive home was very stressful. Be very careful of bumps and stuff like that.
After you have recovered, you might want to do some light exercise…but you need to be very careful about your neck and lifting things over your head. I go to Slo-fit once a week (the one in Plano, Texas). They know all about Chiari because I have been going there for almost a year now. It is very slow strength training to help us get back the movement in our numb arms, etc.
Save a pain pill for the office visit when they take out your staples. The staples coming out wouldn’t have been so tender but my hair had already started growing back and they were pulling the hairs out with the staples.
A BIG thank you to Amiee for sharing her Chiari knowledge. I still look to her when I have questions!
Thank you all for supporting my blog, and listening to us in the Chiari community. I can not stress enough how important it is for the medical community, and the general public to listen to us and take us seriously.
You don’t need to take any of your regular medications to the hospital. They will give them to you there. Please take a list of everything you take, even over the counter medication.
Make sure you have your MRI with you, if they don’t have you do one there.
You don’t need a hospital bag. You will be pretty drugged up and won’t care. I brought snacks and books and didn’t touch anything. The first few days I was on a fluid diet, and after that, they feed you really well.
Make sure someone can stay with you the whole time. It was so important because you won’t remember anything. My husband had to stay on top of them to make sure I was getting my pain meds. STAY ON TOP OF THE PAIN MEDS!!
Make sure when you go home, they give you a script for your stomach. (Zofran) I threw up so much when I got home, because they gave me something for nausea in the hospital, but not for when I got home. I ended up in the hospital 3 days after I came home because of dehydration.
The car ride home WILL SUCK! Some one else will need to drive you, slowly, and make lots of stops. Make sure you take pain meds before you leave to go home. It was the most painful, nauseating experience of my life. Make sure you have a pillow or two to help you get comfy. I found holding a pillow helped me a lot. Have something to throw up in, and a lot of water.
I had surgery out of state. Contact your regular doctor before you go to get an appointment about a week after you get home. You will only get about a week of pain meds and will need to get a new script from you family dr. It’s a NY law that they can’t give you any more meds to take across state lines.
Food will taste funny after you get home. I couldn’t eat anything sweet for months. It tasted like garbage to me. It is from the pain pills and the zofran. Make sure you are eating as much protein as possible. It will help with the healing.
If you are getting really sick, you might need a different pain med. They had me on two Percocet every 6 hours plus Valium. I couldn’t stop throwing up and hallucinating. Family Dr. switched me to Tylenol 3 and I was just fine and the pain was more than controlled.
You won’t be able to bathe. Don’t even try. For the first few days, use baby wipes to clean what needs to be clean. You just won’t have the energy to do otherwise. I also just stood in the tub and had my husband wash me with a wet rag. I tried to take a bath, but got stuck in the tub. Your neck muscles have just been cut open and can’t support that type of movement.
Make sure you are taking some sort of vitamin. Your body has been through a lot and you need all the nutrients you can get! I found after the fusion I couldn’t swallow a regular vitamin, so I got Flintstones chewables.
When you get home, don’t try to sleep in bed. Get three good sized pillows and set them like steps on the couch, with one cradling your neck, one under your shoulders, and one in your mid back that way you won’t move around. It is actually pretty comfy and if you don’t have a recliner, get one or borrow one. I spend my entire day in the recliner. It is comfortable, and it is easy to get out of and into.
It helps to keep a log of symptoms from day to day, because you will have a very hard time remembering. I log my symptoms, when I take my pills, how I am feeling ect. That way if you have an issue, or a run of issues, you can send that to the dr. I also keep track of when I went to the dr. and what was said while there in my log. I use a spread sheet, but anything will work. This is also a good resource if you need to file for disability
Don’t try to rush into doing stuff even if you are feeling better. I made that mistake and it set me back. YOU JUST HAD BRAIN SURGERY! You deserve to have help! I hired a lady to clean my house once a week, and I made some meals and froze them before I had surgery. Do whatever you need to to make sure you do nothing! You may feel like you can, but trust me, just don’t!
Don’t sleep in your collar if you can help it. You will pay for it the next day. I found that a good way to support my neck and give my self a break from the collar was a bath towl draped around the back of my neck while I was in the recliner.
If you have pets, make sure you arrange for someone else to take care of them while you are healing.
Do not be afraid to call or email your dr if you have any concerns. I had a headache for 4 days and started to panic. He reassured me, got an MRI. This is a serious surgery, and it’s your body. SO SPEAK UP!
Make sure you have some nonstick gauze and medical tape. It will hurt to change your bandage because it sticks to your hair. Two strips of tape on the top, one in the middle and one on the bottom does the best job. You only really need to change it every 4-5 days as long as there is no leakage. After the first week, you will have to pat it twice a day with an alcohol pad. Don’t rub it, just pat it. You don’t have to take your bandage off completely, just lift the bottom of it. Make sure you keep an eye on it for any sign of infection. That first week I took my temp every day to keep track.
You WILL feel like shit! Make sure you nap. A lot! You probably won’t get much sleep at night, so make sure if you are tired during the day you are sleeping. That is something I really struggled with.
Make sure you have clothes that are easy to get on. House dresses are best because you are not going to feel like bending over. I actually can’t bend over, so anything that buttons up is easy to get on. They sell them at Kmart in the pj section. It was about three weeks before I felt like wearing pants, sweatpants, and even then my husband had to put them on me. I also didn’t wear underpants because it was too much for me to bend to pull them on and off.
Make sure you are taking some form of stool softener and laxative. I took Senocot –s, but still had a lot of trouble “going”. Make sure you tell them if you don’t have a bowl movement before you leave! I ended up having to have an enema at home because I didn’t have a bowl movement in the hospital, or for a week after I got home. You do NOT want to go through that! DO NOT bear down to have a BM. It will make you feel like someone hit you in the head with a sledge hammer. If you can’t go, just wait it out, and take more laxative. You will slowly have to wean yourself off of them, but pain killers and anesthesia will stop you up like a brick of cheese! Also try to eat a high fiber diet. I got flax meal and add it to everything to add extra fiber to my diet.
I hope this helps. Just remember that surgery is different for everyone, so don’t worry if something happened to me or vice versa and the you didn’t experience it. Any tips feel free to add.