First off, I had an amazing surgeon. I would recommend him to anyone. He took very good care of me, and took the time to answer all my questions. He also didn’t pressure me into having the surgery.
This is what I had done: Posterior Fossa Decompression, tonsillar resection, cranialcervical fusion, duraplasty, and laminectomy.
Posterior fossa decompression – This is a surgical procedure performed to remove the bone at the back of the skull and spine. The dura overlying the tonsils is opened and a patch is sewn to expand the space, similar to letting out the waistband on a pair of pants. The goals of surgery are to stop or control the progression of symptoms caused by tonsillar herniation, to relieve compression of the brain stem and spinal cord, and to restore the normal flow of cerebrospinal fluid (CSF). What this means for me is, they took out a part of my skull. They didn’t put it back, it won’t grow back, it will always be gone, and I will always have to be careful.
Tonsillar Resection – A big part of this disease is that the tonsils of the brain have herniated or descended into the spinal column. The resection means that the neurosurgeon burns off or resect the part of the brain ( the tonsils) that have herniated down into the spinal column. What this means for me is not clear yet. It is supposed to help clear up some of the symptoms, but it can cause brain fog, memory loss, balance issues, ect.
Craniocervical Fusion– Occipitocervial fusion refers to a procedure in which the occipital ( back of the skull) bone is fused to the upper cervical vertebrae. This procedure typically involves the use of rigid hardware, typically titanium (instrumented fusion) Patients usually undergo rigid cervical immobilization following this procedure (cervical brace, halo vest, or custom minerva) until the occiput and cervical bones completely fuse together. What this means for me. I won’t be able to drive. I can’t shake my head yes or no. to look at something, I have to turn my whole upper body. I can’t bend over at all with out exploding pain in my head. I have a hard time eating, walking, talking and swallowing.
Duraplasty – A reconstructive operation on the open dura mater that involves a primary closure or secondary closure with another soft tissue material (muscle, fascia, allograft dura).
Laminectomy – Laminectomy is surgery that creates space by removing the lamina — the back part of the vertebra that covers your spinal canal. Also known as decompression surgery, laminectomy enlarges your spinal canal to relieve pressure on the spinal cord or nerves. This pressure is most commonly caused by bony over growths within the spinal canal, which can occur in people who have arthritis in their spines. Laminectomy is generally used only when more-conservative treatments — such as medication, physical therapy or injections — have failed to relieve symptoms.
I hope this helps everyone understand how extensive our surgery is. It’s not something to be taken lightly!
This has been one heck of a week! May is Ehlers-Danlos Awareness month. You can read more about EDS here. Show your support for the Zebra Community by showing off your stripes! Post your picture on the event page and tag me in it to win an EDS Awareness shirt! The most creative stripes wins!
So an update on me. I am slowly losing my ability to walk. I got a knee brace, but it ended up not helping, so back to the wheelchair. My EDS is progressing faster than expected, which sucks. I started some new medications that I thought were going to help, but so far they are not. I am trying to keep my head up, but its hard to do.
Today marks the one year anniversary of when our lives were changed forever. My dear, sweet Crista Nicole Fultz was cruelly snatched away from us. While the man who took her life will spend the rest of his behind bars, it brings no comfort. It doesn’t bring her back to us. It doesn’t give her children back their mother or her family their beloved sister and daughter.
Crista “did nothing to deserve this,” Hughes said. “She was shot and killed needlessly. Mr. Fensler had a history of domestic-violence offenses and should never have had a firearm.”
Please think before you act. Domestic violence is not a joke or something to be pushed aside or taken lightly. Domestic violence stole Crista’s life. If you, or someone you know is a victim of domestic violence, there is a way out. No one deserves to be abused. That’s not love.
Orange was Crista’s favorite color. Show your support by wearing orange for Crista, and purple for domestic violence awareness.
Its been a rough day readers. So please, go hug the one’s you love.
We love and miss you every single day little sis.
The day you have been waiting for is finally here! As I previously told you about, life with chiari has teamed up with the extremely talented team at Chiari Gear to bring you LWC tees. The design will be white on a background shirt color of your choosing (like the featured picture above.)
We are so pleased to have been asked to support LifeWithChiari.com! Our primary goal is to offer quality, affordable merchandise so that more people can spread awareness. Combined with the information and education found on LifeWithChiari.com, we are making even a bigger impact on the world!
Please use Coupon code: LWC for $3 off your order.
How it works:
We will be taking orders for T-shirts, V-neck T-shirts, Long Sleeves, Sweatshirts and Hoodies through 6/15. Once orders have been received, we will print the design to match the number of items orders. The process to print and ship a new design is approximately 15 business days. So, you will be receiving your order the first week in July.
Every order is shipped directly to you and includes awareness cards so that you can keep spreading awareness long after someone sees your design.
As always, please let us know if you have any questions or concerns! And, thank you for spreading awareness!!
Even if you can’t buy a shirt, please share the link. 100% of the proceeds for shirts sold go to Chiari Awareness and research. As always, thank you all for your love and support in helping to find a cure for Chiari.
Love and hope!
Hello my dear readers.
I am truly sorry for my absence lately. There has been a lot going on in my world. Lifewithchiari.com has partnered with Bearable Bears to help bring a little stuffed happiness into children’s lives all over the world. I encourage you to stop by their page and sponsor a child if possible. There are a lot of little ones out there who need our help!
As for my lateness in posting…
I have been struggling with getting my pain under control. It is hard for someone who doesn’t live with a chronic/degenerative condition to understand what it is like to live in horrible, crippling pain everyday. This is a great article to help understand what its like. Everywhere you turn, people think you are faking, seeking sympathy or attention, your a drug addict, lazy ect. The crazy part is, if I actually WAS a drug addict, I would have no problem getting the help I need.
There is such a stigma attached to people who live with pain as as daily fact of life. (or with any “invisible illness” for that matter.) We even get judged by the people that should be helping us the most. The medical community. I have struggled with ignorance and outright meanness from doctors and others in the medical community. That isn’t to say all doctors are that way, but there is such a need for education, and for us as a chronic pain community to stand up for ourselves. Who knows us better than us?
On that note, most of you know my struggle with pain management. I saw a new doctor today who is starting me on four new medications: Nucynta, Celebrex, Neurontin, and Zanaflex. The doctor didn’t know about my conditions, but he was more than willing to listen to me, and said he is going to do everything he can to help me. I will also be starting aquatherapy, so I will keep you all updated on how that goes!
Also, we have teamed up with Chiari Gear to make Life With Chiari t-shirts! All proceeds from the t-shirt sales will go to Chiari Malformation awareness and research. So be on the look out for those with in the coming months!
Much love readers!
Before I get started on today’s post, I need to give a shout out to a very dear friend of mine. This person, who wishes to remain anonymous, gifted me with the software I need to be able to keep blogging and connecting with you dear readers! As many of you know, I am going blind, and it has become far too hard for me to write posts and reply to emails. I was so worried that I wouldn’t be able to help people anymore, and out of the blue, my dear friend made sure that I can still write, reach out, and advocate for you dear readers! I am extremely humbled by such a generous donation to my cause. Always remember, there ARE good people in the world who only want the best for others!
I hope you have been following my journey on the Chronic Illness Series. You can read my other posts here and here. For those of you new to my blog, welcome! I am glad you are here 🙂 If you have any questions, I am always available. You can find me on twitter or facebook.
Today’s post is one that has touched a lot of us in the Chiari, thyroid and diabetic community. (I don’t have diabetes, but gastroparesis, or GP, is seen often in diabetics.) GP is usually one of two types, idiopathic, (no known cause) or due to damage to the vagus nerve. More often than not, GP is idiopathic unless there is a known nerve damage issue. Many of us with Chiari also have severe nerve damage from years of having our brain stem compressed. GP is considered rare, with fewer than 200,00 cases per year. Naturally, there is no cure, but diet and medication can help milder cases. People can and do die from this disease. There have been cases of patients needing feeding tubes, bypass, or having their stomach removed all together. I know your going to ask, it IS possible to live without a stomach. A feeding tube is inserted straight into the intestines, called a Jejunostomy feeding tube.
So what exactly is GP?
Gastroparesis, literally translated, means “stomach paralysis”. GP is a digestive disorder in which the motility of the stomach is either abnormal or absent. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush food and then propel the food into the small intestine where further digestion and absorption of nutrients occurs. With GP, the stomach is unable to contract normally, and cannot crush food nor propel food into the small intestine properly. Normal digestion may not occur and can cause a build up of food in the stomach.
What are the symptoms of GP?
Symptoms of GP include bloating, nausea, early fullness while eating meals, heartburn, epigastric pain, stomach pain, and appetite loss. Ingestion of solid foods, high fiber foods such as raw fruits and vegetables, fatty foods or drinks, carbonation, nuts, seeds, coffee, caffeine, peppermint and many other foods may cause symptoms. The most common symptoms are feeling full quickly, nausea, vomiting and pain. A person with gastroparesis may vomit undigested food many hours after their last meal. Weight loss occurs often due to not being able to eat or keep food down. Patients are often afraid to eat any kind of solid food for fear of pain and vomiting.
What are the complications of living with GP?
Some of the complications associated with GP include dehydration, malnutrition, malabsorption, undigested food that remains in the stomach hardens and turns in to a bezoar, and an overall decreased quality of life. GP often comes in flares. One day your fine, the next your can’t eat, your throwing up, and so dehydrated you end up in the hospital! If you think you might have GP, contact a Gastroenterologist. It would be a very good idea to start keeping a food log, and write down the foods that cause you problems.
What foods should I avoid if I have GP?
First and foremost, if you have been diagnosed with GP, see a nutritionist. Even if your insurance doesn’t cover one, appointments usually include a free consult. They can help you get the most nutrition out of the foods you CAN eat. Unfortunatly, GP is different for everyone. While one person can handle rice, rice might be on someone else’s avoid list! There is a general list that most GPer’s adhere to, but as always, do what is best for you. Some GPer’s find an elimination diet helpful to rule out what foods give them the most trouble. Here is a good resource from my personal gasto doctor, Dr. Jackson. This is also a great resource if you have questions about testing and possible medications.
It may seem that I am falling apart from my posts, and maybe I am, but I hope that my Chronic Illness Series is of some help to you dear readers. I am starting to feel a little bit like a walking WebMD! 🙂
So while I can no longer enjoy the foodie life I once had, I do still enjoy going out with friends to new restaurants, writing and developing new recipes, and baking my heart out!
Thank you for reading, and be on the look out for the next post in the Chronic Illness Series, Chronic Pain.
Hello Everyone and welcome to the second installment of my Chronic Illness Series. If you missed the first post, you can read it here.
Poly-cystic Ovarian Disease, or PCOS for short, is probably something you may have heard of if your a female between the ages of 16-25. This is a condition I have struggled with since age 12. It has also been the most emotionally debilitating disease I have had to deal with. Most of you know I don’t have children. This disease is one of the reasons. I don’t ovulate because my ovaries have been destroyed over the years with multiple huge cysts. Some of you also know I was scheduled to have a hysterectomy last month, but I couldn’t go through with it. I don’t know as a woman you can ever be ready to lose something so innate to our central being. Even though I have had this condition for the better part of my life, I didn’t KNOW I had it until my husband and I wanted to have children. I was so completely heartbroken, I actually told my husband to leave me so he could have a chance with someone who could give him children. This is NOT an unusual feeling. When you find out your infertile, a lot of women have the same reaction, and that is perfectly normal.
I will get to explaining the disease itself, but I want others to understand how emotional it is to go through the roller coaster of infertility. I still cry every time I hear one of my friends or family members is pregnant. It’s like being stabbed over and over. I want so badly to be happy for them, but at the same time, all I can do is think that I will never get to experience being pregnant, giving birth, and going through all that comes with being a mother. Then there are all of the well meaning people out there who ask, “Why don’t you have kids yet? Look how long you have been married.” Or, “Well you can just adopt.” It’s hard to explain my situation, and it’s hard to have to explain why we aren’t able to adopt. Not that any of this is any one’s business, but I know I am not the only one going through this.
What is polycystic ovary syndrome (PCOS)?
PCOS is a health problem that can affect a woman’s:
- Menstrual cycle
- Ability to have children
- Blood vessels
With PCOS, women typically have:
- High levels of testosterone.
- Missed or irregular periods
- Many small cysts (fluid-filled sacs) in or on their ovaries
How many women have PCOS?
- Between 1 in 10 and 1 in 20 women of childbearing age have PCOS. As many as 5 million women in the United States may be affected, and usually starts with the first period.
What causes PCOS?
The cause of PCOS is unknown. Most experts think that several factors, including genetics, could play a role. Women with PCOS are more likely to have a mother or sister with PCOS. A main underlying problem with PCOS is a hormonal imbalance. In women with PCOS, the ovaries make more androgens than normal. Androgens are male hormones that females also make. High levels of these hormones affect the development and release of eggs during ovulation. Researchers also think insulin may be linked to PCOS. Many women with PCOS have too much insulin in their bodies because they have problems using it. Excess insulin can increase production of androgens which can lead to:
- Excessive hair growth
- Weight gain
- Problems with ovulation
What are the symptoms of PCOS?
The symptoms of PCOS can vary from woman to woman. Some of the symptoms of PCOS include:
- Infertility due to not ovulating. (PCOS is the most common cause of female infertility.)
- Infrequent, absent, and/or irregular menstrual periods
- Hirsutism- increased hair growth on the face, chest, stomach, back, thumbs, or toes
- Cysts on the ovaries
- Acne, oily skin, or dandruff
- Weight gain or obesity
- Male-pattern baldness or thinning hair
- Patches of skin on the neck, arms, breasts, or thighs that are thick and dark brown or black
- Skin tags
- Pelvic pain
- Anxiety and depression
- Sleep apnea
Why do women with PCOS have trouble with their menstrual cycle and fertility?
The ovaries, where a woman’s eggs are produced, have tiny fluid-filled sacs called follicles or cysts. As the egg grows, the follicle builds up fluid. When the egg matures, the follicle breaks open, the egg is released, and the egg travels through the fallopian tube to the uterus for fertilization. This is called ovulation.
In women with PCOS, the ovary doesn’t make all of the hormones it needs for an egg to fully mature. The follicles may start to grow and build up fluid but ovulation does not occur. Instead, some follicles may remain as cysts. For these reasons, ovulation does not occur and the hormone progesterone is not made. Without progesterone, a woman’s menstrual cycle is irregular or absent. Plus, the ovaries make male hormones, which also prevent ovulation.
Normal ovary and poly-cystic ovary
Does PCOS change at menopause?
Yes and no. PCOS affects many systems in the body. So, many symptoms may persist even though ovarian function and hormone levels change as a woman nears menopause. For instance, excessive hair growth continues, and male-pattern baldness or thinning hair gets worse after menopause. Also, the risks of complications from PCOS, such as heart attack, stroke, and diabetes, increase as a woman gets older.
How do I know if I have PCOS?
There is no single test to diagnose PCOS. Your doctor will take the following steps to find out if you have PCOS or if something else is causing your symptoms. If you have PCOS, you will likely see an endocrinologist to help manage your hormones and insulin.
- Medical history – They will ask about your menstrual periods, weight changes, and other symptoms.
- Physical exam – They will want to measure your blood pressure, BMI and waist size. They will check for areas of increased hair growth and for dark skin patches.
- Pelvic exam – They want to check to see if your ovaries are enlarged or swollen.
- Blood tests – To check hormone and glucose levels in your blood.
- Vaginal ultrasound – They performed to examine your ovaries for cysts and check the endometrium. This lining may become thicker if your periods are not regular.
How is PCOS treated?
Because there is no cure for PCOS, it needs to be managed to prevent problems. Treatments are based on your symptoms, whether or not you want to become pregnant, and lowering your chances of getting heart disease and diabetes. Many women will need a combination of treatments to meet these goals.
Some treatments for PCOS include:
Lifestyle modification – Many women with PCOS are overweight or obese. You can help manage your PCOS by eating healthy and exercising to keep your weight at a healthy level. This will help to lower blood glucose levels, improve the body’s use of insulin, and normalize hormone levels in your body. However, it is very difficult with women who have PCOS to lose weight.
Birth control pills :
For women who don’t want to get pregnant they can control menstrual cycles, reduce male hormone levels, and help to clear acne. ( I wanted to get pregnant, so I was put on Spironolactone to control my male hormones) Keep in mind that the menstrual cycle will become abnormal again if the pill is stopped.
The metformin is used to treat type 2 diabetes. It has also been found to help with PCOS symptoms, though it isn’t approved by FDA for this use. Metformin affects the way insulin controls blood glucose and lowers testosterone production. It slows the growth of abnormal hair and, after a few months of use, may help ovulation to return. Recent research has shown metformin to have other positive effects, such as decreased body mass and improved cholesterol levels. Metformin will not cause a person to become diabetic. Metformin isn’t a miarcale drug. (It did nothing for me)
Lack of ovulation is usually the reason for fertility problems in women with PCOS. Several medications that stimulate ovulation can help women with PCOS become pregnant.
“Ovarian drilling” is a surgery that may increase the chance of ovulation. It’s sometimes used when a woman does not respond to fertility medicines. The doctor makes a very small cut above or below the navel and inserts a small tool that acts like a telescope into the abdomen. The doctor then punctures the ovary with a small needle carrying an electric current to destroy a small portion of the ovary. This procedure carries a risk of developing scar tissue on the ovary. This surgery can lower male hormone levels and help with ovulation. But, these effects may only last a few months.
Medication for hormones:
Medicines called anti-androgens may reduce hair growth and clear acne. Spironolactone has been shown to reduce the impact of male hormones on hair growth in women. Finasteride, a medicine taken by men for hair loss, has the same effect. Anti-androgens are often combined with birth control pills. These medications should not be taken if you are trying to become pregnant.
How does PCOS affect a woman while pregnant?
Women with PCOS appear to have higher rates of:
- Gestational diabetes
- Pregnancy-induced high blood pressure
- Premature delivery
Babies born to women with PCOS have a higher risk of spending time in a neonatal intensive care unit or of dying before, during, or shortly after birth. Researchers are studying whether the diabetes medicine metformin can prevent or reduce the chances of having problems while pregnant.
Does PCOS put women at risk for other health problems?
Women with PCOS have greater chances of developing several serious health conditions, including life-threatening diseases. Recent studies found that:
- More than 50 percent of women with PCOS will have diabetes or pre-diabetes before the age of 40.
- The risk of heart attack is 4 to 7 times higher in women with PCOS
- Women with PCOS are at greater risk of having high blood pressure.
- Women with PCOS have high levels of LDL (bad) cholesterol and low levels of HDL (good) cholesterol.
- Women with PCOS can develop sleep apnea.
- Women with PCOS may also develop anxiety and depression.
- Women with PCOS are also at risk for endometrial cancer. Irregular menstrual periods and the lack of ovulation cause women to produce the hormone estrogen, but not the hormone progesterone. Progesterone causes the endometrium to shed each month as a menstrual period. Without progesterone, the endometrium becomes thick, which can cause heavy or irregular bleeding. Over time, this can lead to endometrial hyperplasia, when the lining grows too much, and cancer. (This is why I need a hysterectomy)
I have PCOS. What can I do to prevent complications?
If you have PCOS, get your symptoms under control as soon as possible to help reduce your chances of having complications. Talk to your doctor about treating all your symptoms, rather than focusing on just one aspect of your PCOS. Also, talk to your doctor about getting tested for diabetes regularly.
How can I cope with the emotional effects of PCOS?
Having PCOS can be difficult. You may feel:
- Embarrassed by your appearance
- Worried about being able to get pregnant
You can look for support groups in your area or online to help you deal with the emotional effects of PCOS. Discuss with your doctor about the use of anti-depressants or anxiety medications. You are not alone. You may feel overwhelmed, exhausted and ready to give up, but there is always someone here for you. Over all, do NOT be embarrassed to talk to your doctor about what you are going through. They can’t help you if they don’t know what is going on.
Stay positive dear readers! Look for the next installment of the Chronic Illness series, Gastroparesis.
I am going to be writing a series this week about the other conditions that I deal with on a daily basis. They ALL exacerbate my Chiari issues. Too many times, when I say I don’t feel well, or I am in pain, people just assume its from the Chiari and sometimes the EDS. Unfortunately, for I, and many others, this just isn’t the case. Chiari effects every single function of our bodies, it’s a miracle that we are able to even keep breathing!
This is not a pity post, or a woe is me post. It is meant to be a series of posts for informational purposes, and to help the general public and those with the same conditions realize they are not alone!
On to it then!
There are four types of thyroid disease, Hashimoto’s Thyroiditis (theye-royd-EYET-uhss), Graves’ disease, goiter, and thyroid nodules.
I Don’t want to bore you with information you can just google, so I am going to focus on the type of thyroid disease I have, Hashimoto’s.
Hashimoto’s is an autoimmune disease that affects the thyroid. Your thyroid is a small gland in the front of the neck. The thyroid makes hormones called T3 and T4 that regulate how the body uses energy. Thyroid hormone levels are controlled by the pituitary gland. It makes thyroid stimulating hormone (TSH), which triggers the thyroid to make thyroid hormone.
With Hashimoto’s, your immune system makes antibodies, like for a cold, to destroy your thyroid and cause it to stop working. Over time, the damage can cause thyroid hormone levels to become too low. This is called hypothyroidism. An under active thyroid causes every function of the body to slow down, such as heart rate, brain function, and metabolism. Hashimoto’s disease is the most common cause of an under active thyroid.
Symptoms of a low thyroid include:
- Weight gain
- Pale, puffy face
- Feeling cold
- Joint and muscle pain
- Dry, thinning hair
- Heavy menstrual flow or irregular periods
- A slowed heart rate
- Problems getting pregnant
- Digestive issues
- Dry skin
- Mood swings
What to do if you think you have low thyroid function?
Talk to your family doctor. They can run a blood test to see where your thyroid levels are at. If they are too low or too high, your doctor may refer you to an endocrinologist. An endocrinologist is a doctor who specializes in the endocrine system. The endocrinologist will order their own blood work, and work with you on a plan to get you back to feeling better. There is no cure for Hashimoto’s, but medication can sometimes help with the symptoms. It is a medication that you are usually on the rest of your life. There is also a possibility your thyroid would need to be removed, but that is best discussed with your doctor.
I hope you find this information useful! If your interested in learning more, you can read up on the condition here, and about other thyroid disorders here.
Please look for my next post when I will be discussing the next condition on the list, Poly-cystic Ovarian Disease.
Hello dear readers!
Sometimes, with everything we are going through, we just need a good laugh. A fellow chiarian sent this to me, and I had to share with you all. I hope it gives you a chuckle!
By Wendy Waeghe
First I’d like to say I’m so very glad I had the surgery, I’m 90% better! I have no regrets except cutting off all of my long hair……..myself, “pause for the gasp.” I looked like Mr. Cleans ugly step sister, so just let the doctor/hospital do that for ya. Know that there are many of us who have been in your shoes and will try to answer any questions you may have. Your doctor is still the best place for medical advice. This is just a bit of info to maybe help and hopefully get you to smile.
Here’s what you can expect … from the experience that you are or may go through after brain surgery…
It takes a long time to recover. I know that probably sounds obvious, but this point took a long time to sink in. I got really impatient with myself. I kept wondering, after just a week, when I’d start to feel like myself again. At two weeks, I started to panic. In the end, it took months – months! – before I felt normal. It’s been more than a year now, and guess what? Things still aren’t exactly where they should be. And that’s okay. Healing takes time. Be patient with yourself.
You will be stoned out of your gourd. I was loopy from the medicine, and slept for days. DAYS. I could barely stay conscious for more than a few hours, but I kept fighting it, which was dumb. Just sleep it off. You’ve earned your rest.
You will have the attention span of a goldfish (because of the aforementioned medicine). TV shows will be really difficult to follow, and reading books or email will be absolutely impossible. Even the plots of movies you’ve already seen will be absurdly confusing. Have you tried watching Adventure Time? The episodes are only 11 minutes long, and they don’t really make sense anyway, so you might want to check them out.
It might hurt. A lot. This should probably fall right into the “obvious” pile, but I did not anticipate this. The thing is, getting your head drilled actually causes pain. People will tell you that the brain doesn’t have any nerve endings, but your scalp and your skin do. There’s also brain swelling and extra fluid that causes headaches, and I’m not talking the kind that you get while at work or running errands and take a couple Motrin for either! You will feel like there’s a war going on inside your skull and your brain is losing the battle. You may even throw up. GOOD TIMES. Now is not the time to wait it out or to be tough. You could end up with a headache that lasts for, I kid you not, days. TAKE YOUR DAMNED PAIN KILLERS! You can be strong at a more appropriate time, like at the grocery store or your child’s birthday party. (DID YOU SMILE?)
Nerves take a long time to regrow. When your surgeon cut into your skull, they also cut into a lot of tissue and nerve. Over the next few months, as these grow and heal, they’re going to be crazy sensitive. Every time I shivered, it felt like it reverberated straight across my skull and down into my brain. I’ve found that the best way to calm things down was to gently press a hand onto my head. Just a bit of pressure helped soothe my nerve endings. Also, consider wearing hats to ward away chills. Those can be a @&$ch.
Your senses might reset. I was told about this, and it still amazes me. Sometimes whenever the brain is touched or traumatized, your senses are affected. In my case, I noticed that my already strong sense of smell (This nose ain’t for show, buddy!) was now basically super-human. I could smell things that hadn’t happened yet. I also became acutely aware of the sound of my own voice, which sounded strange and foreign to me. Sometimes it still does. Things normalize after a few months, and I’ve got to admit, this is one of the cooler after-effects of brain surgery.
You’re not going to poop for like, a week. The lower intestine is the last thing to wake up after major surgery. So take all those stool softeners the docs are giving you, okay?
Steroids can you turn into a hormonal, rage-filled beast. The good news? They stop your brain from swelling so you don’t die. The bad news? They transform you into the Tasmanian devil . But, with acne and a huge desire to eat everything in your fridge, here’s a tip: try eating lots of lean protein and veggies, and accept that you might gain some weight anyway. Be responsible, but don’t try to limit your caloric intake or diet. You need to eat to properly heal. It’s not permanent. You’re feeling weird because of the medicine, not because you’ve become Phineas Gage or something… Shesh.
Scar tissue is a @&$ch. Check with your doctor on this one, but after you’ve healed completely, consider massaging the site of your incision to help break up the scar tissue that forms around it (I think that you, like me, will have a hole in your skull as opposed to a metal plate. So, please, be gentle). A little bit of scar tissue protects your skull, but if you have a lot you might feel an uncomfortable pulling across your scalp. Do be careful. Even now, a year later, I get headaches if I massage my suture spot too much.
Your head is going to look like a medieval dungeon. There’s the matted blood in your hair, the weird jelly they put on your head, and the metal staples or stitches holding it all together and … ugh. Oh, and you’ll have weird scabs on your scalp, as well as some bruising. As gnarly as all that sounds, it is, apparently, normal. Obviously, this goes without saying, but you shouldn’t pick at anything.
You are going to wake up crazy thirsty from the anesthesia, and no one is going to give you water. They are concerned you are going to throw it up. So instead, you get to munch on ice chips in an attempt to quench your crazy thirst. Even then you will probably throw up anyway. Your throat is gonna hurt like hell from the breathing tube. Let me repeat. Good times.
Do you speak more than one language? You might get confused as to which language you are speaking, and to whom. I did that. I am pretty sure it was a form of alien from another planet that has yet to discovered. I was fresh from surgery and my body felt like it was the consistency of green jello. (Why green you ask? I don’t know. Just looks gross to me) I was able to get the nice lady’s attention somehow and explained there was a spider crawling on the back of my neck! That nice lady? My nurse. “Hun, I can’t understand you.” Great they don’t speak alien here and I’m doomed. Of course it was not a spider. It was a spinal fluid leak which she found and then there were a whole lot of folks coming in to kill the aforementioned spider (I’M SAVED!)
Get someone to do your laundry. It’s amazing how quickly you will go through every single pair of pjs you have when you are wearing them non-stop. Ditto for pillowcases, which you will need to change nightly, and towels. You will basically amass a military barracks’ worth of soiled clothing and linens, but you will be too out of it to remember how to work your washing machine. It will look like a space ship with flashing lights and weird noises. Ask someone for help. Especially if it’s down a flight of stairs. My stairs reminded me of the Never ending stairs picture. My thought at that moment? “I want my mommy.”
For that matter, get someone to take care of you. Swallow your pride, and rely on other people. You will be in a daze. Making yourself food, getting dressed, washing your hair, are all going to be impossible without help. I was 44 when I had brain surgery. I can’t remember ever needing my mother more. My husband was there helping of course, but I just wanted my mom.
People in your life are going to react to this in different ways. The crazy thing is, you won’t be able to predict who’s going to do what. Some of them are going to be amazing. They will come to the hospital and visit you and send you chocolate and call you to see how you are doing. They will stop by your house with food and presents and if they are grossed out by your head, they won’t show it. Some folks … well, some of them will drop off the face of the planet. They’ will say or do weird and insensitive things. They will dismiss what you’ve been through. It will hurt your feelings, be infuriating, and might just confuse the hell out of you. Whatever the case, try to go easy on them, okay? Some people are just bad in a crisis. Besides, you’ve got bigger things to worry about.
Friends are going to look to you for cues on how to act. If you don’t want to talk about it, they won’t ask. If you are really open, they’ll be receptive to what you have to say. Decide how you want to deal with this thing, and you’ll find that everyone else will likely fall into step.
The entire experience will be weird and surreal. My surgery was more than a year ago, and I still haven’t completely wrapped my head (heh) around what happened. Things seem to fall into two categories: “before my brain surgery” and “after.” That’s just how it is. It’s a weird thing.
For a very brief window of time, everything in your life is going to make sense. The petty things that bug you will fall away, and you’ll just be really grateful to be alive. Enjoy that feeling for as long as you can.
I hope you are feeling better soon. And welcome to the club.
Thank you so much Wendy for sharing your hilarious take on what we have to go through. Sometimes, you just need to laugh!
Today’s post isn’t a very positive one. I had to go to the eye doctor six times since September. After three pairs of glasses, a failed pair of bifocals, and three eye exams later, I found out I am legally blind. It’s a condition called Cortical Blindness. The part of your brain that controls vision is the Visual Cortex.
Apparently, with all the brain swelling, pressure changes, and surgery, this part of my brain has been damaged beyond repair. My physical eyes themselves are healthy. As you can imagine, this has been a very overwhelming situation to process. Not only does it affect my life, but the lives of my family, friends, and all of the Chiari community that I counsel on a daily basis. I’m sure, dear reader, you can understand that I am finding it very hard to be the Positive Chiarian I am known for being.
I have been spending the past week wallowing in self pity, trying to figure out what this means going forward with advocating, writing the blog, and counseling. My eye doctor, Dr. Smith, has been so warm and kind through the whole process. She and her staff have taken an abundance of their time helping me to navigate what I am going through. If you live in Central Pennsylvania, I highly recommend them. Dr. Smith is also helping me to find the help I need to relearn how to do things without vision.
Going through everything that I have lately, my spirit has been in the toilet. I have the dearest friend, Sheryl, who is always available to listen to me rant, rave, cry and laugh. We found each other on the internet, and have never actually met in person! This is what I emailed to her when I got my final diagnosis.
“Everyone keeps telling me what a strong, positive person I am, and they KNOW I will get through it. I just want to tell them to shut up. Not to be mean, but I just can’t deal right now. If it was one thing, it would be different. But my body is failing me, and now loosing my sight? These conditions have and continue to rob me of so much. I have no distraction now. I can’t really write my blog. My eyes hurt so much anymore I just have to sit with an ice pack or cold rag. I can’t sew, paint, draw, read, cook, drive, walk much, bath or dress myself, talk on the phone, text ect.”
I felt horrible saying these things to her. Sheryl has so many issues of her own and she always has a kind word for me. This was her response:
“…You whine, rant and rave all you want…do whatever it takes to get it off your chest. And, I know, because this is chronic, you NEED to whine and rant and rave often. I’m here to listen. I wish there were some words of wisdom to share with you, but I guess the best thing is to just be here and listen, and let you share with me. I can understand that you no longer want to hear how strong you are, you already know that to get to this point in your life, of course, you have been strong and persevered. It’s those of us who are ignorant of each and every aspect of your life, who say stupid things, thinking that we are being encouraging…”
Isn’t she amazing? She is so fully of sage advice and so very modest. I felt like a complete arse after reading her email. I truly don’t know what I would do without her!
I am looking into software that will allow me to use my computer without having to see what I am doing, but at this time, it’s a bit cost prohibitive. contrary to what some people think, I don’t get paid to blog. I also never charge any “patient” who comes to me for advice or help. Everything I do is done out of love, and wanting to help others. I know how I felt when I was diagnosed, and there was no information available to me. No one should ever feel alone trying to understand Chiari and everything that goes with it.
What I want to get across to you dear reader is this, no matter what our respective conditions do to us, no matter how hard they try to break us down, make us wish we were dead, or feel like we can’t keep going, know that you ARE STRONG. In the words of my dear Sheryl,
“You already know that to get to this point in your life…you have been strong and persevered.”
Stay positive dear readers!
Hello and Happy New Year dear readers!
Please excuse my absence, but as most of you reading this know, living with a chronic condition can sometimes put you out of commission! I will update you all on the next post. For now, I think it is important to realize that with Chiari, and many other conditions, its not always the main disease its self that gives us so much trouble, but all the fun extras that go along with it. One symptom that has been giving me a lot of trouble lately is Gastroparesis. Eating is one of those things we take for granted Every. Single. Day. We need to do it to live. Imagine waking up tomorrow, and you can’t eat. You are extremely nauseous, and putting anything in your stomach causes gut wrenching pain.
Gastroparesis – (gastro- from Ancient Greek gaster, “stomach” and -paresis, “partial paralysis”), also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Normally, the stomach contracts to move food down into the small intestine for additional digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract.
As you can imagine, this comes with a whole host of its own problems.
- Nausea ( before, during, and after eating)
- A feeling of fullness after eating just a few bites ( or a few sips)
- Abdominal bloating
- Abdominal pain
- Changes in blood sugar levels
- Lack of appetite
- Weight loss and malnutrition
- Inability to handle certain foods. – For me, that means raw fruit and veg, dairy of any kind, seeds, nuts, red meat, carbonation, chocolate, peppermint, anything spicy, anything high fat, poultry and fish with skin on, very fatty seafood, high fiber foods, caffeine, and alcohol
- Alternating between constipation and diarrhea
These food limitations can vary from person to person. I can’t handle anything on the list, while someone else with GP, could have some of this, and other things they can’t handle. As you can imagine, this can make eating a healthy diet when your already disabled quite hard! There are also days when I have “flares” where I can only handle broth and baby food. I had one of these spells that lasted the whole month of November, and I ended up losing 20 lbs and a good chunk of hair.
Unfortunately, as with Chiari, Gastroparesis is different for everyone. It can be mild, which mine is, or life threatening, where your stomach has to be bypassed completely with a tube into your intestines. I have known others that have been hospitalized for months, and have even died from this disease. Of course, there is no cure, and there really aren’t any medications that can help. There are several tests that can be done to establish if you have GP, but mostly, its diagnosed by talking to a Gastrointerologist about your symptoms. Keeping a food diary is extremely helpful. I keep a log of what I eat, how it makes me feel, ect. When I have a bad flare, I go back to a liquid diet, then baby food, and then I slowly add back in solid food one at a time. It can be quite frustrating.
Have any of you had a problem with GP? What are some of the other issues you come across with your chronic condition?
I look forward to hearing from you dear readers!