Intro

Hi,

I just joined this blog recently so I thought I would introduce myself and I can tell you a little more about my story later.

I am a fellow chiarian and had surgery February 6, 2008. The primary reason for my surgery was debilitating headaches which started becoming severe in July '06. My finger tips from about halfway down from the last knuckle on were completely dead to feeling. I was having great difficulty swallowing and had to drink with each bite and avoided meats and drier foods that just don't go down as easily. I also had ringing in my ears and a few other annoying but not so serious symptoms.

I am married to a wonderful man and have four beautiful children. Probably my biggest regret with all of this has been that I have not been able to be much of a mom to my kids for quite a while. There ages are 13, 11, 6 & 5. My youngest two don't remember me ever being healthy and able to do fun things with them which breaks my heart.

I have been reading back posts as I have time and it seems like each of you have had life totally change with chiari. I am sorry that this has happened to each of you!

Cindy

Dr. B Explains Tethered Cord

Here is the latest video on TETHERED CORD ~ Dr. B at TCI explains tethered cord in layman's terms ~ he throws in some dry humor, too.
http://www.chiariinstitute.com/Videos/index.html

Alternative Therapies

Updated 4/15: Seriously I have only heard from one person. Any ideas people? Don't worry I won't state your name, just suggestions. Any home remedies or such that work for you? For any of your Chiari symptoms btw.

Hi all!
I am putting together a post on alternative therapies. I know my pain doc suggested yoga, massage and TENS. (i hate pills so he is at least trying here!)
What alternative therapy have you tried to help ease pain or other symptoms?
Comment, or email me at queli.is@gmail.com
I will add any suggestions that you all have.

Take care of you,
Q

Preparing for Tethered Cord Surgery

Since this is a quickly growing phenomenon with patients who also have Chiari, I hadn't heard a lot about preparing for the detethering surgery. I am happily at my 6 weeks post-op date and will share with you my thoughts on the topic.

Emotional Prep:

Since I had the 'occult tethered cord' I talked with a lot of other patients who had the surgery to help convince me that even though my TC didn't show up on an MRI ~ it was still there and needed surgical attention. Also the affirmation that if you have Chiari and Tethered Cord (TC)~ it's best if the TC is addressed first and then the Chiari. Also, please don't be afraid to ask your surgeon to explain in detail what the surgery entails, this greatly alleviated my doubts and fears.

Physical Prep:

I did a lot of core exercised to strengthen my stomach and core muscles in anticipation of using them instead of my back muscles.

What to expect physically?

• Keep in mind that everyone has a different pain tolerance, so don't be shy about asking for pain medication. If you are lucky enough to have a pain pump button at your access ~ don't be shy in pushing it for relief!
  
• I won't lie to you ~ the first couple of days are really tough and painful.


• Get up and walk as much as you are able ~ it will be painful but the more you walk the better you will feel.


• I had heard that nausea is a big symptom after surgery, so before the surgery I expressed my wish not to be nauseous and so I had some kind of medication go right into my IV the whole time I was in the hospital and I never felt nauseated the whole time.


• You will most likely have circulation boots on your legs when you wake up from surgery. They are like blood pressure cuffs and they are annoying at first but you get used to them. They help prevent blood clots from forming since you will be bed bound for a couple of days.


• You will most likely have a drain stitched into your lower back ~ don't worry ~ you probably won't even know it's there ~ and they will un-stitch it before you leave.

Random Thoughts:

• If you are traveling by car back home, grab hold of the handles near the roof of the car and pull up when you are approaching a bump.


• Bring a small pillow to put behind you in the seat to support your lower back.


• Ask for extra heat packs from the hospital to take home with you ~ they greatly alleviate the pain the back.


• Bring some kind of moist facial wipes to wash your face with while in the hospital ~ it feels so good to get your face clean and makes you feel a little bit more human.


• Eat LOTS of BRAN products ~ FIBER ~ trust me ~ you will need them.


• I experienced vertigo every time I would lie down or turn over in bed ~ it will pass ~ only lasts about a week.


• A positive attitude goes a long way. To fight cabin fever, try to plan an activity each week that you can look forward to. It will greatly lift your spirit.


• When you are ready to toss the sweat pants in favor of your favorite jeans, put on a camisole top and tuck into your jeans to keep your incision from rubbing on your jeans.


• Everyone's recovery is different. At 5 weeks post op I was walking a mile 5 times a day and doing some select PT exercises at the gym.

If anyone has more questions on the detethering surgery, please feel free to e-mail me at: lacieheiser@gmail.com. Our dear friend Queli will have her detethering today @ 12:30pm ~ I am sure she will be able to post on this topic soon when she is up for hopping on the computer again. Hugs to all of you ~ Lace

Preparing for Surgery

I know that this month, there are a lot of you out there scheduled for surgery. My prayers are with you! This blog is for you, although it is not comprehensive....just some random thoughts as you get ready for the big day. (How exciting!!!)

I am not necessarily an expert on medical stuff, but I have had plenty of surgeries.

Each time the preparation is a little different but some aspects stay the same. Here are a few things I thought of, or were suggested to me. Please feel free to add on through the comments, or email me at queli.is@gmail.com and I will add to the actual blog. These are just things to think about....I hope there is something in here for each of you.

Queli

Mental/ Emotional Prep:

This one I listed first, because if you are anything like me, I freaked when first told I had to have brain surgery.

Before Surgery

- Make a list of questions for the surgeon. Actually place a notepad in you living room or kitchen, so it will be easy to reach when you think of questions or concerns….and believe me, you will. Although I usually think I will remember certain questions, I usually don’t always have excellent recall until after I have reached the car, or hung up the phone. ( BTWthere is not stupid question: If you are worried about pain, ask the doctor how much you should expect, and what their plan is for post-operative pain management. You are the consumer, and have a right to know the ins and outs of what lays before you)

- Self Soothing Activities (bubble baths, long walks) These are things you won’t be able to do for a few weeks, so perhaps you will be able to enjoy them more. Also, I mentioned baths, and walks because those are calming for me. Choose whatever activities are best for you to reduce your anxiety level.

- Journal or discuss with a close friend/family member, what you are thinking and feeling as surgery approaches. This not only helps with anxiety, but it also aids in clearing your mind and processing the experience.

- Don’t take on other’s anxieties. There will be people in your life that are concerned about your surgery. This is wonderful, it means you are loved. However, you don’t need to be the one that soothes them. I mention this one, because I have some across this often as people get ready for surgery. Not only are they concerned about themselves, but also are tired of trying to ease everyone else’s hearts. In my own experience I thanked my loved one for her concern for me, then suggested that she seek counsel from another friend who wasn’t about to have brain surgery.

- List of resources. Having a list of webpages where one can access information regarding Chiari, or the specific procedure can be great to educate yourself and others. When you feel you have had one question too many, you can just share your list OR you may want to revisit some old information as you mentally prepare yourself.

- Make a plan for issues you anticipate.

o I had concerns about the hair, so I bought a wig before surgery. Although I could not wear the wig right away, I felt better knowing I had options)

Pre-Op

Okay this is just a suggestion, but a strong suggestion. Something that has been a huge help for me on the day of surgery is prayer, and Ellen Degeneres’s books. ( particularly, “The Funny Thing Is…”) A friend who was at every surgery, would bring the book and read it to me while I waited in pre-op. Ellen might not be your cup of tea, I can’t imagine that is so but regardless… pick up a funny book for that wait. The nurses think your nuts, but you are going in for brain surgery and laughter truly is the best medicine.

Support System

You will need some reliable people in your life during the post-op period. Make a list now of these people and let them know what your perceived needs may be. This might include someone to be with you during the post-op period (my friends took shifts), making meals, ride to doctor’s appointments, picking up prescriptions, light cleaning, checking in with a phone call, or stopping by.

Do not worry about asking others for help in advance, even if you are not sure you will need it. People in general, want to help. Also they are more likely to call if you let them know beforehand that you will need their help. They are less likely to offer this support after you get home because a)they think everything is covered, and more likely, b) they are not sure if they should disturb you.

Physically

- Take a reasonable amount of time off from work. I have to put this one in for my own insane behavior of only scheduling 2 weeks off for my first surgery. This is not an appendectomy, this is major surgery. You body needs time to heal. Since my lapse in judgement, I have heard that most doctors suggest around 12 weeks. Ask your surgeon for his recommendation. If he says two weeks for the decompression, like my first surgeon did, go get another doctor that doesn’t smoke crack.

- Take it easy! And I mean take it easy, easy for the first few months. No lifting, or anything that causes strain at all. The muscles they had to cut through to get to your skull need time to repair, as well as the outside sutures.

- For the decompression, I personally did well with doing neck exercises, starting while I was still in the hospital. The act of doing the turns and nods felt like some kind of concentration camp torture; I really did wonder if my surgeon was the anti-Christ at first. However, I didn’t have these neck exercises the first time around, and spent a year in physical therapy. TCI made me do them right away, and it helped so much (no physical therapy was needed). Although painful, it actually helped lower my pain levels this time around to turn my neck and get those muscles healing right.

- If you experiences nausea they have great prescriptions for this; don't bother with the over-the-counters for nausea. That’s just my 2 cents ofcourse.

- What to expect physically?

o Everyone is different as far as post-surgical discomfort. Not only that, also every surgeon is different which does make a difference.

o My first decompression: I had a lot of nausea, dizziness, and major “someone please kill me” pain. However, there were complications in my particular case that are rare.

o 2^nd Decompression: More was done then the first, but I had much less pain. My biggest physical issue was keeping myself from too much activity because I did feel so good. I was completely off the narcotics about two weeks post-op, and that was just because they didn’t want me to stop them cold turkey.

o Again, ask your doctor about his or her post-op pain management plan.

o Also ask how long until you can drive. This one also seems to vary surgeon to surgeon (and also is linked with how long you need to be on meds)

Out of Town Surgery

- Places to stay.

o Don’t be concerned with plush accommodations. Post-op, all you will be concerned about is a comfortable pillow, where your pills are, and if it is time to take a walk to keep from developing clots. You aren’t worried about the breakfast buffet, or swimming pool, and neither is your companion.

o If money is an issue, see if the hospital has accommodations for travelers. I know TCI has a place for Chiari patients, and I also found out recently that there is also a Ronald McDonald House nearby.

- If you have to come in a day or so early for pre-surgical testing, schedule it early in the day. This way you can enjoy sight-seeing in the town, so it isn’t just about the surgery. I did this for my surgery in New York. And spent the day before surgery checking out Central Park and Times Square. It gave me and those accompanying me, a mini-vacation prior to the Zipper. It also gave me something to look forward to when thinking about the trip, instead of dwelling on the surgery.

Random Suggestions/ Thoughts

- Nurses have answers. In the hospital, feel free to ask the nurses if you have any questions. My first hospitalization I waited for the doctor and he didn’t have time or patience to answer them (this was not at TCI, btw) But what I found out was that nurses not only speak surgeon, but they also have a vast bit of knowledge in many areas from pain management to aftercare.

- Plan on some self-discovery stuff. There was a definite re-defining period for me after surgery, especially with the hair loss, and limited activity. Don’t be afraid to see yourself in a different light. Also allow some room for growth. Brain surgery is a big deal for anyone. A lot of soul searching is involved, and therefore so is a huge potential for growth. Use it.

- Hold your head before laughing…….it hurts if you don’t :)

- Write down names of people who have helped you out in some way. If you want to send a thank you later on, you might not remember what you would think you would.

- Have someone who is a good note taker take notes when the doctor goes over post-surgical consult, and discharge. Too much information is given, and usually the print out they give you is not as detailed.

- Most likely you will leave the hospital with a list of meds and how often to take them. Ask the nurse to write down the last time you took each medicine before you leave. I thought I knew, but by the time I finished getting the prescriptions and settled into the hotel room, I could barely remember my name let alone which meds I had last.

- Find reasons to laugh; really there are so many, and as I said before…laughter is better for the soul than any meds they can give us.

- Be proud of your Zipper. You went through a lot to get to this point!

- And lastly, but most importantly, use the “I just had brain surgery” excuse at least once. I mean seriously, how often will you have that one?!!!!

Acceptance

Who says all dirty words only have four letters?
The thing is that acceptance would be easy if we only had to do it once.
Unfortunately, we come across this need everytime Chiari changes in any way.
I was all about acceptance until I had to have another surgery.

Then I found myself feeling like a teen, trying to figure out who I am and what I am going to do with my life. All of a sudden feeling almost as lost as I did that first day I stumbled through the words "Arnold What?"


Acceptance is a hard one....and I would love to say it gets easier.....but that hasn't been true for me. Heck, we come to points with big decisions to make, or hurdles we have to climb.

Acceptance does however, come quicker each time...using the experience of trial and error from past experience to egg me on.
What makes it hard is that I have to keep going through self-discovery. Who am I now? or even What will my limits or benefits be?....from whatever course of action that is suggested.

Talking with friends with other chronic illnesses, this re-visit time and time again to acceptance is pretty much the norm.............even for something as abnormal as Chiari.
I think perhaps even more with Chiari because we don't have as much information when if comes to ACM.
However, we do have each other, and each other's experiences.

Thanks everyone who has walked with me through one or two of my walks on the path to acceptance.