post surgery update

I'm home from the hospital. Ended up going to Ceder Sinai Medical Center. It was a good experience as far as the hospital goes but it was really painful. I'm still in pain. I was there from Tuesday to Sunday. I hope i heal up well and there is no complications from now on. I hope this helps me. I will see the doc on Thursday. And go back to school next week maybe. If all goes well. :-)

Surgery Postponed

So my surgery is postponed till next Monday because apparently I had doctors and nurses calling and leaving messages at my home (we are staying with my parents) about 17 messages asking me to call back because I needed some more blood work. Also I have to take 5 days of antibiotics to clear a minor bladder infection.

If I had gotten the messages right away I don't think the surgery would have been postponed. But maybe, all depends on the test results I think.

So I took the blood work today at Quest and I'm starting the antibiotics tomorrow. Here are the tests that were ordered:
Factor 8, 9, 11, 12
PT correction Mixing Study
VW Factor
Ristocetin CoFactor
Lupus Inhibitor
Antiphospholipid panel
Bleeding Time

All were taken except the Bleeding Time.

I guess the doc is checking up blood clotting problems because of the past blood work.

So the problem now is next Monday is my first day in school and I asked Mike to go for me the first two days except he will be with me those times. I don't know what to do yet... It's only 3 classes.

What is Arnold Chiari Malformation?

What is Chiari Malformation?

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.

Is there any treatment?

Medications may ease certain symptoms, such as pain. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition.

What is the prognosis?

Many people with Type I CM are asymptomatic and do not know they have the condition. Many patients with the more severe types of CM and have surgery see a reduction in their symptoms and/or prolonged periods of relative stability, although paralysis is generally permanent.

What research is being done?

The NINDS supports research on disorders of the brain and nervous system such as Chiari malformations. The goals of this research are to increase scientific understanding of these disorders and to find ways to prevent, treat, and, ultimately, cure them.

pre-op apt went well

my husband and i are staying at my parents house for about 4 weeks. today was my preop appointment and it went well. went to the 15th floor on time and got an ekg. down to the 2nd floor to see the doc. i shared some concerns, showed him previous blood work and asked for an antidepressant now that i know a doctor cant say its ALL in my head and that it will help with pain. He confirmed that I have an umbilical hernia and I could take care of it later no problem. My ekg when i looked at it said I had some sort of arrhythmia but the doctor didn't say a thing so I think it's not going to effect my surgery. Went down to the 1st floor for a chest x-ray and 4 tubes of blood. Back up to the 15th floor to get an ultrasound of my heart a stress test (which I hated and couldn't complete) and another ultrasound of the heart.

What a fun filled day. Besides like 2 people every person at the hospital seemed really nice and on top of things. I like that I never have to pay for parking.

The sucky thing is now I cant take any anti-inflammatory meds.

I'm nervous but it's not too bad. I think I will be okay.

The question is now, where do I actually go for my surgery? lol. I know the hospital but it's not like I've done this before :-) I'll figure it out.

surgery question

Hi, Im having decompression surgery on the 19th of August. I just want
to know what to expect. And if anyone has heard of Dr Lanman in
beverly hills. I'm nervous. I heard it was REALLY painful. How long
before I can go back to school, etc.

surgery date

My surgery is scheduled for August 19, tuesday at 7:30 in the morning. I'm nervous and I thought I was dealing with it well but I realized that I'm just stuffing my feelings instead of dealing with them. I'm worried about it and all the dangers of haviing surgery. There is some logic in my worries but I know I'm being irrational.

Someone said that I should check for EDS first because the surgery would involve fusing. But I think that I will do this surgery and if I have any problems I will check on that. But at my presurgery appointment I will bring it up along with my blood tests from a while ago that showed signs of blood clotting. But I'm not too worried about that. I hope this surgery helps.

And whats better is that the surgery is the day after my final. When the time gets closer I might end up taking the final the week before.

I have to bee off pain meds for 10 days prior so that will suck bad! Hopefully it doesnt interfere too much. When I'm in pain either I panic or I just forget anything else going on.

surgery

So I'm having the ACM Decompression surgery. Just have to schedule it. The doctor said everything else was fine and I just have borderline Chiari. He let me ask as many questions as I wanted and I feel really comfortable around him concerning this. So thats good. Wish me luck.

head swelling

The last few days the back of my head has been hurting in two spots. Now it feels like its swelling and its really sore. I'm putting ice on it. Earlier I was having pins and needles and sharp pointing type feeling all in my thighs. It hurt more than normal.

drop attacks kinda

"Well I asked about drop attacks because I've been having something similar but not quite and wondering if people can tell me whats going on. I get really sleepy and my head falls forward. I stop in my tracks and my knees lock so I dont fall down. It lasts for about 10 minutes. Sometimes in the car but mostly when i'm walking. I think it's triggered by something because it doesn't happen when I'm just lying around all day. Usually I feel really nautious later."

crappy night

I had a really crappy night. the fireworks had a lot of debris and it made it hard for me to breathe so i was coughing and i had a bad headache so i got a double shot iced coffee which helped alot. But what was crappy was after the show and walking to the car i started collapsing and getting dizzy and woozy in the head. It sucked alot. Now i'm feeling better. rested watched some tv and put ice on my head but i'm still nautious and i still feel lots of pressure up my spine and into my head. ugh! i missed my apt on thursday so i had to reschedule to next thursdayl.

doctors appointment

So tomorrow is my doctors appointment after i got my 2 MRI's today. I've been lethargic and depressed but realizing my depression is due to my lethargy. its a vicious cycle. I do not claim I don't have depression but I don't want to just give up on figuring out what my triggers are.

anyways i got to look at my mri's and i don't see any srynx's in my spine but I'm not a doctor or mri tech.

attack

So I had a really bad attack last night. its 4am and I'm still nauseated and my back still hurts but it's calmed down alot. I just have to be careful so I don't aggravate it. I wonder if its because i tried a basic ballet class on Saturday. I don't really know what brings it on. It felt like that night I went to the ER. so i wrapped myself in a heating blanket on the couch and distracted myself with television. I felt like I was on the verge of throwing up for hours.Any type of position felt like pressure shooting up my spine. I still feel it but I don't know. UGH!

I am in line for this new job as a preschool teacher. It's perfect. I would work in the mornings and have my own class of 3 year olds. Its a small class and I would do whatever I wanted. I just hope I can handle mornings because mornings are really hard for me. I have a hard time waking up and staying awake. I don't want to look lazy and I want to give them all my attention. At least I'm not an assistant because that would put more pressure on me to perform and I would have to do heavy lifting.

I am so stressed out too. I need to see my therapist but she's been booked. I might have to see someone else. Thats good too because even though the rest of the therapists in her office are Christians I am pretty sure she is not.

so its official

(note this is not an mri of MY brain) diagnosed today. i have chiari's. ugh! i was hoping it was something i could fix :-( i have chiari malformation. i'm seeing a doctor in beverly hills recomended by a friend. i'm getting some more mri's done in two weeks because he will be out of town.

Sunshine

I remember a year and a half ago running into an old friend from high school and on the verge of tears because I was about to lose my job. The start of my illness in full swing trying to put behind me the horror I went through the summer before. Her life was going great, hot boyfriend, head of her sorority Delta Delta Delta. I'm worried I can't make it to my dance class because of my bout of narcolepsy coming on me making me more insecure. Embarrassed because I look flaky. vulnerable and lazy. I'm not that person although my past before college dictated that I was. My life was doomed to disappoint. And it didn't stop there. It took another year before the light would begin to show.

A year wasted? I think not. It's not something i wanted. It certainly felt like it was wasted. But God had His plan. It was a boost into the healing that I wanted, that I asked for. I've learned the art of grieving about the idea of hope. And though my life looks like I'm choosing these paths, the path was chosen for me. I am limited I am working and going to school like I was before. Maybe people will think I"m picking up where I left off, and in a way that's what I want.

But it's not like that. As I'm writing this I know I will go home so I can use a TENS unit on my tense muscles that go spastic whenever they want and I have my instant ice packs in my purse along with an almost empty bottle of Aleve, Migralief tablets and my Dramamine for nausea. My sunglasses are always available. The major and classes I chose, the work I choose has to be flexible. If I have a bad day and need to stay home or if I need to zone out or rest. I have to learn to relax my muscles as much as possible and even though I want good posture I need to forget about that for the sake of neck pain relief.

Whats gotten me through has been http://chronicillnesssupport.typepad.com/ and this verse:
PSALM 40
I waited patiently for the LORD;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.

Also the knowledge that all things are for the good of all those that believe. The order of events in my life contribute to the order of events in another life. If I know that theres a possibility I'm in pain and distress because another person will benefit greatly it is worth while. It's a way to endure.

But one thing that has been constant since the start of my back pain 2 years ago is I have prayed and hoped it would not interfere or cause my dancing to go away. I don't know why but I still have that passion and who knows if it will ever be fulfilled in any way. I hope that my blogs are a source of encouragement to anyone out there.

PS I do like my classes and I do like my job and I am enjoying my husband more and more each day.

happy update

i noticed that my blogs were depressing so I wanted to let everyone know the good things coming out of this. I'm slowly able to to more and more. My mom and I are trading Saturdays and going to each others home to help clean/organize. i had gone to the ER the first week i started work and the doc took an xray of my lower spine which showed that the only thing noticeable was that my tailbone was straight instead of curved. The doctor said I have bad back spasms though and prescribed muscle relaxers and pain medicine which I was not able to afford. but all in all I'm doing better. I'm trying to relax my back as much as possible, not rush etc.

We still need insurance. Probably going to go with student health insurance. the safe route. but not sure yet. we'll see. any suggestions?

post-polio syndrome?

"Partly due to association with past epidemics there has long been hypotheses linking ME/CFS with polio. From the very first well documented epidemic in 1934 (labelled Atypical poliomyelitis) the question has arisen concerning the relationship between an infection and immnunization. Many ME patients prior to 1956 suffered a paralytic association along with typical ME/CFS symptoms, however post 1956 ME/CFS patients have been spared paralysis, and it was hypothesised that polio immunization altered the symptoms common in earlier epidemics. Despite polio having been first described in 1881 there was no mention of PPS or even named until about 1979, the same time ME/CFS catapulted into public attention, and the rise in numbers of PPS closely parallels the rise in ME/CFS. It has also been noted that patients who had previously fallen ill with Akureyri disease (a synonym for ME/CFS) in 1948, and the general population of that particular area, of Iceland failed to succumb to the polio epidemic that swept that country at the time. Which raised the questions; are many ME/CFS patients simply PPS patients who had contracted a subclinical case of polio years earlier or is ME/CFS in subgroups, a poliomyelitis variant? [5] [6] [7]"


Reasons I could have had a mild case of wild-poliovirus
#1) I did not have a polio booster shot prior to my trip to Ethiopia
#2) There was an outbreak coming from Nigeria around the time I was in Ethiopia
#3) I had diarrhea upon returning for 2 weeks.
#4) One other person on my trip came back with symptoms including mild paralysis on one side
#5) my main problems are back spasms, joint pain, dysautonomia like symptoms, hypoglycemic like symptoms, fatigue

unhappy and unsatisfied

but i feel unsatisfied and unhappy but mostly unsatisfied. i'm not sure why. i think it has alot to do with my health and how i used to be and how i am very limited now.

for example i cant even enjoy you know with my hubby because i get muscle exhaustion. i cant enjoy housework because now i work 4 hours a day and come home feeling unwell. i cant just get up and enjoy life anymore. all i can do is go online and go on the computer and go out sometimes and go to work now (my first week). every action i take and every goal i set is limited by my health.

I used to dance. before i got really sick i realized what i love the most is dancing. now i cant do it :-(

what to do?

my first step i think is going to join the ymca. they have arthritis swim and chair classes so we'll see.

some pain relief

finally got some pain relief by sitting on a chair backwards literally on my crotch :-(

i dont know how i'm going to get by like this. i start work tomorrow and i'm starting school in a month.

i might have to invest in one of these kneeling chairs with a cushion/pillow.

chiari question (undiagnosed)

i noticed when i sit my hip bones put pressure into my spine putting pressure into my head causing horrible pain and then a migraine. this also happens when i walk and my heels put pressure into my head! is this chiari symptom?

im waiting on insurance to see a doctor.

health update

So I want to update everyone on my health. Its been a tough ride!

I'm feeling alot better now. My lab work shows no signs of any infection.

I'm starting a part time job next week at an afterschool program. I don't know yet which school it will be.

I'm starting school again for summer. I'm changing my major to psychology although I absolutely loved Communication Disorders! But that major was like taking a midterm every week in every class. There was no break. And it's too hard on my body. Psychology is a big major at CSUN so I can choose which teachers and what times I want classes. I will be graduating hopefully next spring!

I started acupuncture which has been helping my pain and sleep.

I hope to get health insurance soon so that I can see a few more doctors. My back is really messed up, I noticed I feel much better after eating salty foods, and i still get those pressure headaches and migraines.

I have chronic fatigue syndrome now because of the infection but I'm able to manage it fine, though I can't do any aerobic exercise.

I've had to work through all my feelings in regards to becomming sick which I hope to continue doing, because it changes your life dramatically.

And I hope that people will call me and hang out with me soon, cuz i miss everyone!