Erika's Chiari Blog

Long Time No Update

2009-08-19T13:09:00.007-04:00

It has been a long time since I updated my Blog. Basically not much had changed that is until January of 2009. I was busy in the house putting away my holiday decorations when all of a sudden I felt extremely dizzy. So much so that I knew I had to lay down. The I started to see floaters and flashing lights. Something was terribly wrong. For a week I dealt with excruciating neck pain- I could barely lift my head. The dizziness persisted and I realized that I was experiencing double vision.

After several weeks of this misery I made an appointment with my General Practitioner. After describing my symptoms and the fact that symptoms were ongoing for at this point 3 weeks- he ordered an emergency brain MRI. I tried explaining to him that a Brain MRI wasn't going to show a whole heck of a lot for me. I need a cervical MRI. He wouldn't listen and off I went to a useless Brain MRI. Surprise, surprise the Brain MRI revealed nothing abnormal. I made appointments with a Nero Ophthalmologist and a Neurologist. Maybe one of them could give me some answers before I had to go all the way out to Iowa again.

The Neuro- Ophthalmologist did a very complete exam and concluded that I was experiencing Convergence Insufficiency. My eyes were just not tracking objects correctly hence the double vision. He recommended I get the cervical MRI because "something is definitely going on in there". The Neurologist said my symptoms sound like a migraine but since it has lasted for 30 days he is not sure what to make of it. Looks like Im going to Iowa.

I went out to Iowa in May 2009. I had my Cervical MRI this time he did a CINE MRI to make sure everything was flowing as needed. His conclusion the events in January was a "Vascular Incident" along the lines of a migraine that just happened to last for 30 days. I asked if it was normal for a migraine to last 30 days and he said "No, but your not normal". His recommendation is to take an 81mg low dose aspirin every day. Hopefully that will prevent another incident.

NOTE: I haven't been out to Iowa since 2006. I was supposed to go out in 2008 however Iowa City/Coralville experience a horrible flood. Everything was under water including the hotel I always stay at!I put off my visit for a year because everything was stable and then came January 2009....

Back from Iowa

2006-09-03T15:08:00.000-04:00

I made it back from Iowa to see my doctor for my checkup. Overall he is quite pleased with my progress. I will just keep doing what Im doing and I will see him again in two years. I always get a little disappointed after my appointments. Intellectually I know that there isn't much else that can be done for me but Im always hoping that there will be some new med or treatment (not surgery I had enough) to make my life just a little easier. Of course there isn't so I don't know why I expect something. Just wishful thinking I guess.

PS- I found out that wearing a neck brace in the airport makes you a target for extra security screening. I was pulled aside at every security checkpoint, patted down, wanded, hands swabbed etc. Thankfully the titanium in my neck did not set off any alarms. It was quite an experience.

Getting Nervous

2006-08-20T22:32:00.000-04:00

I am getting nervous about my trip to Iowa with everything going on with flying right now. I leave on August 29 and this will be the first time I have flown alone. Some time to attempt a solo voyage in the midst of a high terror alert. On the plus side- since I will have to check my bag (want to keep my shampoo!) I won't have to carry anything as I run through the airport to make my connection. Trying to see the positive.

Iowa Trip

2006-07-24T15:57:00.000-04:00

I am planning on going out to Iowa to see my doctor for a check up next month. Seeing as how nothing has really changed in the last two years(better or worse) Im sure my exam will be fine. I just want to hear him say "Your fine" and I will feel more confident.

Bad Cold

2006-06-04T16:31:00.000-04:00

I made it through the entire winter without so much as a sniffle. Nice weather comes and bam! I get a bad cold out of no where. It has been a week and most of it has passed. I still have a nagging cough but not too bad. As long as it doesn't turn into pneumonia like last year I will be fine. That was just awful. Not much else to post.

Bad Hair Day

2006-05-16T17:20:00.000-04:00

I am surviving the week long rain fest. Today there was a break in the rain and I actually saw some sun! I decided to run out and do some errands. I felt dizzy earlier in the day and had some neck pain but I took an Aleeve so it was feeling better not to mention the break in the weather helped.

I really had to get a hair cut. Unfortunately my normal hair guy was not around until next month so I decided to just try my luck at a local (cheaper) place. Silly me. As the woman took me toward the sinks in back I explained that I have a bad neck(understatement of the century) and that I can not lean back into the sink but I can lean forward. She looked horrified. I knew this was not my day. We skipped the wash and went right to the cut. As I sat down in the chair she went over to the receptionist and whispered something to her. High School flashback. On top of that my cut sucks. I was not happy and she made me feel like a leaper. I miss my hair guy :(

Sometimes you really do get what you pay for.

No comment=good news?

2006-05-14T19:14:00.000-04:00

I have had a good couple of weeks- minimal symptoms, no headaches, etc. Now the party is over. According to my bible The Weather Channel- the entire week is rainy/crappy. Great. Yesterday I started getting all sorts of rain signals- head throb, rib pain, dizziness, pressure. I even held off on watering my flowers outside because I was sure rain was coming (One benefit to having a doppler radar in my head, never overwatering the flowers). We ended up having a two second sprinkle. All that Hoop La for nothing. Today same story except I watered the flowers :)

Im supposed to be getting together with some friends this weekend. I hope the weather clears because I would like to be able to enjoy it!

UGH

2006-04-24T14:47:00.000-04:00

It has been raining for the last three days! I have avoided a headache but the dizziness and neck pain have been crazy.

I will try to explain how bad the dizziness gets and how hard it is to function normally on those days. To look at me you would never know what I go through- I look pretty "normal" and healthy to an outside observer. Some might even wonder why I am disabled. Here is a little experiment. Try spinning yourself around in circles for a a good while. Get yourself nice and dizzy so the room is spinning and you can't see straight. Quick! try to do some things around the house, try to concentrate on a book or TV or even a conversation with someone while your head is spinning. Almost impossible. All you want to do is sit down and be still. Lucky for you that awful feeling goes away. I have entire days where I feel like this. Sucks to be me .

This is a dizzy day so I am going to go sit and be still for a bit.

PS- I have had a new symptom pop up recently. My pinky finger has had some sort of a tremor. It was shaking all day yesterday. Today it is fine. Have no clue what that means but I would be lying if I said I wasn't a bit worried.

Bad Headache

2006-04-08T20:22:00.000-04:00

I have a really bad headache today. It is raining and the barametric pressure was at 29.86 and rising- hoping that it will rise high enough to get rid of the pain. Thought I could type more but I can't. Im going back to bed.

Miserable.

Lots Of Rain=Lots of Pain

2006-03-12T13:53:00.000-05:00

It is supposed to rain for the next several days. I am not a happy camper. Yesterday was absolutely beautiful outside- sunny close to 70 degrees and I had a migraine. For me it is always worse before the bad weather hits. At least I got to open some windows and breathe in the air while I was in bed miserable! Today the headache is better but I'm dizzy and achey. Always an adventure doing housework dizzy- I keep falling into the walls! Hopefully I will get through the next few days relatively unscathed.

Rough Week

2006-02-27T15:01:00.000-05:00

Last week was a rough week for me. I woke up with a headache pretty much every day. The first few days felt more like my normal killer pain behind my left eye , in bed all day, unable to function headache. The last few days were different. First off they were on the right side of my head. I do at times get right sided headaches usually related to neck pain radiating up to my head (The right side of my body is what is affected by my SM). Thankfully, I was able to take an Aleve and put on my neck brace and by afternoon my headache was gone!!!!!! Too bad they can't all be that easy.

Im praying that it was just an unstable weather system wrecking havoc on my brain. I can't handle another decline.

Crazy weather

2006-02-17T15:37:00.000-05:00

I survived the snow storm! NY city got a record 26 inches! My area was much less- thankfully. Now, a week later it was 60 degrees F yesterday- nearly that today but tonight it is dropping to 28F!!!!!! We are dealing with huge wind gusts right now. This afternoon one blew my blinds right off my screen porch window!

So how does this all effect me? Im a bit achy and off balanced. My injury for the week(or so it seems these days) I was bending down picking up something I dropped yet again and I stood up and hit my lower back into the door knob. It still hurts. Just add it to the list.

Hoping the weather system will stabilize soon- Im running out of places for black and blue marks!

Blizzard Warning

2006-02-11T13:11:00.000-05:00

They are predicting a really bad storm here in the North East starting this evening. Im already feeling it. Ugh.

Hair Cut

2006-02-09T15:38:00.000-05:00

Yesterday I went to get a haircut. For most people this is no big deal and even enjoyable- for me a huge pain in the neck (literally).
First off I am not able to lean back into the sink to have my hair washed. My spine is fused from my skull down to C4- bending backwards... not going to happen. I found that I can lean forward into the sink. I sit in the chair facing the sink and lean in with a towel over my face. I get good and soaked and usually the floor gets a bit wet but it works for me! I have even had my hair highlighted this way!
Thankfully my hairdresser is fully aware of my limitations and he tries to be gentle. I find that all the tugging on my hair (brushing, blow drying etc.) is really rough on my neck. I usually take a motrin before my appointment and then take another after. Occasionally I need to wear my neck brace for a bit after just to give my neck a rest.
Amazing what one will go through to look good!

Rough Days

2006-02-07T14:00:00.000-05:00

I had one of my monster headaches that started Friday night and ended Saturday evening. I spent most of that time in bed miserable. Of course I knew it was coming because the weather was crappy- lots of rain. What surprised me was the start of another headache last night (monday).

The weather was fine- no rain maybe a bit overcast but come on already! I spent the evening in pain with my neck brace on trying to get some sleep. The pain is gone now it is 2:00 tuesday afternoon. The only thing I can figure is that this morning the barametric pressure was dropping and was set at 29.85 (according to my new bible the Weather Channel). I'm becoming a weather geek- trying to figure out what exactly sets me off- seems like the barametric pressure has to be dropping and below 29.90. Anybody want to explain to me why and what the heck I'm supposed to do about it???????

Car Trouble

2006-02-02T14:10:00.000-05:00

My car is slowly falling apart. O.k it is 12 years old and that is to be expected but I was really hoping to hang on for a couple more years! I came home from grocery shopping the other day and my driver side window would not close. It was late Saturday afternoon- my usual mechanic wasn't open and rain was expected that night and next day. Great. My father came over to take a look. He made the situation worse by opening the window all the way. Now it was wide open and no way to close it. Thankfully the Toyota dealer was still open so we drove it over there. They were able to manually close the window complete with a piece of duct tape on top until I could get it fixed. Gave me a $500 estimate to fix it. Thankfully my mechanic was able to fix it for less than half that price. Unfortunately I had to wait a couple of days to get it to the mechanic during which time the window fell down a bit again (so much for the duct tape) and it was raining. Thank God for Saran Wrap! I wrapped the crap out of the window and it seemed to survive. P.S-I have started a new car fund.

Dangers of numb fingers

2006-01-22T16:05:00.000-05:00

I cut my knuckle the other night on a tin can. The worse part was I barely felt it. I just happened to look down and see blood dripping down my finger. Thanks to Syringomyelia, I have limited sensation in my right hand. It is much better than it had been 5 or so years ago when I had nothing at all- no sensation and no function. Before my last surgery in 2001, the numbness extended up my arm and across my chest. I also had small pockets of numbness in random places on my back and toes. I was a little worried when the cut wouldn't stop bleeding. I didn't want to go to the ER- plus it was dark out and I don't drive in the dark.....blah, blah. It eventually stopped bleeding until I accidentally hit into something and then it was back to my impersonation of the Statue of Liberty and a whole bunch of band aids. I think I will live- just won't be eating anything from a tin can for awhile!

Living Alone

2006-01-15T15:07:00.000-05:00

Before I became disabled I very happily lived by myself. I have always prided myself on my independence and hated to ask anyone for help. Of course back then there was very little I actually needed help with.

After each of my three surgeries, I became completely dependent. I gave up my apartment and moved back with my parents. After surgery #1 in 1999 I was in a large brace for 7 months and was limited in what I could do for myself. After surgeries #2 and #3 I lost the use and feeling in my right hand and arm (my dominant hand). I couldn't even tie my own shoes! I hated it and tried to find ways around it all- I became left handed for two years and used adaptive devices whenever I couldn't figure out how to make it work for me.

Now that I am on my own again I actually miss having the help! (shhh don't tell anyone) Don't get me wrong, I love having my independence back but every once in awhile I could really use the help. Carrying in heavy items from my car (When I try my neck goes into spasm and I end up in bed for days), digging my car out after a snow storm(This I have no choice. I wear my neck brace under my scarf, take my time, and take a motrin and a nap when I am done), When I lose power and everything is dark and cold (Lose my equilibrium in the dark and fall right over. Always fun finding the flashlight!) etc....

I guess that I am still adjusting to life on my own with a disability. I knew it would be a challenge but I know I can make it work. Besides my family is only 30 minutes away so if I really need the help I can get it. I just have to learn how to ask!

Happy Holidays

2006-01-09T20:38:00.000-05:00

I had my family over on Christmas for brunch. It was my first time holiday hosting in my new home. Although it was a small gathering it was fun. I even used the good dishes! Everything turned out really well- even the food. Everyone survived my cooking and took home leftovers so I guess it was a success! I of course was exhausted after and had to take a nap but it was well worth it. I never thought I would have my own home, let alone be a hostess!

Good Thanksgiving

2005-11-28T19:42:00.000-05:00

I had a nice thanksgiving. Unfortunately the long car ride to my cousin's house didn't agree with me so I ended up with a migraine and neck pain for the next several days. I guess the rainy/snowy weather didn't help much either! I try not to limit traveling to visit family and friends even if I know I will pay for it later. If I didn't go I think I would end up very isolated. So for my own good mental health I have to sacrifice my physical comfort for a few days. Small price to pay.

Thanksgiving

2005-11-24T13:18:00.000-05:00

Happy Thanksgiving To All!

Bad Weather=Bad Erika

2005-11-21T13:17:00.000-05:00

The weather is supposed to take a real turn for the worse here in the north east. Rain is supposed to start tonight and then it will snow. The weather channel had it snowing until friday! That usually means I'm not going to be able to function for several days. I am very much effected by changes in barametric pressure. I can feel a storm coming on up to 24 hours in advance!

I started to feel sharp pain in my neck last night which is always the precursor to my storm nightmare. Today I am really off balance- I fall into just about everything and my swallowing is worse (I have trouble from time to time swallowing anything- pills are my biggest enemy). Right before the rain starts I will feel a pressure in my head and a throbbing behind my left eye. Usually I need to go lay down and usually end up falling asleep. Once the rain/storm hits I either feel better or launch into a full blown migraine. I haven't figured out exactly what conditions make me worse and what makes the pain go away but I'm betting 4 days of crappy weather is a migraine starter. Who knew that when I went in for brain surgery I would come out with Doppler Radar in my head?!

Perfect Example

2005-11-19T13:32:00.000-05:00

Today I was going to take a ride to some stores to do some holiday shopping. I try to get everything done before Thanksgiving because I just can't handle the crowds, long lines, pushy people etc. Shopping, which once was a hobby for me in my healthy days, has become a huge, exhausting hassle. Looks like I'm going to have to put it off for today- I'm not feeling up to it.

One of my many symptoms that has not gone away since my surgeries is dizziness. Some days are better then others. Today is a dizzy day. I don't drive on dizzy days. I usually try to take it easy because you really can't get much done when the room is spinning. Maybe I will try to do some cleaning....See? I can't do nothing have to accomplish something.

Going Well

2005-11-18T19:56:00.000-05:00

Things are going well in my new home. It is quite a bit harder living on my own now then before my surgeries and disability. The one thing that I have to learn to do is pace myself. I'm really bad at that. I used to be the Type A personality that has to get everything done just right. I had a list every day of things I was going to accomplish. Now I'm just not physically able to do all that. The first several months I lived here I paid for it dearly by trying to do too much. I still make my lists but now I cut it in half and try to do that. I still get frustrated when I can't get it all done because my body just poops out on me. I'm slowly learning to let it go.

Moving Forward

2005-08-03T17:27:00.000-04:00

It has been awhile since I have updated this journal. Alot has been going on- good news for once. I made it my mission to move forward with my life despite my problems and challenges. It has always been a goal to get my independence back and a dream of mine to buy my own home. I am proud to report that this is now a reality. I am out on my own again after living with my family for 6 years while recovering from my surgeries. I was able to buy a condo and I couldn't be happier. It has been a long , hard struggle to get to this point which makes the experience even more incredible.

Still struggling with a boat load of health issues. Still have good days and bad days. I do what I can when I can. My family is only about 30 minutes or less away so if I need help I can get it. I'm just enjoying the ride.

X rays negative

2005-02-23T17:26:00.000-05:00

Happy to report that the xrays came back negative. Pnuemonia is gone and my lungs are fine. So much for that chronic problem the radiologist diagnosed. Doctors! Anyway, I'm feeling much better. Breathing is such a good thing! HA!

Pneumonia

2005-02-09T17:24:00.000-05:00

I don't know what it is but ever since my surgeries I am like a sponge when it comes to picking up illnesses. The wind can blow the wrong way and all of a sudden I'm sick as a dog. I'm just getting over a bout of Pneumonia. It started out as the flu and then very quickly went into my chest.

I absolutely hate going to the doctor with a "normal" problem. Especially a new doctor. I had to find a new GP because mine left his practice. Great, right in time for me to get sick. Whenever I go in with a "normal" complaint doctors freak out thinking I'm having some neurological event. I had a chest x ray which showed the Pneumonia. The radioiologist decided since I have a history of a partial collapsed lung(happened during a medical procedure while in the hospital in 2001), this must be a chronic problem. How could it be chronic if I never had Pneumonia before? Plus I haven't had a problem since. Not to mention, all x rays after the collapse came back normal- all healed. hum?

Anyway I'm getting better. Still taking the anti biotics and will get a repeat x ray in a few days. Can't wait to see what illness they give me this time!

New Year

2005-01-13T17:23:00.000-05:00

Happy New Year!

Hoping it will be. In the last few months there have been reports that Naproxen (Aleeve) may cause the same heart related issues as Vioxx etc. Are they kidding me? The FDA/ AMA or whoever has said that Aleeve should be o.k if taken as directed on the label and for no longer than 10 days. Sorry but arthritis doesn't just go away after 10 days. What is left to take? I sure hope they develop a new "safer" arthritis medication. I'm sure there are many people out there like me who are suffering!

P.S- Since giving up the Bextra I have had a major headache once a week. I was told that the headaches are a result of my neck being so screwed up so I guess the Bextra actually helped calm down my neck muscles a bit. Unfortunetly for me one headache can last for 2+ days so it has been an endless cycle of misery.

November 2004

2004-11-24T17:22:00.000-05:00

O.K so what is the deal with the FDA approving meds and then pulling them from the market years later after millions of people have taken them claiming that they are unsafe? Vioxx was pulled from the market because of an increased risk of hart attack and stroke. Putting into question the safety of the other Cox-2 drugs Celebrex and Bextra.

Yes, I was on Vioxx it actually helped for some time then stopped. I switched to Bextra which has been good for me. However it sounds like that is the next drug to be pulled.I find this really scary. I have enough medical problems don't need to add a heart attack or stroke. I stopped the Bextra.Why continue to take a medication that may not be safe and that might be pulled from the market eventually anyway?

Now I'm without anything except Aleeve or Motrin(doesn't do much). The first week I was med free I developed one of my severe migraines that lasted for four days. How does one live their life like this? Anyone know? Feeling frustrated.

July 2004

2004-07-20T17:20:00.000-04:00

I just got back from my exam out in Iowa. Things are stable. I had appointments with my Neurosurgeon(for my yearly MRI), Neuro opthamologist(for testing for my vision problems) and an Otolyrangologist (ENT)(for swallow evaluation and palate issues).
The running theme between all the doctors was yes you have alot of problems, it is caused Brain Stem damage due to having too many surgeries, and there is not much we can do.

As for my vision- I have been experiencing blurry vision and problems focussing on objects. Most of the time it feels like things are moving back and forth. Because I have many problems with dizziness and vertigo, I figured this was the cause. Turns out I have involuntary movements of my eyes(nystmus) and a more unusual pulsating of the iris of my eyes. No wonder I can't see anything! Possible treatment involves taking medication that would be sedating or the old suck up and deal method. I choose suck up and deal.

As for the ENT- The swallow evaluation showed that food does get stuck in my throat but does not appear to be a danger to me. I can usually clear it after a little effort. I have to be careful and avoid food and things that I know are problems for me(dry food, thick pasta, french fries, big pills etc.) As for the palate issues I'm probablly going to look into getting a prosthesis because surgery(although the more desirable treatment) is not really an option for me. Too many surgeries, too much scar tissue, not able to be intubated etc.

Neurologically- I'm stable He wants me to continue with the arthritis medication, continue with the headache medication, and add a muscle relaxer on the days when my neck is out of sorts. Not much more I can do to help improve my life with pain etc.

Overall it was productive. I had good exams it justified the symptoms I am experiencing. Unfortunately there are no good answers and I'm just going to have to live with it. I had a hard time with that I was hoping that someone could make my life a bit easier. I'm not sure where I'm going from here but I guess I will figure it out.

May 2004

2004-05-15T17:19:00.000-04:00

The new arthritis medication was so awful I decided to go cold turkey- no meds for a bit until my next appointment. I am curious to see what I'm like without then I can tell if it is worth using arthritis meds or not.
P.S- I went several weeks cod turkey and was miserable. Started another arthritis medication and it seems to help take the edge off a bit.

February 2004

2004-02-20T17:18:00.000-05:00

The arthritis medication quit working on me! I guess sometimes that happens. I was prescribed a different type of arthritis med to try. Keep your fingers crossed!

November 2003

2003-11-30T17:15:00.000-05:00

I have had a little success with the arthritis medication- it has worked wonders for my rib but not doing a whole lot for my neck. The medication for dizziness was a total bust- all I wanted to do was sleep. How is that going to help me? Well, I guess when I'm asleep I am no longer dizzy right?! No thanks. The headache medication only works if I catch it REALLY early. Unfortunetly I don't always get a warning. Back to the drawing board.

August 2003

2003-08-20T17:14:00.000-04:00

I just got back from my annual check up in Iowa. Neurologically I'm stable! The Syrinx is smaller than it was last year which is great news. I continue to battle dizziness, headaches, pain etc. My doctor feels that this is all the result of having so many surgeries. It seems that I have developed arthritis in my neck and rib. I will be trying out some new medications hopefully they will help me function a little better.

February 2003

2003-02-21T17:12:00.000-05:00

This is proving to be a very difficult winter for me. I am very much effected by changes in barometric pressure so every time we have a storm my head feels like it is going to blow off my spine. I'm hoping that the increase in pain, headaches etc. is just weather related and not the start of another decline. So here I am with a heating pad, headache medication, and praying for spring!

November 2002

2002-11-30T17:11:00.000-05:00

Not too much to report at this update. Still having problems with fatigue, dizziness, pain, headaches, numbness etc. I'm trying out some new medications for the headaches and muscle pain. I finally had to admit to myself that Tylenol isn't enough. The meds knock me for a loop so no chance of functioning on those days, but I figure the pain was doing the same thing so what is the difference? I'm coming up on 6 years since my car accident...what a strange trip it has been.

August 2002

2002-08-20T17:10:00.000-04:00

After having some web site issues- the server filed bankruptcy and took my former site with it! I am back on-line. Still continuing to have problems with fatigue, dizziness, pain, headaches, numbness etc. Basically nothing has changed. I recently had allergy testing done hoping that some of my sinus issues were caused by allergies- results came back negative, no allergies. Which means it is all related to surgery. Bummer- I was hoping to take a pill and feel better, silly me. I began driving again- after three long years it feels good. I only drive locally because of the fatigue etc. and only on my "good" days but what a difference a little independence makes. Keep on moving forward...

May 2002

2002-05-20T17:08:00.000-04:00

I just returned from a trip out to Iowa to see my doctor. My Syrinx is almost completely gone! I am beyond excited about that. Finally a step in the right direction. However, I am still suffering from a ton of symptoms but my doctor feels this is the result of all my surgeries even the blood pressure issues! I still have a way to go in recovery. I am no longer in Occupational Therapy - basically I reached my limit and there was nothing else that could be done. Now I do my own therapy at home. I am continuing to feel positive about a good recovery.

February 2002

2002-02-16T17:06:00.000-05:00

Looks like it is time for another update. Not much to tell at this point. I am still receiving Occupational Therapy for my hand. The strength continues to be good and the sensation has returned slightly in some areas. I still have a way to go. I am continuing to fight the battle with my blood pressure. I am making the rounds between different specialists hoping that someone will have an answer for me. Sick and tired of being sick and tired. No, I haven't given up just getting frustrated. The answer is out there somewhere.

Hard To Keep A Good Woman Down

2001-11-25T17:04:00.000-05:00

I have finished my formal speech and physical therapy. I am continuing with the Occupational Therapy for my hand. There is great improvement with the strength of my hand, however I still do not have sensation. I continue to have episodes of dizziness, lightheadedness, and blurry vision which seems to be related to my low blood pressure. I will be having some blood work done in the next week to see what is going on. Even though fatigue and headaches are still a problem, I feel as though I have made some progress. I have not given up hope for a return to a normal life! It is hard to keep a good woman down!

September 11, 2001

2001-09-11T17:01:00.000-04:00

Outlook Brighter

2001-08-15T17:00:00.000-04:00

I had some X rays taken of my neck- everything looks good so far! Finally. I'm trying to get myself into a good Rehabilitation program- once my HMO approves it, I'm ready to roll! Look out world...I'm back!

Surgery ever after

2001-05-16T16:58:00.000-04:00

I'm finally back from the hospital. I had a really rough time- lots of complications- none of which were related to my surgery. I went in for surgery 4/10/01 and they had problems putting in the breathing tube. It took 4 hours. My doctor was going to start surgery but found a kink in the tube. It had to come out and he had to do an emergency Tracheostomy so I could breathe. Unfortunately, my mouth was so swollen he could not do the Transoral surgery so I went to ICU for 2 days until the swelling went down. I had my surgery on 4/12/01 which went smoothly. During my time in the hospital I suffered a Pneumothorax during a procedure to put in a central line, Developed Sepsis from an IV line gone bad, and I also had a Deep Vein Thrombosis (blood clot) in my arm from that bad IV line. Needless to say it was a rather eventful hospital stay. I am doing O.K now. Despite everything, I gained some strength in my right hand and I'm still hoping for a full recovery.

More surgery

2001-02-14T16:56:00.000-05:00

On the plus side my blood pressure has stabilized and I am no longer taking medication! However, I'm continuing to have other problems. My brain has had some settling and is now resting on my C2 vertebrae. I will once again have surgery 4/10/01 to remove the C2 vertebrae and relieve the pressure. This will require another Transoral surgery. Let's hope this will fix the problem!!!!

Surgical complications

2000-11-30T16:54:00.000-05:00

I had a Subarrachnoid Shunt inserted into a small space between my brain and spinal cord. I also had my soft palate repaired by having fat taken from my stomach and then injected into the defect. It has been a rough recovery from this surgery. I seem to have suffered some nerve damage in my hands- the right one especially. I'm currently in therapy to help strengthen and return functioning to my hands. I have also developed severe Orthostatic Hypotension . Every time I have a position change from laying down to standing up, my blood pressure drops so low I black out. I am currently taking medication for this.

Complications

2000-08-25T16:52:00.000-04:00

I have developed some complications from my surgery in October 1999. I have lost strength and functioning in my right hand. An MRI confirmed a Syrinx .I have also experienced sinus and voice problems because there is a space left in the Soft Palate of my mouth from the Transoral Surgery . This was diagnosed as Velophyrangeal Insufficiency . I will once again have surgery 8/29/00.

Brace comes off

2000-05-20T16:47:00.000-04:00

I finally got the green light to take off my awful brace. I had to wear a Minerva Brace for 7 long months. Originally I was supposed to be kept in a Halo. Unfortunetly, I was considered a high risk for infection due to my VP shunt (the Halo pin and VP shunt were sitting rather close together) So I was placed into the Minerva. I kept it on 24 hours a day, 7 days a week! Sleeping in it was like sleeping on a hard, concrete floor. Not very comfortable!