Friday, August 8, 2014

Update

As of now I have significant left arm weakness, and optical nerve head swelling in one eye and I am losing sight in that eye. My Optometrist has referred me to a neuro-ophthalmologist.
I am slowly gaining strength in the gym - with the exception of the left arm & shoulder - but the rest of me is progressing. It's a tough fight, but I know that it's helping some areas of my body cope. About every 3 months I see a chiropractor to realign my neck. The last cervical MRI revealed 3 herniated disks ( 2 of which are greater than 4mm),  osteophytes (bone spurs), stenosis, degeneration and cord compression. If I don't see the chiro when the headaches start and fail to cure with Advil, they will continue. Once I get the adjustment, the headaches cease until the next time it goes out. In short, majority of the headaches are from the CMI and once in a while the cause is hormonal.
I need to get in to see the Chiari Specialist and then have him refer me to a Neuro Surgeon who has a lot of experience with CMI patients so he/she doesn't paralyze me when they perform surgery on my neck. According to one Doctor my neck needs a - two level fusion/hybrid  surgery - and possibly disk replacement. So,  I need to get started on this, especially now since I have PPO and can see Doctors who aren't being ruled by  whomever prevents them from doing what SHOULD be done!

Friday, August 24, 2012

A little excerpt from my book

Its funny....When I pause because I feel dizzy, people say "Oh it's probably the heat or you must have stood up too fast." When I say, my eye wont stop twitching, they say "oh you're probably stressed or nervous." I am neither of the two. When I say, my heart feels like it's going to beat out of my chest, they ask " did you drink any caffeine?" When I say that I have heinous headaches, they say "oh it's probably hormone changes, I have those too!!!" When I say that I have had 32 heinous worse than any migraine, nothing works to stop them type headaches over 6 weeks time, they look at me sideways and say, "Have you seen a Doctor?" I say, Of course I've seen a Doctor but majority of them don't have a clue about my condition, and often when they do, the insurance has them in pocket to evade costly treatments thus evading an accurate diagnosis. When I say that I get up 6x a night to urinate, they say "with age your bladder changes," even though I've had that symptom since the age of 25. When I say that my left arm is losing significant strength, and both arms are numb quite frequently, they say " maybe you slept on them." When I say that I can't go hiking today because I am feeling horrible, they say " really? You seemed fine yesterday." When I say that my peripheral vision in one eye has suddenly decreased, they say "oh yeah my eyes went as soon as I turned 30." Even though I've had impeccable vision up until my head injury which caused my chiari to run rampant.When I say that I am having trouble remembering things today, they say " how old are you again?" And tomorrow my memory might be just fine. When I say that I have bad days and good days, weak days and strong days, they say " maybe it's all in your head?" And that's when I say YES IT IS ALL IN MY HEAD, I HAVE CHIARI I MALFORMATION. My brain is herniated. They say "What in the world is that?" I say, If you bothered to lend an hour of your time you would understand the condition better and maybe be able to support your friend or family members who have it. But what you will never understand is that a symptomatic CMI is far worse than having a disease that will kill you. Because once symptoms present themselves, your life of suffering begins and ends when you die! Welcome to the life of the typical symptomatic chiarian!!!

Tuesday, August 14, 2012

My Switch To PPO -My can of Whoop-ass

I have FINALLY made the long anticipated switch to PPO! Now maybe, just MAAAAYBE I'll get the care that I need and deserve. I can finally go directly to the Doctors who specialize in my condition. Today I have had so much pain it's crippling me.   The insurance is about a month late in getting me my new PPO card so my care is delayed as a result.


Tuesday, July 3, 2012

May through July...EMG Testing....Ortho..Neuro & Back

I had the EMG done about 3 weeks ago. Everyone warned that it would hurt. UH...maybe those people don't know what pain is? The arm that seems normal hurt more than the one that is weak and sometimes painful. On the good arm it was mildly uncomfortable, I don't even think we can use the word pain if one had experienced the comparison to chiari neck pain and headaches from it. The bad arm I felt almost nothing. To no surprise, I was told by my ortho that the EMG came back normal. But of course. I haven't read the report myself yet, but based on my previous experiences with this HMO network, I expected this would be the case. The neurologist who did the EMG is working under referrals with my hmo-in-network team. Anyway, he did say that just because it comes back normal doesn't mean that I don't have nerve pain, weakness, and numbness from nerve impingement but that it means theres no "nerve damage" yet.. I explained to him that my symptoms were off the hook until I had my chiropractor adjust my neck.  It seems that when C-1 and/or C-2 slip out is when it gets real bad. This usually happens when I accidentally sleep on my stomach and turn my head to the left. So, my ortho now recommends a pain specialist, and epidural injection in my neck. At first I agreed and thought this would be a great idea, but not so fast.  Ive read stories about people with chiari malformations who have had the epidurals, and majority of them did not have a positive reaction to it. I did also hear that chiropractic is an absolute bad treatment for CMI patients, and I must say that it is the only thing that's kept me from having to live on some serious narcotic to cope with the pain.  DUH, what would you rather do? Id much rather ingest meds on an occasional basis than live on them daily. Chiropractic adjustments have saved my life, but it takes a special chiropractor to do it correctly. I had one for a while who would adjust me, and id feel the same, and sometimes a little worse but in a different way. He wasn't aware of my chiari malformation, and I had forgotten all about it because when we found it on an MRI years prior, I was told that it was nothing to be concerned about unless I have more symptoms than just headaches I had. That was then, this is now. So lets sum this up...I was under PPO care when my chiari was first found. I've been under HMO care the past 4 years. The PC Dr.  Ive seen since I signed into an HMO claims he's tried to get me into a touchiary center to see a dr who knows about CMI. Hes sent me to so many referrals that insurance says were all out of options. Sounds a little routine? The ophthalmologist who found that my peripheral vision is faulty in one eye, and has diagnosed me with peripheral Neuropathy, says that I need to see a Chiari expert neurosurgeon and that hes told my PC Dr. this.  Neurologist #1 that I saw, claims that hes recommended that I see a neurosurgeon specializing in CMI, yet nothing has changed.  UCLA ER did nothing for me but refer me to their neurologists for follow up, even though I couldn't walk a straight line out of their ER.  They also knew that I couldn't get the referral to see their neurosurgeons through my HMO. The ortho says that I should be seeing a Chiari specialist Neurosurgeon and if he could refer me he would. LOL....but he has also ordered an epidural  steroid injection for c5 and c6 of my neck. The neuro who did the EMG (Neuro #2), also said that I should be seeing a neurosurgeon for the Chiari.  Meanwhile his EMG tests came back normal.  Nothing has changed. same medical group, same stale problem. Capable drs afraid to speak up, and lose the referral's generated from the medical group. Two good Dr's who did speak up, but it didnt change much. Now here is where it gets good! Though I haven't been able to work much since my symptoms began to over rule my life at unpredicted times, I have found a way to switch to PPO!  This is going to be epic! Just wait..... I am headed straight to the top neuro-chiari specialized surgeon closest to where I reside.  It's time to rock and roll!!! No more in-pocket-dr's and lies. Some of these Doctors have wasted 4yrs of my life, and actually tried to re-write my medical history!!! goodbye HMO!!! Never again, you should feel blessed that I don't sue you all for negligence, malpractice,misdiagnosis and for wasting my valuable time.  A special thanks goes to the two Specialists who were honest, stood up to my PC Medical Group and told them what needed to happen! Even though it didn't get done, I appreciate you, the good Doctors that is! I am working out when I possibly can, steering around the pain, using advil to get through my gym sessions. With each day that I manage to build muscle, and lose weight, I do feel stronger, therefore better overall, and my neck seems to hold position for a longer period of time, post chiro adjustment,  but the eye twitching, amongst several other neurological symptoms persist, although lesser when the cervical vertebrae are in their correct position. Currently I am experiencing dizziness upon standing, choking when I try to sip water from a glass, not a straw, headaches, neck pain, back of head pain, pressure in the head, peripheral vision loss in L. eye, both eyes twitch simultaneously, sensitive to loud and/or mixed sound, bladder and colon urgencies, which in it's mild form is still  considered "loss of control". Just because you're not relying on a diaper yet, doesn't mean you aren't headed there! Remember that when your Doctors try to prove a point that you don't have a loss of control. The same goes for the limb numbness, weakness and pain. Just because the nerves aren't' completely destroyed doesn't mean that you aren't on your way there!!!  I'll be walking a 5k in October, but I'll also be dropping 800mg of ibuprophen before doing so. Just because we can control pain doesn't mean we should be forced to live on meds when there's  a surgery to repair this condition!!!
I am eating a lot of raw vegetables, almost no sugar, including that from fruits,  rarely any meat, caffeine once in a while and it's the green tea type.  I've lost 9lbs, and my blood pressure is 10 points lower than it was 6 months ago. I weight 155 lbs and I was an athlete before all of these symptoms took over my life.

Friday, May 25, 2012

FEB to May and a trip to UCLA

Got the confirmation that I had peripheral neuropathy from the ophthalmologist. He ref. me to have a brain mri with contrast.
Nothing has been done since.
Went to the UCLA ER again for extreme dizziness, and severe continuous headaches for 2 months. My neuro told me to go b/c I couldn't even talk normal for two days prior. The ER set me aside for 2 hours. Sent 3 people to see me, and terrorize me with repeated questions. I felt like I was on trial or something. I gave them my symptom list. They told me that because I had a brain mri recently that they can't do another one, despite the fact I couldn't even walk a straight line without falling over. I asked what if I fall down my stairs because I am so dizzy and she told me to make sure that I have a support person by my side 24/7 so that doesn't happen!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! LOLOLOLOLOLOL Seriously UCLA? Seriously????
Regardless, they sent me home and told me to call them the next day to set an appointment with their neurologists. I forgot to mention that the ER was slammed that night. Yep. I'm sure some others had better insurance than I did. Whooopdeeeedooooo
When they called me to follow up, I filed a complaint!
Again, I paid my ER co/pay and got no where.

Was sent this week for upper body nerve conduction tests. Having a needle stuck into your nerves and then electrocuted stings a little, but I can't consider that "pain" because I know what real pain is. LOL
Dr. said that the nerves didn't seem damaged, but that doesn't mean I don't have weakness, tingling, numbness and pain. Ya think? I got the speech about age equating to the stuff he sees in the neck MRI, however he missed the part where the CSF flow is partially blocked by the bulged disk, and the bone spurs are poking into my spinal cord.  I'm sorry but people in their 30's who have been fit their entire lives and never injured, or don't have ACM,  aren't typically experiencing the symptoms that I am. Maybe if I were out of shape, and obese okay, I'd accept that crap, but no, this is NOT how a 30 something person should live. Jesus, can't they just be honest for once? I'm gonna strangle me a Doctor one of these days! LOL

 The neuro also said that I should be seeing a neuro surgeon for the Chiari. I explained that none of them in the hmo know what they are doing when it comes to chiari b/c they don't specialize in it.
So why bother? Am I actually going to let them cut my head open when it's not their specialty?
You should see what the last HMO Dr. did to my foot when they removed a bunion. I'm far worse than I was before they touched it.  He didn't properly anchor the first metatarsal, it misaligned, it healed out of place, and now my toe wont bend enough to take a normal step. Isn't that awesome??? To think I'd let them cut into my head is just pure idiotic.

So now I'm expecting that the tests will come back perfect with flying colors and there might just be a note attached that "it's all in my head". LOL We shall see!

My headaches have eased up. Not near as many. I have no idea why. I am going to the gym when possible, my neck is getting stronger but the left arm cannot keep up. It's fat, while the right is muscular. Yep, no fun. 

Stay tuned!!!!!!!!!!!!!!!

Tuesday, February 21, 2012

My DIET & Still Gaining Weight

So many people have asked what I eat. I have hired a nutritionist to test my blood and create capsules of customized nutrients /vitamins and things my body lacks in diet. That combined with a balanced diet helps a lot in coping with this disorder. I just cant help but wonder why am I coping? Why can't we just get on with the surgeries, on both my neck and head because they need it.
Worthy of noting; I do not drink but once a year for celebration. I do not smoke, and never have. I do not use drugs of any type except when absolutely necessary prescription medication for the migraines. (Maxalt).
I do not do anything to invoke a decline in my health. I use air purifiers, drink reverse osmosis water, and would rather have a local, than general anesthesia, to avoid those toxins as well. Ive exercised my entire life, and basically treat my body like a temple. I find it difficult to feel sorry for anyone who complains about their illnesses, as they suck down the alcohol and/ or smoke their drugs. Sorry.

Before my symptoms went nuts in 2007 I weighed 139 lbs. and keep in mind majority of that was muscle.
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Feb 21,12 Weight: 165 am
Blood Pressure at PC Dr. was at an all time high!
Breakfast: 3 boiled egg whites. 1 slice of wheat toast. 7 1/2 oz Trader Joes Green Protein Drink. Multiple Vitamin. Grape Seed Extract 60mg. 15 drops of grapefruit seed extract in warm water.
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 July 3, 2012 Weight: 154 

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May 8, 2013 Weight: 166 Blood Pressure 112/70

Friday, January 27, 2012

RECORD BREAKING HEADACHE SCHEDULE:
Advil is no longer working. I need to take that and Maxalt together. :( These headaches are debilitating.
I woke up today with another headache.
I know that I need this surgery now, but I am on an HMO and they are crawling with my care. I need donations to get the decompression surgery, because my medical group does not work with any chiari specialists, and I'd rather not have this surgery, than allow just any neuro surgeon slice my cranium in half.

Headaches;
December  28, 29, 30, 31
Jan 4th, 5, 6, 7, 9,14, 15, 17, 18,21, 22, 26, 27.
Feb. m 18, 19,20,21 e. (Waking up with them)
Ive taken 3 very strong antibiotics over the past year, I sure hope that they didn't damage something.
It is kind of odd that I had foot surgery and my post op boot came off on the 26th of Dec. This streak of headaches began just after that. I wonder if walking around on a fractured foot has anything to do with it? Or is it just my neck and chiari tag teaming me?

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2-2-12

No headaches for 3 days now, I am STOKED! Seriously. I began taking Grape Seed Extract 4 days ago, along with Vitamin C and a different multiple vitamin. Also a vitamin that's specifically for the eyes.
But I did wake up this morning with both shoulders and part of arms numb. That was creepy.

And I found out today that one of my Grandmothers died at age 41 from  hydrocephalus. How interesting!

Are other conditions associated with Chiari malformations?

Individuals who have a CM often have these related conditions:
Hydrocephalus is an excessive buildup of CSF in the brain.  A CM can block the normal flow of this fluid, resulting in pressure within the head that can cause mental defects and/or an enlarged or misshapen skull.  Severe hydrocephalus, if left untreated, can be fatal.  The disorder can occur with any type of CM, but is most commonly associated with Type II.

2-9-12
Still haven't had a headache yet! Knock on wood. YAY This IS the longest break I've had since they began in December. Thank God!!!
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2-17-12 7pm
I felt pressure today when standing up. I feel a slight headache coming on. I hope it doesn't happen. :/
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2-18-12
Couldn't sleep b/c the headache set in after I went to bed. Finally forced to get out of bed half asleep, I took some advil and kicked it. Thank God that worked.
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2-19-12
Advil for breakfast. Headache came back once the med stopped working. Took more toward the evening.
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2 -20-12
Advil for breakfast. Headache returned by early evening.
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2-21-12
Trying to sleep with a headache is brutal. I stayed in bed until I couldn't stand it any longer. Advil for breakfast again. I can't help but wonder, at what point am I supposed to go to the hospital? And even if I do, what the heck are they going to do for me? A ct of my head doesn't show crap and shoots a high dose of radiation through me.
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YOU DON'T EVEN WANT TO KNOW WHAT I WENT THROUGH AT THE ER ON SATURDAY! I'll be back to discuss that further when I have more time!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 SEE THE NEWEST THREAD WHERE THIS CONTINUES..............