Sunday, November 27, 2011
CCSVI
Please read this blog (most recent to earlier posts) if you have auto-immune, circulation, behavioral, or degenerative issues.
A Few non--verified suggestions if you suspect you have CCSVI
You may get diagnosis and treatment within weeks of reading this. However, if insurance is a hurdle and takes time, keep these (non-verified, my own ideas) in mind:
Listen to your body and start recording your activities, sleep patterns, food - and what happens when you do these things. You might notice a pattern (deprived sleep gives you more pain, certain foods are stimulants, etc.). This will help make the case with your physician for diagnostics.
Your doctor may not know about this. Don't be sore with her/him. It is new. Bring links and a summary of what CCSVI is so they can do research and give you a referral.
In CPR class I learned that drinking 8 oz of water can raise or lower your body temperature up to 3 degrees. Since temperature regulation problems is one of the symptoms of CCSVI, drinking water can help cool you when you're hot, and warm you when you're cool. It can be used in emergency situations for hypothermia and heat stroke if the victim is awake.
Keep aspirin with you. This is a default method that thins blood. My dad takes one aspirin every day to keep blood flowing properly. Other cholesterol meds are good idea, too, if you have plaque build-up in arteries. I'm assuming it will help veins as well.
Stop or slow down smoking. Smoking creates circulation issues and increases free radicals.
All of the suggestions the public is given on diet and exercise are a good idea if you can handle it. Move at a moderate pace but fairly consistently. Take up that activity you used to love (unless head-butt soccer balls). Yes, this entry is for you, Kel. As for diet, my PCP, Dr. Savage, suggested the Paleo Diet. Basically, fish and greens like our ancestors ate. I have been trying this for a few days. My numbness is still here, but reflux issues subsiding dramatically.
Try natural approaches to dealing with this first, like diet and atlas adjustments. If anything it can buy you time. I did yoga at times I was allowed (by the chiropractor). This increases circulation, blood pressure (in a good way), stress reduction, flexibility, strength, digestion, and reduces toxins. My atlas chiropractor is: www.borerchiro.com. I chose them because they have done more than 60,000 adjustments and really work to understand your issues. Many symptoms related to the accident and not related to the accident improved. My sinus issues improved by about 80% and TMJ improved (in conjunction with orthodontic care). I can testify it works because when I skip a visit I am hunched up until I get there. I also went to yogahealth.org with LeeAnn. LeeAnn is a firecracker! What a positive and loving force, only eclipsed by my own parents, grannies, and my back-up parental figures (you know who you are).
Talk to other people about your issue. Spread the burden and the joy of hope.
Question the prescription meds you're taking. Just covering up symptoms is not enough. Figure out if there is a more permanent way to take care of your issues.
Lobby for more research, diagnostics, and treatment centers in the US. Lobby for federal funding for research and facilities as well. Call your insurance companies every day if you have to. Contact your HR person and try to evangelize her to your cause and situation. Maybe she has some cards up her sleeve or a few favors to call in.
Keep following the new research and applications. At first Dr. Zamboni said reduced-size veins were only in MS patients. He has since recanted that statement because they are found in people with other issues.
Ask yourself this: How might my circulation be harming me? If you can identify a path of destruction, CCSVI is worth investigating.
Listen to your body and start recording your activities, sleep patterns, food - and what happens when you do these things. You might notice a pattern (deprived sleep gives you more pain, certain foods are stimulants, etc.). This will help make the case with your physician for diagnostics.
Your doctor may not know about this. Don't be sore with her/him. It is new. Bring links and a summary of what CCSVI is so they can do research and give you a referral.
In CPR class I learned that drinking 8 oz of water can raise or lower your body temperature up to 3 degrees. Since temperature regulation problems is one of the symptoms of CCSVI, drinking water can help cool you when you're hot, and warm you when you're cool. It can be used in emergency situations for hypothermia and heat stroke if the victim is awake.
Keep aspirin with you. This is a default method that thins blood. My dad takes one aspirin every day to keep blood flowing properly. Other cholesterol meds are good idea, too, if you have plaque build-up in arteries. I'm assuming it will help veins as well.
Stop or slow down smoking. Smoking creates circulation issues and increases free radicals.
All of the suggestions the public is given on diet and exercise are a good idea if you can handle it. Move at a moderate pace but fairly consistently. Take up that activity you used to love (unless head-butt soccer balls). Yes, this entry is for you, Kel. As for diet, my PCP, Dr. Savage, suggested the Paleo Diet. Basically, fish and greens like our ancestors ate. I have been trying this for a few days. My numbness is still here, but reflux issues subsiding dramatically.
Try natural approaches to dealing with this first, like diet and atlas adjustments. If anything it can buy you time. I did yoga at times I was allowed (by the chiropractor). This increases circulation, blood pressure (in a good way), stress reduction, flexibility, strength, digestion, and reduces toxins. My atlas chiropractor is: www.borerchiro.com. I chose them because they have done more than 60,000 adjustments and really work to understand your issues. Many symptoms related to the accident and not related to the accident improved. My sinus issues improved by about 80% and TMJ improved (in conjunction with orthodontic care). I can testify it works because when I skip a visit I am hunched up until I get there. I also went to yogahealth.org with LeeAnn. LeeAnn is a firecracker! What a positive and loving force, only eclipsed by my own parents, grannies, and my back-up parental figures (you know who you are).
Talk to other people about your issue. Spread the burden and the joy of hope.
Question the prescription meds you're taking. Just covering up symptoms is not enough. Figure out if there is a more permanent way to take care of your issues.
Lobby for more research, diagnostics, and treatment centers in the US. Lobby for federal funding for research and facilities as well. Call your insurance companies every day if you have to. Contact your HR person and try to evangelize her to your cause and situation. Maybe she has some cards up her sleeve or a few favors to call in.
Keep following the new research and applications. At first Dr. Zamboni said reduced-size veins were only in MS patients. He has since recanted that statement because they are found in people with other issues.
Ask yourself this: How might my circulation be harming me? If you can identify a path of destruction, CCSVI is worth investigating.
Circulation Vascular and Autoimmune issues have new hope
CCSVI was discovered in 2009. It may help you or someone you love. Chances are you know someone with a circulatory problem, anxiety/depression or other "behavior disorder", autoimmune or chemical imbalance. Please pass on to others.
CCSVI makes your body deteriorate faster than people who do not have the issue. It stands for Chronic Cerebralspinal Venal Insufficiency. Veins in the neck, heart, and now transmandible area shrink or constrict (from damage, birth defects, cold, etc.) clog partially or entirely and blood can not drain from the brain or other areas properly. The way this effects you depends on what is in your blood - extra iron from red meat can do a lot of damage (heavy metals are very damaging); other types of toxins do different types of damage. This leads to free radicals breaking down tissue where there is stagnate blood. Sometimes the blood even reverses and travels back down it's path. This started as as an MS discovery, because MS cadavers brains have so much iron built up. Aluminum is what is found in Alzheimer's patients' brains. Doctors once thought this was a bi-product of the diseases, but now it is being considered as the cause.
I put this blog together with links to different research. My purpose is to continue sharing info as it becomes available, and make everyone aware of this new research and treatment. Permanently damaged areas may not heal themselves, but the process of degeneration may be slowed down or stopped.
My search for the cause of my own deterioration started 18 months ago. I had an accident April 2010. I developed TMJ from cracking a tooth and having one side of mouth filed down until I could see my dentist, Dr. Berman (who is the best). I had increasing anxiety, pressure, neck and back issues over the next few months; then auto-immune symptoms. I've discovered the issue may be CCSVI. Read on to find out more. I am going to a clinic in Costa Mesa, CA for treatment as soon as my insurance is approved and/or I've lobbied for a change in how this relatively new discovery is handled by insurance companies. I will probably have to call BCN several times daily to get this moving. Please check this blog monthly to follow progress and get contact info for senators, insurance companies, etc.
I am hoping to go to VAS for treatment. The diagnostics, confirmation, procedure and recovery takes 4 days. I've listed the only vascular center that I've found to take insurance. Also, they have the highest success rate (up to 80%) because of the thorough imaging and other testing for blockages. Here is the link to who my PCP will hopefully refer: http://www.vascularaccesscenters.com/PublicPages/Home.aspx
Here is a link to other facilities in the US: http://ccsvicare.com/contact-us/ccsvi-locations/
There are other facilities available, but none in MI at this point. Wayne State does have a research program (and likely diagnostics). My suggestion is to go where the specialist is in your area, and start insurance rebuttal early, as this condition was only discovered in 2009 and easy to turn down by insurance by citing "research stages". Don't back down. I only heard about this because a friend of a friend with MS was successful getting it covered by her insurance. She's also vastly educated me on the procedure, differing approaches, time the procedure lasts, etc.
CCSVI makes your body deteriorate faster than people who do not have the issue. It stands for Chronic Cerebralspinal Venal Insufficiency. Veins in the neck, heart, and now transmandible area shrink or constrict (from damage, birth defects, cold, etc.) clog partially or entirely and blood can not drain from the brain or other areas properly. The way this effects you depends on what is in your blood - extra iron from red meat can do a lot of damage (heavy metals are very damaging); other types of toxins do different types of damage. This leads to free radicals breaking down tissue where there is stagnate blood. Sometimes the blood even reverses and travels back down it's path. This started as as an MS discovery, because MS cadavers brains have so much iron built up. Aluminum is what is found in Alzheimer's patients' brains. Doctors once thought this was a bi-product of the diseases, but now it is being considered as the cause.
I put this blog together with links to different research. My purpose is to continue sharing info as it becomes available, and make everyone aware of this new research and treatment. Permanently damaged areas may not heal themselves, but the process of degeneration may be slowed down or stopped.
My search for the cause of my own deterioration started 18 months ago. I had an accident April 2010. I developed TMJ from cracking a tooth and having one side of mouth filed down until I could see my dentist, Dr. Berman (who is the best). I had increasing anxiety, pressure, neck and back issues over the next few months; then auto-immune symptoms. I've discovered the issue may be CCSVI. Read on to find out more. I am going to a clinic in Costa Mesa, CA for treatment as soon as my insurance is approved and/or I've lobbied for a change in how this relatively new discovery is handled by insurance companies. I will probably have to call BCN several times daily to get this moving. Please check this blog monthly to follow progress and get contact info for senators, insurance companies, etc.
I am hoping to go to VAS for treatment. The diagnostics, confirmation, procedure and recovery takes 4 days. I've listed the only vascular center that I've found to take insurance. Also, they have the highest success rate (up to 80%) because of the thorough imaging and other testing for blockages. Here is the link to who my PCP will hopefully refer: http://www.vascularaccesscenters.com/PublicPages/Home.aspx
Here is a link to other facilities in the US: http://ccsvicare.com/contact-us/ccsvi-locations/
There are other facilities available, but none in MI at this point. Wayne State does have a research program (and likely diagnostics). My suggestion is to go where the specialist is in your area, and start insurance rebuttal early, as this condition was only discovered in 2009 and easy to turn down by insurance by citing "research stages". Don't back down. I only heard about this because a friend of a friend with MS was successful getting it covered by her insurance. She's also vastly educated me on the procedure, differing approaches, time the procedure lasts, etc.
Circulatory Issues - Listen to your body
So far, here are the symptoms that I've found online that may be associated directly or indirectly to CCSVI (being researched or to treatment stage):
Why haven't I heard of this? CCSVI was discovered in 2009:
Should I be checked for CCSVI?
I am not a doctor. I can only suggest you "Listen to your body". You may know already that your family has a history of heart problems, systemic fibrosis, small veins, etc. You may have played football or another impact sport (or carried a heavy backpack in the military) - any situation where neck compression could have compromised the bone structure or vein integrity. You may have been in an accident or had to hold your head in an unnatural position for too long at a job or in surgery/dental care. I have been searching for a way to reverse or at least stop the deterioration I can feel. My explanation to my husband was simply, "there's something wrong with my head - circulation". There were many signs along my path after the accident. Here are a few signs I did not recognize until this weekend, and how I think they relate:
- Neck, back, vein, brain, jugular, heart injury or defect
- Multiple Sclerosis
- Autoimmune diseases
- Gout
- Migraines
- Sinus issues
- TMJ
- Trouble regulating temperature - cold hands, feet
- Reflux
- Dizziness, coordination issues, significant
- Rheumatoid Arthritis, other arthritis, Parkinson's
- Circulation issues - it makes sense that if you have small veins in one area (say your legs), they could be in your neck, heart, etc.
- ADHD, Autism spectrum, ADD
- http://www.rainiernaturalhealthclinic.com/ccsvi.html
- Changing posture
- Systemic fibrosis
Why haven't I heard of this? CCSVI was discovered in 2009:
Should I be checked for CCSVI?
I am not a doctor. I can only suggest you "Listen to your body". You may know already that your family has a history of heart problems, systemic fibrosis, small veins, etc. You may have played football or another impact sport (or carried a heavy backpack in the military) - any situation where neck compression could have compromised the bone structure or vein integrity. You may have been in an accident or had to hold your head in an unnatural position for too long at a job or in surgery/dental care. I have been searching for a way to reverse or at least stop the deterioration I can feel. My explanation to my husband was simply, "there's something wrong with my head - circulation". There were many signs along my path after the accident. Here are a few signs I did not recognize until this weekend, and how I think they relate:
- Stimulants, drugs, alcohol, suppression meds - any drug or exciting food - seem to effect me more than other people. I am on 4 prescribed meds, and they stay in my system longer, so I have to take 1/2 the dose. Alcohol stays in my system for about 3 days (1 glass of wine). Motrin works for about 50% longer than supposed to before re-dosing. Controlled substances of any kind have a more dramatic and lasting effect on me.
- An insatiable need to drink diuretics constantly. Soda, licorice tea, natural blood thinners. Many spices are natural blood thinners and I've craved them: garlic, tumeric - here is a list of blood-thinning foods you might crave: http://www.ctds.info/natthinners.html The problem is that reflux is associated with this condition, so everything in moderation...
- Symptoms worsen as it gets colder (veins constrict) and exciting or stressful situations (more blood pumps to head, but is not necessarily draining). I skipped more get-togethers in the winter due to dizziness and excitement.
- Anxiety driving (only sometimes).
- Moving makes me feel better. In most asthmatics, exercise induces asthma. In my case, it is the opposite. However, my arms and legs are fatigued to a point where I can't do exercise right now, and it was recommended I stop by the chiropractor until treatment has progressed.
- My coloring fades from green/pink to green skin.
- I felt (and feel) from the first week of the accident that if I laid down I might have a stroke. There was a lot of pressure on the back of my neck - like someone was clamping down - especially laying flat on my back. Can not sit at computer for more than 20 minutes at a time. There is some suggestion that these are mini-strokes.
- I previously had trouble taking aspirin, but since this issue take an aspirin whenever I feel lightheaded. I was treating for a stroke or heart issue without thinking about it. The symptoms slowed after about 40 minutes.
- I have to move and change positions constantly. Resting hurts.
- I am sometimes fatigued. It is especially bad during PMS time, as I load up on iron-rich food. All kinds of crazy issues come from this. Spacing out, feeling like blood sugar has dropped (although it is perfectly within normal ranges).
- Upon seeing a rheumatologist, it was suggested I stick to veggies, dairy and meat++ - and avoid carbs. I felt somewhat better, but the dizziness and numbness. I was eating better more whole foods that went through my system faster. While I was not being influenced by sugar spikes, but the iron was coagulating in my head faster than ever.
- Need to say goodbye, get affairs in order, finish unfinished projects and business, and "nest" in case I did actually have a stroke.
- Sensitivity to light, sound, repetitive chores, repetitive sounds, music, tv, anything that overly stimulates
- Gaining even a little weight adds pain
- Putting myself in a warmer place (jacuzzi, in front of heater) great as long as it's not for too long. The veins open up. Unfortunately, for too long the heart starts pumping more and the issue worsens after 15-20 minutes.
- Petting puppies and having kids around helps keep blood pressure down. These things make me happy.
- Massage helps with circulation. Inversion table helps, also. If you don't have one of these, hang off of your bed from the waste down (secure yourself with your hands on the floor if needed, but best to let the neck decompress by hanging).
- Friends and family who smoke are constantly told to stop because of circulation problems. Bodies deteriorate faster from more free radicals. I don't care if someone smokes or not, but any circulatory impairments you can avoid seem like a good idea... Lighten your back pack (or your childs), carry a smaller shoulder bag, take frequent walks or stretch at work.
- Friends with MS are told to eat only the minimal calorie requirements for the day and go on macrobiotic (whole food, 80% raw) diets. They weren't told why, but now I think the reduction in food reduces the iron deposits and slows the disease.
- Friends with MS are also told not to sleep more than the required amount of time. Being stagnant for long periods of time can also be a problem.
- Gout is a circulatory issue - I would lobby for MRV's of veins leading to the inflamed tissue.
- For people with anxiety - you feel like you're having a stroke. Maybe you are...little tiny ones that push themselves through. Just a thought.
CCSVI may be the answer to wellness
Why didn't my doctor check for this? The week of Thanksgiving I take my BFF from NY out to lunch. She tells me her friend had MS and a lot of pain in her neck. It turns out she had vein blockage in her neck. She had MS and she pursued this experimental treatment in Pennsylvania.
The short version of it is this: It was too new! I was checked for carotid artery issues from the accident. My arteries and heart are working perfectly. The arteries pump blood from the heart to through the body. The blood pressure is regulated. In CCSVI, the veins become restricted in the neck and or heart from shrinking (damage, plaque, bone compression, genetic issues like small veins) and clog like a drain, leaving behind toxins in the brain, specifically iron. The are not always clogged. People have good days - then there are those times when you just "space out".
MS cadavers have an excess of iron in their brains. The iron begins to damage the cells through free radicals. The treatment is to treat the veins with an angioplasty-type procedure and leave a stent in if needed to keep the vein from collapsing. To know if you have the issue of small or damaged veins, an MRI and MRV needs to be done (with contrast) with key timing of the veins in question. My doctor did "doppler readings" which show nothing - they need to actually see the balloon-looking pooling of your veins. If you have a combination of issues and suspect CCSVI, search "CCSVI" and your issue in Google. That's what I did.
Here are some links if you are interested in doing more research:
http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/
Intro - since this, venal issues found in others without MS but who have other vascular/auto immune issues
http://www.youtube.com/watch?v=iJ9bv7jx-Ls
I have issues going from standing up to lying down. Some people have head rushes going from lying down to standing up, but my issue was the opposite - because I put pressure on my neck.
http://www.facebook.com/note.php?note_id=258642937489910
This study was presented Sept. 2011 at a conference and shows a link between CCSVI and TMJ
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206
Originally published as an MS treatment, it is now much more
https://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ccsvi-confirmed-at-my-daughters-cause-of-pots/
Pots syndrome is a catch-all for symptoms like dizziness, not being able to turn head or stay in one position for long, tinnitus (not related to ear problems), etc.
More on pots:
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
CCSVI and sinus issues - cranial pressure - issue can be found in more than the neck and heart:
http://www.youtube.com/watch?v=Z-um5urtjNs
The short version of it is this: It was too new! I was checked for carotid artery issues from the accident. My arteries and heart are working perfectly. The arteries pump blood from the heart to through the body. The blood pressure is regulated. In CCSVI, the veins become restricted in the neck and or heart from shrinking (damage, plaque, bone compression, genetic issues like small veins) and clog like a drain, leaving behind toxins in the brain, specifically iron. The are not always clogged. People have good days - then there are those times when you just "space out".
MS cadavers have an excess of iron in their brains. The iron begins to damage the cells through free radicals. The treatment is to treat the veins with an angioplasty-type procedure and leave a stent in if needed to keep the vein from collapsing. To know if you have the issue of small or damaged veins, an MRI and MRV needs to be done (with contrast) with key timing of the veins in question. My doctor did "doppler readings" which show nothing - they need to actually see the balloon-looking pooling of your veins. If you have a combination of issues and suspect CCSVI, search "CCSVI" and your issue in Google. That's what I did.
Here are some links if you are interested in doing more research:
http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/
Intro - since this, venal issues found in others without MS but who have other vascular/auto immune issues
http://www.youtube.com/watch?v=iJ9bv7jx-Ls
I have issues going from standing up to lying down. Some people have head rushes going from lying down to standing up, but my issue was the opposite - because I put pressure on my neck.
http://www.facebook.com/note.php?note_id=258642937489910
This study was presented Sept. 2011 at a conference and shows a link between CCSVI and TMJ
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206
Originally published as an MS treatment, it is now much more
https://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ccsvi-confirmed-at-my-daughters-cause-of-pots/
Pots syndrome is a catch-all for symptoms like dizziness, not being able to turn head or stay in one position for long, tinnitus (not related to ear problems), etc.
More on pots:
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
CCSVI and sinus issues - cranial pressure - issue can be found in more than the neck and heart:
http://www.youtube.com/watch?v=Z-um5urtjNs
Rear end Accident - my story
On my birthday I had my 5th car accident - 4 of which were rear-end collisions. I had not received treatment for any of the accidents in the past. On the 2nd (rear-ended with infant son by a drunk driver) my neck hurt for about 8 months. I did yoga and inversion excercises, and felt 100% about 8 months later. I did not not miss work or social engagements. My neck was simply sore. I did not have any symptoms after the other accidents.
After the April accident, I had a "mental standstill". I was not paralyzed or in a lot of pain, but I could not lie down or sit without an urge to keep walking or changing positions. Following is the symptom and diagnostic path as I remember it (in order).
After the April accident, I had a "mental standstill". I was not paralyzed or in a lot of pain, but I could not lie down or sit without an urge to keep walking or changing positions. Following is the symptom and diagnostic path as I remember it (in order).
- 5th accident/stay up all night
- Discover back tooth has cracked off
- Go to dentist and they file tooth down, then everything on right side of my mouth until I can see the dentist for reconstruction
- Go to hospital because neck and lower back really hurt after about 2 days - make connection to rear accident that was really just a bumper bend
- First x-ray of back shows some L5-S1 herniation
- Go to Dr. and tell her (PCP associate) I'm having an anxiety issue. Feels like blood rushing to my head when stress is introduced.
- Get anxiety meds from Dr. Zawisa and he prescribes a neck brace to take pressure off if I have to sit down/work. (I figure out later that the neck brace held the neck in an unnatural posture for too long and often neck braces can do more harm than good). The smartest thing to do is see an atlas chiropractor ASAP so they can try to get the neck back in to a curved natural position and get pressure off of nerves, veins, arteries, spinal chord.
- Get first MRI per Dr. Zawisa of neck - cervical herniation slight c3/c4 area
- Go to chiropractor - get range of motion back in neck
- See Dr. Berman (dentist). He gives me a referral for TMJ but I can't get in for 2 months because I have no history of orthodontal problems (thus I'm a new patient)
- Wrists going numb, severe dizziness lying down and sitting for more than 20 minutes
- It becomes difficult to type, or do computer work for 20 minutes. Reflux issues and tinnitus (tone in one ear) start, but I don't realize it's reflux. It feels like after I eat a meal with extra MSG or salt. It is like an upset stomach
- Sent to pain specialist for cervical block in neck
- Block works for pain for about 2 weeks, but some dizziness still there upon sitting. I am able to enjoy a friends' birthday party on a boat. Injections are recommended, but cost $1100 out-of-pocket, and I can not continue paying $1100 every 2 weeks.
- Get eyes, heart, carotid arteries, and ears checked to make sure it is not any of these things
- Take blood sugar regularly and it is in within normal ranges
- TMJ diagnosed by Dr. Spolyar (excellent orthodontic practice in Clinton Township, MI) and treatment with an occlusal guard (retainer with one side built up) started - immediate relief of some symptoms like radiating arms
- I am given a referral to see a TMJ physical therapist, but am turned down by 3 offices because this is accident relate. I start to search for cheaper alternatives.
- I see a TMJ massage therapist. There is marked relief but the visits are $190 apiece for 1 hour, with no path for reimbursement from either State Farm or Golden Rule (my health insurance company). State Farm has turned down all claims at this point
- See the State Farm doctor for verification/rebuttal of symptoms. State Farm still turns down claims, and I have to come up with an answer for stopping the degeneration while I still have enough money to treat. I joke that 98% of my med. expenses are for diagnostics, leaving 2% for treatment.
- I am told by State Farm (after about 6 months) that only my primary insurance plan doctors are covered. This is the first I've heard this. They were very friendly at the beginning of the process and I was told by Heather Graham, my processor, that medical bills and 80% of my income would be covered. To date, not a dime has been paid toward either. I meet a man who looks like a Nightmare Before Christmas experiment and he tells me this is how the insurance companies work when there are more than one: they deny everything for 18 months - passing the bills back and forth - then they are no longer liable for payment after the grace period. I retain an injury lawyer because this is clearly not something I can handle myself.
- I am having trouble with medication ( - this can lead to suicidal thoughts for some people so I immediately sought help). There are 9 categories of anxiety medication and sometimes people have to switch until they find one that their system tolerates, more info can be found here: http://en.wikipedia.org/wiki/Anxiety_medications.
- I know 1/2 of the country is on meds for one thing or another, so now I feel like I'm one of the gang. I am sent to a psychiatrist to make sure I'm taking the best possible meds. We talk about anxiety and I confide that I've started hoarding. I also have nightmares that my hands stop working entirely, and I fear that when I go to sleep I'll have a stroke. I am told that anti-anxiety meds have an anti-depressant component. I explain that I have nothing in the world to be depressed about. However, I am worried because I am losing control of my hands, and I feel like I'm having strokes at night. I feel like I want to be in control of what happens to my body. The chemicals seem to suppress good and bad emotions and thoughts. The idea of suicide seems only a utilitarian efficient choice. I don't think of anyone else. It is as if my self-preservation and connection to other people is just something I've hung up on the off-season closet for the time being. Obviously, this is not like me.
- I clearly need a med change and only psychiatrists can prescribe these meds. The psychiatrist suggests that some of the issues may be psychosomatic. I hope she's right. In the mean time, if I do have a stroke while sleeping, my kids will have shoes that fit and soup and crackers until they graduate:) I also stock up on embarrassing things they might need - feminine products and bras for my preteen daughter. I figure my hubby and the internet can handle my son's issues when the time comes...we made that deal before he was born:)
- I do a web search for TMJ therapy that is reasonably priced. I find www.borerchiro.com and make an appt. to see them. They do atlas adjustments only. The atlas bone is seated at the top of the cervical spine. If it is not aligned properly, it can inhibit flow of veins and arteries through the neck. Mine is twisted on the scale to the severe point. It is measured in degrees. With the atlas adjustments, the rest of the spine lines up like a Slinky.
- A day after the atlas diagnostic consultation (xrays taken, no treatment at this point), I completely lose feeling in my hands - not pain, but cramps in my wrists start radiating from the neck, down the arms, to the wrists. I go to the hospital thinking I need neck surgery - I have a 3-day stay, and another MRI shows my neck is a little more herniated. They inject me with Demorol in fatty tissue to stop the spasming. Pain goes away immediately and I have my first whole nights' sleep since April. However, I can't stay on Demerol. It slows digestion and can damage kidneys. After 3 days and new meds I recover enough to go home.
- I see the chiropractor for atlas adjustments. I get some immediate relief from migraines and strain, and my wrists are not as bad. I continue (and still do) treatment as recommended - a 12-24-month course of treatment to relieve stress on the neck. It is also pointed out that I have "military neck" and Dr. Borer hopes to reposition the neck to it's natural curved posture.
- I continue orthodontic treatment as prescribed - top and bottom brace. At the end of treatment my teeth will be rebuilt to hit together at optimal points (back teeth) and I will have a night time occlusal guard (retainer).
- I get some passive back therapy (heat and ultrasound) from Dr. Lewerenz's office. This helps the day of therapy, but I have symptoms w/in 48 hours afterwards...until about 3 months after therapy. At that time I'm feeling a little better, and Tim enrolls with Blue Care Network. Dr. Lewerenz is no longer covered.
- I think I have a handle on things and don't go to the hospital again for a while
- I am starting to feel better, but not accomplishing anything. I do a little at a time all day until I drop in to bed and take Zoloft to go to sleep immediately (instead of stare at the ceiling wondering when the stroke will come).
- I can't sit for more than 20 minutes. The specific issue is keeping my head in a certain posture (especially looking at a computer screen). Laying on my back makes my head feel like a pendulum. Other people say "the room spins", but for me, it's like someone's twisting my neck and back of head back and forth while my face stays in place.
- I continue atlas adjustments for a year. Recently and the heat reading is not very bad at all. I have more stress in the neck and more pain than ever, so I start doing a little more digging.
- Dr. Zawisa refers me to a rheumatoid specialist after RA Factor reading is 24 (should be 0-20). Specialist tells me to take Vit. B and D and go out in the sun. My other RA numbers (from blood tests) don't show anything significant. The rheumatologist also says carbs are evil and I should only eat veggies and meat. I start juicing, high protein, and vitamins. I feel better in some ways. He says I don't have inflamed joints, etc., and to come back only if new symptoms arise.
- In November my wrist numbness and neck strain begin to worsen to about a 4 of 10 on the pain scale. (Numbness is considered a sign of pain). I have been looking for a job I can do that is not at a computer, stressful, or sitting for long periods.
- It seems obvious to me that I am deteriorating. This is where my friend Marie feeds me a bit of information (see higher blog entries).
Accident/Damaged Veins Intro
I'm creating this blog for my family and friends, in hopes that is may help them if they find themselves in a similar situation. Once I've obtained treatment and recovery from CCSVI, I'll be sure to let other people know about it, and spend the next few years lobbying for more accessible treatment centers in the US and beyond. Currently it is being treated in only 7 states. I am also hoping for a streamlined path to obtaining insurance coverage of "The Liberation Treatment". Because of the degenerative nature of the condition, time is especially valuable. If you suspect you have problems associated with reduced flow in veins, take action as soon as you can.
Family is first for me, and friends are family you choose. This is for the ones I love.
Family is first for me, and friends are family you choose. This is for the ones I love.
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