Living with SB Myleomengiocele L3-S1 Post Hydrocephalic, Post Shunt FAQ: No I do not have Chiari
My name is Angela Dockter and I am a 44-year-old female (writing this in 2015) with spina bifida. I have the myleomengicele form with nerve damage from L3-S1. I am post-hydrocephalic and post shunt. I had a shunt placed at 3 days old but it stopped working in 8th grade and determined I no longer needed it. It was left in place until I was 19 then removed due to pain issues from growing into scar tissue. I learned to self-cath in third grade, although it is taught much younger now that it was back in the 1970’s. I have moderate bowel control issues, pretty extensive bladder control issues, and numbness in portions from the waist down. I do have two children ages 18 and 20 who were both born naturally. We were advised not to have children but I conceived multiple times though I was on birth control. I’ve had several miscarriages however. I do have a history of right sided kidney reflux, neurogenic bladder, extensive history of kidney infections, migraine headaches, mood swings, fluctuating sleep patterns. I had a ureter repair at the age of 6. I did have one shunt repair at age 3. I had sb site closure repair at the age of 2 weeks old. I am a fraternal twin – he is “healthy.”
The amazing thing is that though my parent divorced very early in my life I had one parent who choose to take more of a traditional medical approach with me, while the other was more alternative. It created some conflict but it also gave me the best of both worlds as far as my health. I was able to avoid multiple surgeries throughout life because of the blend. In my adult life, I actually have gone into the holistic / alternative healthcare world professionally and as part of my journey I’ve tried many different approaches and have sought education to help me live a full and active life while minimizing as much as possible my health difficulties.
I had my first chiropractic adjustment at just three months old. It was amazing to find a chiropractor in 1971 who would work on an infant, especially one with a healing open spine. But because of those adjustments, today I walk unassisted. I also avoided the very common tendon release surgery on my ankles (which doctors really wanted to do). Many parents I talk to are scared of chiropractors for spina bifida, but I have several pieces of advice regarding that. First is to understand that a chiropractor is there to allow the body to be able to facilitate its nerve communication to its best potential. Think about that for just one minute. That is huge in spina bifida. We need all the help we can get to facilitate nerve communication. That said, do be sure any chiropractor who you are interviewing as a possible “fit” to work on you or your loved one with SB does a current set of x-rays. Bring them the most recent copies of MRI’s etc. Don’t let them touch you without them at least being able to see what is going on in the defect area. Second, (well probably first) ask if they have ever worked on a person with SB AND if they are comfortable doing so if they haven’t. I’ve been flat out told by a few chiropractors they won’t touch me because of it, and that’s ok. If they aren’t comfortable with their knowledge and training then neither am I – but if they are comfortable and confident in their knowledge and training, even if they haven’t specifically done it before, if they go slow they can often benefit more than harm. Consistency is key though. They will want to see an sb person frequently, and you’ll want to take advantage of that. Its made a huge difference in my life. My last tip is, that my 1970 chiropractor was old school of pop and crack – so don’t be scared off of that, but do be aware there is newer less invasive techniques using an Activator, and my personal favorite TRT or torque release technique, so ask around about those two specifically – but again, don’t fear it. DO interview potential chiropractors, don’t just jump into one, take time to find the right fit.
Medically just a few things I’ve tried over the years:
I’ve tried lyrica, cymbalta, neurontin for pain – all of which left me almost unable to function at all physically.
I grew up on antibiotics – got pregnant and had so many antibiotics in pregnancy that both my children were born with compromised immune systems that led to a hosts of health issues.
Tried ditropan and other bladder meds. Caused fever ,constipation, and actually made the urge to urinate worse not better. I do self-cath as I think I previously mentioned.
I professionally got started into holistic health when my daughter was around the age of 4 when she was dealing with some health issues that couldn’t be resolved medically. I never say that medicine isn’t necessary. I wouldn’t be alive without it. I wouldn’t have my children without it. But I wouldn’t be as healthy and active as I am without all the natural and alternative things I have implemented into my own life. For the sake of ease, let me just list some of the things I have done and tried over the years and try to provide a short synopsis of my successes.
What I’ve used: NOTE: Before you read this list. I am NOT product/company loyal. In my professional office and consulting I use a specialized assessment tool called bioenergetic assessment which can help us pinpoint which remedies each persons body is asking for/needing. It takes the guess work out of this supplement or that. This brand or that. Not all companies test well. Quality DOES matter. Nothing is a one size fits all. These are my personal results over years of assessments and use. It does not mean that another company is bad, nor does it ensure any one company is great. It just gives us direction to head and takes the guess work out of it. I can say, you usually get what you pay for, so don’t skimp on supplements because something is “affordable.” I also do not company bash. NO company entire product line tests well. None. When I work with a client it is about finding what fits each person. I will discuss bioenergetic assessment more in this area of what I do/have done (as you read).
YOUNG LIVING – while there are a TON of options out there, here are a few of my favorite.
Nixgia Red YL – has such a very dramatic affect on my outer scar. Shrinked it by over half. Take recommended dose on the bottle.
Oils: raindrop kit (modified for kids – which I can consult / advise on professionally).
Juniper for kidneys. Both externally and internally in a capsule at the first sign of infection (kidney/bladder).
Valor: (blend). Valor is referred to a “chiropractor in a bottle” as it helps the spine self-align. It is not to be used if there are rods are any permanent devices in the spine holding it in place as it can cause shifting of the devices. Other than that I love it. It can cause referred pain in muscles. Or a tired feeling/achy. I use more, not less, and no stopping. The body needs to work through it versus slowing down. Use on bottom of the feet. Hips (all across left to right). Up and down the entire spine, and crown of the head to assure to signal the body alignment.
Harmony. To align energy centers in the body. Ours are always impaired. Helps with pain as well as anxiety, restlessness etc.
Pain control: (also referred to as a morphine bomb): 5 drops of Frankincense (or 2 drops of Theives) , 5 drops of Copaiba, and 5 drops of Idaho Balsam Fir. I’ve also just grabbed Idaho Balsam Fir alone and used neet on location.
Migraines: Migraines can be multi-rooted so its necessary to work with someone to understand the root. They can be toxicity from the bowel (common in sb), pressure related (weather) also common with shunts, they can be spine related any sacral defect is related as well to a common cervical misalignment usually at C1) (your chiropractor will understand the cervical/sacral misalignment), they can be hormonal, or a food sensitivity, or stress. One of my favorite oil remedies however is M-Grain. Although I cannot stress here the bowel toxicity “cure.” I suffered greatly growing up before understanding this connection. In 1998 I did the Master cleanse (will try to discuss that in this list) for 30 days and I was 100% migraine free and even minor headache free for nearly 10 years just from that one cleanse.
Calli tea – for kidneys. Up until 1998 when I found this herbal tea I had infections every 4-8 weeks from self-cathing. I always have a low level of infection brewing. Always. I started drinking 4 cups of this herbal tea per day and I have had maybe two or three infections requiring antibiotics since 1998 (now 2015). It is worth its weight in gold. About $1 per day. I use the juniper oil (mentioned above) in between if I feel a tingle or burn coming on, but this product is my go-to product without fail. It is the only thing I order from this company, but so worth it.
MASSAGE If I could afford it I’d do it at least 4 times a week. I have in the past traded professionally for it. Helps with pain management and circulation. Highly recommend.
IONIC FOOTBATH I use the Q2 Energy Spa (www.webdeb.com) please tell her Angela Dockter (or Angela Dockter Harris referred you). I have improved energy, nerve sensation, and hormonal balance, and sleep regulation. Its very easy for me to get bouts of sleep interruption or full insomnia. Since our nervous systems are always under developed our 24 hour circadian rhythm can easily become imbalanced and sleep can be hard. This always settles that. I own one. Expensive but worth the investment to own with a life long challenge like this.
RELIV Two products that do test well (bioenergetic assessment) with the Reliv International line are ProVantage and Reliv NOW. Really helps my energy level and pain comes down to almost non-existent. Several of their other products do not test well so I do not recommend them without consulting. Also please note these are soy based. I personally am not against soy professionally. It tests very well much of the time and gets a bad wrap in the news and on the internet. Again I let the body dictate what is best for each person but these two products usually always test well. I have come across maybe three people who truly are allergic to soy and cannot take this product, but if you are soy hesistent merely because of things you have heard, you might at least give this a try. 30 day money back guarantee with the company. www.reliv.com
HOMEPATHY I cannot say enough about homeopathy. I use it widely in my consulting and bioenergetic assessments. It can be customized per each persons needs. Homeopathy reminds the body to do what it already knows how to do (or should do). Homeopathy can be used to send messages DEEP inside the cell where our defects resonate. It can get deeper than many other products. Homeopathy is regulated by the FDA however and you should work with someone who is trained in this area who can assist you to find what you need. Because of that, I don’t give out general recommendations and do require a consult – but let me just say there is a lot we can accomplish by adding in homeopathy into any other modality one might already be using. It is great to open detox pathways of the body. To assist with cell communication. To support the body around any health issue (not just sb) that you can think of. Also have a few great things for pain control in this area as well. I love homeopathy!
REIKI There are many types of energy work – so just explore the ones you come across. It takes time to find one that works for you and time to find the right person to work with. My daughter is actually my person. She has the gift of energy work and it really makes a huge difference when she does work on me. Helps with pain, balance, sleep, and energy.
DIET DIET DIET I can’t say enough about diet. Even more so in cases of a dis-ease process such as spina bifida. For all the cool stuff I did learn about health growing up there wasn’t a real focus on diet. I was plagued with weight issues from not being able to be as active as needed, from impaired bowel function. I also had severe debilitating migraine headaches. I was highly addicted to sugar and always had kidney or bladder infections. Needless to say many of these things can be improved with proper diet. The better I eat the better my bowel function is, and though I still need continual bowel support through herbal cleansing to make sure the toxic load doesn’t over accumulate, things always move more freely when my food choices are better. I also do better with the use of enzymes to help break down food, and it is important to learn quality of food versus quantity. I do better with support of liquid diets such as Master Cleanse (read the book by Stanley Burroughs and the Complete Master Cleanse by Tom Woloshyn) and also juicing. Juicing gives the body nutrients while making the digestion process easier. Many process and refined foods are not only void of nutrients and place a toxic load on the body, they slow digestion and elimination. Meat (real meat, not processed) is also hard to digest so lean more towards whole plant based foods. I love supplementing with things like spirulina, wheat grass, chlorella – etc. Superfoods. They provide high quality nutrients without overburdening the digestion. Gut health is key to the body restoring as well as maintaining balance. It’s a new way of life and thinking for many, but one you won’t regret. It is easier to teach this lifestyle to children than to have to learn it as a new way and habit as an adult (although it certainly can be done.) So I encourage you to make changes early as possible in life, and realize it is never too late. We must change our thinking that we are depriving our kids of a normal life if we don’t raise them on pop tarts, breakfast cereals and treats at school all the time. We are doing them a bigger favor in life by giving them the gift of health through diet. Proper elimination is one time for every meal – which is 2-3 times a day. This is usually a constant battle with SB so the better the diet the easier this will be. As far as products to help the body balance, there are many options and vary person to person. One note: sugar (especially processed) will actually further deaden the nerve communication. Just eliminating sugar from the diet (too much in any form and all processed) can potentially help restore some nerve healing (not a guarantee for a cure) but every step helps.
YOGA & QIGONG I love either of these types of exercises because most of all they focus on what I can do (even if modified) rather than what I can’t. Along with that, they are relaxation – centered. They tune me into my inner-self – especially learning to breathe correctly. They teach me to be in tune to my own body. They improve my balance, nervous system communication, flexibility, help with sleep, decrease stress etc. There are many videos on YouTube available as a starting place. The key is to move as much as you can and keep moving. Toxin elimination improves with exercise of any kind.
EFT EMOTIONAL FREEDOM TECHNIQUE (TAPPING) Simple and easy to learn, great for stress and anxiety relief. Search it on YouTube for beginning use.
MASTER CLEANSE I personally love the Master Cleanse. At least read the book. We have to be careful as parents just with the system and world we live in, to do it with children as it can be seen as inappropriate – and I agree it needs to be modified, but at least be aware that it exists and implement it on a modified basis. It really does unburden the colon and I experience great health benefits from it when I do it. HORMONE IMBALANCE Because most of us have underdeveloped nervous systems, we very commonly have imbalanced hormonal systems, and stress will continually burden the hormonal system as well. The hypothalamus needs to be supported through homeopathy and supplementation in nearly every SB case I have ever worked with. The body heals in the order it develops and in development in the womb the first systems that do develop are: the gut, the nervous system, and the hormonal system – so it almost always is necessary to address and support all of these together in an on-going way. The other glands involved in the hormonal system that need to be kept in check are the pituitary, the thyroid, adrenals, and ovaries / testies. Most traditional medical Dr’s won’t look at the pituitary or hypothalamus. Because we heal in the order we develop it is common that if there is an imbalance in one of the systems mentioned (gut/hormone/nervous system) there will be an imbalance in the others. We unfortunately see so many isolated specialists that no one really connects us as a whole person/body/system. BIOENERGETIC ASSESSMENTS My life changed when I found out about BioEnergetic Assessments. It is a simple testing tool that is non-invasive and can give us insight into what is going on in the body. It measures energy and frequencies and shows us where imbalances are occurring long before standard lab tests will often find them. It is common for labs to come up normal for millions of people every year (no matter what health issue they are dealing with) and yet they are sent home with complaints and symptoms and miss out on the help they need in finding answers. This happens because a dis-ease process (of any kind) affects energy in the body and in the cells, tissues, and organs long before it affects the standard blood, urine, or saliva. I (personally) use hair or saliva to test (there are many ways) but I am not measuring in a qualitative/quantitative way. Energy changes are much more subtle and sensitive and all those changes in energy and frequency are carried in hair and saliva. Its done in different ways depending on the practitioner, but as in my case, my assessment software can scan for over 16,000 different things. It helps us to be able to get a baseline of the body to determine an overall picture as well as get very specific to root issues when needed. It takes guess work out of which supplement (this or that) – because we can actually assess against each person and know. I do caution people to understand there are new and inexpensive bioenergetic assessment tools on the market and to realize they have a very very limited capacity – and for the sake of your overall health to work with someone who is professionally trained and qualified on a professional model which will break assessments down by organ, system, or gland – as well as be able to assess many product lines versus just one. Again, not one product line is will test good for everyone (when compared to many) – the software options that carry only one product line have no choice but to generate some kind of response to A “best” fit not THE best fit. These are called random generators. Also much needed information is withheld from the software if an untrained professional is purchasing the equipment – for your own safety and health know your testing technician as well as their qualifications along with what their software is capable of doing as well as what it’s limitations are. That said, overall bioenergetic assessments are a WONDERFUL tool to add to literally any other type of modality you are already doing. They just reveal information that otherwise may seem a mystery.