7 MONTH UPDATE!
(October, november, december 2012)
With dr Petra Kliempt and dr.proff Phillip James
-visit september 20 2012
7 months where I have had the opportunity - every day - to get into a decompressing chamber.
At times it fits me - which is an advantage when there is acute worsening and the chamber is the only thing that has any effect! I'm still in the decompression chamber 1 hour every morning and later in the day about half an hour again.
- here is a little about what has changed !!!
GENERAL ENERGY LEVEL - I am now able to be up about 8 hours more each day since I started treatment in May!
Unbelievable and indescribably wonderful to feel energy "return"!
RIGHT LEG - paralyzed -and with excruciating pain after back surgery in 1991(feel a deepfreezing pain in the middle of the leg, can make me freeze in the middle of the summarheat)- Has been much more stable, easier to carry out workouts.
ISCIAS PAIN-violent - down in both legs, suffered during back surgery, virtually the same on movement, sneezing etc, but at rest very subdued.
Spinal cord injury / PAIN CONDITION IN GENERAL;
For downward. I am used to many different kinds of pain all over the body, due to incredible many kinds of damages. Overall, my pain at a level that affects my ability to general sensory perception. Affects the way I experience the outside world!
Vision, hearing, orientation regarding balance, movements, dizziness, nausea, cold sweats, etc ... Ever since starting treatment marked changes - and the trend continues. This is obviously a huge change - this alone is hard to describe and put into words the importance of, since it is the foundation of how to experience myselves in relation to the sourrunding environment. I still use a lot of energy on mental pain control. But the experience is constantly changing. And can be deeply confusing - but also exciting and quite unbelievably fantastic experience - relief to this which was a totally given up on doing anything for more than 20 years!
-Must be very careful, and be careful not to forget the well-known limits. If I make a little more than usual, I get immediate responses!
INFECTIONS; - have not had an infection OF ANY KIND in 4 months! Unbelievable - I tend to have lots of small and large infections. When I get one it used to be followed by more after making it even number of infections in different parts of the body! (Nose and lungs, bladder, kidney, etc.)
SKIN; - no longer wounds after elastics on oxygen masks. I've got a different, far more healthy color.
COORDINATION ABILITY; - much better balance, I feel is better, faster and with far better control of the right side of the body, in spite of the many sensory disturbances.
Uses still electric wheelchair and crutches when I walk. But still workout an hour every morning which has become much easier.
SLEEP; - have begun to sleep, rest, relax with oxygen mask, acting pain relieving and cramp loosening and sleeps therefore much better, deeper and more rested and fresh. Do not sleep much more, still only about 5 hours a day.
Since backsurgery I have not slept, but more dozed, and stops breathing during sleep because of the severe pain level. (Confirmed by sleep apnea test)
GUMS; - completely healed. Bleeding is still easy due to connective tissue disease, Ehlers-Danloss-Syndrome but stops very fast!
LUNGS / ASTHMA bronchitis; - still need preventive medicine - but HAVE NOT USED ATTACK MEDICINE in the last 6 months, despite the very humid weather! Could easily previously needed it several times a day!
LEFT LUNG; - tissue alterations due to connective tissue disease, still pain but much more common and normal breathing!
No audible, strange sounds anymore. (no "dolphinesound") regardless of loads!
Still pain when I'm outside in the cold for example, and still need a mask that heats the air I breathe. But huge difference!
NOSE; - has a very large wound / hole (due to connetive tissue disease) in the nasal septum.
Has gone from extreme soreness, pain and sensitivity to temperature changes, wind, dust, smoke, moist air, dry air, cold, to much more reduced reactions.
Before I had almost constant bleeding, small wounds, a clear liquid flowed.
Do not heat the air I breathe properly and pulls unheated air into, especially the left lung - and it is extremely painful and causes much discomfort and pain and lots of infections! And when you become so cold inside the body, it is almost impossible to get warm again, there is much less sensitivity now.
- But must still use heating mask that warms up the air I breeze when I'm outside. But for several years I could not get out the door without feeling directly ill and suffered from infections almost every time.
Nasal mucosa, have become accustomed to oxygen - it took a long time! No significant problems remain.
A well-known phenomenon for a EDSpatient! Have been accustomed to an incredible number of sores, there is almost none left!
Only a few on the right leg.
TISSUE - FLUID ACCUMULATION;
Has been treated with artificial corticosteroid and tied a lot of fluid in the body, have not been able to get it away. But the "move" obviously.
Now - a few days in the face, other days the hands and feet. There is a big difference from day to day where it "sits"
The stomach mucous membranes;
Unfortunately I react still incredibly violent on food and drink. And still can throw up to 10 - 12 times a day! Incredibly tiring and exhausting! Due to the accumulated liquid I dont look like one that can not tolerate food - but there are only few things I can tollerate. Unfortunately, it is one of the connective tissue diseases "specialties" - mucosal damage and wounds. In my case quite aggressively.
When you lose the protective layer on the inside of "excretion organs" (stommack, bladder,..)you become ill because they react violently when it is consumed.
Unfortunately, I throw a lot of blood up - each dag. Not particularly reassuring. And a very painful condition.
- Still a huge problem! Again mucosa destroyed - plus a lot of other problems!
Still severe pain, bleeding, and especially the daily seizures are a major problem, since they still strongly influenced by the spinal cramps which of course provoked by easily by movement, shock, vibration (DRIVING especially)
Urine is still like burning acid in an open flesh wound. Indescribable! And unbelievable what it offers of discomfort, pain and urger - can still have this intense urge up to 40 times a day -nomatter if the bladder is full or not!
Still goose bumps, shaking, shivering sensations throughout the body plus many other symptoms ...
The bladder became ill after backsurgery - nerve suply was disrupted and since then more problems just kept on coming. Spinalcramps and bladdercramps are incredibly sensitive to each other, reinforce each other and are difficult to keep away from each other.
A serious, dangerous "chain reaction"
All other treatment has been completely ineffective. Only the decompressing chamber is effective! Somewhere I have to be very patient yet - it takes a long time to heal SO many diagnoses with SO many symptoms!
But generally my bladder is in a "better mood" - not much yet, but sometimes very noticeable!
Spinal cord injury; - occurred after back surgery - still extreme pain, still very sensitive to vibration, shock, cold, especially driving triggers still large seizures. As still leads to the well-known ... knock ... with many symptoms throughout the body ...
still heavy cramps, but easened a lot - has made hugh visable changes!
But GENERALPAIN EXPERIENCE - if you apply scale of 1 to 10 where 1 is painless and 10 is so unbearable that you do not feel you can continue, death feels like the only way out, I am about to move down to 8 - so it moves, obviously!
see more here please;
Changes of course still under load, but the constant, persistent pain at rest is declining!
Uses still many mental resources to cope with every day - constant, but big difference!
STRESS LEVEL; - has suffered a lot from stress - has decreased significantly.
The pressure from the many different symptoms eases and provides a natural result far more mental energy.
The Joints; overall still painful.
Especially under load, of course - is still hard on joints and need stabilization.
The tiny attachments (the transitions between bones, muscles and joints are still very sore and "protest" violently - but pain in decline, overall!
THE BIG BLACK SPOTS; - indicating internal bleeding - is pretty much gone!
In case of severe seizures they come again. But disappears much faster than before.
FINGERS, HANDS; WRIST; - must still use stiff bandages to protect them as much as possible. They are still mostly useless without bandages.
BUT I'M BEGINNING TO DRAW AGAIN!
It is a huge step forward and a source of great joy - quite amazing how I've missed it.
Have not been able to so much as draw just a few minutes (which is the absolute easiest of the things I usually do, creatively)
SURPLUS / HUMOR; - have returned, more stable and lasting.
CHAIN REACTIONS; - which is a very individual thing happening to me because of all the many different diagnoses I have - unfortunately, all with many symptoms each.
Chain reactions, that is the way the different things interact, for instance bladder and spinalcramps both the constant and immediate major impact on each other when one gets worse.
Many times when quite small provocations from outside - causes major bleeding, all responses to infections which can start with something quite innocently and end with prolonged pneumonia -kidneyinfections that easily can last for several months - then just start over!
The attenuation of the various symptoms also means less strength in chain reactions -for instance less strength in convulsions - and they can be indescribably intense and require incredible amounts of energy, gives every major damage anywhere in the body, small and large sprains, joints breaks and so on and on - a very long book can be written about the chain reactions I've had, but generally the cramps has muted much!
NOW I'm at a stage where there is incredibly much happening with many small and large symptoms - but it still feels like .. development ... the sense that almost comparable to having a large open wound which just is forming a scab - and it will form a scar and wound disappears - but if you move it will jump up again - and scab cracks and you put the process back a little - my condition still feels like this. Things are happening around the whole body, it's great.
I just needs to remember limits - the limits are about to move and then comes the punishment if I'm not aware that I am still very limited.
But it is absolutely incredible great to see these changes!
This treatment will not eliminate diagnoses, but is in full speed to alleviate symptoms so there is reason to hope that I absolutely will HAVE my life back!
I chose a decompressing chamber with very low pressure, 1.3 ATA. It is the pressure that is best for all neurological symptoms that I definitely have the most of.
Oxygen has always worked quickly to me - but I have many diagnoses, all with lots of symptoms - and so will all the individual "mix" of new things that are provoked, so it will take a long time yet before I'm all "back"
But a slightly higher pressure is best to wound healing, so my symptoms from stomach, bladder will probably take longer to heal.
But all in all - completely overwhelming - things like patience, gratitude, appreciation for the great help I have received, is still growing every day - it dosnt matter that things take time - so much is happening and it is incredible to see so that in itself is an experience!
- THANK YOU SO MUCH FOR THE CONTINUING INTEREST!!
Saturday, January 12, 2013