Slowly slowly forward

Max’s eyes have improved over the past three years. Slowly yet stadily. His vision is now, on average, 20/200, meaning 10%.

Dr. Zaal and Visser Contactlenzen have done a great job over the past years. Max is grateful.

Max has started making YouTube videos. To see his first video on SJS, you watch by this link.

Improvement for both eyes?

Last tuesday (December 19th, 2017) Max has undergone surgery at VUmc in Amsterdam. This time, Max’s both eyes were operated. In the left eye, again membrane of the mouth was implemented to further enhance the condition of the eye. In the right eye, a hydrophobic part of the epithelium was corrected.

Recovery since the surgery is going well. The pain that Max feels is less than expected.  The mouth heals quickly, just like after transplantations of membrane of the mouth that Max has undergone in the past. It is expected that the pain in the left eye will decrease with every day. The coming days, Max will rest. He has taken some time of from his studies and work.

Max’s eyesight has become quite stabile since last surgery. In the left eye, Max sees approx. 0,5%. In the right, Max has eyesight of approx. 4%.

Improvement in the last two years

Dr. Zaal is quite positive about the developments of Max’s eyes of the last two years. The coming months, Max will have recovery as his main goal. Next to that he will be busy with his studies (philosophy) and with his side job. It is expected that a cornea transplantation will take place in the summer of next year. This transplantation will have the aim to improve Max’s eyesight in the left eye.

Small surgery

Last Thursday, Max underwent surgery to his left eye. Surgery took place in Zaandam and took 1,5 hour. The aim of this surgery was to further improve the condition of the eye. Old stitches were removed. Surplus membrane of the mouth was removed and placed to the most hydrophobic parts of the eye.

The days after, Max’s left eye hurt. The eye got inflamed after surgery. This was because of the dry parts being irritated by the surgery. Now, slowly the pain decreases. Max has taken some days off from his work. He will start working again the coming week. He is glad he can continue his sporting activities also.

Cornea transplantation is postponed

In consultation with Dr. Zaal, the cornea transplantation of coming summer is postponed. This is to enable the eyes to stabilize further and to enhance their condition. Also, Max can now focus on finishing his studies.

Surgery has succeeded

Surgery of January 17th 2017 has succeeded. Two big portions of membrane of the mouth were transplanted into the upper and lower side of Max’s left eye. A bandage of amnion (stamcell tissue) was placed on the eye, which was held in its place by a small ring, placed on the cornea. For a few days, the eye was held closed by stitches through  the eye lids. This was to keep the eye moist and protected.

Workout again

Two days after surgery, Max was back at university.  He suffered pain, but it was not unbearable. After the stitches were removed from the eyelids, his energy came back fully. One week after surgery, he could workout again.

The eye is quite red still. This is because recovery fully in process. The first positive signs have shown themselves though. Initially, the eye was fully hydrophobic, but now the artifical tear that Max usesis contained for 90%. Max now feels no pain or irritation whatsoever. He can fully enjoy the comfort of the artificial tear.

Improvement of eye condition

Untill now, there are important signs of improvement of the eye condition.  This is very important for the cornea transplantation that will take place in the summer. But first, a small policlinical surgery will take place. This will be to further optimize the condition of the eye. This correction will take place in May.

New surgery for left eye

The past months, Max vision has stabilized to a 7-8%. Cortico steroids and antibiotics usage was reduced to once per day. This is a good thing, since this has significantly reduced the chance of negative side effects. Max has almost no pains or irritations in his right eye, now his good eye.

His left eye has a vision of 0,5% still. The conjunctiva are often swollen and irritated. The eye is more red and more often inflamed than his right eye.

Dr. Zaal and Max have decided to start a new surgery cycle regarding his left eye. The plan will be the same as the surgeries in the right eye the past two years. Only now, membrane of the mouth will be transplantated first. This is scheduled for Tuesday 17th January 2017 in VUmc. Suspectecly, Max will get a new cornea in the summer of ’17.

Differently from what happened to Max’s right eye, the cornea in the left eye will be transplantated at a later stage than the first transplantation of membrane of the mouth. This is because now, first the condition of Max’s eye can improve. It is suspected the new cornea will benefit from the membrane of the mouth, which will then be accepted by and integrated in the eye.

 

August 2016, another year passed by

One year has passed since the first cornea transplantation combined with membrane of the mouth has taken place. In total, Max has undergone 5 interventions, of which 3 were transplantations of membrane of the mouth.

In july the last transplantation of membrane of the mouth has taken place. This time the tissue was placed on the weakest spot on Max’s right eye cornea to protect it against dryness and external factors.

The condition of the eye has improved. The hydrophobic bad cells of the epithelium have been replaced by good cells. Together with this improvement of the condition, vision has improved up to 10%. Because of the good condition, vision remains quite stable. Fortunately, Max can also reduce medicine dosages. He now uses cortico steroids once every 2 days.
The coming months no surgery will take place. The eye is given rest so it can further heal. It is expected that with proper care,the condition will improve further and the transparency of the epithelium will increase, resulting in even better vision.

Spring 2016 Update

Vascularisation in Max’s right eye has ceased and has retreated. The new membrane of the mouth has correctly been integrated into the eye. Vision has improved yet again, although it still fluctuates. This is mainly because of the bandage contact lens drying out quickly. This requires frequent replacement.

Half march, a first intervention has taken place. This was to remove bad hydrophobic epithelial cells. Initially the eye became irritated, but this disappeared within one week. The epithelium healed within 2 weeks. A bigger part of appeared to be transparent. Saturday 26 march a second intervention took place. Again a portion of the bad cells was removed. Again the epithelium seems to heal correctly, and again a bigger portion of it seems to be transparent.

Time will tell whether the transparency can be increased over a longer period of time. In may, the whole of the hydrophobic epithelium will be removed. Amnion will be placed on top of it. The goal is for the epithelium to grow back correctly and to be bale to moisturize the eye better by way of the growth of better cells.

December 2015 Surgery succeeded

Surgery of December 1th 2015 succeeded. Big portions of membrane of the mouth were successfully transplanted into the above conjunctiva of Max’s right eye.

Although surgery was successful, it had much more impact than Max had expected. It lasted 3 instead of 1 hours. The tissue was implemented using stitches through the eyelids and knots and tube to hold everything in place. This disabled Max from closing his eye fully, whilst he could not open it either. This caused much pain. Also, instructions of Dr. Zaal after surgery were misunderstood by the nurses. Instead of keeping it moist using artificial drops and applying the regular antibiotics, the nurses told Max to not do anything to his eye. The pain and the dryness resulting from this finally lead to rapid vascularisation in the cornea. Max’s vision decreased from 10-15% to a mere 0,5%.

All this was a shock to Max. He had to take a short break from his side jobs and his studies. Within one week he was studying again, although missed the things he could once again see the past months.

One month later, vascularisation has retreated from the epithelium. Fortunately, the inner corneal layers have remained safe. Max’s vision fluctuates extremely. This is caused by swellings in the new membrane of the mouth and by bubbles underneath the bandage contact lens he wears. One minute he can see 15%, whereas the other he can only see 3%. This requires much flexibility and is fatiguing to Max.

Dr. Zaal stuck to the plan all these months, which made it possible for Max to maintain peace and to keep using his medicines and be careful. Thanks to Dr. Zaal, vision is slowly returning. The coming weeks are tense and important once again. Dr. Zaal even stated that some transformation seems to take place from hydrophobic, bad corneal cells to good, transparent cells. By sticking to the plan and keeping the eyes moist, this transformation will hopefully continue. Max needs to stick to the plan while doing the things he likes and breaking through the fears of losing his sight.

Growth epithelium has completed

Growth of the epithelium has completed. The corneal defect has disappeared. Max is quite relieved.

Since the end of august Max has been wearing a bandage contact lens in the right eye. This is to protect the epithelium and to improve its growth. The lens was rejected every night. Fortunately, Max could go to the specialists of Visser Contactlenzen literally every day. It is because of their fantastic care and monitoring that Max could retain his inner peace and could facilitate the healing process.

The completed epithelium is divided in two sides: a bad side and a good side. The bad side contains inferior, hydrophobic, turbid cells. The good side on the other hand contains transparent and moisture retaining cells.

Dr. Zaal assumes that there is a connection between the growth of good epithelium cells from the direction of the conjunctiva with membrane of the mouth, and the growth of inferior cells from the direction of the conjunctiva that are scarred still.

The membrane of the mouth is said to be beneficiary to the eye. A new surgery is being prepared. Membrane of the mouth will once again be transplantated. It will be inserted into the scarred conjunctiva on the above side of the right eye.

It is unclear how the good and bad epithelium cells will relate to each other. It is possible that the inferior cells will transform into good ones or vice versa. A next step, next to already mentioned surgery, could be to remove the bad cells to facilitate further growth of good cells.

Max’s vision still fluctuates, be it less extremely. Max enjoys the good moments. He is quite used to taking good care of his eyes and he can combine it with his studies and his hobbies without it taking away too much energy. He barely looks at the – seemingly good looking – future and he’s feeling  extraordinarily good.

Surgery done on July 9th has succeeded!

Surgery done on July 9th has succeeded. On the one hand, membrane of the mouth was transplanted into the conjunctiva of the right eye. The mouth quickly healed.  What is more is that the membrane of the mouth is entirely accepted by the conjunctiva. The eye retains moisture better. This makes using eyedrops to have use. Thereby, the condition of the eye has greatly improved.

On the other hand, a partial transplantation of the cornea has taken place. Around 70% of Max’s cornea has been replaced by donor tissue. The good news is that the remaining 30% has barely been affected by scar tissue.

Also the donor tissue has been integrated and has (yet) been accepted by the eye. To optimally protect the cornea, amnion was placed on top of it. After two weeks, the amnion was mechanically rejected.

Thus, there is only good news untill now. Nevertheless, the situation remains tense. After a cornea transplantation, acceptation of the donor cornea is not sufficient. One’s own epithelium has to grow over the donor tissue. The epithelium is the most superficial layer of the cornea.  This protects the cornea and is essential for light to come in to the eye correctly, hence to see well.

It is the growing of epithelium that has been distorted in the case of Max throughout the past several years. Because of this, infection threatened constantly. In summer 2009 even a perforation took place.

But, also in respect of this only good news seems to be the case.  Two weeks after the operation, after the amnion had been rejected, growth of the epithelium has started. This epithelium is transparent.

Growth of the transparent epithelium needs to proceed. Not only to improve vision, but also to protect the cornea well. Untill then, the situation remains precarious. To protect the eyes against external elements such as the wind, Max wears glasses with caps. Already Max is attached to these. Max uses cortico steroids to battle rejection. Luckily, because any of rejections remained absent, the dosage has been lowered to a minimum. Next to that Max uses antibiotics to prevent infection. A new medicine Max has started to use is Cacicol. Cacicol functions as an ‘agent’ which stimulates healing of hurt corneas. Lastly, on recommendation of Dr. Zaal, serum drops were made of Max’s own blood. The proteins contained in his blood protect the cornea against external influences. It is hoped that with Cacicol and serum drops, the healing process is improved further.

Max’s vision has improved greatly. When he left the hospital on July 11th, he was overwhelmed by all the visual impressions he could again perceive. In the days following, his vision was instable but increased even further.

Two weeks after surgery, Max’s vision remained instable but it started to decrease.

The amnion was rejected. This, in absence of epithelium, caused correct incidence of light to leave a lot to be desired. However, after removing few stitches that had become lose and with the start of epithelium growth, vision went up again in the weeks after.

Now, six weeks after surgery, the vision fluctuates still. Before surgery it was 1-2%, now it moves from 3-10%, sometimes even 15%. On goods moments, Max could read and perceive facial expressions once again.

If the growth of the epithelium continues, vision will increase again. In any case, the general condition of the eye improved significantly. With good care and with the excellent guidance by Dr. Zaal, further recovery is supported.

N.B. Max has written a blog in which he tells his personal story of the process in which he is now. It is written in Dutch only and can be found at http://www.maxvantiel.wordpress.com.

Eyes remained stable – July 2015

The past months the general condition in Max’s eyes has remained stable.  When irritation or inflammation seems to occur, a short period of antibiotics usage follows which stops it. It has shown to be possible to keep the eyes moist using eye creame instead of artificial tears, also during the day. The big advantage being that the dribbling each 15 minutes is not needed anymore,. This has greatly improved comfort in life.

In June 2014 Max had undergone an experimental surgery. During this surgery a small portion of membrane of the mouth was transplanted into the left conjunctiva of the left eye. This surgery was done to improve the general condition (especially the moistness) of the eye. One year later this small portion has proven to be accepted by the eye and has indeed shown to make the left eye more moist. It is therefore that Max and dr. Zaal have decided to let another surgery take place.

This surgery is planned on July 9th. A bigger portion of membrane of the mouth will be transplanted, this time into the right conjunctiva of  the right eye. This time a new technique will be used: the membrane will be secured using amnion, which is very pure embryonic tissue. Hopefully this will decrease the chance of rejection and of allergic reactions to a minimum.

Next to that a (partial) cornea transplantation will take place. 6 Layers of a donor cornea will replace scar tissue in Max’s  cornea. By this a substantive increase of vision is hoped to be achieved. In contrast to the partial cornea transplantation of three years back, here the amnion technique will be used to prevent inflammation and rejection.

July 2013 Update

It has been almost one year since surgery. Last months the situation has staid reasonably stabile, although sometimes the long, cold and dry winter caused pain and extra dry eyes. At present, sight in the right eye is as it has been for the last years. This, meaning around 2% – 4%. The dryness is not too bad, although in the right side of the eye, the coniunctiva, there is still a bit of keratinization. The left eye has got a blow by the surgery. Although last months the feeling of total blindness has mostly disappeared, eyesight leaves much to be desired as it is fluctuates between almost nothing and 1%. Most days, there is no pain or irritation to be felt. Neither has there been any photophobia recently, because of the superficial layers of the cornea, although not clear at all, have been undamaged and without erosions.

Medical developments have to be awaited in order to improve the situation, especially the cultivation of cornea from own stem cells. For the time being, the situation has to be kept stabile. Photophobia and pain being absent, makes life as visually impaired very livable.

Cornea transplantation

6 Layers of the left cornea have been transplanted from an a-typical donor in June. Unfortunately, the overall weakness of the eye made it impossible to use “light-stitches”. The effects are quite dramatic. After not even 2 weeks, wrong epithelial cells take over the cornea and the vision disapears.

Protective glasses


The usual negative consequences of winter weather and cold wind have been avoided by Max having worn protective glasses. Although his vision did not improve, he now has been fairly steady for almost one year.

September 2010 – Isopathy

Isopathy worked out great. Max has come through summer without any set backs. His eyes have maintained calmth and blood vessels somewhat withdrew. His vision didn’t improve much, but stability is a first gain. Dr Zaal and we agreed that with these improvements we shouldn’t risk to let Max undergo surgery. Let’s first wait which natural improvements can be obtained and which effects autumn and winter will have on him.

May 2010 – an isopathic experiment

In April we had an isopathic experiment. Max took Ibuprofen that was homeopathically potentiated (i.e. about 1/10,000,000 of a regular dose). Since then his eyes seem to have stabilized. While normally any small improvement would have been followed by a bigger deterioration, his vision has been stable since and even slightly improved.

Important news march 2010

We received good news: a cornea was available for Max. He was prepared by all means for surgery that would take place on 23rd March. Good timing, because his left cornea is somewhat deteriorating. Unfortunately the transplant didn’t pass quality inspection and surgery has been cancelled.

December 2009 / January 2010

In December Max suffered from a major erosion in his left eye, thus increasing the danger of infection and leaving him with a significantly decreased vision. In order to protect his eye, dr Zaal asked Visser Contactlenzen to measure a so-called “bandagelense”. That is a soft lens with zero strength that should hold up to a month. On December 31, Max lost the lens. The left erosion grew and got very bloody. On January 4 a new lens was installed that appeared to hold better. Meanwhile the erosion is being repaired with scar tissue (pictures on the page “Eyes & Vision”).

Update September / October 2009

September 2009

Vascularisation is progressing in Max’ left eye as well as the growing of scare tissue. Vision seems to stabilize between 10% and 15%. Max is going to school again with his new laptop with speech software. Thus, with electronic books, he is able to follow classes and study independently. He his mentally in a pretty good shape and travels independently.

October 2009

No major developments. Vision seems to stabilize at approx. 10%. Medicines have been decreased to almost zero. Except for periods in which the weather undergoes big changes (warm/cold, dry/wet), Max’ eyes aren’t as reactive as they have been. Max is on the waiting list to undergo another cornea transplant (the one in June having been an emergency solution).

Vision seems stable

No major developments. Vision seems to stabilize at approx. 10%. Medicines have been decreased to almost zero. Except for periods in which the weather undergoes big changes (warm/cold, dry/wet), Max’ eyes aren’t as reactive as they have been. Max is on the waiting list to undergo another cornea transplant (the one in June having been an emergency solution).

Alarm; eye pressure was gone

On 7th June Max complained about a very wet left eye. The eye leaked warm fluid that didn’t come from the mucous membranes. In the following days the leaking continued and the eye started to feel like pudding: it seemed that the eye pressure was gone. On 11th June Dr. Zaal examined Max and confirmed that apparently the eye hadn’t been able to heal a stubborn erosion which now had become a perforation. The left eye leaked fluid from the eye chamber and had lost pressure. A surgical intervention had to be done quickly. Dr. Zaal arranged a donor cornea and partially transplanted it on Max during a 2,5 hours session the same evening. Although Max seemed devastated, he regained his forces and smile already the next morning. Vision didn’t yet improve but could do so in the next months. Eye care will be more intensive than ever with, again, frequent control visits in the hospital. All of a sudden Max has entered a completely new phase.

In the weeks after the transplantation Max’ vision improves to about 15%. Nevertheless there are days in which vision is bad. During a visit to dr Zaal on July 11th, Max has a ‘bad day’ and we learn that vascularisation is quite active in the deeper layers of the cornea. The upper layer however, i.e. the transplanted part, is still transparent. This could be coherent to recent research from which scientist tend to deduct that the development of certain cells depends a.o. on surrounding tissue.

There are no signs of rejection at all. Thus, there should be hope. Max will have to wait some weeks or months for the vascularisation to ‘calm down’ before dr Zaal could ‘clean up’ deeper layers of the cornea. Meanwhile he should be prepared for bad moments, being trained in braille. Psychologically it is quite heavy for him.

Avastin – april 2009

In April 2009 Dr Zaal and we decided to proceed with subconjunctival injections of Avastin. As Max suffered from a big erosion in his left eye, dr Zaal only injected the right one. After almost 2 weeks an erosion came up in this eye and Max suffered from pain and irritation as well as almost zero vision. The right erosion was healed quite quickly, within 3 days but with the wrong tissue (being scar tissue instead of transparent cornea cells). We decided not to proceed with injections as apparently the doses would be uncontrollably strong.

During the month of May, Max has increased his mobility using the cane. He is quickly learning braille.

February 2009 – Avastin drops

In February 2009 Max is a week in VUmc and starts a cure with Bevacizumab (Avastin) drops. The first effects are positive. A friend who has a pharmacy developed an oinment for nightly treatment without woolfat, thus eliminating part of the irritation when waking up.

Allergy analysis didn’t show any news. Max has hay fever as many people in his family. Precautions were already taken. Max now realizes how low his vision is. He accepted Sensis’ proposal to start learning braille. He is also learning to walk with a special cane. Trusting he will be recognized and helped, he is decreasing his dependence.

December 2008; could not read anymore

Since early December 2008 Max couldn’t read anything anymore. Developments went quickly now. We knew it was time for action, for measures: neovascularisation was covering most of his cornea. We contacted Sensis in the Netherlands, an institute that takes care of functioning and well being of blind people and persons with poor eyesight. It was again wunderful to meet persons that truly care about helping others.

January 2009

In January 2009 we got in touch with several oculists and we visited dr. Melles at the NIIOS in Rotterdam. He advised not to undertake any action that would potentially eventually compromise a ‘total solution’. But there is no time left. Max has to see. His eyes are ok, there’s just a layer, a surface, a broken misty window. Our goals are to avoid transplantation, to maximize vision and to determine which external triggers (food, allergies) could possibly worsen deterioration.

May 2008

As from May 2008 things got into a rush. Despite the steroids, despite the diet, Max’ vision got to the point that he wasn’t able to travel independently and safely in modern traffic anymore. So, his skin was healed, his nails were improving (but were far from perfect) and his eyes were still getting worse.

The effects on his eyes can be summarized as

  • Dryness, no tears at all
  • Inflamed Conjunctiva
  • Corneal erosions
  • Progressive neovascularization
  • Probable limbal stem cell deficiency
  • Decreasing vision
  • Max uses to date artificial teardrops, washing liquid and an ointment for the night. He uses “serum drups” made of his own blood.

Classical Homeopathy has done a lot for Max, thanks to Paul Albers in Nijmegen (NL). Max’ constitution, i.e. his mental and emotional well-being has improved beyond belief. Nevertheless, the pathology of his eyes has come to a point where further “regular” medical intervention is unavoidable. Fortunately Max has been visiting Dr Zaal in VUmc in the past 3 years. Dr Zaal didn’t spare any effort to help Max.

March 2007 Update

In March 2007, after the failure of our experiment with sceral lenses (that normally would have helped greatly but the complexity of Max’ problems was just too big), we got to visit a naturopathic doctor. She analysed Max and found him to have the resistance and constitution of an old man. He was diagnosed with the “leaky gut syndrom”. So Max didn’t eat Lactosis, nor Glutes, nor Proteins for more than a month. What happened? His skin got back to normal. Within 4 weeks.

Having reached this result, we hoped for more. Meanwhile it became clear that the dozens of antibiotics (given to Max in infusion in VUmc) that had saved him from dangerous infections at the time, now also seemed to have ruined his intestines. After all this wasn’t a surprise.

According to the naturopathic doctor, Max would need 2 years to regain his “old” strength, another 2 years to regenerate his mucous membranes and then 2 additional years to reset his immune system. Max was on a severe diet, was indeed regaining strength. But his eyes kept deteriorating. So doctor Jes achieved results about which specialists didn’t even dare dreaming of. Nevertheless, Max’ eyes were problematic.

Never be the same

In January 2007 it became clear that his eyes would never be as they had been before SJS. Thanks to some crises during 2006 he had started a cure with Dexamethason, a cortic steroid. Nevertheless, his eyes deteriorated. His skin didn’t heal. His nails grew dangerously. We started looking at alternative methods, without specialists laughing at symptoms (they all did, except dr. Zaal in VUmc, the eye physician).

After an experiment with scleral lenses, contact lenses that are so big they can contain fluid to moisten the cornea, that went wrong because of the fact the lenses seemed to trigger Max’ conjunctiva to elevated activity. Thus encouraging the vascularization that cost him part of the vision left. Please note: SJS leaves a patient with superficial problems, on all surfaces of the body. In other words: his eyes are fine, it’s the light that just won’t pass through the cornea. Meanwhile our health insurance company didn’t ask too much questions. Somehow they, FBTO in Leeuwarden, understood not only the risks but also the seriousness of this case and they made sure Max had and kept access to the best medications.

March 2006 Max left the hospital

On March 30th 2006 Max left VUmc. He was happy to return home. His lips and mouth stopped bleeding in the beginning of May.By then he was able to eat most food.

As his mouth seemed to repair quickly, he had ongoing problems with his eyes, nails and skin. Max had enough energy to go to school, which he did at first half days and in the course of June fulltime.

We had doubts whether the effects of SJS were limited to the M.E. (Milieu Extérieur) but doctors convinced us not to worry.He simply would have chronic problems with nails, skin and eyes. Max didn’t care about his skin or nails but was afraid for what would happen to his eyes.Dermatologists announced that he would have to live with hundreds of scars. His nails could never be repaired.