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Diary, Ladan

What’s happened to Ladan?

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[this article was last reviewed for accuracy or updated on 11th September 2006]

Between November 2004 and July 2005 Ladan suffered three brain haemorrages, a severe siezure, some dangerous infections and other complications that required over a dozen invasive brain surgery operations.

Ladan has been in a state of reduced consciousness since a haemorrhage in November 2004 with further set-backs in December of that year and March and July in 2005. Since then, at the time of writing, Ladan has remained increasingly stable. There have been no major improvements in the last year but some very small possitive signs are often observed.

Shortly after our wedding in April 2004, Ladan started to have very vivid and frightening visions that something terrible was going to happen to one of us, probably herself, these visions started to trouble Ladan quite a bit. Ladan also had a couple of bad asthma attacks and then some sharp pains, short-lived and generally in her legs. Ladan tried, as much as possible, to put these things to the back of her mind and take no notice of them, she spoke to her GP and they saw no cause for concern.

While teaching children at the Reading Baha’i summer school in August 2004 Ladan developed some redness, swelling and blisters on her right foot. It seemed that a bee or similar insect had bitten or stung her right ankle, though even then it looked like something of an over-reation. Rather than settle down, the swelling spread to her left foot. It was uncomfortable for driving and walking and the doctors, unsure what the cause could be, prescribed a cream which I spent many weeks massaging her feet with, it seemed to calm the pain and swelling but did not cure the problem very quickly. Eventually a course of steroids fixed the problem.


Ladan (2nd from right) and Persian dancing friends in Reading

No sooner had the swelling died down than Ladan’s wrists swelled up in the same manner and Ladan also got occasional tingling and numbness in her fingers. Again, the doctors could not explain it but steroids cured it. In early October Ladan developed a severe pain in her stomach which kept her in bed most of the time and caused her to vomit almost everything she ate. For the first time in her life Ladan had to take time off work. During the October school half-term holidays we came up to Newcastle thinking a nice break visiting relatives may help, unfortunately it didn’t after a few more days of no improvement and more visits to GPs in the area she was admitted to hospital where she was kept under watch. At that time they still suspected a simple stomach disorder such as gastroenteritis or possibly a stomach ulcer.One week later, on the morning of 4th November, she had sudden severe head pain accompanied by numbness in her face and arms, slurred speech and blurred vision. Doctors assured us that this was a very bad migraine headache until the afternoon when they started becoming concerned it may be something more and set up an MRI scan for her. Ladan spent an hour in the MRI room with more doctors and big books entering the room as we waited, finally she came out and smiled very sweetly as I shared a joke with her and she told me the headphones hadn’t been working in the scan room, then, before the consultants eyes, she fell unconcsious. Having seen the scans they were already aware that this could be a severe bleed in Ladan’s head and they treated it as such, Ladan was to have urgent brain surgery to remove the blood clot, which, I was warned, she may not survive. The family sat together in Ladan’s former cubicle praying and text messages flew out asking others for prayers too.

Following surgery we were informed that she was still alive but only just and the best case scenario was that she would live with severe brain damage for the rest of her life. Ladan was moved to the Intensive Care Unit. From that time to now Ladan has been unconscious. The bleed, we were informed, had been caused by a rare vascular disease called Churg-Strauss Syndrome. The main test for this is a blood test which takes about a week to complete and the results had arrived while Ladan was in the MRI scan. The blood clot had been focussed around the base of the brain and had caused severe damage to the brain stem and the many nerves in that area, this would affect control of breathing, heart rate, blood pressure, and movement. The higher cotrical regions of the brain, believed responsible for thought and understanding, were relatively untouched by comparison.

In the early weeks Ladan seemed to be doing very well, though she was fairly unstable and caught many infections, she was quickly breathing for herself and started understanding and responding to requests, Ladan started looking around and focussing on people and scanning text. Toward Christmas her responsiveness seemed to drop for long periods of time – whereas previously she had squeezed hands on request she would only stick out her tongue or request, or merely shake her head when she was asked if she could do something – she would then be very alert for shorter, less frequent periods. A few days before Christmas her mother and grandmother were communicating with her, getting yes and no answers from the nodding and shaking of her head, and having smiles in response to promises of the meals that would be cooked for her when she was out of hospital.

On Christmas Eve Ladan’s temperature, blood pressure and heart rate started to rise sharply, something that had often happened and was being treated with a particular drug. That night, as much as Ladan’s Mum pleaded while Ladan became more and more unstable, the usual drug was not given. In the early hours of Christmas Day Ladan started having violent seizures (fits), these remained violent for about two and a half hours and continued at a lower level until midnight (nearly 24 hours). Scans were unable to find a cause for the seizure, the likes of which had not been seen in the weeks prior to, or the months following, that night, beyond the conditions that she was left to endure. Scans do, unfortunately, show that the seizure had caused extensive extra damage to Ladan’s brain, now the outer ridges of the brain were damaged, impacting on the cortical regions, and barely any activity was detectable. The scan that nigiht also revealed a small rebleed in the cerebellum, probably a couple of weeks old, which may possibly account for the change in responsiveness observed from around that time.

It took Ladan a couple of weeks before she started opening her eyes again and responding to light and pain, but she did it, and since then it has remained a slightly bumpy ride for Ladan, she has had one or two very stable periods and during them she has done some encouraging things such as manage to move her head or limbs this way then that in response to requests several times running or give very definate blink responses on request, but even when Ladan is at her best she does these things very infrequently, doctors and nurses have not therefore witnessed these signs and scans continue to suggest there is barely any activity in the cortical areas of her brain.

Ladan has undergone a lot of brain surgery since Christmas, mainly in an attempt to deal with a condition called hydrocephalus, a build up of excess fluid in the brain which can cause dangerous pressure levels and reduce consciousness. This is very common in patients who have had a brain haemorage and has a simple treatment but complications are common and in Ladan’s case complications became a standard occurence, having had more than 11 operations since Christmas, often 2 in less than a week. Hydrocephalus itself, surgery for it and infections have often been keeping Ladan back from basic health in her attempt to recover. The underlying condition of Churg-Struss Syndrome however, which caused the original problems, does seem to be firmly under control.


Newcastle General Hospital

At the end of July Ladan had her last treatment for the apparant hydrocephalus, though it is still very apparant on scans. A few days after that Ladan suffered a deterioration in her wakefulness and in her eye control as well as an increase in facial twitching, particularly in and around her eyes. An MRI scan taken at the end of August showed that Ladan had suffered a further small haemorrhage, this time in her brain stem.

Discussions over funding issues between the Primary Care Trust and the different parties involved caused major delays in getting Ladan into a rehabilitation centre. On 31st August Ladan moved to a rehabilitation centre in Peterlee, Co. Durham, but they didn’t have much to offer by way of a rehabilitation programme. At the beginning of May this year we moved back to Newcastle into a care home called The Minories, where we remain to this moment, again there is little rehab input but the environment is quieter and friendlier.

Although occasionally doctors have expressed cautious optimism when Ladan has been well and showing encouraging signs, and although she does show some signs of basic awareness, the prognosis remains almost as poor as it did on November 4th, that Ladan is unlikely to make much progress from her current state.

There are occasionally very encouraging signs of awareness that give hope that Ladan may among that small number of people who do make amazing recoveries from these kinds of scenarios, virtually all of whom do so with great devotion from a loved one.


The Minories

I also have a great faith in prayers, which I say regularly, and there are a wide array of small but encouraging details that collectively raise hope very well.. for one small example among many: in addition to having clear visions of a disaster in the wings Ladan also had an extremely clear and vivid vision of giving birth to a son.

People all around the world have been praying for Ladan, people from all backgrounds and religions, and I truly appreciate this with all my heart.

Comment, Useful Links

Churg-Strauss Syndrome – Warning Signs

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The rare but potentially fatal condition of Allergic Granulomatosis, also named Churg-Strauss Syndrome after the two scientists who discovered it, is generally not recognised or diagnosed until a life-threatening bleed has occurred inside a major organ of the body.

The primary method of diagnosing Churg-Strauss is not however from the deadly bleed itself, but rather through the results of a particular blood test called ANCA (anti-neutrophilic cytoplasmic antibodies). It takes about a week for the results to come back from this test and most surgeries and many hospitals will have to send the blood away for this analysis. Because of the duration that this test takes it is particularly important to have the test done as soon as there is reasonable cause for concern.

For Ladan, my wife, the results arrived after she had started bleeding in her head and less than an hour before she fell unconscious. Most of what I am about to write is based on what were, with retrospective vision, probably symptoms of Churg-Strauss, in the hope that if you have found this article by searching for symptoms in a search engine, and the picture seems to fit your case, you might ask for an ANCA test to be taken as a precaution. These symptoms are summarised toward the end of this article.

It is important to note that I am not a doctor and the symptoms listed in this article are not necessarily recognised by the medical community as being related to Churg-Strauss Syndrome, however given the devastation that this rare condition can cause I believe that existence of two or more of these symptoms together would make it prudent to check for Churg-Strauss or a similar disease of the auto-immune system. Most web sites dealing with Churg-Strauss Syndrome do not suggest what the early symptoms may be beyond asthma, I can see, retrospectively, that there were many signs of a worsening vasculitis and greater awareness of such signs may help to save others from developing the syndrome to the point that it threatens their lives.

Incidence of Churg-Strauss Syndrome is thought to be less than 1 in 100,000. It is classed as an auto-immune disorder as it flares when the body’s auto-immune system becomes self-destructive. It is a rare form of vasculitis that causes swelling in the smaller blood vessels of the body, generally focussing itself in a very localised fashion. It may affect other parts of the body before inflicting itself on part of a major organ which can then result in an internal bleed which, in turn, may result in death.

It seems that nobody is entirely sure what causes Churg-Strauss but a favourite theory is that a dependence on steroids may be partly to blame, and a group of people who seem particularly at risk from the disease are asthma sufferers, who tend to take inhalers containing steroids on a frequent basis.

Some studies have shown that asthma sufferers have often developed Churg-Strauss shortly after changing their inhalers, this raised questions over whether or not the new inhalers were causing the disease but further research suggested it was more likely to be the cessation of using the previous steroidal inhaler that was bringing Churg-Strauss to the fore.

Inhaler changes tend to be made following bad asthma attacks, therefore bad asthma attacks are often part of the recent history of a Churg-Strauss sufferer. It is also however widely thought that Churg-Strauss can cause asthma or asthma-like symptoms, so an apparent worsening of asthma may well be caused by Churg-Strauss itself, and if, in those rare cases, the steroidal inhalers are not working well then the change to a non-steroidal inhaler is likely to make the Churg-Strauss much worse. Perhaps paradoxically, Ladan found that her new non-steroidal inhaler worked wonders for her asthma, which perhaps suggests that it is the asthma that was worse rather than Churg-Strauss causing it.

Following a few severe asthma attacks which led to an inhaler change, Ladan’s first physicsl symptoms of something not being quite right were sharp pains in her arms and legs, these were fairly short lasting but occurred several times a week.

Next came the swelling. At first it was thought that an unusual insect had got a bite at Ladan’s right foot and ankle as they swelled up slightly, not like a balloon, but it was red and painful and several blisters formed in the effected area. Shortly after this the same pattern started to occur, though to a slightly lesser extent, on Ladan’s left foot and ankle. A cortico-steroid cream was used which helped alleviate the pain and a course of oral steroids eventually made the problem go away very quickly.

Another symptom that started developing around this time was a tingling and numbness in the fingers which sometimes also extended to the fore-arms, again slightly more prominent on one side but often reflected to a slightly lesser extent on the other side. As with the sharp pains this symptom started occurring regularly but it could last for quite a prolonged period of time. This was never really diagnosed as anything with a non external cause.

Ladan also found that her sense of smell went, whether this was a permanent thing that she becamew aware of occasionally or an occasional symptom I am not sure.

Swelling then also occurred in Ladan’s wrists and hands, again red and painful with several blisters forming in the affected areas, and again more prominent on one side but reflected to a slightly lesser extent on the other. In both the swelling on the wrists and on the feet the skin was raised by about 1 to 3mm with the redness. The combination of swelling and tingling aroused suspicions of an allergy, perhaps to a soap or washing powder that was in use, but again an oral course of steroids brought the swelling down.

Blood tests showed that Ladan had a very high eosinophil count (an inflammatory marker in the blood) while the swelling was active which came down quickly with steroid use. This is typical of Churg-Strauss but can also be caused by many other conditions.

The above symptoms were bad enough to be causing serious distress to Ladan, for example the swelling in her feet and ankles made driving and too much walking very uncomfortable. But the most distressing symptom was an agonising stomach pain that hit her about 5 weeks before the condition reached its life-threatening peak.

The stomach pain was in the top centre of her stomach, just below her ribs. It would start hurting about 1-2 hours after eating any food and would only be alleviated after a lot of vomiting. Barely any food stayed down during this period. Ladan had previously suffered from irritable bowel syndrome, another condition for which she had taken steroids from time to time, and knew that this pain was something quite different. It kept her bed ridden and was misdiagnosed consistently as gastroenteritis, though the possibility of a stomach ulcer or appendicitis were also considered.

In addition to typical treatments for gastric problems, an oral course of steroids was attempted at one point during this period but it is possible that many of the tablets did not stay down long enough to have an effect.

The tingling sensation in the fingers started to become more prominent to the extent that for a lot of the time the two fingers nearest the thumb on each hand, but particularly the left hand, felt almost completely numb.

A similar irritation occurred in Ladan’s face the night before a morning where she suddenly had a very severe headache with slurring of speech and blurring of vision, while a migraine can apparently cause these symptoms the actual cause was a stroke, the beginning of a brain haemorrhage that was to make Ladan’s condition critical before the doctors were even certain that she had anything more than an upset stomach. These last symptoms, of headache and effected vision and speech, are typical of a stroke and in any case (not just where Churg-Strauss is suspected) where you are experiencing these symptoms – and do not suffer them regularly as part of a diagnosed migraine problem – they should be reported to a doctor immediately as an emergency. Even doctors themselves are good at misdiagnosing strokes as nothing more than a bad headache, they initially made that mistake with Ladan and I have heard of other cases where people have walked into their GPs, following advise of posters on the wall at their local doctor’s practise, and gone home having been assured that they had a bad headache only to fall prey to what was actually a stroke later in the day. If you have such symptoms and they do not feel right then ask your doctor to rule out the possibility of a stroke as best they can, this should involve some strange tests such as having something scraped on the soles of your feet and being asked to hold your arms up and keep them level in the same position with your eyes closed.

Finally, one symptom that Ladan had before all those I have mentioned already, which persisted to the last, was frequent and vivid visions of something terrible happening to her. This may not sound like a scientific symptom but since Churg-Strauss could be causing very localised symptoms in the brain it may have had a physical cause, but in any case when you have clear visions of impending calamity and you cannot identify a good reason for them I don’t think it should be ignored. Ladan didn’t think so either so she talked to a GP about it, unfortunately it was just thought to be related to stress.

I hope I have painted a sufficient picture of what Ladan went through to assist anybody with similar symptoms in deciding whether to ask for an ANCA test.

Unofficial potential symptoms of Churg-Strauss Syndrome
Initial localised symptoms of a vasculitis will vary greatly between sufferers, I would recommend asking for an ANCA test when two or more of the following symptoms are present:

  • Recent alteration of a long-term regime of steroids, eg. changing from an old asthma inhaler to a newer one.
  • External redness and moderate swelling, possibly accompanied by blisters, localised to one location or mirrored to the same location on the opposing side (left/right) of the body
  • Tingling or numbness in the fingers and/or fore-arms. (Not from external pressure such as clothing, furniture or resting fore-arms on bars). This is also called neuropathy.
  • Tingling or numbness in the face.
  • Severe stomach pain that is not alleviated by treatments for sickness, ulcers or gastroenteritis.
  • Frequent vomiting that is not alleviated by anti-sickness medications.
  • Troubling visions
  • Temporary relief of symptoms by steroids
  • Stroke symptoms (severe headache and/or blurred vision and/or slurred speech)
  • Frequent sharp pains apparently coming from organs or deep inside limbs.
  • Loss of sense of smell.

With exception of the first symptom, most of these warrant a visit to the doctor in themselves, if two or more are present and particularly if there is asthma or a history of frequent steroid use which has changed within the last year then it would be worth having a doctor carry out an ANCA test. ANCA results vary according to how active the Churg-Strauss is at the time of the test and the results will not look as bad following a course of steroids when the syndrome is causing external swelling as the ANCA results will look just before a life-threatening bleed will take place, but the results should still show some evidence of the syndrome if it is present and a suitable immuno-suppressant treatment and/or monitoring can be started to ensure that the condition does not worsen. Once diagnosed the syndrome is not very difficult to keep under control.

This blog entry allows for comments, if you feel you can add additional useful information to this article, for example to help people recognise a potential case of Churg-Strauss syndrome, please do comment.

Link: About.com – Churg Strauss Syndrome
Link: BBC Health – Churg-Strauss Syndrome
Link: Churg-Strauss Syndrome International Support Group

Diary, Ladan

Ladan’s Progress

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Firstly, thank you to all of you who have sent messages of support and said prayers for my dear wife Ladan. This update is just to let you know the latest on her situation.

Until a few weeks ago Ladan was showing some very encouraging signs, she was looking around and focusing on people and text. A few days before Christmas her mother and grandmother were communicating with her, getting yes and no answers from the nodding and shaking of her head, and having smiles in response to promises of the meals that would be cooked for her when she was out of hospital. While this was encouraging Ladan was still experiencing moments of high heart rate and blood pressure, often accampanied by high fever, which were generally kept calm by administering a certain drug.

On Christmas Eve Ladan was getting very agitated and her heart rate and blood pressure again started to rise, the nurse was ordered, for no reason that we are aware of or were consulted on, by the doctors on duty not to administer the drug that calms her down and she developed an increasingly high fever. In the early hours of Christmas Day Ladan started having violent seizures (fits), these remained violent for about two and a half hours and continued at a lower level until midnight (nearly 24 hours). It is unusual to suddenly develop seizure activity 7 weeks after a bleed in the brain and so a CT scan was taken to see if there was any new damage or bleeding to explain the activity. We were told that the scan had shown no bleeds or other damage that could explain the activity.

Immediately following this Ladan has taken a major step backwards in terms of clinical responses. The seizures sent her back into a much deeper coma and a subsequent EEG (scan of electrical activity of the brain) showed very little activity. We have officially complained about the actions taken that night and that complaint is still being dealt with.

A few days ago we had a meeting with a consultant in which we were informed that the CT Scan taken early on Christmas morning shows that Ladan suffered another bleed in her cerebellum, though probably not of sufficient size to warrant an operation. It is believed that the underlying condition ( the vascular disease Churg-Strauss) which caused the first bleeds is well under control and it was conceded that the high blood pressure that was allowed to get out of control that night may have been the cause of this new bleed. On Friday an MRI scan was taken which confirms that the effects of the newer bleed are lessening but also shows some swelling around the all outer ridges of the brain, the radiologist who took the scan said that this pattern can be consistent with having had seizure activity.

As yet we have had no explanation or apology for what happened on Christmas Eve, but what is most important and most encouraging is that Ladan is showing continued signs of recovery from this new low point. Ladan is again responding to pain and more recently opening her eyes, though with less movement than before, and has moments, with increasing frequency, of seeming to understand what is said to her by way of trying to open eyes on request or a change of expression or breathing according to the subject being spoken about.

Below are some links to popular prayers which I recommend for use either fore Ladan or for other loved ones in need:

Link: Baha’i Short Healing Prayer

Link: Baha’i healing prayer for women

Link: Baha’i Long Healing Prayer

I also often find myself saying marriage prayers for Ladan and I as a prayer for a healthy and fruitful marriage in this world encompass the hope that Ladan should make a full recovery in order that we may go on to have children and a united future.

Link: A Baha’i marriage prayer

Ladan is a very sweet soul who has never really done anything wrong in her life, we can only hope that there may be a wisdom to this suffering she is undergoing and that her bright personality will be polished by it to shine even more radiantly than before.

Many thanks, James.

Diary, Ladan

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Ladan & I on the morning of our wedding, April 10th 2004

Ladan is now in the High Dependency Unit at the Newcastle General Hospital showing some signs of response through her eyes and left hand but is not yet conscious. Her condition is still very serious but the doctors are becoming more optimistic in their tone about the possibility of Ladan making some kind of recovery.

About 6 weeks ago Ladan started having severe stomach pains accompanied by typical signs of upset stomach, she did not keep her food down for several weeks and we traveled up to Newcastle for a break thinking it may be stress related, after a few more days of no improvement she was admitted to hospital where she was kept under watch when one week later (two weeks ago today) she had sudden severe head pain in the morning accompanied by numbness in her face and arms, slurred speech and blurred vision. Doctors assured us that this was a very bad migraine headache until the afternoon when they started becoming concerned it may be something more and set up an MRI scan for her. She spent an hour in the MRI room with more doctors and big books entering the room as we waited, finally she came out and smiled very sweetly as I shared a joke with her and she told me the headphones hadn’t been working in the scan room, then, luckily before the consultants eyes, she fell unconcsious. Having seen the scans they were already aware that this cold be a severe bleed and they treated it as such, following surgery later that night we were informed that she was still alive but only just and the best case scenario was that she would live with severe brain damage for the rest of her life. From that time to now she has been unconscious, initially in intensive care and now in the high dependency unit, she has also developed a chest infection and some bowel problems which it has been suggested may also be life-threatening but there is no clear diagnosis on that yet.

Science can keep people alive and Ladan has regained most of her breathing control for herself and is increasingly stable, the initial cause of the bleeding has been diagnosed as churg-strauss disease and can be kept under control with steroids, she will probably feel much better than she has done for a while if or when (as I believe) she makes a full recovery. Beyond supporting life functions and providing medicines the rest of the healing process is left to the human body itself. If there is damage to the brain it may heal as she is young, the extent of any damage will only become obvious if/when she regains consciousness.

I am a great believer in prayer, I have used it many times in my life and am embarrassed at how trivial some of my uses have been, but I know it works. Any prayers that are said for Ladan are most warmly appreciated, I feel moved and strengthened by the extent of support being offered to Ladan from people of all religions from all over the world, as well as the use of some alternative healing techniques that send possitive energy in her direction. Ladan has been fighting a tough battle and is surviving, all the strength you can offer her through prayers is a bonus I truly appreciate and thank you for.