PMNASAH - a medical patient's experience.

[Steptoe]

This forum has been very useful, providing me with information which is difficult to find in the published medical literature.  I thought it would be worth posting my experience and observations in case someone else finds something in them of value.  I apologise in advance for the prolixity.

 

I am a 60yr old recently retired former Consultant in a hospital specialty (not neurosurgery, neurology, ICU or acute internal medicine) so, apart from learning about SAH at medical school and occasionally coming across cases with a poor outcome during my career I had no particular interest in, nor special knowledge of SAH.  Of course, nothing I say should be construed as advice.  I will give my commentary as follows:

 

History of my case to date.

Observations:

1) Rarity of perimesencephalic non-aneurysmal subarachnoid haemorrhage (PMNASAH). 

2) New National Institute for Health and Care Excellence (NICE) guidelines on (Aneurysmal) SAH.

3) Loss of driving licence and DVLA.

4) Lower back and leg pain.

5) Proportion of us who are athletes.

 

History: I joined our very exclusive club 12 days ago when I was lifting a heavy load alone at home and experienced a classic "thunderclap headache" (TH) severe nausea, sweating, and almost instant neck stiffness (meningism / meningeal irritation).  I thought immediately "[expletive], I've had a SAH". After about 5", when the nausea had subsided and I could swallow I took two paracetamol and went online to see what proportion of TH turn out to be SAH (~10%). 

 

I WhatsApped my keyholding neighbours to ask them to ring me in 15" and if I did not sound right to take me to the emergency department (ED) and tell them that I had had a TH and that SAH needed to be excluded. 

 

I spoke to my daughter, a Medical Registrar (senior trainee) in Internal Medicine 85 miles away to tell her what had happened and to try to convince myself and her that I did not have to go to ED!

At 4 hours I had not improved so walked to ED and was triaged for urgent assessment.

At 8 hours, ED being frantically busy, I was seen by a medic and a non-contrast cranial CT was requested.

 

At 12 hours I had the CT which was initially reported as normal.

At 18 hours I had a lumbar puncture.  It was a "****** tap" meaning that blood from the procedure contaminated the cerebrospinal fluid (CSF) which had been taken.  However, it also showed xanthochromia (presence of breakdown products of blood, confirming that there had been a recent bleed into the subarachnoid space - i.e. a SAH).

 

At 22 hours I had a venous contrast cranial CT to look at the blood vessels in the brain; no aneurysms or other vascular anomalies were identified.

 

At 30 hours I was transferred to the regional neurosurgery unit and admitted to the intensive care unit (ICU) as there were no beds on the neurosurgery high dependency ward, started on Nimodipine (a cerebral artery vasodilator conventionally given for 3/52 in aneurysmal SAH), continued on regular 6 hourly paracetamol, supplemented by Oramorph (a liquid preparation of morphine) titrated against the pain. 

 

The plan was for a digital subtraction angiogram (DSA) later that day.  For a DSA a slender catheter is introduced into the femoral artery in the groin and threaded up the aorta, past the heart to the large vessels supplying the neck and head to inject dye and provide very detailed images of the vessels supplying the brain.  

 

At 42 hours I was discussed at the  daily early morning multi-disciplinary meeting (MDM) between the surgeons and radiologists at which they review the images and clinical condition of patients admitted over the previous 24hrs, discuss each case and reach consensus as to the best management plan. 

 

At the MDM my  first CT was re-interpreted as showing a Grade I SAH with the characteristic distribution of a PMNASAH, so the DSA was cancelled (much to my relief!) and a second venous contrast CT requested.

 

At 46hrs the repeat venous contrast CT confirmed the absence of a vascular abnormality, so a definitive diagnosis of PMNASAH was made.

 

At 70hrs I was discharged home from ICU, Nimodipine was discontinued (trials have not shown benefit in our subgroup of SAH).

 

Days 5 to 9:  Headache largely controlled by regular paracetamol with 30 - 60mg codeine, taking regular (over the counter) Dulcoease stool softener to help prevent anticipated codeine-induced constipation.  The headache which was continuous, frontal and behind the eyes, became accompanied by a savage pulsatile exacerbation on getting up too quickly. 

 

This lasted 5 to 10 heartbeats as the blood pressure and flow adjusts (as it always does, but we don't notice) to pressure changes because venous blood pools in our lower body and arterial blood has to be pumped higher. 

 

The neck/thoracic stiffness eased and was replaced by very severe pulsatile pain in the lumbar and sacral region of the lower back and pelvis, radiating into the buttocks and down the backs of both thighs, the pulsations simultaneous with, and lasting as long as those in my head. 

 

I theorised that this was because the irritant blood from the bleed had migrated down the meninges from the head and neck to the lower part of the spine; though this is not well-described in the literature, it seems to be fairly common in posts in this forum and some of you have been told that this is the explanation so that fits my hypothesis.  

 

Days 9 to 11: Headache waning, but still requires regular paracetamol and codeine, pulsatile element of headache disappeared but became worse in the lower spinal region / buttocks, backs of thighs, on standing or on flexing hips and extending knees. 

 

Presumably that is from stretching of the sciatic nerve on each side, causing traction on the meninges around the lower cord / cauda equina, again something we don't notice normally but manifests now because the meninges down there are irritated and therefore hypersensitive. 

 

Day 12: Sacral pain eases, pain is still triggered by movement, bending over or crossing legs when sitting but is now confined to lower buttocks and backs of thighs.  I walked 7km without issue, albeit with a slightly odd, bent knee gait, presumably to minimise stretching of the sciatic nerves.

 

Observations:

 

Rarity of the condition:  SAH is rare and PMNASAH rarer.  At home I have my wife's 2010 5th edition of the major UK reference book on internal medicine, the Oxford Textbook of Medicine (3 volumes with 5518 pages).  It has only 2 pages on SAH with 4 sentences on PMNASAH.  On average a GP will expect to see one SAH every 8 years, so there is only one PMNASAH in two GP working lifetimes, and therefore many will never encounter one.

 

At an incidence of 0.5/100,000, there are only about 335 a year in the UK.  Therefore, it is not surprising that, as many of you report, your doctors know little about the condition and do not have detailed knowledge of its sequelae, recovery etc. All doctors will be expected to recognise that a thunderclap headache (TH) requires urgent assessment to exclude SAH and it seems that most of you found that they did.

 

New NICE guidelines on SAH.  On the day of my bleed the National Institute for Health and Care Excellence (NICE) issued new guidance on the investigation and treatment of SAH, which my daughter found and read immediately after I told her I had had a TH, so that she could update her knowledge and delve deeper into the subject than her medical school teaching and clinical exposure had hereto given her. 

 

The guidance deals specifically with aneurysmal SAH (ASAH) so it has little to say about PMNASAH but one thing was of interest; section 1.1.11 "If a CT head scan done within 6 hours of symptom onset and reported and documented by a radiologist shows no evidence of a subarachnoid haemorrhage, do not routinely offer a lumbar puncture [LP], think about alternative diagnoses and seek advice from a specialist" and, section 1.1.12 "If a CT head scan done more than 6 hours after symptom onset shows no evidence of a subarachnoid haemorrhage, consider a lumbar puncture". 

 

Essentially, CT scan within 6 hours is so sensitive, picking up >99% that LP can be avoided if it is negative - that raises the question as to what happens if, as in my case, the initial report misses a SAH which is present on the scan, but continued symptoms would usually trigger review of the CT by a neuroradiologist and of course, my scan was after 6hrs so a LP was indicated anyway. 

 

The NICE guidance has lots of useful and interesting stuff about ASAH which may be useful to people suffering from that - the Mods may wish to flag it in the appropriate forum. 

 

https://www.nice.org.uk/guidance/NG228

 

There is much more very detailed information about the data and meta-reviews behind the guidance accessible though links within the document - for example, the subsection on diagnostic investigations  runs to 174 pages!

 

Driving and DVLA: We have to inform DVLA and stop driving until certain criteria are met.  I was encouraged to see that they recognise PMNASAH as a separate category.  When I filled out their form I accompanied it with a covering letter, quoting the criteria they state in the detailed guidance for medical professionals assessing fitness to drive, specifically that "Driving may resume on clinical confirmation of recovery, and, if no other cause has been identified, documented normal cerebrovascular imaging".

 

I pointed out that the second criterion had already been fulfilled with two negative CT angiograms and that I expected the first to be fulfilled at my follow-up appointment in 6/52. I included a copy of my discharge summary so that they had the relevant information about my case so far. 

 

 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1084397/assessing-fitness-to-drive-may-2022.pdf 

 

Of course, DVLA, like all departments, is suffering from delays due to years of austerity and the effects of Covid so I fear that my licence will not be reinstated promptly.

 

Lower back and leg pain - this is covered in the later part of the "history" above.

 

Number of us who are athletes.  Reading the posts in the forum I was struck by how many of us were at the gym or running when we bled.  I am a keen cyclist, specialising in hill/mountain ascents either out on the road or in the basement on a turbo trainer, with (of interest to you runners) an estimated VO2max which fluctuates between about 55 and 65ml of oxygen/kg.min (normal for a fit 20yr old!) depending how trained I am -

 

sadly it must be declining now because I have not got back on the bike yet.  Whether the high number of fitness enthusiasts in the PMNASAH cohort here is real or whether we are a group of health obsessives who are more likely to post our SAH experience is an interesting question 😉 

 

As PMNASAH is thought to be due to bursting of a vein, or possibly of a venous anomaly rather than an arterial aneurysm and whether we are therefore more likely to be doing something which results in a rise in venous pressure (a Valsalva manoeuvre, as in my case when lifting a heavy load) rather than a spike in arterial pressure, as occurs at orgasm or when taking a line of cocaine is also interesting. 

 

However, PMNASAH is also associated with orgasm, perhaps because of arching the neck (stretching the brainstem) and possibly a Valsalva manoeuvre at the same time.

 

Well, if you've persevered with this long account, congratulations.  I hope there has been something of interest.  While it has been an unpleasant experience, I am very lucky to have had this variant of SAH and I will update my post with a (briefer) account of progress in due course. 

 

Old Steptoe.

 

[subzero]

Hello 'OldSteptoe' 😊  and welcome to the unique and exclusive world of BTG SAH and PMNASAH survivors and their families.

We are here for support and do not provide medical advice.

 

Thankyou for your highly structured insight into your twelve day journey post bleed. We are delighted you discovered the site so quickly, and have already found the personal accounts of some of our members a help in providing an insight into what may be expected, as you come to terms with this very challenging condition.

 

It is very early days since your bleed, and with such an active, demanding vocation such as yours prior to your recent retirement, not to mention your physical exercising, the most important initial advice that will 'scream' from the various forums on BTG is .... your brain still needs time to heal.

 

Although as in your case there may not be obvious evidence of damage... many of our members have discovered that as days lead to weeks lead to months, there are quite tough debilitating issues that result in the old 'normal' becoming rather elusive to say the least.

 

So elementary first steps such as keeping well hydrated, resting often and limiting stresses and physical exercise .... these give you and your brain a fighting chance in your recovery journey.

 

So we look forward to your updates from time to time and of course you will find reading the personal accounts of our members such a helpful insight.

 

Finally I do hope that your final comment is not one that will have to rethink twelve months  on.

 

On 04/12/2022 at 16:35, Steptoe said:

While it has been an unpleasant experience, I am very lucky to have had this variant of SAH 

 

Take care and we wish you well as you begin your retirement.

 

Subs

 

 

[Tina]

Hi Old Steptoe  

 

A very warm welcome to BTG, so glad you found us.

 

Thank you for posting your journey so far and for taking the time to post some really helpful information. We look forward to hearing more from you. 

 

Where you comment on most Doctors not having any knowledge of recovery from SAH, my GP did not and has been using me over the years to learn about it, to help others in the future. He has been very supportive and helpful. I am one of the lucky ones. My Doctor had not come across anyone that had survived before me  I also told him about this amazing Forum. 

 

Wishing you well, go steady. As Subs has said it is very early days in your recovery, your brain has been through a major trauma. Enjoy your retirement   Please keep us updated with how you are doing and feel free to join the daily banter in the Green Room.

 

Take care

Tina  

 

 

[Steptoe]

Many thanks Tina and Subs: 

 

Yes, I am cognisant of the need not to give medical advice and, not having expertise in this field would not do so, regardless of the rules!  The two pieces of advice I cited and quoted are guidance by national bodies targeted at the doctors dealing with us.  

 

The first, the recent NICE guidance on the investigation and treatment of SAH, although specifically for aneurysmal SAH contains lots of interest.  

 

The second, DVLA guidance to doctors assessing fitness to drive, is useful so we know on what basis our application to return to driving will be assessed.  In the case of uncomplicated PMNASAH, just two criteria, clinical recovery and documented normal cerebrovascular imaging.  

 

The form (B1) we fill in when we inform DVLA of our condition provides a box to tick in the medical questionnaire (section 1b, Brain haemorrhage including SAH, aneurysm and AVM) and gives a single line, 2/3 of the width of the page in which to give details in block capitals, insufficient even to write "peri-mesencephalic non-aneurysmal subarachnoid haemorrhage" unless one has micrographia.

 

Discovering that there are multiple different ban periods depending on what type of underlying condition there is, whether it has not needed intervention (as in our case) or would usually have had intervention but has not been treated, has been treated by coil or surgery etc.

 

I wanted to avoid delay as DVLA sought further information from the GP or surgeon and to make it clear to the assessors that the documented normal cerebrovascular imaging had already been performed (twice in my case) so that there should be no delay once recovery had been confirmed by my surgeon or GP. 

 

Therefore, I included a covering note and copy of my discharge summary.  Demonstration that all relevant information had been provided would also put me in a good position should I need to stir them up over a delay or submit a legal challenge against an incorrect decision. 

 

One can often find useful information online which can help pre-empt questions and prevent problems.  A few years ago I was an executor and as anyone who has done this will know, there are multiple complex forms which have to be submitted to HMRC especially when there is a potential inheritance tax liability. 

 

I had to submit a couple of kilos (as the Post Office scales told me) of supportive documents with the application for probate.  HMRC publishes online a partially redacted copy of the huge manual of guidance to tax inspectors which goes well beyond the supplementary information for an executor filling in the forms. 

 

It was very useful to know on what basis the tax inspector would be assessing the return, so I could tailor the answers to the questions in a way that they would be answered without the need for further correspondence and delay to issuance of the grant of probate.  

 

I suppose it is like reviewing the syllabus, past papers and knowing the marking scheme for an exam you are taking so you can squeeze out the maximum marks in the minimum time and achieve a good grade, or in our case, win the prize of getting our licences back!

 

Apart from family I like reading, current affairs, the physical challenge of extreme exercise and the social element of club cycling, making mosaics, DIY, stained glass and gardening which exercises the hands and creative part of brain but, reflecting on all this, it is clear that we all have different ways of reacting to a major life-event like a SAH. 

 

In my case, especially now that I'm not ready to hammer up the hills, I realise that that includes drilling into the subject and re-learning some neuroanatomy, which also satisfies a gap in retirement I had not previously identified; learning and exercising the analytical part of the brain which was being trained and stretched for the last 60 years.  

 

Right, it is time to get back to the tile saw and the project I was doing two weeks ago before it was rudely interrupted!  I will update in about month when I have had my follow-up in case there is anything more of interest to others with this condition. 

 

I know that the rapid pace of recovery so far does not necessarily mean that there will not be setbacks, but am relieved that all the evidence points to the likelihood of recurrence as vanishingly small - far, far less than the risk of being hit by lightning, so plan to live my life accordingly. 

 

I also realise that at the moment, though the abatement of symptoms mean that I have been able to taper my codeine to a prescription-free over-the-counter dosage of 16mg with 1gm paracetamol 6 hourly, and hope to be off all analgesia within a few days, (so it isn't the opiates !).

 

I am on a high because the instant the headache hit I knew that there was a fair chance I would die or suffer severe disability - as Tina's comment that her GP had only known of patients who died indicates - so the relief and the wave of love and support from family and friends has made me a bit too perky and there will surely come a time of reckoning and depression in the next few days or weeks. 

 

Yours until next year; Auld Steptoe. 

[Arly1]

I hope your recovery goes well Steptoe.

Interesting, I didn't get a thunderclap headache. It started with blood trickling down the inside of my skull at the back of my head so I knew I'd had some sort of haemorrhagic stroke. 

The neck pain then became very bothersome but I didn't feel nauseous and wasn't bothered by light.

 

I feel lucky that after a few hours in A & E I wretched once because not much was happening until then but straight afterwards lots of Drs arrived and I was sent for a CT which showed lots of blood so I was then placed straight in an ambulance and sent to a more specialist hospital where they carried out a DSA but no cause was ever found, so luckily no surgery.