[Irenec]

How ill do you have to be before a spinal unit will admit you?


My husband is a C5/6 Tetra for 33 years.

He is suffering with 2 attecks a day of AUTONOMIC DYSREFLEXIA with his BP shooting up to

240/146

We have checked for all the usual reasons, cannot find out why. They happen about every 12 hours,
doctors cannot find the reason either.
As you know it is dangerous, has anyone experienced anything like this. If so what did you do?

How can I get on a spinal unit ward for observation.

Thanks a lot IreneC

[Simon]

Hi
Are you sure its not constipation? There's obviously a 12 hour pattern, so its either bowel getting fuller and thus irritated or something that may happen in that pattern.
If I were you I would ring them 3, 4, 5, 6 times/day - make a nuiscance of yourself. I agree its not easy though, there a list for sores even.
Simon

[Apparelyzed]

Hi,

You say the attacks happen twice a day, what do you do to releive the Autonimic Dysreflexia?

What times of the day does it happen?

What bladder management are you using?

Does it hapen whilst in bed, or in his wheelchair?

Simon (aka Apparelyzed)

[Irenec]

Apparelyzed, on Jun 3 2006, 12:15 PM, said:

Hi,

You say the attacks happen twice a day, what do you do to releive the Autonimic Dysreflexia?

What times of the day does it happen?

What bladder management are you using?

Does it hapen whilst in bed, or in his wheelchair?

Simon (aka Apparelyzed)

It lasts about 45m to an hour, I put up with it if i can, otherwise take 1 10mg nifedapine

Between 4pm and 6pm and 4am and 6am

Sheath normally, indwelling catheter at the moment

Both

regards

sreve

[Irenec]

Simon, on Jun 3 2006, 12:04 PM, said:

Hi
Are you sure its not constipation? There's obviously a 12 hour pattern, so its either bowel getting fuller and thus irritated or something that may happen in that pattern.
If I were you I would ring them 3, 4, 5, 6 times/day - make a nuiscance of yourself. I agree its not easy though, there a list for sores even.
Simon

No i am not although taking a lot longer to do bowels at moment, although looking into this.

thanks

steve

[Apparelyzed]

How long have you been getting AD?

One possible cause which comes to mind, is kidney stones. Have you noticed an increase in abdominal spasms with the AD?

When was the last time you had a K.U.B (Kidneys, Urinary, Bowels) scan?

Simon.

[Jilly]

I think here you have to get a referral from someone (your Doc?) to get admitted to a spinal unit. Seems to take ages though, my guy has been trying for months - he has a few things that need sorting out. I think you definately need to see someone who knows what they are talking about and lets face it - GPs dont usually when it comes to spinal injuries.

[chimneygirl]

Wow, im surprised at the fact you are having trouble getting into you spinal unit.

All i need to do is call Southport outpatients and im usually seen that day if not most certainly the next.

[mttb14]

Hi Steve,

Dyhydration can bring on AD also, John suffered on and off like you for a week in 2004. Sky high blood pressure in the morning, down at lunch time and then sky high in the afternoon. His was linked to retention and then dyhydration. He had just about all the symptoms mentioned, but still no one linked it.

If you take him to A&E they will admit him, there and then and they can then refer him straight to the spinal hospital. They have to treat AD as an emergency.

If you go to the following page there is a link for a card you can print, which if you take to the hospital and show them it in A&E saying you suffer AD you will jump the queue.


Autonomic Dysreflexia site:-

http://www.sci-info-pages.com/ad.html


Printable Autonomic Dysreflexia card to show medical teams:-

http://www.sci-info-...om/ad_card.html

Print this card and carry it in your wallet for anyone who may need it to see.

We went to A&E and showed this card to the triage nurse and John had a room, a doctor, a member of Urology called for, all within 15 minutes. They all read the card, except the Urologist who happened to be John's treating doctor.

We have had passed experience where we had never heard of AD and in 2003 no one in the hospital tied it in with what was happening to John.

Good luck, I've learnt who ever screams the loudest, gets heard.

Maria

[Apparelyzed]

Here's the Apparelyzed card.

It's 150dpi, so it looks big, but when you print it out it should be ok.


Download, print and cut it out, fold in half, and laminate.

Simon.

Attached File(s)

•  autonomic_dysreflexia_card.pdf (71.17K)
  Number of downloads: 45

[Irenec]

Thanks Simon

[Irenec]

These ad attacks come on about 4 hours after my main meal

[mttb14]

Hi Steve,

John's signs were pounding headache and what he thought was blocked sinus passage, sweating with goosebumps, blood pressure 260/155 with a slow pulse, vomiting, he could not stand the light and he had lines in front of his eyes. We thought he was having a heart attack as he had pains in his chest, 5 days in hospital with the bp fluctuating and they still did not work it out.

If he layed down his bp went up really high, retention was main problem. Also constipation, his bowel was pushing onto his already full bladder.

Have you got any problems with sores, ingrowing toe nails, cuts etc as this can also bring on AD, also sun burn we have been told can cause a flare up.

You really must go to the A&E and tell them you have AD and take the card with you. It can be a matter of life and death and you don't want to risk your health. Let them work out what is causing it, at least they can give you treatment while they are trying to figure out the cause, and your wife will feel safer, because it is frightening when you are trying to help your partner, but you don't know what to do.

The Urology department deals with it in our hospital once you have been in A&E and Acute Medical, they have to treat it as an emergency as the card tells them.

Let us know how you get on.

Maria

This post has been edited by mttb14: 04 June 2006 - 05:56 PM

[Apparelyzed]

You really need to get an examination, as it could be anything, from a twisted bowel, to really bad wind!

It does sound gastro intestinal though.

Having said that, whenever I have AD symptoms, 99% of the time, it's bladder related.

Here's the card as a pdf file for you to download as well.

Simon

Attached File(s)

•  autonomic_dysreflexia_card.pdf (71.17K)
  Number of downloads: 46

[Irenec]

Apparelyzed, on Jun 4 2006, 08:41 PM, said:

You really need to get an examination, as it could be anything, from a twisted bowel, to really bad wind!

It does sound gastro intestinal though.

Here's the card as a pdf file for you to download as well.

Simon

Thankyou Simon.We are rally going to try and sort this out with the GP tomorrow. It is so scary!

[mttb14]

Why are you waiting to see the GP, most of them don't understand SCI or AD.

If you go straight to A&E they will sort it out there and then and if necessary keep you in hospital for observations. Show them your card and you really won't believe the speed with which you will be treated.

John could have died, if we had not got him to hospital when we did, and believe me, trying to get him to a GP or hospital is real hard work, but that day, he thought he was dying and he still tried to convince me to look after him at home. He was on Acute Medical for 48 hours with constant nursing care.

This is a subject to serious to wait until you can get a GP's appointment.

I know I sound as if I'm pushing, but when John was really ill with it, we both thought he was going to die, and that was because he waited, instead of going straight away. When he urinated his bp came back down over the next hour, and 12 hours later when his bladder was full again his bp would be sky high.

John is an incomplete C5/6, he can walk with great pain and an awkward gait. (I so hate that expression)

Get looked at. Let us know how you go.

Maria

This post has been edited by mttb14: 04 June 2006 - 10:28 PM

[Irenec]

Thankyou everyone I got up at 5am this morning preparing to go.Ididnt mention Steve also has SYRINX
diagagnosed about 8years ago.Three weeks ago he and i went to a spinal unit outpatients department in an ambulance,he layed down all the way (170Miles away),when we arrived there he was not sweating or anything,as he only sweated when sitting up, at that time (AD)They said he needed urodinamics but could not do this untll November,they may fit him in in July.WE ony had twenty mins consultation with the spinal unit doctor. We didnt have any bps readings to show the doctor as we werent use to this situation and his bp was normal when we arrived there,but we have now! We then found a uroligist in London,who did this xray.He also worked in a spinal unit,We paid privately to see hin as we were at our wits end.He has now changed spinal hospitals,but even they say they have no beds totake someone in for investigations.

This post has been edited by Irenec: 05 June 2006 - 11:34 AM

[Irenec]

I think the problem is intestinal as he gets so bloated.Or to do with his syrinx. We have managed so well for over 30years,and havent bothered anyone ,but this has now come to a head I now feel totaly exhausted trying to sort this out!

This post has been edited by Irenec: 05 June 2006 - 11:35 AM

[mttb14]

Hi,

GO TO ACCIDENT AND EMERGENCY AT YOUR NEAREST HOSPITAL AND TELL THEM HE HAS AD. TAKE THE DETAILS OF AD WITH YOU (Print off the card) Take details of varying BP and give details of when he experiences it, if it is worse around tea time, go then, high blood pressure frightens the nursing staff at A&E.

THAT WAY THEY WILL FIND HIM A BED EVEN IF IT IS NOT ON A SPINAL WARD TO START WITH. THEY WILL PUT HIM ON ACUTE MEDICAL WHERE HE WILL HAVE 24 HOUR OBSERVATION. IT WILL BE FOR THEM TO THEN FIND A BED ON A SPINAL WARD OR IN A SPINAL HOSPITAL, AND AS HIS BLOOD PRESSURE GOES UP AND DOWN IN THE DAY, THEY WILL WANT TO FIND OUT WHAT CAUSES IT.

SHOW YOU KNOW IT CAN CAUSE A STROKE, SEIZURE OR EVEN DEATH AND TELL THEM YOU ARE NOT WILLING TO HAVE THIS RESPONSIBILITY LEFT FOR YOU TO DEAL WITH, IT IS A MEDICAL EMERGENCY AND YOU WANT IT DEALT WITH NOW.

IF YOU JUST GO TO A&E OR DIAL 999 FOR AN AMBULANCE, TELL THEM IT IS AUTONOMIC DYSREFLEXIA AND THAT IT HAS TO BE DEALT WITH AS A MEDICAL EMERGENCY, AND OUR EXPERIENCE IS THAT THEY DO TREAT IT AS AN EMERGENCY THEN AT A NORMAL HOSPITAL.


THIS IS IMPORTANT.

MARIA.

This post has been edited by mttb14: 05 June 2006 - 03:21 PM

[Irenec]

THANKS AGAIN EVERY ONE WHO ANSWERED. MY HUSBAND IS NOW ON OXYBUTYNIN AND FEELING SO MUCH BETTER.

[agm]

Glad to hear he's feeling better. that must have been very scary. I have a friend with same problem and its due to kidney stones. Not much fun

This post has been edited by agm: 09 June 2006 - 05:55 PM

[Apparelyzed]

Irenec, on Jun 9 2006, 05:49 PM, said:

THANKS AGAIN EVERY ONE WHO ANSWERED. MY HUSBAND IS NOW ON OXYBUTYNIN AND FEELING SO MUCH BETTER.

Good to here it's being taken care of, was it bladder spasms in the end?

Simon

[Irenec]

Apparelyzed, on Jun 10 2006, 09:24 AM, said:

Irenec, on Jun 9 2006, 05:49 PM, said:

THANKS AGAIN EVERY ONE WHO ANSWERED. MY HUSBAND IS NOW ON OXYBUTYNIN AND FEELING SO MUCH BETTER.

Good to here it's being taken care of, was it bladder spasms in the end?

Simon

Hi Simon,I do not know,but the doctor from the spinal unit prescribed the medication.Steve told the community liason nurse his simptoms,she then talked to the spinal doctor who then told him what to take.
Why this wasnt suggested by the other spinal unit doctor,iwill never know.I think it was most definately
bladder spasms.This has been going on for a very long time!