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Major heart surgery/ MS

My friends niece - who has MS - has recently undergone major heart surgery when it was found she had a hole in her heart. Within days of the op - she is up and about looking better then she has for years. Everyone is amazed. All the mobility problems she had with her MS have gone -and the cardiac specialist said he believes that MS is connected  with abnormal blood-flow - blocked arteries etc. She is having to take blood thinning meds for now. And had to come off all MS meds prior to the op.

When my friend was telling a group of us about this miraculous recovery of this dear girl - my jaw dropped.

l was surprised that after all the tests etc she had when she was diagnosed with MS-nobody picked up that she had a 'large' hole in her heart. We were all concerned for her - as the poor girl had suffered enough with her RRMS. Now - only days after the op - staples/stitches still in- she is a changed person - full of life and overjoyed.

F.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Wow Frances - that is amazing! Maybe there is something that connects MS and poor blood flow. I wish scientists would hurry up and find out what causes this - i hope it’s in my lifetime!

Teresa xx

I'm gob smacked Frances!

Very interesting!

Teresa . x

Nice to hear the patient has responded so well to surgery. Are you subtly implying that CCSVI might be part of the answer for us MSers?

What we need are some decent trials and fortunately, here they are.

http://clinicaltrials.gov/ct2/results?term=ccsvi

wow frances! i hope her improvement lasts for ever. i like happy endings.

x

There are many pwms who believe strenuous exercise helps them, this exercising increases the blood flow.

Pregnant women who have m.s. generally do very well.  I think that in pregnancy there is increased blood flow.

So I'm not surprised at the improvement in your friends niece.

(And not at all surprised that they hadn't picked up on the heart problem  --  we may see neuros but how often are we checked for blood pressure, heart rate etc.  --  very rarely.)

As Treek says - l too was gobsmacked - it was the 'cool way' the cardiologist responded when she was saying how much she had improved - as if it was common knowledge. l will see what more l can find out. As you can imagine l am still shocked by the outcome. lf this is true - then for how long have they known - l am begining to feel a bit cheated of the 'life l should have lived'.

F.

Hi Frances,

Whilst it's great news for your friend's niece, I don't read it as support for circulatory theories of MS, myself.

To me, it's a cautionary tale of how easy it is for other serious conditions to be overlooked, once someone has an MS diagnosis.

Maybe the girl's fatigue always owed more to her undiagnosed heart problem than to MS, but because she had MS, it was dismissed as "normal" she should feel this way.  :(

I suppose MS investigations don't overlap much with heart investigations, so when they found evidence of MS, they'd have assumed it explained everything.

As an aside, I'd had a full medical screening just three months before the relapse that led to my MS diagnosis.   I got a clean bill of health!

Handy for the insurance claim, as there was documentary evidence I'd exhibited no suspicious symptoms which could have invalidated the claim.

But it still baffles people how I could have had a full MoT and been pronounced "fine", just months before diagnosis.

The fact is, there's no screening or investigation that checks everything.  They only check common things, or those that are already suspected.  Because MS isn't common, and I wasn't reporting any textbook symptoms, they didn't look and didn't find.

T.

x

 

 

If you have a 'large' hole in  your heart you are very very very debilitated by it!  When any hole in the heart is mended you feel totally wonderful, on top of the world and in much better health than you ever have been, or could ever imagine being.  

I can't believe that she was diagnosed with MS without the lovely lumber puncture and evoked potentials!  I hope that her MS diagnosis is proved to be misguided and she goes from strength to strength.  This story is one of the reasons I could never ignore CCSVI.  But it could be cause of some people's MS, but not everyone's.  Who knows how many people.  

MORE RESEARCH NOW PLEASE!!!!

Good luck to your niece - wish her good health and happiness from me!

Hi

This is not as shocking as it appears as neurologists really don't know the cause of MS.  The scientific world cannot say for certain whether it is neurological or vascular or genegic or a combinatin of all or some of these.

But whatever it is or isn't I'm really, really very pleased for your friend.

;-) Mary

l know she went through all the tests for MS - mri/LP - and this was some time ago. l have been 'keen' on the CCSVI theory since it first 'came on the scene' - l even went and had the doppler-scan done by an lnterventional Radiologist - and it was found that  my right jugular is blocked when l am looking forward and to the right - so l have to keep going round in circles - nothing new!

After what has happened with my friends niece - l am thinking there must be something in this theory - but perhaps not just ccsvi - maybe they are close but not quite there - as we do hear of such conflicting results. l think the cardiologists should take over more of the research - or at least get together with the neuro's - instead of  sticking to just one theory - lets have a joint effort from both of them.

Well - l am still looking to the left!!

F.

I totally agree, it's time other discilplines got a look in on m.s. management/treatment.

Neuros seem to have a stranglehold on things and I don'tt hink they're doing us any good.

Give us a couple of good haemotologists who are prepared to think outside the box and we may get somewhere  --  even if it may mean regular blood tests.

You are so right!! - What can we do.

F.

Personally, I wish that the different neurological specialities would talk to one another.

This might help to explain why I (RRMS) have better than 50% of symptoms in common with my wife (Parkinsons) and take a drug originally intended for epileptics (Gabapentin), and have a gait like a lot of people with Cerebral Palsy.

Yes, I know that the world revolves round people protecting their own territory, but taking down the artificial barriers that get in the way of everything from the Social Services to the Armed Forces is supposed to be what politicians are for. None of them do it. I recently watched a Policeman walk past an illegally (and dangerously) parked car without stopping - parking got handed over to local authorities to enforce, a warden works a five day 40hr week, and is not around on a Saturday.

So, every specialism works on a basis of referrals from one person to another. This, of course makes lots of work for administrative staff. I find it interesting that most of the hospitals in the South-West have got together to re-negotiate all staff contracts - not just the nurses and orderlies, but all staff. The thought of a shake-up in management does please me.

I do not blame a neurologist for protecting his/her own little territory - I blame the management for not creating a bigger territory with several people inside it.

Geoff

Hi Geoff,

Bit of an aside, and I’m sure I’m over-simplifying massively, but I believe both MS and Parkinsons have been associated with mutations on the same chromosome (Chromosome 6, I think it was).

I had a great aunt with MS, and another - her sister - with Parkinsons (this was out of eight siblings - the rest, as far as I know, were unaffected).

The neuro who took my in-depth history wrote all this down with great interest. She didn’t consider a great aunt too remote to be relevant, and she didn’t think Parkinsons in the same family was irrelevant, either.

Tina

I had some cardiac problems that were resolved by open heart surgery in 2000 (triple byass).
The onset of my MS did not occur until 7 years later.

I doubt if any conclusions can be drawn from this.

Geoff

I am really happy for the girl,and long may her recovery continue. All I will add is that we must remember what CCSVI stands for,and what importance blood flow has for some of us.

 

Wb  x

 

ps  Anu,nice to see you

Just wanted to bump this up for someone who is having to have a pacemaker fitted.

Thought it might bring some 'hope'

l promised an update - Last evening l met up with my friend and l asked her about how her niece is still doing. She told me more about her that l thought you would like to know.

R. is 40yrs old. Was diagnosed with MS 16yrs ago when pregnant with her first child. She lost her sight - which did eventually return. And she lost a lot of her mobility. She was advised not to have anymore children - but went on to have twin boys who are now 8. Then she had another baby 4yrs ago. She is very plucky - and has had a real struggle to cope over the years - with O N and TN -

Since her heart op - only 3weeks ago she is like a new woman [and mum] family and friends and medical profession are amazed. She even had her childrens friends round for a 'sleep over'. Apparently they all slept on the floor in the living room and the hamster kept some of them awake whizzing round and round in his wheel.

Her only ms problem she does still have is bowel control - she has had to use a peristeen kit everyday for a few years.

l told her Aunt - that l have been much better 'bowel wise' - l think due to the large amounts of vitd3 l take - my IBS problems are much better.

Her Aunt is going to pass on all the good wishes that you have sent. - And l will keep in touch - perhaps get her to join the forum.

lsn't it good to hear of 'happy' news.

F.