Interrupted - What a pain in the neck! (5 wk update Pg 3)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Interrupted » Fri Oct 22, 2010 11:27 am

CCSVIhusband wrote:I hope it all works out for you ... after my wife's procedure, she complained of chest pains for a few weeks (due to azygous ballooning) - I wouldn't say pain as much as just being able to feel it ... so maybe that's all you have?


Thank you. It's definite sharp pain and I can't actually throw my voice at all at the moment or move my neck too impulsively because it does hurt. Sleeping very carefully as you can imagine. I know what she means though, I can 'feel it' for sure.
I have my suspicions that my CFS kicked in after 4/5days of travel and is now between that and the MS making my body overcompensate in the healing. ie, making me feel awful, weak as *ahem*, flaring my immune system and causing inflammation all over the shop. Not 100%, just a suspicion.

Euromedic were good and did get back to me within 24hrs and said that it was ok, it could feel like this for up to two weeks (who knew..?). And told me to get out and exercise! :lol: I wish!
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 208
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Advertisement

Postby Cece » Fri Oct 22, 2010 11:51 am

Glad to hear you've been checked out and okayed. I am a little on edge from the stories of permanently clotted stents we've heard about lately. I wonder if the best (wow) stories get magnified by the internet but so too do the worse outcomes. If most people are happily and healthily in the middle post-procedure, that would be a good thing, I think.

Keep us updated?
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby esta » Sat Oct 23, 2010 11:50 am

I also had pain in my neck/shoulder, for weeks, others also told me it looked swollen.
the drs do a number in there, and i think we need to undestand it all takes time to heal. i also still have weaker arms off and on.
i wonder on my blood flow ever day, but i notice it seems one week great, then one week not, then i would improve amazingly, then off again. So, i just keep going. it's better than getting worse, and knowing its always going to get worse.
in the longer picture, 8 weeks now, i've changed for the positive 100 fold.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Postby Interrupted » Sun Oct 24, 2010 2:53 pm

Update 12 days post procedure: Well the neck pain is getting slowly better finally (I hope). I still have to move my neck carefully as I get a very sharp pain that almost feels like the vein gets caught on something if I lie with it at anything other than a 90 degree angle, and takes about 2 hours to dissipate.

And when I try and exercise (as I was told) i'm hitting a whole host of problems. I try to do just 5 mins of walking or gentle cycling so that I am moving but no stressing things too much and it's not easy because;

1: My heart immediately starts pounding which in turn gives me a headache, blurs my vision, makes me red hot, and feel like i'm going to faint.
2: Riles the new (since procedure) pins/needles/numbness/extreme weakness in my legs, arms, hands and feet.
3: Makes my jugulars feel very heavy and swollen, could be blood pooling or just a sensation, who knows :?

All in all i'm not in good shape still right now and clueless what to do other than try and ride it out until I get to a plateau. No two ways about it that I feel just plain weird, very ill, not on planet earth, and so darned uncomfortable I can't ever relax properly.

Obviously ideally I can ride this out for 3 months until I can get back to Poland for a check up. But then what i'm not sure. Much as I don't regret having the procedure done, I have to admit i'd be very scared of doing it again with regards possible outcomes after what's happened since the first one.

Right now I just have to try and stay cheery and stubbornly push any anxiety aside, lol xx
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 208
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Postby Drury » Mon Oct 25, 2010 7:35 pm

Interrupted,

Would it not make sense to go to ER like your doctor said to make sure all is well.? I am not sure I like the sound of pounding heart, blurred vision and all. I am not a doctor but surely peace of mind would make you feel better. The idea of waiting 3 months to return to Poland does not make sense. You need to be looked at now.

Keep us posted.
Drury
User avatar
Drury
Family Elder
 
Posts: 237
Joined: Sun Mar 28, 2010 3:00 pm

Postby Cece » Mon Oct 25, 2010 9:03 pm

Interrupted wrote:I still have to move my neck carefully as I get a very sharp pain that almost feels like the vein gets caught on something if I lie with it at anything other than a 90 degree angle, and takes about 2 hours to dissipate.

There was a poster here whose stent had became mishapen at the end of it by her vertebrae. I'll link to it if I can find it. No idea if that's what's going on here but I haven't heard others describing anything like this and I am worried for you.
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby Interrupted » Tue Oct 26, 2010 3:39 am

Drury wrote:Would it not make sense to go to ER like your doctor said to make sure all is well.? I am not sure I like the sound of pounding heart, blurred vision and all.


No i'd be laughed out the door, those things are nothing new, it's just an extreme exacerbation of the alleged CFS side.

Not that anybody's ever been able to explain it, it's just one of those 'we don't know but you're alive and all tests are negative so good luck' situations. :roll:
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 208
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Postby Interrupted » Tue Oct 26, 2010 3:40 am

Cece wrote:There was a poster here whose stent had became mishapen at the end of it by her vertebrae. I'll link to it if I can find it. No idea if that's what's going on here but I haven't heard others describing anything like this and I am worried for you.


I refused stents Cece, I don't have any. Thank you for the thought though x
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 208
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Postby Interrupted » Tue Oct 26, 2010 5:50 am

2 Weeks Update: I do confess that i'm feeling very down today, sometimes the weight of what you've done crashes down a bit.

I mean, it's a real warning to those considering the procedure... I had very mild MS before this, but now it feels like i'm heading for proper all core strength, co-ordination, and flexibility rapidly escaping me MS. My co-ordination was never very good but I could walk and run and jump as long as I didn't overdo it. Now i'm starting to find movement a lot more daunting. The thing that improves with people straight away usually is warmer extremeties... My hands and feet would get cold in the winter before but now they're freezing ALL the time. On top of this I still have to deal with overwhelming CFS, yes i'm having a feeling pathetic and sorry for myself day - gah! lol

Of course, perhaps another procedure can fix all this but i'm oh so very aware that every procedure is another one closer to the possibility of total collapse of the vein. I also still don't want stents so I guess it's likely that i'm now stuck like this. I've contacted the clinic and asked for the doctor's advice, but whatever decision follows i'm sure it won't be as easy to make as the first.
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 208
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Postby Cece » Tue Oct 26, 2010 8:00 am

:(

I remind people who report worsening to remember to consult their neurologist too.

Hands that became freezing cold. Yeah, that's backwards from how it usually goes. Still worried.
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby Drury » Wed Oct 27, 2010 6:48 pm

Interrupted,

Wondering how you are?

Drury
User avatar
Drury
Family Elder
 
Posts: 237
Joined: Sun Mar 28, 2010 3:00 pm

Postby 1eye » Wed Oct 27, 2010 7:59 pm

Sounds like you might have a more general problem with circulation. I have gone to the gym to make sure I haven't lost the little fitness I have. It's still OK. But thinking positively can have good benefits. This morning I was feeling lousy, unable to help my son with 17-year-old angst, sore ankles because my wife has my wheelchair, since she broke her ankle. So I end up getting a lot more use out of the walker.

Anyway, later this morning a friend came over to help with moving bedrooms, and in the middle of it all she asked me how I was doing, and I bemoaned. She said, well to me you seem much better still, doesn't see any regression. Well, it may not be true, but it gave me such a boost that I coasted on that for the rest of the day.

We need to face facts: if we're spending all available time and energy on the computer and the Internet, we all need to somehow 'get out of ourselves'. Spending a lot of time worrying about this procedure is easy to do, on this forum with it's skeptics and other worriers, and almost all with a different view, on our beloved former disease.

So time to get out of the house if you can. Riding an exercise bike sounds great, and I get the same numbness and (particularly) overheating, but I have worked my way up to half an hour on a recumbent elliptical machine. The heat and weakness subsides. It's temporary; brought on by effort in my case. So today I spent the afternoon playing with a scanner, scanning my old album covers. A lot of work, but a feeling of accomplishment.

I hope you can get lots of rest, that your body is successfully healing itself, and don't forget: healing takes time and rest. The nice thing is there is no limit to how much better you can get, except for some people EDSS 0 and no symptoms. But I'm 56. I don't expect miracles. Or the Spanish Inquisition. ;-)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2929
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby Drury » Thu Oct 28, 2010 10:29 am

1eye,

Was so good to hear that today - thankyou.

Drury
User avatar
Drury
Family Elder
 
Posts: 237
Joined: Sun Mar 28, 2010 3:00 pm

Postby Interrupted » Sat Oct 30, 2010 5:03 am

Drury wrote:Interrupted,

Wondering how you are?

Drury


Hi Drury,

I'm ok. Learning to cope with the new problems and constant fire in my legs, hands and feet. I've been making myself walk every day since I returned, at least 2 circuits of the fields next door, however long it takes or however much pain it causes. Amazing how the fire goes when walking to be replaced by extreme lead isn't it, lol not sure which I hate more. I did have this before mildly during obvious relapses but dealing with it being a constant is just taking a bit of time to adjust to. I'm going through ups and downs, the fall in my health is now rather obviously affecting my relationship with my other half who finds it hard to be around something he cannot fix, which is added pressure I did not need. But still, I know I have to stay positive about the future and look after myself as a priority now.

I updated the clinic a few days ago and they responded that it needs more time and observation of body behaviour in case the body is just adjusting. A fair point but in this case i'm pretty sure not what's going on.
They also pointed out that it could just be a relapse and nothing to do with the procedure at all. Again a point I had obviously thought of, but my experience of how my relapses happen -when they are actually identifiable- this doesn't really fit the mould as antural progression. And is about 3x more severe. Even if it is, it would be telling that it would happen at all after the surgery.
And then to keep them informed. Which is good, to know you're not being fobbed off. I whole heartedly agree with them, I need to wait, watch and see.

So that's about it at the mo', thanks for asking. I hope you are ok :)
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 208
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Postby Interrupted » Sat Oct 30, 2010 5:15 am

Hi 1eye,

1eye wrote:We need to face facts: if we're spending all available time and energy on the computer and the Internet, we all need to somehow 'get out of ourselves'...So time to get out of the house if you can. Riding an exercise bike sounds great, and I get the same numbness and (particularly) overheating, but I have worked my way up to half an hour on a recumbent elliptical machine. The heat and weakness subsides. It's temporary; brought on by effort in my case.

I whole heartedly agree. At this point i'm trying to do just something every day, no matter how small like going to the shop, just to get out of the house. And as mentioned in the above post I stick to walking. I tried actual cycling for 5 mins the other day but honestly it just felt like my legs were being torn apart, felt awful for the next day, and I think it was too much. Walking is safe at the moment, lol, because this could be one big relapse still going on I don't want to poke it with a stick - so to speak.
Interesting, though, that you say the weakness subsides for you if you push through it... how about lead legs or burning? Do they figure for you?



1eye wrote:I hope you can get lots of rest, that your body is successfully healing itself, and don't forget: healing takes time and rest. The nice thing is there is no limit to how much better you can get...

Getting enough rest has never been a problem! lol
I don't think my body is healing in the sense of problems righting themselves or the procedure having done any good, but i'm sure my neck is dealing with the remnants of inflammation by the feel of it.
I'm realistic when it comes to this, i've put my body through a lot having the procedure done, i'm paying the price a bit now, it hasn't worked but at the same time I have to deal with the fallout and try and restore some balance for healing in the sense of levelling out. And that means good healthy food, mild exercise, and trying to stay upbeat :D

Thank you for taking the time to post, much appreciated x
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 208
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service