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 Drury » Sat Oct 30, 2010 4:09 pm

Interrupted,

I really admire your courage and I truly hope and pray that you will get better and start to feel more like your old self soon.

Thank you for taking the time to keep us updated- you sound really upbeat in spite of it all.

Drury
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Postby Interrupted » Tue Nov 02, 2010 1:57 pm

3 Weeks Update: No improvement, still getting worse in some ways, others not quite so bad in true MS/CFS "one forward 5 back" form. My vision in terms of nerve tetchiness, colour distortions, and light intolerance has actually become painful and the exhaustion unbearable, only I have to bear it because I don't have the energy to fight back, lol. So for anyone reading, this is 50% CFS at play thus not as alarming as it might sound. I'm spending most of my time currently in a zombie state on the sofa, muscles and brain not interacting, hormones swinging from fine one second to just wanting to cry and cry the next, pain and fire in most limbs, unable to focus my eyes for more than a few seconds at a time, not having the energy to talk or string sentences together properly. Horrible sense of doom hanging over me still (man I hate that!) that I know comes from such severe exhaustion. The worst thing in a way if this constant feeling that i'm going to pass out when I try and do anything, a bit like I feel i'm going to have a heart attack - I know I won't, it's just a feeling that i've long recognised but comes as lot stronger and longer at the moment.

Yet i'm still doing the walking. Every day morning and early evening and I will not cave. I know full well how important it is to keep moving through an MS attack that's hitting the legs. I haven't burst into tears yet through sheer stubborness but I can feel it coming, I have not felt this low and ill for a long long time. I have no idea what state my veins are in, i'm guessing they restenosed + a little bit extra because that's where my health is at in alignment.
I still notice sometimes, though, this funny full and heavy feeling in my jugulars after i've exercised sometimes. Takes a short while to dissipate, odd sensation.

Not sure what to do all round really, thought about seeing the neurologist to talk about my eyes, lucidity, and the derealisation that's driving me nuts but not sure I can take being fobbed off again without GBH ensuing :roll: I'll think on it.

Please remember that I am not a normal case so don't base your decision(s) on treatment on anything I have said. I have overwhelming Chronic Fatigue as well as MS and I believe this to be playing a large part in my experience so far. I do not regret having tried the procedure.
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.
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Postby vivavie » Tue Nov 02, 2010 2:52 pm

I am sincerely sorry for you... I really do understand how you feel. I experienced exactly the same thing after my procedure in Aug. My IR did not believe me but I pushed and he did another veno after 1 month. My LIJ had collapsed and a very big complexe collateral system had developped!

Fatigue and pain were always my worst symtoms but it got even worse. I don't want to scare you but for some 3 months after was too late. For me even after they put stents the blood flow continued to prefer the collateral system. I am not saying to have stents, actually I would have prefered to have angio again with bigger balloons before resolving to have stents. BUT I WAS NOT ASKED! I was faced with a done deal! Anyway after 1 month on Coumadin an ultrasound showed good flow through the stent. I was lucky, I wish the same for you.

Fatigue can't be measured by a test, it is very frustrating to get the docs to trust us when we DO know something is wrong.

Courage! I know it is hard to fight when we feel so low!!!
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Postby Interrupted » Tue Nov 02, 2010 6:38 pm

vivavie wrote:... but I pushed and he did another veno after 1 month. My LIJ had collapsed and a very big complexe collateral system had developped!


Bearing in mind I have to go back to Poland, do you think I should push for a rescan in another week then? They have told me to wait it out. Hmm, that's put the cat amongst the pigeons, lol :roll:

I honestly feel there's little point going elsewhere because tbh in my experience, if you go somewhere different, you get completely different results and more confused. I kinda feel like I have a baseline with this from a clinic that's been doing the procedure for the longest time and I should stick with it.
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.
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Postby drsclafani » Tue Nov 02, 2010 10:11 pm

Interrupted wrote:
newveins wrote:I was sore and a little stiff for several weeks but not swollen.


Ok thank you newveins. Means I need to keep an eye on the swollen feeling, and only worry if it becomes obvious to the touch. I have emailed the clinic now anyhow, better safe etc.

Thank you though, you are the first person I have come across to have felt any soreness apres procedure at all! Which is why it's been concerning me a bit xx


get an ultrasound of your neck
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Postby Interrupted » Wed Nov 03, 2010 5:49 am

By coincidence, this morning I got an email from Essential Health in Glasgow offering me scanning and diagnosis. Forgot to tell them I had been to Poland obviously. :oops:

So i've booked in for a doppler there on the 16th November, and feel a little relieved to be able to do something proactive about it. Having a doppler somewhere new yet again is not ideal but tbh i'll take anything right now to find out what's going on. Just got to get through another week! Right now i'm nervously crossing everything that there's no collapsing or clotting at play :roll:

Thank you everyone for your kind words of advice, without community support such as this, this would be a lot more frightening and isolating when things go awry xoxo
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.
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Postby Cece » Wed Nov 03, 2010 8:50 am

Interrupted wrote:So i've booked in for a doppler there on the 16th November, and feel a little relieved to be able to do something proactive about it.

Fantastic news. I am relieved for you too.
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Postby Drury » Wed Nov 03, 2010 4:17 pm

Interrupted,

Good luck with the doppler. - how does that compare with an ultrasound of the neck as Dr. S prescribed?

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Postby Drury » Wed Nov 03, 2010 8:13 pm

Ignore that question as I was not thinking they are one and the same thing.

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Postby Interrupted » Thu Nov 04, 2010 6:27 am

Thanks Drury, biding my time now until then :-)
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.
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Postby Interrupted » Wed Nov 17, 2010 2:13 pm

5 Weeks After Procedure: (& day after 3rd Doppler scan)

Still worse after procedure, so no good news or joy there i'm afraid. Confident now to say that for me it was a failure with no improvement, even briefly. :roll:

So because of this I took Dr Sclafani and a few other people's advice and booked in at Essential Health, Glasgow for a doppler scan to find out what has happened or could be the cause of the worsening. I did inform them I had already had the procedure.
As expected when I got there having paid £450 plus return air fares for the pleasure, they weren't aware I had already had the procedure. Call me a cynic but I somehow knew they wouldn't, no matter how many times I informed them over the phone. It's really quite sad that my expectations of companies has become so low even on the littlest matter and yet almost always prove to be true!

The verdict: The man that scanned me was very thorough and took a lot more time than either the lady in Ireland or Dr Simka did. The verdict was that he thinks my problem is actually in the lower valves both sides. He believes one side isn't working and the other is malformed. He didn't voice any concern over anything else. If i'm honest thought ok...
"3 scans. 3 completely different results. All either by Simka or someone trained by him. One procedure that has made things worse. About seven thousand (borrowed) pounds lighter in total so far that i'll spend the rest of what life I have left paying back. I have lost faith in this."

I'm sorry, but I have. Those tests should have replicated or been similar somewhere along the road but they were not in the slightest. I will forward the results to Poland to see what they have to suggest/say but to be honest I will not take any action for further procedures for a good few years of improvement and research on the subject, I totally do not trust a word anyone has to say any more. I'm so glad for all those doing well but i'm one big advert for warning about the flipside that people should consider. If you think you have nothing to lose, you might find that you do, physically AND financially.

I'll stay fighting this and researching new ideas/protocols/treatments etc and definitely do my best to stay cheery in the main but I just had to say the above because I feel it should be said as I know i'm not alone in feeling this way. Best of health possible to you all 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.
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ccsvi

Postby blossom » Wed Nov 17, 2010 3:26 pm

oh, interrupted i hate to hear this news. in your words, we can feel your despair. i can relate to what you are saying but not to the degree of what you have been through. although all of us want the good results and there are a lot. what you had to say has to be told too. hopefully soon there will be enough known that we all will benefit.

in the meantime do as you plan and look into other things. for sure it seems we all are different and should be looked at more individually.

thanks for letting your story be known.
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Postby burg » Wed Nov 17, 2010 3:57 pm

Hi Interrupted:
I understand your frustration. I had the procedure twice. First in Bulgaria, and actually was much better. No cane, balance much better, improved sleep, less pain, etc. It all went away after a month.
Did a second time in upstate NY. No help at all. Nothing...Nada
But..I know what it was like to be well, like 15 years ago, and I want to be there again. I'll do anything, including doing it a third time which I hope to soon.
I'm sorry about how yours worked out, but maybe the Doc missed something.
It's expensive, and time consuming, but I feel that one thing about people with MS. We don't ever give up!
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Postby Cece » Wed Nov 17, 2010 4:15 pm

Interrupted wrote:The verdict: The man that scanned me was very thorough and took a lot more time than either the lady in Ireland or Dr Simka did. The verdict was that he thinks my problem is actually in the lower valves both sides. He believes one side isn't working and the other is malformed. He didn't voice any concern over anything else.

Am I understanding this right: your first doctor did not treat the lower valves (in the jugular near where it merges with subclavian?), what did he treat then? Higher in the jugulars?

For 7,000 pounds you got a procedure that missed the nonworking valves and the malformed valve.

:evil: :cry:
If you think you have nothing to lose, you might find that you do, physically AND financially.

This is well said. Especially at this beginning point where different docs do different things with different outcomes, on pwMS with different degrees of starting disability.

Sorry it has turned out this way. Absolutely if you have to get off the merry-go-round and waiting this out, that is a reasonable choice. I'll be interested in what you hear back from Dr. Simka if you care to share it.
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Postby Drury » Wed Nov 17, 2010 4:53 pm

Interrupted,

What a nightmare for you!! I second what Blossom said and feel so badly for what you have had to go through. The saddest part being that you have not had any relief from the treatment and follow-ups and Essential Health not having made a note that you already had treatment is unacceptable but all too familiar I am afraid. I just hope you were able to let them know how you felt!

You are so brave to have gone ahead with this treatment in the first place. It is worrying that the tests results have all been different and highlights the need for doctors to have a unified treatment protocol and We know that this is a very new procedure and the outcome uncertain. I can only thank you for being a pioneer, giving us the good, bad and ugly - just wish you had been one of the lucky ones.

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