A (not so) simple question

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

Postby AMcG » Mon Dec 06, 2010 8:40 am

Hi

I am certainly not a doctor so this is only a layman's opinion but I don't trust what you were told about your transverse sinus'. I think most doctors assume there is enough redundancy built into your venous system to cope with some parts being blocked or narriowed. That may be true in general but I see no reason to assume that has to be true in all cases. Unless they have checked out all the veins draining your skull how can they know? Also even if overall drainage were adequate surely it is possible to have a local inadequacy were blood isn forced to take alternative and longer routes to exit the skull. Also in your case one transverse sinus looks almost completely missing and the jugular on the same side also seems to have a section misising.

I would try and get a second opinion if I was you.

I had my procedure done in Poland as it was not available in the UK at the time. It was very easy and really took no longer to go to Poland than if I had gone to London. I was v. happy with the treatment and the sonographer, Dr Kostecki is one of the best in the world but I have one quible. It does seem that the polish IRs don't adequately investigate the azygous vein. Many doctors find a high number of problems in the azygous vein but the polish doctors do not. So I have considered going to the clinic in Glasgow to have my azygous looked at again but as I said I can't afford it at the moment.

If nothing ultimately comes of your Lyme disease investigations I would definitely have a doppler examination. A good sonographer can assess your jugulars, vertebral veins and deep cerebral veins which is the best information available without being invasive. As I am sure you know this is not a foolproof procedure but if you are lucky it is very informative. It has to be better than just assuming all drainage problems are coped with by redundancy.
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Postby CindyCB » Mon Dec 06, 2010 9:56 am

AMcG,
Thanks for the reply.

It certainly gives me a lot to think about.

I was given my own DVD of the scans to take home before the follow up appointment with the neurosurgeon that ordered them and I had a good look at them myself as I wanted to see if I could spot something (not that I really knew what I was looking for at the time, I was trying to see if I had Chiari Malformation).

The NS made a special point of discussing that vein with me as he knows I am the type of patient to check all my own results (as I explained to him no one is helping me).

I do trust this particular doctor (he is a well respected Harley Street doctor, which I guess doen't mean much as his colleague, a NL was awful and messed up my lumbar puncture) but then they are only ever as good as the current research, which clearly is nowhere near where it should be for CCSVI as yet - and I guess it crosses into the unclear area of being vascular surgery rather than neurosurgery, which of course is not his area.

In terms of second opinion, he was my 3rd opinion already (but my first neurosurgeon, instead of a neurologist) but should I be looking for a vascular surgeon, another neurologist/neurosurgeon or going directly to a CCSVI specialist? (Pending Lyme results, of course).

I really wish my Bupa insurance would cover a consult with Essential Health but I can't see that being possible really!

CCSVI would certainly account for pretty much most of my symptoms, and also explains some strange problems I've had with other medications (and perhaps why a trial of 75mg a day of aspirin did go someway to helping my migraines).

A lot to think about for sure. Guess I'll be playing the lottery this week :roll:
Cindy
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby blossom » Mon Dec 06, 2010 10:48 am

cindycb, i am so called ppms. 1 lesion on cervical. no other brain lesions. this has been the same for nearly 20 yrs. i was tested for lymes and as testing is improving i plan on doing it again. i had the ccsvi treatment with no real positive out come. i hope to soon start chiropractic treatments once it is established what type of treatments are best for me. "then try to find a chiro. qualified to do this" which may not be easy.

i don't know if you have been reading uprightdoctor's thread "dr. flanagan" but it is very interesting and makes a lot of sence and blends with issues having to do with blood flow like ccsvi does. it is just another way of looking at it. there are people that had the ccsvi treatment and got little out of it and are seeing benefits from chiro. adj. check out happypoet's progress.

this is no way putting ccsvi down and i'll be keeping my eye on ccsvi. they are really gonna know more and even better ways as time goes on. but we are all so different and as you know pinpointing an exact cause of ms "multiple symptoms" is not really known and 1 treatment does not fit all. so, i wish you the best in "leaving no stone unturned" in your search for help. you are early on with this and time is on your side more than it is for some of us.
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Postby 1eye » Mon Dec 06, 2010 11:46 am

Cece wrote:
soapdiva884 wrote:
1eye wrote:If you have time, take it.


WHAT is this supposed to mean????

I understood it as advice to take her time and not rush into CCSVI treatment (because she is presumably early in her disease course and the docs have not yet standardized and perfected the treatment of CCSVI.)

1eye, sorry to answer for you, did I get it right?


Just so, Cece. I understand the impetus to find and fix. I followed that course for many years myself. To be honest, I think there was no one moment when I decided I could not wait any longer, for trials, and the fabled 'rough consensus', and maybe my GP, standards, etcetera. It was probably more like a dull itch that became a real sore spot, and eventually led to a feeling of running out of blood. On one particular day I realized my foot was paralyzed, and on another I realized i didn't have enough grip strength or speed for guitar. Other times it has been after a fall that I realized how little time I had left. The heart attack was another.

Like I have said, this is almost impossible to get across to someone to whom it has never happened. I don't want anybody to be more scared or nervous. I know that can definitely have a deleterious effect, as that also has happened to me along the way.

None of this may apply in your situation, as you may have Lime's but no MS. After seeing that video, I have more hope that somewhere there are civilized specialists with no particular axe to grind who might help you. I think if you find a helpful doctor like the man in the video seemed to have, you might conclude you need to be tested. If you are tested by a good doctor you might need a referral for venoplasty. If you don't have 'MS' it might not be as urgent, but I have no idea how bad Lime's is, or can get, or how quickly.

Neither neurologists nor my GPs, ever mentioned Lime's to me, and I don't even know if it exists around here. It follows the tick's habitat, doesn't it?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Kathyj08 » Mon Dec 06, 2010 1:23 pm

CindyCB,
I am one without a ms diagnosis but have CCSVI. I live in the US but traveled to Bulgaria this past summer to be tested and treated. By not having a diagnosis, I was having a hard time getting anywhere being tested and treated. Bulgaria agreed to see me. I had severe stenoses. (90% left , 75% right and 80% azygos, had balooning only)
I have re-stenosed (according to a doppler I had in New York) My symptoms are many but mild so I am waiting a bit before trying this again.
I definately have heard about the very tight neck and shoulder muscles when I have seen chiropractors. I am seeing an upper cervical chiro now and am seeing some improvements. It seems to have helped the migraines somewhat and have noticed a slight imrpovement with the balance also.
I have had lots of testing over the years. The last brain MRI mentions some spots but says its not typical of a demylenating disease.
This sure can be frustrating!
I have felt that it was ms for many years so thats why my husband and I decided to go the "CCSVI" route when the info. came to the states.
Feel free to pm me if you have any questions.
Kathy
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Postby CindyCB » Mon Dec 06, 2010 1:40 pm

1eye and Kathyj08,

Thank you both for your replies.

I think this is where my problem perhaps differs from some types of MS as such (as much as my understanding, which is at best limited) in that I have continual symptoms 24/7 in terms of depersonalisation (very bad), nerve pain from head to toe on my right side but also numbness with pain if that makes sense, very bad brain fog and cognitive problems and very bad fatigue.

This is more the reason I went down the Lyme route and not MS as I was told by all 3 neurologists I've seen that my symptoms are not consistent with MS. Nerve conductions studies do not show any problems - it's more of a problem with sensations and the muscles on that side fatigue very quickly.

Although I am sceptical about Lyme for myself as I don't suffer with joint pain or rashes which can be common.

I could easily see how CCSVI could be a problem for me though, given the deafness and tinnitus that worsen in different positions, dizziness, the constant pain in my neck and the tight, stiff muscles, it does seem to be localised to that region where a problem could occur.

I suppose that's not to say the cause might not be something underlying like Lyme disease as I have strange hard knots of muscles in my limbs (also on the right side) that a masseuse told me were very odd and unusual.

I was told to apply to the 'wait and see' approach by one doctor to see if perhaps it might develop into MS or something else but I bascially have no life as I have no depth perception and visual problems and with the depersonalistion I feel very odd all the time and can't be around people I don't trust. Plus the fatigue pretty much stops me from doing anything so I feel I have to keep searching for an answer.

Cindy
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby Kathyj08 » Mon Dec 06, 2010 2:12 pm

I also did fine on the nerve conduction studies. I would say my symptoms are 24/7 but they seem to travel. I might have a handful for a few hours and then the next several hours a bunch of different symptoms.
I have tinnitis pretty bad and when I lay on my right side I hear my heart pounding in my left ear so I end up flipping to the other side.
I did have loads of nerve (or muscle) twitches that have seemed to calm down quite a bit. They were from head to toe.
A strange symptom that I don't seem to read from other ms sufferers, is that pretty much any body parts go numb when pressure is placed on that part (even for a brief time) and then when the pressure is released the feelling comes back quickly. It's not the same feeling as when your arm goes to sleep when you lay on it too long. It's odd, it just sort of comes back without that tingling sensation that the "normal" person feels when a limb goes to sleep.
I get lots of wierd sensations. I have been tested for Lymes disease (years ago), Lupus, and was told maybe even chronic fatigue syndrome was a possibility.
I have trouble watching fast movement now, like a fast moving picture on tv or scrollling down a computer screen. It makes me feel like I am going to fall or like I am going cross-eyed. I could go on, but I think I will stop.
Good luck to you. I hope you get some answers!
Kathy
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Postby CindyCB » Mon Dec 06, 2010 2:37 pm

I do suffer with lots of numbness, I mainly refer to it being all down my right side, which seems to be there all the time (I could pretty much draw a line down the centre of my body) but it does travel to the left and seems to be more lately.

I've noticed when trying different medications it happens on the left too and things such as laying in bed, holding a book up to read will make both my hands go numb, like the blood can't push itself to anything that is raising up - sort of same thing with my head, I always feel better lying down although I toss and turn a lot in bed as I find my arms and legs go dead very quickly.

I wonder what on earth causes the vein to stenose. I know I have hypothyroidism and this gives vein problems, one collapsed in my hand a couple of years ago following a drip in that hand but I also always have trouble with blood tests, the veins 'hide' a lot. I wonder if being vitamin D deficient was sort of a double-whammy.

How about you, anything like that in terms of hormones or vitamins?
Cindy
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby Kathyj08 » Mon Dec 06, 2010 3:54 pm

I don't know where I stand on the vitamin D issue as I don't think that has been brought up. I have had lots a blood work done but it's been over a year since the last blood work up. I know I have some hormone issues though.
I have the same thing with the hands going numb. Again, it's a positional thing. If elbows are bent, the hands will go numb. I also have wierd scalp issues. When I lay on it at night when I wake up alot of the times the scalp will feel dead where I had been laying on it. A very strange thing, when I wake up at night if I have been laying on the back of my head or the left side of my face, my right eye has lack of feeling. It doesn't want to open for a minute or so. At first it was frightening, but now I wake up, try hard to get it to open and once it does I can go back to sleep.
My Neuro says when they list their findings, my main thing he calls positional parathesia. He says he does not see strong evidence of ms but I feel there are too many same symptoms and patterns over the years to not be ms.
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Postby CindyCB » Tue Dec 07, 2010 11:52 am

I think it would be worth having your vitamin D levels measured anyway, it's hard to get enough even if you live in a sunny climate.

I had been frightened by my symptoms for a long time but it does seem with supplementing vitamin D the pain is much less.

As it doesn't appear to be progressing beyond what it currently is right now then I am not scared by it - but I am scared that I will remain this way with no change or improvement.
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby 1eye » Thu Dec 09, 2010 10:04 am

Some would say that that is because Vitamin D is a kind of steroid, but if it works, don't knock it. The stage of whatever disease you have, if it is anything like mine, is fraught with urgent need to get to the nub, and fix the problem. I am used to the symptoms I still have, and though annoying it is nothing like the fright I got with each new one. I guess that is because we all get adjusted to whatever comes. I sympathize with those for whom new problems seem to come thick and fast.

I didn't realize how debilitating your symptoms were. I can only tell you, wrt pain, what a physio once told me: stay on top of the pain. Within reason, don't be afraid of painkillers. I get constipated with opioids, so I alternate between strong NSAIDs and them.

I have problems when I am lying down: twitching, spasms, etc. I figure it's positional, and has to do with changes in drainage.

Tell you something probably silly: you know those handheld vibrating thingies with four legs that feel like a vibrating finger massage? I use it on my neck: not hard, just enough to jiggle things up. It sometimes helps. Psychological, like the bar of soap? Maybe.

But something is related to heat. A warm shower paralyzes me.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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