Gibbledygook's Stents

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

Postby gibbledygook » Fri Jul 10, 2009 10:05 am

Ouch Loobie! That sounds much worse than mine which is a sort of tightening.

Okay I went back into DICOM and by chance managed to bring up better images. I don't know how AND I think I've saved them into jpeg format. The main problem is I'm only guessing that the big white band which leads from around the ear area is the jugular. It certainly felt close to the ear when the stent opened...

http://files.getdropbox.com/u/1507513/venous%20occlusion2.JPG[/img]

http://files.getdropbox.com/u/1507513/venous%20occlusion3.jpb.JPG

http://files.getdropbox.com/u/1507513/venous%20occlusion4.JPG

http://files.getdropbox.com/u/1507513/venous%20occlusion5.JPG

here's a piccy which gives a clue:
http://www.frca.co.uk/images/frca_img_ijv.gif
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Wed Jul 22, 2009 11:38 am

These are the last 2 emails which I have sent to Prof Dake.

22/7/09 my inr just won't go up.


Dear Professor Dake,

My INR reading today after a week on 10mg warfarin is 1.7. I will hear from my doctor tomorrow on how to proceed.

I have uploaded with the help of a locum doctor friend all of the scans you gave me onto the PAX system at University College London Hospital (UCLH). This is the same hospital network which treats me neurologically. I believe that the Pax system is available for any NHS doctor to use so this may help in our quest to find another doctor to do the follow-up venogram. I believe a doctor at UCLH called Simon Morley is a cerebrovascular specialist who might be interested.

My symptoms have been steady and I continue to enjoy much improved bladder control with hardly any urgency and a full bladder when I feel urgency. This has really changed my life for the better. I can now feel confident going out and about. I also still have scarcely had any night spasms since the operation and have not needed either tizanidine or baclofen. The spasticity in my right leg and foot is also less severe on standing and my walking has become a bit better than when I last reported although not as good as it seemed in America after the operation. I have also noticed that my bowel function seems to be getting more natural. In the last year I would frequently need manual assistance to void the bowel properly but I have not done so since the operation and in the last week things seem to be moving along much more normally. I have also noticed a big improvement in appetite and I am now sometimes hungry! I have also noticed that a sensory problem that would affect my chest and face when lying down to sleep has vanished. The burning sensation which used to affect my left leg and foot on an intermittent basis has remained quiescent. Even though I describe this burning sensation as intermittent, whilst the worst of the pain would come and go, nevertheless a considerable sensory disturbance remained. This now seems much quieter than before and less extensive in the area affected. The weather which usually has a huge effect on my MS symptoms has remained extremely damp and humid this last week.


15/7/09
My latest INR readings from today is 1.2. My doctor, David O’ Connell has told me to take 10mg a night for the next 6 nights and we’ll retest on Tuesday.

In the last week my shoulder pain has remained fairly steady at around 2 but worse when trying to lift heavier items or play the piano for more than a few minutes. I have not taken paracetemol/ibuprofen for at least a week.
I have had quite a lot of pain in my left ear, both the inner ear and the outer ear. My left cheekbone has also been intermittently painful. My head has ached in and around the left eye area with the same sort of pain that occurred immediately after the stent placement.
Yesterday whilst crunching a bowl of cereal I thought I could feel the stent in my left side moving about a bit and it occurred to me that my jaw was somehow touching the vein area. I wonder if I have the wrong bite or an outsized jawbone.

For about a week I’ve been feeling more tired. This seems to have started when the warfarin was increased.


My MS symptoms have been a bit up and down this last week. During a period of cool but humid weather in London with plenty of rain and mist, my walking seemed less good and I’ve been using my cane when venturing forth. My right foot doesn’t seem to pick up quite as well as it did for a while in America. However I still managed to stand throughout a recent half to three quarter hour lunch meeting which I would not have managed before. My bladder has remained very much better with far less urgency. I sat through a 2.5 hour meeting and then had another half hour or so at lunch standing and I still didn’t need the toilet. This was a solid suit occasion which in the past has meant, owing perhaps to heightened stress, a need for the toilet at least every hour. I can’t believe I managed the whole event without needing to go! I also remain blissfully night spasm free which means that I am getting to sleep much more easily and without drugs. Fantastic. In short I feel that my MS symptoms have gone about 4 steps forward, 1 step back since the treatment.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby cheerleader » Wed Jul 22, 2009 11:53 am

Thanks for the updates, Alex. Glad to hear of your improved bladder control and decreased spasticity. Wondering if the chewing is still an issue, or if it has resolved.

Jeff went in for a tune up yesterday, and his INR was 1.3 on 8mg coumadin. He's now at 10mg for another month, to keep his repair clear, and then will be DONE. That will be a happy day. I'm very curious as to why all you MSers have such a tough time getting your blood thin...

Good luck getting more docs on board!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby gibbledygook » Wed Jul 22, 2009 12:25 pm

I'm sure that our blood is more than usually full of coagulation factors owing to the many lesions and holes in the blood brain barrier. Hopefully with closed venular gaps, healing lesions and healing of stent wounds these will gradually abate. I reckon Jeff and I have quite large stent surface areas and wounds in the vein wall so in a sense it's not surprising. My body is probably thinking I've been gashed in the jugulars, or something. Alternatively we have hyper coaguable blood anyway. It would be interesting to test our blood for it's coaguability several months after the stents and lesions have healed up.

I haven't noticed any more jaw/stent interactions. One of my doctor friends is an obstetrician and I think he made me think rather a lot/too much about bone issues!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Wed Jul 22, 2009 3:11 pm

Good update Alex, mine would read very nearly identical. I love the reduced spasms at night too! it is really a great advantage and like you al also think with time this will add up to some more gains as deeper sleep and less medication can't help but be good news. My neck and ear do still bother me as well and I don't play piano but typing is my thing that remains limited.

Thanks for taking time to write out your current experience!

Coagulation wise I have had high thrombin and fibrin for some years, I am having thrombosis, in spite of the coumadin, in my calf.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Jamie » Wed Jul 22, 2009 3:38 pm

There's years and years of recovery yet chaps.
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Postby gibbledygook » Fri Jul 31, 2009 3:14 am

I saw my neurologist at the NHS on Wednesday and he said that he was quite cross with me for going off to Stanford but that he had read the papers by Zamboni and found them to be of a high quality. He remains skeptical however. He was nevertheless very smiley and friendly. On testing my neuro responses he said that I had very little residual disability from the last 4 attacks which occurred since mid 2007. He arranged for the MRIs to be done and agreed to look at the Stanford scans with a vascular specialist. In fact he suggested that he look at the scans with a vascular specialist. Amazing!!

The following was my latest update for Prof Dake:

My 5th INR reading has just come back at 1.9. I am going to do another 6 days of 10mg warfarin and then retest.

My MS symptoms have remained stable since my last report with a more definite improvement in bowel function which is responding much more to the magnesium citrate than before. My energy levels have impressed a film team who have been filming me on and off since a relapse in early 2008. “Completely different” was their comment. Indeed I do seem to have more energy since I felt a bit tired a few weeks ago around the time the warfarin was first increased. The sensory deficit in the left foot also seems much milder with less of the odd bubbling/burning sensations; a much quieter sensation. My walking ability and right leg and foot motor dysfunction remain stable. The bladder improvements and new freedom from night spasms remain.

Last night I had one glass of wine and I needed the toilet at about 3am. This is the first time I've needed the toilet in the middle of the night for a while but I think the wine may have been a little irritating to the bladder...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Sat Aug 08, 2009 6:32 am

My latest email to Prof Dake;

I have finally made it to level 2.0 on the INR front. I am to continue taking 10mg warfarin.

I have rather forgotten to update you on the pain in my shoulders which is still quite persistent especially if I play the piano. I guess the pain is only about 1.5 or so intermittently but it’s still there. I also very occasionally have pain around the head but this is short and sharp.

My MS symptoms have been relatively stable. I have suffered a few night spasms but these have been mild, needed no medication and have occurred after consumption of alcohol which is often how they have appeared in the past. My bladder has been generally the same as previously reported as is the right leg motor function and bowel and left leg sensory deficit. Something which I haven’t previously noted is that I think that the spasticity which wracked the right hand side of my body at the lightest touch when lying down is much improved; the torso and right arm no longer seem to go rigid or at least not nearly as rigid as before. I seem to be able to control the rigidity or spasticity in my right leg as well. Additionally a tremor that would shoot through my left shoulder is much milder. The weather recently has been very humid and I dare say that this is still affecting my symptoms although I don’t really notice the humidity so much. I have been walking much more quickly almost at a normal pace whenever out. I expect that this doesn’t help in my quest to walk a greater length than my previous MS record of 1.1km but it certainly makes me feel less disabled.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Sat Aug 08, 2009 7:49 am

Hi Alex good news on the spasms, me too. NO baclfoen or requip at all. I still have an occassional, even rare, spasm but it is less than what I was having even when taking the meds. feels good doesn't it? I absolutely abhor spasms. I know a lady who did herself in over spasms and I actually understood that!!

I notice these things are starting to feel normal....

my neck keeps feeling better slowly, hopefully soon you will be able to play the piano easily.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby gibbledygook » Sat Aug 08, 2009 8:01 am

The relief from spasms is definitely a major plus. I can't remember the number of times I've been awake till about 3 or 4am waiting for the baclofen to work...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Sat Aug 08, 2009 8:41 am

waiting for baclofen to work


Lord, me too! gone. Really gone. :D :D :D :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Sun Aug 09, 2009 8:27 am

Alex-
Thanks for the update. Slow but steady.... Relief from spasms has been a huge one for Jeff, too. As far a playing piano, that took awhile to feel OK for him...probably 8 weeks, but it's fine now at 3 months. He thought it was from supporting the weight of the arms outstretched w/the shoulder muscles. Are you coming back over for a checkup, or are you with a vascular doc at home?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby gibbledygook » Mon Aug 10, 2009 11:28 am

Hi Cheereo!

I would so LOVE to go back to America but I'm trying to get a doctor over here to have a look. This is however proving quite tricky. I have managed to get a scan done, however I'm still having to send the scans to Prof Dake for interpretation as the doctor here clearly isn't familiar with this procedure. However he may be happy taking instruction or guidance from Prof Dake. I'm just in waiting mode at the moment!
It is maddening for others in the UK that this is so slow and also so dependent on the skill of the radiologist/vascular specialist...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby ErikaSlovakia » Tue Aug 11, 2009 12:12 am

gibbledygook wrote:Hi Cheereo!
It is maddening for others in the UK that this is so slow and also so dependent on the skill of the radiologist/vascular specialist...

Hi, Dr. Simka sent me an email about this congress of vascular specialists in Monaco: <shortened url>
He also wrote me that the Slovak prof. Dr. Stvrtinova. Ph.D. will be there. I go to her hospital tomorrow.
May be it helps and you find there somebody from England. Dr. Simka will be also in Monaco. It is soon.
Good luck!
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Postby gibbledygook » Tue Aug 11, 2009 5:12 am

Thanks Erika,

I shall have a look through the attendees and maybe barrage them if the contact of Dake's can't help.

On a disappointing note, last night I suffered from bad spasms and needed zanaflex to get to sleep much later than I wanted and today I am quite tired. I also suffered spasms though milder on Sunday night. I pray that all my symptoms aren't coming back!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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