It's been 6 months since the operation at Stanford where 3 stents were placed in my jugulars; two 4cmx1cm in both jugulars and an additional 2cmx1cm in my left jugular.
The first 3 months were great and I noticed a significant improvement in bladder control and night spasms, the latter of which virtually disappeared. I also noticed and continue to notice a much reduced spasticity on standing in my worst affected leg. However I have also noticed that when I got a bladder infection the spasms and spasticity and bladder control problems reasserted themselves to a significant albeit temporary degree. I have also noticed that since becoming pregnant 3 months ago my symptoms have generally been somewhat worse, especially bowel and bladder control but also walking which has been harder from the very first week of pregnancy. I have also noticed a deterioration in symptoms with an existing cold/sinus infection which has been very flu like but without fever. In short, infections and that would include pregnancy (!) detract from the immense benefits which I enjoyed for the 3 months after stent surgery. Clearly, this may be down to raised core temperature but also perhaps the immune/inflammatory reactions that the CNS has been producing since I became ill with MS. I think that the immune response is still probably quite strong in the damaged areas of the brain/spine and so when one has an infection of any sort one's symptoms are aggravated. This is somewhat disappointing but shows perhaps that there is a combination of immune factors and vascular ones which drive the MS process. At least, I haven't got near to a relapse state and in the year before I had the operation, I had, at least 2 disabling relapses treated with steroids.
I think this is the diary you were looking for:
http://www.thisisms.com/ftopic-7515-day ... asc-0.html
Hopefully things level out for you once you have the baby.
best of luck!
Shortly after my latest excel update I stopped drinking up to 60mg of cacao a day and within days several symptoms which had been flaring up virtually disappeared, most noticeably the shoulder spasms, right hand tingling and the left leg motor dysfunction. I can still detect modest shoulder spasms and left leg motor dysfunction and possibly something in the right hand but the symptoms are much improved. I note that one pubmed abstract concludes that cacao under certain circumstances upregulates interferon gamma and Type 1 T helper cells. It also according to various PubMed abstracts lowers blood pressure and dilates the blood vessels and has anti-platelet activity. I don't need any of that, thanks. I'm back on cafe latte. From week 20 I started having very bad night spasms and akin in severity to before the stent operation. At the same time the left leg sensory deficit has been flaring a bit especially in both feet. So has the facial and torso deficit. I'm beginning to wonder about the correlation between extremely low blood pressure and worse MS symptoms. Cacao lowers one's blood pressure. Here are all my BP readings by the obstetrician: My blood pressure at week 12 was 98 over 58, at week 14 was 96/60, at week 16 was 80/40, at week 18 was 70/33, at week 21 was 70/40 and my latest at week 24 was 84/44. This looks like a period of very, very low blood pressure to me! I suspect such low blood pressure would cause cerebral hypoperfusion or insufficient endothelial shear stress and exacerbate my MS symptoms. I often think of my Chinese herbal practitioner who said I had "blood stasis". With my blood pressure readings I imagine that the blood is not flowing very quickly. I can feel my heart pounding at night as though it were struggling to get any circulation going. Fortunately blood pressure troughs in pregnancy at week 26 and apparently normalizes thereafter. My walking is poor and worse than it was before the stent operation and the spasticity is also much more evident. I just managed circa 500meters and it was a real struggle. The bladder control is unusual in that I need the toilet every time I stand but I don't feel urgency when seated. I expect the growing foetus is really the cause of my problems there. The phosphenes have been around but not much. Since reverting to coffee my bowel is somewhat better. My swallowing malcoordination is worse although much of it is likely psychosomatic. I had a nerve-racking moment in week 22 whilst at a meal I felt a sharp pain in the left stented area. About 10 minutes later I felt a sharp pain in the inner left ear area. I had a cold at the time and it could have been a lymph node being pressed by awkward jaw use. Or something else! I have asked Dr Reidy to book me in for a follow up CT scan of the jugular veins for July in case the vascular changes of pregnancy have done anything to the stents. I have also had trouble with swallowing which has been made worse by a cold. Since Christmas I have had a continuous nose bleed especially affecting the left nostril. In recent days the blood flow from the nosebleed has been particularly liquid and frequent. All in all this is not a good update as I am by and large as bad as or worse than I was before the stent operation.
I am now in week 28 of my pregnancy. I started at the beginning of week 25 of my pregnancy to get quite a bad headache in the left front of my head. I have not prior to the stent operation had headaches to any noticeable degree. I had quite a lot of severe headache immediately after the stent surgery which I'll take as the 100% at worst level. I also continued to have sharp pain in the left side of the neck behind the jaw, close to where the stents are. When I press the area I notice a sharp pain. I also have aching muscles in the left neck and shoulder area. The headache and neck pain have been present throughout week 25, 26, 27 and 28. I continued through week 25,26, 27 and 28 to have very bad night spasms which kept me awake sometimes until 4 or 5am. The spasms have been the worst that I have ever experienced with both legs suffering, whereas formerly mainly the right leg suffered. At the beginning of week 25 I developed a brand new but minor deficit affecting my left hand which had a mild twitch for about 3 days. A brand new deficit is a sign that I have had a relapse. My left arm seems quite a bit weaker as well when lifting weights but that could be the pain in the shoulder/neck. The nose bleed became less liquid during week 26 and resumed its post-December pattern of slow seepage through weeks 27 to 28. I wonder if the veins in my brain are as weak as the veins in my nose! At the beginning of week 27 my BP went up to 98 over 56. The left leg motor dysfunction is now only noticeable when exercising on the cross trainer and is mild. The spasticity is much like it was before the stent operation and the walking is worse. My right leg has been feeling colder than usual especially towards the foot. I think I must have had a mild relapse. The sensory deficit in the face/torso has been mild and now virtually absent. Likewise the sensory deficit in the left leg has been very unnoticeable. The phosphenes have appeared quite a bit on various days and then disappeared again. The shoulder spasms have been virtually absent. The swallowing has improved and the bowel is manageable. The bladder is behaving much as before.
He has told me to wait until the post-partum period for further assessment.The left stent is asymmetrically narrowed in an anterior-posterior plane---this is the usual or typical orientation of a narrowing seen in this location (high at C1-C2). The good news is the lumen or area encompassed by the stent is wide open on the left and the right side looks perfect.
So my other chief suspects for the relapse which must have started around week 20 of the pregnancy are heavy cacao consumption and very low blood pressure.
Here is my latest symptom update for Prof Dake:
My BP at the beginning of week 29 of the pregnancy was 90/46. I continued having intermittent cluster headaches in the left side at the same spot and with pain in the left of my neck close to the stents. My nose continued to bleed in week 29 but there seemed to be quite a bit less dried blood in my nose. The myoclonus continued in severity in week 29 with both legs suffering and my sleep severely disrupted. In week 30 the nose bleed continued but with less blood than before; I have had this now for 5 months. My blood pressure in wk 30 was 84/40. The myoclonus continued in severity with severely disrupted sleep. The pain in my neck became somewhat milder but the cluster headache remained strong. When I bend my neck to the right the cluster headache appears. At the end of week 30 I had 3 nights without myoclonus and I slept through till 7am or so and there were still no spasms in the am. Bliss. In week 31 the spasms returned to their former severity. The nose bleed remained but mainly in the left nostril. The headache became so severe I called my obstetrician. The walking was very poor and similar to relapse levels. In week 32 I noticed milder myoclonus. The nose bleed seemed to diminish. Walking remained hard. At the beginning of week 33 my BP was 94/44. I was prescribed thyroxine as my thyroid levels had become low. This almost immediately improved my aching legs and tiredness. In week 33 my myoclonus improved again and I started to get some regular sleep albeit interrupted by toilet trips. However I still had myoclonus during the day from time to time especially after being seated for a while. My nose bleed became very intermittent. My head ache remained but suddenly much milder. The walking improved. An old sensory deficit reappeared in my left leg for the first time in years. My right hand experienced a loss in motor function which may be an old symptom. Both disappeared in days.
The bowel has modestly improved. I haven't noticed much left leg motor dysfunction but I haven't attempted to walk very far. I haven't noticed any movement induced phosphenes in a while. The sensory deficits in the face and torso have been very quiet.
Looking back at the fairly severe deterioration in MS symptoms from around week 20, I notice that it coincided with pretty low blood pressure and 20 weeks of heavy cacao consumption, I wonder if both these might have worsened cerebral hypoperfusion and added to inflammation. I am never consuming cacao again! Ever. Sniff.
A bizarre thing I have noticed and didn't tell Dake is that I go to bed at around 9pm and the myoclonus starts up immediately but after voiding as much urine as possible the myoclonus becomes far less powerful. And by gone midnight when there is less fluid for the kidney/bladder to void the myoclonus is mild. mmm. I have been using inclined bed therapy for over a year.At week 34 my nosebleed at long last gave up the ghost and I had consecutive days without blood in my nose. The myoclonus continued with the same severity as before with a modest improvement from its at worst presentation. The sensory deficit in the left knee area reappeared and was also evident in the left thigh area. The headache remained in the same location and with the same severity as at the last update. The headache continues to appear on bending the neck. Towards the end of week 34 the nosebleed reappeared in highly liquid form for a few days. At the beginning of week 35 my blood pressure had collapsed back down to 70/30. Walking has been very difficult with very poor lift from the right foot. The motor dysfunction in the right hand reappeared as did the sensory deficit around the left knee. The right leg started feeling cold again. The headache felt worse. I had some bad nights of spasms. It feels like a renewed relapse. Later in week 35 my blood pressure was better at 90/52. That day I had virtually no headache. The myoclonus improved and I got good sleep. The motor dysfunction in the right leg felt a bit better. This was all on the first hot day of June. However for the rest of week 35 the cluster headache on the left side reappeared and myoclonus, sensory deficit etc seemed worse again. In week 36 the myoclonus was nearly as bad as during the recent relapse, as was the headache on the left side. I noticed more moment induced phophenes and a few more shoulder spasms. The area around the left stent seems sore once again. My blood pressure was back down to 73/30 on day 5 of week 36. In week 37 the nosebleed was no longer very evident but I had terrible tiredness and feeling faint so I guess I'm doomed to low blood pressure for the remaining weeks. The myoclonus varied from better to extremely bad. The bladder was in need of constant voiding at night and whenever I stand up. A full bladder makes walking and possibly the myoclonus much worse. As my bladder is now nearly always full my walking has been very poor. I have contacted Dr Simka in Poland to have the veins thoroughly checked once more as it seems plausible that I have stenosis elsewhere. The cluster headache on the left side continued to trouble me and is more evident when I press the left stented area and bend the neck forwards. In week 38 the myoclonus was particularly bad as was the walking and bladder. I use a wheelchair when in the hospital as my pick-up is now abysmal. There is still a small amount of blood seeping from the nose.
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
Arthur Antony Hubert Bates was born by C-section in week 38 on the 24th June 2010 and came in a good 8lbs and 2ounces and hit top marks on all the APGAR scores for new borns. Surprisingly he was the best weight baby of the week in the whole borough of Kensington and Chelsea. His hearing and eyesight are all okay. All in all he's made a great start.
Predictably the operation and post-operative drugs were pretty terrible for my MS symptoms. I was prescribed two painkillers which were great for knocking me out but not good for walking, bowel or bladder. I am now in week 4 after the c-section and my bladder control, bowel control and myoclonus are significantly improved but my walking is still worse than before the pregnancy. The bladder control is better than prior to the stent operation but not as good as immediately afterwards. The myoclonus or night spasms are much, much better than during the 2nd and 3rd terms of pregnancy and are amenable to stretching and walking to calm them down so are better than before the stent operation but not as good as immediately after the stent operation. My walking seems much better than during the immediate post-c-section weeks but is still quite poor compared to prior to the pregnancy and akin to levels seen during relapse. The walking does seem to be getting stronger by the day and yesterday I managed a very poor limp of about 400meters but I didn't stumble.
I still also suffer from the headache which affects the left side of my head and which started in the second term and which gets worse when I bend my neck forward. I also note that the back of my neck is now quite sore and this is in the muscle of the neck and extends up over the skull. All my other main symptoms are stable. I look forward to seeing Dr Simka in late October to see if there are any flow problems in the left side of my neck. I will forward any scans to you for your records.
I made a huge fuss throughout the pregnancy with the Professor of Obstetrics, Mark Johnson, about my blood pressure and he made sure that during the operation the effects of the spinal anaesthetic didn't affect my blood pressure to the downside too badly. All my blood pressure readings since the operation have been just over 100 over 80 or so. These are possibly the highest ever blood pressure readings in my whole life so maybe the blood is flowing through the brain a bit better finally.
Welcome to dear Arthur....a beautiful, healthy baby boy!
Oh, Alex--my heart is singing for you and your precious family today.
Please post pics and know that we're pulling for you, dear one.
dx dual jugular vein stenosis (CCSVI) 4/09
I have been following your progress these past months and am delighted that you now have little Alex - both of you safe and sound.
Thank you for your updates which are very much appreciated and I wish you continued improvements.
Congratulations to you and your family.
All the very best,