Gibbledygook's Stents

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

Postby whyRwehere » Thu Mar 18, 2010 4:16 am

Ok, but be careful with yourself!
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Postby bluesky63 » Thu Mar 18, 2010 5:07 am

Wow -- you are a true pioneer! CCSVI, stents, and having a little one! :-) Well, many pregnant women get a lot of comfort from comparing their experience with other pregnant women and finding out that what they're going through is shared by others -- so I can imagine it would make you stressed beyond the norm to realize that there is no support group as yet of women exactly like you!

But somewhere there are probably women who have gone through similar experiences, and I wonder if you connected with a hospital or nurse you might be able to find a group of pregnant women who are dealing with MS, or with blood thinners, or vascular issues? It makes a mom-to-be feel so much better to have the support of other women and be able to share these questions and experiences. :-)

I wish you all the best success and the most wonderful outcome. :-)
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Postby Sharon » Thu Mar 18, 2010 7:25 am

Gibbs - I am so sorry to hear about all your troubles. I hope that Dr. D. is able to help you along.

Be well,
Sharon
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Postby gibbledygook » Thu Mar 18, 2010 11:24 am

Thks everyone. Another update in a month or so when hopefully there is higher blood pressure.
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 LR1234 » Thu Mar 18, 2010 12:29 pm

Hi GG, I totally believe your incredibly low blood pressure is causing you problems....I am suprised you are even awake with pressure that low. I hope the pressure goes up soon xx
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Postby gibbledygook » Fri Mar 19, 2010 5:13 am

Hi L,

This low blood pressure problem is a riveting new aspect. Some people with MS don't have low blood pressure, however. But I believe that they still suffer from hypoperfusion but from some other mechanism, maybe just vasoconstriction. Maybe I should have been eating salty, fatty food all those years instead of "healthy" low fat stuff!! I CAN'T wait to have higher blood pressure!!! I hate night spasms. It's a pity the inclined bed therapy doesn't seem to have made any difference... :cry:
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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blood pressure pregnancy

Postby jak7ham9 » Fri Mar 19, 2010 7:00 am

Hi GG. I always have had low blood pressure as have most ms persons i have researched This often remedies after liberatio. Have you rechecked for stenosis etc/? Also I actually had most of symptoms disappear during pregnancy with increased blood flow/pressure. Just thought might be something to check
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Postby gibbledygook » Mon Mar 22, 2010 9:44 am

Hi jak,

I'm worried about restenosis but can't test for it whilst pregnant but I have quite a lot of pain in the left stented area and a persistent headache in the left side of the brain so I will definitely be checking the stents are okay post partum.

I still strongly suspect low blood pressure. I can't find a useful PubMed extract on this matter but here's a brief overview of low blood pressure problems:

Generally, normal blood pressure of a person falls in the range of 90/60 mmHg to 120/80 mmHg. Low blood pressure is a condition in which the blood pressure of a person is lower than the normal BP levels. When the blood pressure is low, there is insufficient flow of blood in the body.


Low blood flow means low deliverance of oxygen and nutrients to vital organs such as the brain, heart, and kidney. In such a case, the first organ to malfunction is the brain. And when the blood pressure falls too low, all the organs of the body start malfunctioning and may get damaged permanently.
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 » Tue Mar 23, 2010 2:34 am

The other interesting aspect to pregnancy which the obstetrician mentioned was that the current thinking is that women have LESS blood flow to the brain during pregnancy. So all that extra blood women produce just gets shunted off to the uterus and the brain loses out! However I haven't found (or looked for) a PubMed citation to substantiate his claim. He is a famous professor of obstetrics so I'm currently taking his word for it. This reduction in flow to the brain might explain the typical bird-brain syndrome of pregnant women. This may further explain why I have felt substantially worse since almost the moment I became pregnant (plus drinking cacao). Women with MS only have benefit during the 3rd trimester. Interestingly this is when blood pressure normalizes. I have only a week to go! Yippee!!!!
I hope, jak7ham9, that with increased blood pressure such as you experienced my symptoms will likewise abate. I mean, for chrissakes, how can I still be conscious with a bp of 70 over 30?! I will be asking the obstetrician about dangerously low bp levels in pregnancy and in normal times. I bet that 70 over 30 is considered dangerously low unless one is pregnant.
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 hope410 » Tue Mar 23, 2010 3:30 am

Just curious - why can't you have an ultrasound on your stent area during pregnancy to see if re-stenosis has occurred that is causing your symptoms? I don't understand why this would be problematic.
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Postby gibbledygook » Tue Mar 23, 2010 4:07 am

In fact the dr who checked the stents after 3 months has suggested ultra sound so I may do that before the pregnancy is over. However I'm not sure ultrasound will catch everything. Particularly with a British doctor! I'd feel better if I had an appointment in Poland post-partum as they know what they're doing and I suspect I'll be wasting time and money on an ultrasound here in the UK.
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 hope410 » Tue Mar 23, 2010 4:15 am

I'm just surprised that you're not more concerned about stent migration and wanting to check asap to make sure everything is still in place.

I tried to look up what happens in pregnant women in the brain, but could only find assertions that the "brain fog" women experience during pregnancy was related to hormones. But I couldn't find anything more specific or exactly what happens to cause the brain shrinkage that results in forgetfulness, etc. Sorry.
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Postby gibbledygook » Tue Mar 23, 2010 5:23 am

Well, I AM worried about stent migration and I'm in discussion with Professor Dake about this but a very plausible explanation is low blood pressure as well. After all it's been about 8 months since the stents were placed and it would be a little unusual for them to migrate so long after the operation. What we do know is that my blood pressure has collapsed. And it seems like low blood pressure is a contributor to hypoperfusion. There is also not a whole lot that can be done if the stent has migrated whilst I am pregnant, I don't think. But I'm waiting to hear from the Prof...
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 » Tue Apr 13, 2010 2:37 am

Below is my latest update for Professor Dake at Stanford. Unfortunately I have suffered a minor relapse, I believe, since I developed a brand new symptom for a few days. I am having the stents scanned with ultrasound with a radiologist in the UK who is talking to Professor Dake since I continue to suffer neck pain around the left stented area and a cluster headache on the left side of the brain in the same location on a daily basis. This has been ongoing for 6 weeks. My blood pressure has finally begun to normalize in the last 2 weeks. Pregnancy has added a whole new layer of complexity to the stent story!

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.
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 LR1234 » Tue Apr 13, 2010 3:06 am

Thanks for the update GG, I am so sorry to hear of all your struggles.

You are the first lady to have had the CCSVI op with stents and then to get pregnant so you are a pioneer for all us female MSers who plan to have the procedure and get preggers.

I hope that your increase of worrying symptoms can be explained by the change of blood flow/blood pressure and the increased stress on the body during pregnancy.
A relapse in any form is not good news and maybe once you have had baby Gibbs the dr's can look to improve your circulation and blood flow through meds and maybe give some immunomod drugs to deal with the immune issues.

Thinking of you xxx
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