Gibbledygook's Stents

LR1234 · Post by **LR1234** » Sun Sep 20, 2009 3:55 am

Hey Gibbs,
Good to hear from you. (wierdly, I had just FB'd you)
I am sorry to hear about the infection, you sound like you have the same sh*t luck as me...just when you think things could be changing for the better something else comes along and knocks you down. I hope that the abx do the trick and that you feel better soon.
Did you end up having the MRI scan?

x

gibbledygook · Post by **gibbledygook** » Sun Sep 20, 2009 4:07 am

Hi L,

Yes, the NHS paid for the scan, which is a first for me. So the results will go into the NHS database along with Dake's scans. I discuss the results of them tomorrow with Dr Kapoor. I don't expect any changes on the scans as there were 2 months between the operation and the scan. Is that really long enough to see something different in the brain?!

Fortunately the antibiotic may be nasty but effective and the cystitis seems fully recovered now, finally. That was quite a bad infection which has lasted over a week. I think I now need a week or two before updating Dake as infections still obscure the underlying state of play.

LR1234 · Post by **LR1234** » Sun Sep 20, 2009 4:12 am

For sure. Send my love to DK! I have been chatting with him quite a lot about everything recently, hopefully you will have an interesting consultation with him. Fingers crossed anyway for changes on the MRI (we need all the positives we can get)

L

gibbledygook · Post by **gibbledygook** » Tue Sep 22, 2009 4:46 am

Well, I wonder if I've got a skydog thing going on as well. Last week I got cystitis and have been on a terrible antibiotic, trimethoprim, up till yesterday. The whole week has seen a significant deterioration in symptoms. If that wasn't bad enough my latest MRI scans from 2 months post op show a new enhancing lesion. Here's my latest update for Prof Dake:

Dear Professor Dake,

I have finally extracted the promised CD of my latest MRI scan from the NHS and will have sent it via DHL by Wednesday 23rd September. It should arrive within a few days.

I met with my neurologist, Dr Kapoor, who has requested the formal reports from the follow up venogram done. Could you send this to me as I only got scans from London Bridge Hospital?

Unfortunately the MRI scans of my brain and spinal cord of the 1st September reveal a new enhancing lesion. Here is a copy of the radiologist’s report:

Report:
Comparison is made to the previous study dated 22/06/2009
Brain:
The sequences acquired in the two studies is [sic] slightly different. Allowing for this, there is a definite new lesion in the right parietal white matter that demonstrates faint rim enhancement, consistent with more recent inflammation.
A further non-enhancing lesion that was not apparent on the previous study, is shown in the right middle cerebellar peduncle. However, given the location and lack of a T2 sequence previously, this may simply reflect technical differences.
The remaining intracranial appearances are similar as the study from June 20009.
Spine:
Unfortunately, the image sequences are not directly comparable.
There are several foci of intramedullary signal change along the cervical and upper thoracic spinal cord, consistent with demyelinating plaques. No pathological enhancement is demonstrated.
A background of early cervical spondylosis is noted. The spinal cord and neural exit foramina remain adequate in calibre and there is no evidence of neural compression.
Dr. Caroline Micallef

Dr Kapoor thought that the disease was likely still active and that I should consider treatment with Avonex. He did say that the lesion could have developed at the time of the operation as they can take that long to develop. I wonder if the lesion developed as a result of those broccoli sprout pills which clearly have pro-apoptotic effect and certainly brought the night spasms back to life. Or perhaps there is stenosis elsewhere in the system.

Here is an update of my previous symptom update email. I’ll try to update this every month or so. I’ve had a bad last week, I believe owing to an antibiotic for a bladder infection, trimethoprim.

If my symptoms at worst have been 100% which would be an EDSS of 6.5, these are my percentages now:

My bowel function is still fairly sluggish and although I thought I noticed an improvement earlier it was too fleeting to note a convincing change. So my bowel is now about 100% of its at worst presentation.

I have recently suffered from a week of cystitis and so my bladder control has been poor with quite a lot of night time disturbances. However the antibiotic seems to have helped and I am about 70% of at worst presentation. Immediately prior to the operation my bladder was 100% ie at worst.

The stiffness and spasticity has been much worse since the beginning of this week and the cystitis infection. I am struggling to walk as the right foot is very inflexible at present. Standing up is as nearly as stiff as at its worst. The spasticity is about 90% of where it was. Immediately prior to the operation the spasticity was 90%.

This last week the night spasms have made a vigorous comeback and they were particularly disturbing the night I started the trimethoprim so that I got to sleep about 4am. They are back to 100% of at worst. Prior to the operation the spasms were at 100%. The shoulder spasms have been quiet and are still only about 10% of their worst presentation. Immediately prior to the operation, these spasms were at 100% or at worst.

My movement induced phosphenes have been more frequent and I would say that they are about 50% of their at worst presentation. Immediately prior to the operation these were at perhaps 60%.

The sensory deficit in my left leg has changed somewhat for the worse in that after walking I’m getting quite a lot tingling around the left knee and thigh. This used to occur quite a bit when the illness was at worst. However the nighttime sensory deficit in the leg is still quite quiet. I would think that I’m about 60% of at worst. Immediately before the operation this deficit was at about 70% of worst.

The sensory deficit which has in the past affected my face and upper torso has also been more active and is perhaps at about 50% of its at worst presentation. Immediately prior to the operation this symptom wasn’t at its very worst so maybe before the op I was at 60%.
This symptom was a relatively new symptom.

The sensory deficit which has affected my right hand has been static. Overall the hand is about 50% of its worst presentation. Immediately prior to the operation this symptom was also at about 50% of its worst moments.

I’ve had a swallowing incident in that I choked on some water about a week ago. I hadn’t done this in a while but may have been something to do with trying to drink 1.5 litres of water around breakfast time. As I usually only have a cup or two of coffee this was quite a task and may have exhausted my swallowing coordination. Prior to the operation this symptom wasn’t strong. Over the last year it’s been in the region of 30% of the worst which occurred in the earliest stages of my illness. I guess having the choking incident would put the symptom back up to about 20% of at worst presentation.

My walking has felt very much worse as I’ve really struggled these last few days on trimethoprim. I would say my walking is now at about 80% of its at worst presentation. Immediately prior to the operation my walking was maybe at 60% of its at worst presentation.

As you can see I have had quite a deterioration in symptoms but I strongly believe that the trimethoprim is to blame. Yesterday I had only one pill in the am and had no spasms at night and today my walking has been a bit better but still much worse than before I started this antibiotic.

I am never taking broccoli sprout tablets or trimethoprim again!

MaggieMae · Post by **MaggieMae** » Tue Sep 22, 2009 5:47 am

Hope you soon feel stronger. Sorry to hear things aren't going that great for you right now.

LR1234 · Post by **LR1234** » Tue Sep 22, 2009 6:28 am

I am so sorry A, that is not good news at all:( Maybe there is another stenosis somewhere in your system or maybe the immune system continues react even after the procedure:(

mrhodes40 · Post by **mrhodes40** » Tue Sep 22, 2009 6:39 am

I am sorry Alex, I hope you can find out if you have a restenosis or if rather it is a left over of some kind. This is in process, not a known thing obviously, but what a bummer for you.

I know Dr Simka is concerned about already activated microglia and leukocytes being still in the system and possible ongoing issues... we'll find out of course as time goes on.

I still feel that those of us who took the chance and who stepped up for this work did a service not only for ourselves but also for everyone else. Every time something like this happens they learn more.

pm coming...........

cheerleader · Post by **cheerleader** » Tue Sep 22, 2009 6:47 am

Oh, Alex...
What a disappointment for you. I really hope the docs can work together and figure out what's going on-since your stents and bloodflow looked good last month. Hang in there, and know there's lots of energy and good thoughts going out to you. There's still so much to learn, and you are a courageous gal for trying this procedure-hang in there and keep in touch,
cheer

gibbledygook · Post by **gibbledygook** » Tue Sep 22, 2009 6:57 am

Thanks everyone. My guess is that I have both restenosis somewhere but not visible on the follow-up venogram and inflammatory issues. The improvements immediately after the operation were so great it's a big let-down to see the symptoms return.

Loobie · Post by **Loobie** » Tue Sep 22, 2009 7:24 am

My heart goes out to you Alex.

radar22 · Post by **radar22** » Tue Sep 22, 2009 7:26 am

Just wanted to know that I'm hoping for good things to come from this at some point.
Hang in there!!

gibbledygook · Post by **gibbledygook** » Tue Sep 22, 2009 7:38 am

Thks Loobie and radar, I'm sure that this is a major part of the equation but we're still at the very early stages.
I also see that I have a temperature today of 37.5 so that's probably not helping much with my walking etc!

Arcee · Post by **Arcee** » Tue Sep 22, 2009 9:59 am

Uggh. Sorry to hear about these challenges you are facing. I hope that there is some comfort in knowing there are sharp doctors working on it, and many of us wishing you the best.

daniel · Post by **daniel** » Tue Sep 22, 2009 4:58 pm

Sorry to hear about your setback Alex, I hope you're feeling better soon and are on your way to continuing along with your recovery very shortly

Jamie · Post by **Jamie** » Tue Sep 22, 2009 9:47 pm

It's a long road Alex I'm sorry.

Keep on trucking and I know you will - your temp, and general malaise won't help you - some took a long time to get back, I know that's not what you want to hear and really only Jeff is 4 months out. Try and read up on the Zamboni patients to keep your spirits up!

Best wishes from Houston!

Jamie & Mel

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Gibbledygook's Stents

Disappointing news