New from the UK

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New from the UK

Postby trudibee » Thu Jun 07, 2007 6:27 am

Hallo All
I am glad to have found you. I have syrinxes in cervico-thoracic and lumbar area(both thin), hydrocephalus with a VP shunt,hypermobile joints,small area of focal adhesive arachnoiditis lumbar area.

I have a lot of eye symptoms: Blurry vision in the morning, halo's around lights,change of acuity at different times of the day, floaters,visio-spatial integration problems(intermittently). Anyone else who can relate?

Another problem is my tummy (progressive distention over days with constipation/then diarrhoea. I've been told I have small bowel adhesions (have had 11 shunt revisions in as many years so enough reason to have adhesions.)But I also get terrific stabbing pains in the are under my ribs or lower abdo. These seem to go with the times when my neck pain is worst.

Lastly: Any advice about breaststroke swimming---good for you or not?

Wishing you a good day
Trudi
trudibee
 

Postby Ryzing » Thu Jun 07, 2007 7:25 am

Hi Trudi, and welcome...

I don't have any of the symptoms you do, but I do a lot of swimming in the summer since our family has a pool - but I do it in moderation. Breaststroke? Yes, but if I start to get weak, I quit right away. As soon as my arms give out, I stop and just float on a raft.

Hope that helps!

Diane
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby ocset1 » Thu Jun 07, 2007 4:33 pm

Hi Trudi
Welcome to the site.

I too am from England the south east. I have only recently started writing on this forum and find it very useful.

I have a syrinx in my thorasic spine and a ruptured disc above it. I am very lucky so far as I have very little pain but several other symptoms.

I am only recently diagnoised and still having tests,

Where were/are you treated have you found much knowlegde about your condition?

Once again welcome

Regards

AJ :)
ocset1
 

Postby mac » Thu Jun 07, 2007 6:31 pm

Hi Trudi and welcome!

Dr Batzdorf at UCLA told me NO breaststroke! That it is a position which hyperextends your neck!! And that is true if you think about it, you are craning your neck to keep your head out of the water. Batzdorf told me only side stroke with swimming. No crawl...etc. So, anyway, thought I'd throw that in because I did have an answer from an expert on that one.

once again, welcome!

mac
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Re: New from the UK

Postby meregis » Thu Jun 07, 2007 8:03 pm

[so pleased you found this site. There are a good bunch of Americans :twisted: please no comeback. You're very lucky to have all this information about what's wrong with you. I knew nothing until recently, what was done to me. I have SM. CM I had my decompression operation at the Royal neurological Hospital,, Queen Square London. I now live in Spain. I am under a Spanish neurosurgeon I'm having wonderful treatment. No waiting of any great length of time, all under national health. I've just found out. Nothing was done to my syrinx from my neck down to the bottom of my shoulder blades[ it's quite thin.] He has a range another MRI from the top of my head to the bottom of my spine, also I'm going to a sleep clinic. I'm having far better treatment in Spain than I ever had in England he did highly praises the operation I had done in England for CM
wishing you lots of pain free days Mary


and I am glad to have found you. I have syrinxes in cervico-thoracic and lumbar area(both thin), hydrocephalus with a VP shunt,hypermobile joints,small area of focal adhesive arachnoiditis lumbar area.

I have a lot of eye symptoms: Blurry vision in the morning, halo's around lights,change of acuity at different times of the day, floaters,visio-spatial integration problems(intermittently). Anyone else who can relate?

Another problem is my tummy (progressive distention over days with constipation/then diarrhoea. I've been told I have small bowel adhesions (have had 11 shunt revisions in as many years so enough reason to have adhesions.)But I also get terrific stabbing pains in the are under my ribs or lower abdo. These seem to go with the times when my neck pain is worst.

Lastly: Any advice about breaststroke swimming---good for you or not?

Wishing you a good day
Trudi[/quote]
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Postby Ryzing » Fri Jun 08, 2007 8:29 am

Shouldn't we all be consulting our own doctors on what we can and cannot do? Aren't we all different? I know for myself, when I first found out I had SM, right away, I asked my NL what I could and couldn't do in my particular instance.

Trudi - always consult your doctor. He knows you best and you know yourself best.
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
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Postby mac » Fri Jun 08, 2007 6:26 pm

Trudibee asked a good question about the breaststroke...and we all do not have doctors who understand these rare situations, that is why we get so much from a peer message board.

I remember very often SarahinParadise (golly we miss her!) telling us how much we need to avoid hyperflexion or extension of our neck areas, at least those with cervical issues and/or CM, hydrocephalus, etc.

And yep, asking your doctor is also good advice. But it's okay to ask here too, might give you some ideas on what to discuss with your doctor

mac
mac
 

Doctors do not always know

Postby trudibee » Sat Jun 09, 2007 1:51 pm

Thanks for all who have replied !

I tried out my own experiment this week and went swimming--yes, my favourite is breaststroke--and have since had a week of struggling with worse neck and shoulder pain and headaches!

A lot of what I know about things I got from the web as my doctors are rather non-comittal on things like exercise. I have great respect for Dr Batzdorf and will try out sidestroke,thanks.

Here in the UK we seem to have a long wait for things like follow-up MRI's (except if you can go private in which case they can be done within days). Most frustrating.

Just about my biggest problem is that sitting in font of the computer is guaranteed to give me neck and headache.So have to keep it short.

Regards
Trudi
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new from UK

Postby emmacos » Sat Jun 09, 2007 6:20 pm

Hi,

I have a 15 yr old daughter Helen who has cm/sm and Scoliosis, and we are also from the good old UK! We live in Preston, Lancashire. Helen had decompression surgery in Manchester in Oct 2004. She's a lot better than she was pre surgery, but she still has some symptoms such as eye problems, some right sided weakness and numbness - she cant use her right hand very well, some bladder problems which she takes medication for, headaches which come and go and which she takes medication for also, she also has some swallowing problems, but she does manage to live a pretty normal life - she paces herself and rests when she's tired or not feeling too good. There are a few issues I'm still not happy with, such as the pseudomeningocele she developed after her surgery, which she still has - I've taken Helen to see a few different neuro surgeons about this, and they all feel it should be left alone, whereas American neuro surgeons have different feelings on this - this rankles with me all the time, but I'm not sure what I can do really, as when I bring it up here the neuro surgeons and neurologists just get cross with me! Anyway, I keep fighting on for her, and as I say she is managing pretty well most of the time.

Its good to see a fellow Brit on here. Hope you're doing okay.

Emma.x
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Postby Ryzing » Sat Jun 09, 2007 9:24 pm

Yikes! Sorry to hear the breaststroke is out for you Trudi, but at least now you know it's going to definitely cause you way too much pain. This year it may do the same for me, too. I guess I'll find out (that is if my pool ever gets fixed and it ever warms up in Ohio again!).

Diane
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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