worsening symptoms but mri fine!!!!

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worsening symptoms but mri fine!!!!

Postby emmacos » Sat Apr 07, 2012 6:30 am

Hi All,

Ive posted a few times recently. My 20 yr old daughter Helen who has cm/sm and was decompressed in Oct 2004 is going through a bad time at the moment.... her symptoms all seem to be worsening!

She is saying her double vision is worse, her balance is worse, her right hand feels numb and tingly, she is having bad constant daily headaches, and now she is saying she is struggling to wee!

She had an mri scan a month ago and her neuro surgeon was happy with it! Why is all this happening???!!!

She has an appt tomorrow to see her neurologist at hospital, and Im hoping he'll admit her and we will hopefully find out what is going on! Im worried to death....

Im in the process of getting copies of her mri scan to get a second opinion, but in the meantime she just seems to be going downhill..... its like going back to how she was pre surgery!

Any ideas?

Emma.x
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Re: worsening symptoms but mri fine!!!!

Postby reedy » Sat Apr 07, 2012 8:07 am

Hi Emmacos,

Struggling to wee is not good (the pain is also not good, but this is a more urgent symptom). Its good you have an appointment tomorrow (Easter?) as it sounds like you might be in line for another surgery. But from what I've heard from neurosurgeons, surgery for Chiari is (relatively) effective. So the bad news is that something has gone awry, but the good news is that its likely it can be dealt with effectively. We've just corresponded on PM and I know you have the best doctors looking in to this, so go forward with strength and conviction.
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Re: worsening symptoms but mri fine!!!!

Postby emmacos » Sat Apr 07, 2012 8:43 am

Thanks for your help Ellinor.

We need all the help we can get at the moment!!!

Emma.x
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Re: worsening symptoms but mri fine!!!!

Postby karenb » Sat Apr 07, 2012 3:01 pm

Emma,

With Syringomyelia (and Chiari as well), many things can go wrong, while the MRI still looks "good" (read that "unchanged" or words to that effect).

Very few Neurologists or Neurosurgeons have a comprehensive grasp of all the things this condition can cause.

Your daughter's difficulty urinating is something that needs urgent attention by a urologist. He's in the best position to figure out what's going on and how best to treat it. Be pushy about this - your neurologist cannot diagnose this problem, and I would be very suspicious if he tries to do so. He should, however, be in a better position than you are to get a urologist's attention and care as quickly as possible.

Karen

P.S. Your daughter's bathroom struggles could be contributing to the other problems. It's well documented that straining (including straining in the bathroom) can cause other symptoms to worsen.
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Re: worsening symptoms but mri fine!!!!

Postby reedy » Sat Apr 07, 2012 3:38 pm

karenb wrote:Emma,
.... your neurologist cannot diagnose this problem, and I would be very suspicious if he tries to do so. He should, however, be in a better position than you are to get a urologist's attention and care as quickly as possible.


I'm not sure I'd disqualify a neurologist on this right off the bat - the control for micturition runs through the spinal cord and I can easily see its malfunction being linked to a syrinx. My initial symptoms (long ago) for my acute problem at the time (a spinal plaque) included this as one of the main issues. I bloated up like a big pee-balloon! It is true that other things could also cause this, but considering that there is a known agent - a syrinx - right there, I'd think a neurologist (or neurosurgeon) would have important insight and would likely get to the cause quicker than a urologist, who might fiddle around with alternative explanations due to lack of familiarity with syringomyelia.

BTW, solving the problem on my spinal cord at the time solved the issue of lack of ability to pee. Now I'm in the other camp! Wish I had more control...but its the least of my worries, really. :)
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Re: worsening symptoms but mri fine!!!!

Postby pmaxwell » Sat Apr 07, 2012 5:11 pm

Often an infection can cause pain to increase dramatically. The brain knows something is wrong but due to nerve damage in the spine, it might not be getting the true culpret. If you daugter has a kidney infection that could be why she has an increase in CM/SM symptoms. I would definately see a urologist to rule out a problem there. The other thing that you might consider if there is no infection is ICP.

I hope they can find the answer quickly,

Patricia
Together We Can...
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Re: worsening symptoms but mri fine!!!!

Postby syrinx48 » Sun Apr 08, 2012 4:15 am

I am lucky to have found a neuro urologist. He stays also in contact with my NS. My urologist was planning ro give me a PNS (Percutane Nerve Stimulator), wouldn't give me one without the concent of my NS. Perhaps it is possible to find a neuro urologist either. I did look for a urologist and looked at his field of interests.

I hope you find a solution quickly!

Annemarie

PS. as a result of selfcath. I have had a couple of uti's. They made my symptoms become worse, mind you, I have SM through my entire spine, not CM
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Re: worsening symptoms but mri fine!!!!

Postby karenb » Sun Apr 08, 2012 5:52 pm

Hi Annemarie,

I wasn't able to find a neuro-urologist, but did find a urologist (420 miles away!) who was affiliated with the best Spinal Cord Injury hospital in the region. He had also done his residency at one of the VA hospitals that specializes in spinal cord injuries, so he was able to spot the pattern almost immediately.

Keep us posted on the PNS!

Karen
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Re: worsening symptoms but mri fine!!!!

Postby emmacos » Mon Apr 09, 2012 3:41 pm

Hi,

Helen's back in hospital today, it seems like all her old symptoms have returned - balance and dizziness issues, worsened double vision, along with the painful headaches.... they've done a chest x-ray as she has a bad chest and has been on antibiotics for a couple of wks, and hopefully will be re-doing the mri scan next week - full scan of head and spine to check for any changes to the syrinx which may be causing these changes.

They're also going to do full blood checks for her blood sugar, as I wondered about hypoglycaemia as her head seems to improve a bit when she has sugar, so they're checking all that too.

Anyway, will just have to see what happens I guess, and if no answers, will have to press for more opinions. I hate all this - it's like being back to square one again!!!!

Emma.x
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Re: worsening symptoms but mri fine!!!!

Postby karenb » Mon Apr 09, 2012 11:39 pm

Emma,

Remember this - you know a lot more about Helen's condition than you did even a few days ago, and she's in good hands.

May you both rest in the comfort and knowledge of God's peace and caring.

Karen
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Re: worsening symptoms but mri fine!!!!

Postby emmacos » Tue Apr 10, 2012 4:30 am

Ah thanks Karen - my mum tells me the same!! You've made me cry saying that!!!

Emma.x
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Re: worsening symptoms but mri fine!!!!

Postby karenb » Tue Apr 10, 2012 12:52 pm

Emma,

Just sending you a big hug - it sounds like you need it!

Karen
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Re: worsening symptoms but mri fine!!!!

Postby emmacos » Tue Apr 10, 2012 2:40 pm

Thanks Karen....hugs back at you! xxx
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Re: worsening symptoms but mri fine!!!!

Postby karenb » Wed Apr 11, 2012 9:53 pm

Hi Emma,

Continuing hugs and prayers are going your way. I will say a Rosary for Helen tonight.

You didn't mention, but has she been checked for a UTI or other infection yet? If you're not sure, ask her doctors (translation: "give 'em a hint!").

Best wishes through this tough time.

(((((()))))))

Karen
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