weak voice, swallowing probs and breathlessness

[emmacos1960]

My 19 yr old daughter went into hospital last sunday with Urinary sepsis and she is still in the hospital.  They seem to have her sepsis infection under control but her voice has become very weak and she is having problems swallowing liquids and she has some breathlessness.  She had decompression surgery in Oct 2004 for chiari malformation with syringomyelia.  They are now saying she may have Syringobulbia and she is booked in to have an mri on monday. Following her decompression surgery she developed a pseudomeningocele which is a collection of csf fluid at the back of the brain, but her neurosurgeon was happy to leave this, and she has been doing well over the past 6 yrs.  I am just wondering if this pseudomeningocele may be causing these voice and swallowing probs.

I just wondered if anyone on here may have any idea as to why she has suddenly developed a weak voice and swallowing probs and breathlessness and if anyone has any experience of Syringobulbia? It just seems weird to me that all this has come about since she developed Urinary Sepsis!

Thanks for your help.

Emma.

[selmaS]

I would suggest u call or write to a few of the bigger name clinics...like The Chiari Institute in NY, and Dr Oro in CO, and Dr Rosner in NC or Dr Henderson in s Bethesda, MD....ne of these drs should be able to help...I can not say what they charge so u will have to inquire.

   "selma"

[emmacos1960]

Hi Selma,

Yes Im going to get copies of the mri they did today so I can get a second/third opinion.  Who would you recommend in the US?  Thing is I couldnt afford to bring her there - we're in England and I wouldnt have the money if she needed surgery there, but its certainly worth getting an opinion.

Emma.

[selmaS]

Emma...do u have copies of her MRI?...if not can u get copies?....there r several NS's that r chiari specialists in the USA that will review the films for a fee, some  it is a minimal fee, others do it free with hopes u become a patient.

It is a way to get an opinion with out traveling.....just a thought.

   "selma"

[emmacos1960]

Hi Selma,

Her neurosurgeon and neurologist, and she has seen a few, all were happy to leave her pseudomeningocele.  It seems in England most are happy to leave them, but Im not convinced this is a good thing.  She got Urinary Sepsis about two wks ago and ended up in hospital, and her speech at the same time because very weak and a bit slurred, and her swallowing problems which she had from when she was first diagnosed got worse and she is now having to breathe in after speaking, which she never had before.  Im not sure who else I could take her to for a second opinion to be honest.  There seem to be varying opinions on whether a pseudomeningocele should be left alone or treated.

Im not happy with these new deteriorations though and her neurologist has put her breathlessness down to anxiety, which is ridiculous and not true!

Shes out of hospital today, and she had an mri this morning that has showed there is no change from her last mri which was taken about 4 yrs ago.

Emma.

[selmaS]

  HI and welcome to the Chiari forum.

  I am concerned for ur DD that the drs left her pseudomeningocele untreated for 6 yrs!!! goodness, yes, IMHO that is the cause of many of her issues and it should have been addressed right away.There is a way to correct this condition and relieve the symptoms it creates.

A pseudomeningocele is an abnormal collection of cerebrospinal fluid (CSF) that communicates with the CSF space around the brain or spinal cord. In contrast to a meningocele, in which the fluid is surrounded and confined by dura mater, in a pseudomeningocele, the fluid has no surrounding membrane but is contained in a cavity within the soft tissues.
Pseudomeningocele may result after brain surgery, spine surgery, or brachial plexus avulsion injury.
Treatment for pseudomeningocele is conservative or may involve neurosurgical repair.

May I ask, when was her last MRI of the affected area?

   "selma"

[rod44]

I pray it is nothing too serious. Please do let us know how things work out.

Yes I have "borderline CM" a Syrinx and a congenital malformation of my Cervical Thoracic Spine.

[emmacos1960]

Thankyou for your reply, and hopefully it is just swelling which will resolve itself.  I really do pray that she will not need any further surgery.  I'll post and let you know the outcome of the mri.

Do you have first hand knowledge of cm/sm yourself?

Emma.

[rod44]

Hi Emma, I am glad they have the Sepsis under control. I know my friend became very rundown and weak, the infection drained him, after he got Sepsis it took ages to get back to full health.
Yes I was wondering what with the pseudomeningocele if maybe there is some cerebellar inflammation/swelling or maybe swelling/inflammation affecting the cranial nerves. The MRI should be able to give some answers so hopefully they do it in the morning.

[emmacos1960]

Hi Ray,

Thanks for your reply. They havent mentioned meningtitis & meningococcal disease and they seem to have the sepsis under control now with antibiotics, but this weak voice and swallowing and breathing probs have only started since last sunday when she went into hospital with Urinary Sepsis.  I just wonder if the toxins could have affected her in some way.  They are saying she may have some brainstem swelling and are going to do an mri scan hopefully tomorrow to check for any new syrinx that may be affecting these areas. She was diagnosed with a 4th nerve palsy I think it was when they originally diagnosed her with cm/sm in Oct 2004 which affects her eyes giving her double vision and some swallowing probs but the swallowing is worse at the moment bad and the voice and breathing probs are new.  When you say inflammation could be a problem affecting her ability to swallow, do u mean inflammation of the brainstem or what in particular?

[rod44]

Hi & welcome Emma, I am sorry that you and your daughter are going through this.
I have a friend who had Sepsis a few years ago, Sepcis or Septicaemia is quiet a nasty condition. It can spread (very quickly) through the blood to many organs in the body preventing blood getting to vital tissue in the body. She may just be weak as this will take a lot out of someone and this is why her voice is weak.
Inflammation could be a problem affecting her ability to swallow.

Syringobulbia is quiet rare and may affect the cranial nerves. Has your daughter any fecal numbness, problems with taste, opening or closing eyes or mouth etc?

Have they ruled out meningitis & Meningococcal disease?

Ray