Chiari Advice - Please help!

[Reyne]

Hello,

I understand that its not possible to get a diagnosis through these forums but I'm rather desperate for some advice.

I have had severe tinitus, a few hemiplegic migraines (loss of all feeling on one side and partial sight) and balance issues since 2007, an MRI was done at that point and marked with 'possible Chiari' but I was not told. I also suffer with Endometreosis and PCOS.

In September I gained the feeling of a lump in my throat and my voice became more and more hoarse. I would have a deep cough and try to clear the 'lump' and would end up continually choking. In mid December my throat suddenly felt like a balloon being blown up and my voice went entirely. After a visit to hospital we were told about the 2007 chiari possibility. Recently within the last month I have had extremely dry mouth at night and biting my tongue hard when I'm asleep which makes sleeping hard and the Dr suggested this was due to sleep apnea.

Just found a scan from a few years ago, I know it might be nothing but I've seen others that are similar marked as Chiari and was hoping someone might be able to suggest if I should get this checked: https://picasaweb.google.com/109801249253282543891/Brain#5696094765277364674

My balance has become worse and I have headaches and torticollis a few weeks ago - still slightly painful on the right side base of my neck. My hands and feet are constantly freezing cold and I don't wear rings any more because my hands randomly swell up in the evening. Some days I can manage a few croaky words and sometimes only air comes out. When I try to speak I can't breath but I can whisper fine. I can talk a little better with my chin down on my chest but it's still croaky. I had an MRI of the head 2 weeks ago. The consultant hadn't seen the official report but I was told things seemed okay on it and there wasn't much interested in finding out what was wrong and passed me to ENT. Is it worth me getting a second opinion? I've had CT/Barium swallow to check the neck and all seems fine. I'm very sad and frustrated and I just want to have my proper voice back.

Thank you for any help or advice and for taking the time to read this.

[linnielou232]

I wanted to let you know your not alone and your not stupid or crazy.  Some of us have been where you are at right now and it is flustrating.  Just wanted to let you know your not alone.  Just keep being persisitant and you will find the right Dr that is for you and you will get your answer's.  We are here for you on this tough journey.  It's finding the answer's that causes you pain that you need to find out.  I was blessed to find a  NS that would listen and explain.  Best of luck.

[selmaS]

  U r welcome..wish I had more info .

Keep me posted : )

  

[Reyne]

Thank you so much, again! I'll look a few up tomorrow and see if I can find contact details. You've been really helpful :)

[selmaS]

  Just bcuz a Drs name is on the list does not mean he is the best one for u.....I would suggest u try to see a couple and see who u r most comfortable with.....

The UK list is a list pre made not sure about the Ann Conroy Trust and who selects the Drs for the list....but our list here is compiled by the members own drs...and only if they were happy were they to add them to the list.....

And that still does not mean u would not select one that may feel the same as ur dr....they r not all true specialists, just successfully treated it....

There r far too many Drs that feel chiari does not cause symptoms....and to those Drs I say I wish u the symptoms for just 1 day, then tell me about it.....

   U would have to contact the Drs on the lists and ask for e-mail info...some  if u google them u will find it on line....but many NS will give u an opinion via MRI's and e-mail...some for free and some for a nominal fee.

  "selma"

[Reyne]

Hi,

Thank you so much for coming back to me so quickly. Sadly one of the Doctors I have seen already is on your UK list so I'm thinking perhaps this is all in my head. I'm just a bit lost and I don't know what to do for the best. I'm meant to be starting a new job soon and if I can't speak, I can't really do it.

Do you happen to know of any email address or website I might be able to send the MRI images to for just a very brief second opinion.

I just feel really stupid. Thank you again.

[selmaS]

  Hi and welcome to the Chiari forum.

The problem u have encountered so far has been , being seen by Drs ill educated on chiari and it's affects and how to even identify it correctly.

Once u find a true chiari specialist u will see a difference in the care and treatment u get.....

We do have a list of Drs names compiled by  the members of their Drs...they only added the names if they were happy with the care they received....this list is not meant as a referral, but a means to help u get started with ur research of drs....visit and interview a couple different Drs and then decide which is best for u.....http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

The issue with ur voice and the swallowing issues r an indication u need to get to a specialist and not wait too long and do not go with a Dr that promises to "cure" u, there is no cure for a malformation of the skull...only treatment to slow progression and restore CSF flow.

  "selma"