New diagnosis

I just found out yesterday that I have Chiari Malformation and I am symptomatic.  I have had a terrible headache for 4 weeks strait, and also have lost almost all me hearing.  I can only hear out of one ear to begin with so when I realized I couldn't hear at all I called the ENT, he sent me to a head and neck specialist and that is when I had the MRI.  I have the results and I am seeing the doctor tomorrow.  Can anyone tell me what I can expect from here?  I know I will need the decompression surgery because there is a pooling of CSF at the base of my neck.  I want to get this going ASAP any advice?

[pamk5]

Hello and welcome!  I am glad that you joined us but sorry that you had to seek us out.  Is the doc you are seeing a neurosurgeon?  Probably the most important thing that you should do is seek out a specialist that devotes his practice to Chiari.  There is a difference between a NS who occasionally sees CM and a Chiari specialist.  There is a list here in the forum of docs other members have seen and liked.  

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

I went thru several NS's and NL's before I finally found mine.  Have you had a flow study (cine mri) or a mri of your spine to rule out a syrinx? There are several associated conditions that you will need to be tested for.  I am sorry that you have issues with your hearing.  What other symptoms are you having?  Keep in mind that surgery is meant as a way to stop progression and is not a cure.  

I hope that this information helps.  Keep us posted on your visit.  

Again, welcome!
Pam

[AGusnard6676]

I have had the MRI and the contrast the shows some pooling fluid and actually the neuro I saw is located at st johns with a dr Matthew smyrh who is specialized in cm I also have te extreme fatigue blurred vision dizziness chinos headache muscle weakness and severe neck and upper back pain.  I have done research and I realize that the surgery won't cure but I have seen so many soca in te last 18 months and u am just relieved to know that this is truly something and I am not crazy like done people were saying.  I am hoping when I o back tomorrow they can get the ball rolling Becuz my 9 and 10 year old can't understand why mommy is always in bed all weekend and as soon as I get home from work.  Thank you so much for welcoming me I am glad that I found this site it will be nice to talk to people who know what it is like.

[pamk5]

You came to the right place we def know what it is like... I dont think you will find a more caring,supportive group of people anywhere.  I know when I found this forum, it took me about a month after my diagnosis, I wasnt sure what to do next either and the people here really helped me.  So I am happy to return the favor.  

Please post an update after your visit.  

Have a good evening.

Pam

[STL5]

I thought that Dr. Matthew Smyth was a pediatric doctor.  Does he see adults?

[AGusnard6676]

Dr. Smyrh also consults at St. Johns for adults but I think he primarily does pediatrics.  I gave an appointment with dr. Michael polinsky at st. Lukes I work for a group of cardiologists and they all Highly recommended him to me so I see him in 2 weeks and my husband and I are going to push for the surgery because the symptoms are so severe and I am at 5.5 mm I can't take it anymore

[STL5]

I saw Dr. Yoon at St. Johns for my first NS visit.  Since the neurologist I saw made me promise to get a second opinion I was referred to Dr Kennedy and  he referred me to Dr Santiago at Barnes.  This is who is going to do my surgery.  He is not a Chiari specialist but has performed the surgery numerous times and I feel comfortable with him.  He was really good about explaining things and making sure that I was comfortable with him performing the surgery.  I hope things go well with your visit.  St. Lukes is a good hospital.

[AGusnard6676]

Thank you for your information... I did not know if anyone on here was in St. Louis and it is nice to know that there is someone in my area.  Where exactly do you live and when are you having your surgery?  Today is a very bad day, my vision is so blury and My head is pounding so bad that my neck is burning... I am so dizzy that it took everything I had to try and see patients with the doc I work for.  I am hoping that Dr. Polinsky will do my surgery at Mo Bap because I am not a huge fan of St. Lukes, but at this point I just want it over to try and get rid of the symptoms.  

[jennylynch]

You are in the right place for sure we are so happy you found us. I am praying that you can get some relief soon. i had my decompression just over a month ago and feel a bit better at times. but i am still in the healing process and not sure what the future has to hold yet