NPH or Chiari Malformation, that is the question!

[Pamipie]

Good morning!

I'm going to give a brief history of my husband's issues and throw it all out there to those of you who are more experienced and have the knowledge to possibly figure things out.

My husband is a *relatively* healthy 69 year old. He had a concussion ten years ago from a car accident. Since that time he slowed down quite a lot and started having a gait disturbance, cognitive thinking issues, and short term memory loss. Also during this time he seemed to choke very easily when eating. These choking episodes have become very problematic and upsetting. He also, just last year had at least five episodes of coughing syncope. He has complained of headaches and neck pain often.

The first neurologist diagnosed Parkinson's Disease. The second opinion neurologist (USF/Tpa) diagonosed possible frontotemporal dementia but also recommended a consult on his enlarged ventricles. He had a three day lumbar drain with a pre neuropsych and PT testing, then post testing. He did improve on the post testing which indicated a shunt might help. He did have ventriculomegly. (forgive my misspellings, please!). When undergoing the lumbar drain, his tubing became disconnected at some point and an unknown amount of cerebral spinal fluid was lost. He suffered from headaches and nausea for a month. After he recovered from this, he had a VP Codman shunt placed a month later. The pressure at the time of surgery was 160, his shunt was set at 120, then lowered to 110 six weeks later. I did see an improvement of his symptoms during this time. A followup CT scan of his brain showed an 8mm area of effusion. They re-set the shunt to 200, the effusion dissipated, and now we are in the process of lowering the pressure more gradually. He just had another CT scan, and we hope to get this set at 120 (down from 130).

My question is, he still suffers from the choking episodes and coughing syncope and headaches and neck pain. Surely, with several MRIs, he would have been diagnosed if he indeed had Chiari Malformation, correct ??? I have never asked the NS specifically. He always seems to go with the report rather than looking at the actual MRI.

Are there any NS  in Florida other than Mayo Clinic that specialize in diagnosing Chiari ? I just want my husband to feel better and have a better quality of life. I want to leave no stone unturned!

Thanks,
Pam

[pamk5]

Hello again... I see Dr Rosner in NC... I have also heard good things about Dr Green in Miami.  Dr Di has moved no one is sure yet.  TCI in New York is another one.  Yes, you should send copies of his reports and scans.  Mainly the most recent MRI to start with.  I am sure when you go see them they will want to see the rest of it.  You are smart to be keeping up with all of it.  

Headaches that are worse with coughing, sneezing, straining are typical CM headaches.  Sometimes you will hear that called valsalva headache.  You are absolutely doing the right thing trying to get him to see someone who specializes in CM.  He is the same age as my dad and way to young to be going thru all this.  We all need our quality of life back.

I wish you and him all the best.  Keep pushing to get the help he needs.  Be sure to keep us posted.  

Pam

[Pamipie]

Sleepypea,

Thank you so much for reading my post and your reply. I saw the name of two NS in Tampa, Dr. Ken Louis and Dr. Gene Balis,  on a list from this forum.

I will definitely check out the webpages you sent in your post. One of my patients (I am a dental hygienist) has Chiari and had surgery by a Dr. Di at the Cleveland Clinic in Ohio, and she was very pleased. I understand he has left the clinic and is going somewhere else now.

When it comes to the brain, I think it well worth the time and effort to search out the very best doctors and travel if possible!! :)

I hope you find someone good, Sleepypea.... Hang in there. Thanks for your help.
Pam

[Pamipie]

Thank you , Pam,

YES, it absolutely kills him to cough or sneeze. He has a terrible headache for at least 15 minutes following, and then it gradually eases off. Is this also a symptom of Chiari ?

After the lumbar drain, I did read that a spinal leak could cause Chiari, but honestly, he had all the symptoms (except the pain from coughing or sneezing) prior to the loss of CSF.

When you say 'send copies'... are you saying send a disc with the actual film along with the report? He has had several MRIs and many CT scans... I've been collecting copies all along the way.  Is there anyone in particular that you would consult with??

Thanks so much for your reply. It's so nice having support like this via the internet!

Pam

[sleepypea]

I found another address and info. on him on another site so I'm not sure which is most accurate or if he may have other offices but here is another that I found.

University of Miami, Dept. of Neurological Surgery
1095 NW 14th Terrace, D4-6
Miami, Florida, 33136
Phone: [phone]
Fax: [phone]
Official Website:
http://www.neurosurgery.med.miami.edu

[sleepypea]

Hi Pam,
I am so sorry to hear your husband is suffering.
I am also in Fl and desperately searching for a Chiari Specialist.
Dr. Green down in Miaima is a specialist from what I hear, but I don't think he is on the list here in the forum.
I am starting to hear a lot of positive things about him so he may be worth a try.
I am getting all my stuff together to send to him before I make the 800 mile round trip to see him.
Here is his info. and some web. add. to check out his page and specialties.
Good luck and please let us know how he does.

  Dr. Barth Green
University of Miami/Jackson Memorial Hospital
Miami Project to Cure Paralysis
1501 NW 9th Ave
Miami FL  33136
[phone] or [phone]
Dr. Green's Webpage:
http://www.med.miami.edu/neurosurgery/clinical_spine.htm
Online Consultation Page:
http://www.med.miami.edu/neurosurgery/consult_spine.htm

[pamk5]

Hello Pam welcome to our little family that seems to grow by leaps and bounds.  Does his headache seem to be worse when he coughs or sneezes?  The swallowing issues are common in chiari...I myself have them and it is very frustrating trying to figure out what you can eat.  

To answer your other question:  Will it be diagnosed?  Not always.  Particularly if it is less than the textbook 5mm herniation.  Some radiologists consider Chiari an incidental finding and "no big deal".  Some of the specialists will review records and films free or at a minimal cost.  I would recommend getting copies of his scans and reports and consult the list of specialists here in the forum and send them to a few to get their opinion.  Once you get that report you maybe able to answer some of your own questions.  

There are different causes of Chiari either congenital (born with it) or acquired.  One of the things that can cause acquired Chiari is a spinal fluid leak which it sounds as though your husband has had.  Your husband is fortunate to have such a wonderful advocate for his health.  Keep pushing till you get your answers.

Again, welcome!  I hope you find the answers and support that you need here.  I hope your husband feels better.

Pam