Too young to wait need help !

[nicollequinn]

New Brunswick, Canada.

Hi there,

My boyfriend had been diagnosed in September 2013, with Chiari Malformation Type I, he is 23 and I am 20 years old. His pain began when he finally received his first job as a Tree Harvester a year after finishing his secondary education in heavy equipment.  We were finally ready to get out of his dads house into our own home when he woke up with a severe migraine, I took him to the hospital who then sent us home saying "Your Dehydrated!". The pain continued the rest of the week until they finally reviewed his CT scans in march 2013 and noticed his left side of his brain was lower.

This does not run in his family, we have been back and forth with his surgeon who is ready to perform and his specialist who wont do anything for us. My boyfriend was taken off work and put on E.I. which only covered him for 15 weeks and now he is working as a shop guy so he can make money even though his Family doctor does not want him working any jobs involving heavy lifting, considering his high risk of falling into a coma. His specialist never gives us more than a minute of his time whenever we go to see him and has only done a MRI and Nerve testing (He was suppose to get a lumbar done which was suggested by his surgeon) he leaves us with the same statement every time weve gone to see him "Come Back if it gets worse!". Thursday we are going to get a referral for a different specialist for a second opinion.

This puts a huge hold on our lives as he doesn't make as good money anymore and I cant attend college until we find out whats going on with his surgery. We live in an unfinished basement with a mini fridge, microwave and a dog. Our eating habits are horrible as we cant even use a stove or store enough food to even cook anything. His dad and step mother want us out of the house as there is a lot of friction between us. He is treated as if he is faking by a majority of people, because he is working now, which makes his dad think he can go run the harvester again which we believe the vibrations of the machine made the Chiari act up in the first place. He will work on his vehicles, considering if he doesn't no one else can and we cant afford to pay someone to do it.

My boyfriend is in pain everyday, gets a lot of numbness in random parts of his body, he is irritable, and has a hard time sleeping. This has affected our relationship a lot as well, but I will never leave his side.

If anyone knows any clinics or very good specialists in Canada can you please help, we cant live like we are anymore.

[selmaS]

  Hi and welcome to the Chiari forum.

I want to start by thnking u for being his advocate....far too many with this condition do not have support, so to have that plus an advocate is wonderful, so thank u for being that for him.

We do have a list of Drs in Canada that are Chiari specialists...it is a small list, but one u can use to start ur research of Drs and who knows u may find another Dr to add to our list.....http://www.medhelp.org/health_pages/list?cid=186

To start with this condition does not run in his family  may not be an accurate statement as it is possible that family members may not be aware of it...some "deal" with symptoms and accept them as "normal" since they have always had them....so it is possible someone in his family has this.

Do u know if his DX is for congenital or acquired Chiari?

  Do look at the list in the Health Pages and keep us posted on his progress.

[nicollequinn]

Thank you I will look at it
the neuro specialist we are with at the moment is Dr.McLean in Saint john and Sussex region, NB Canada.

we are not sure if its congenital, but would say is acquired Chiari as he has just got symptoms in September 2013.

[selmaS]

  Many DX'd with Chiari like to think they have acquired Chiari as they too feel the symptoms just started after an event  like a MVA , fall etc....but those events can trigger symptoms to flare even with congenital Chiari....

  Chiari symptoms can also cycle and many times....we will contribute symptoms to other things, like the flu or over doing it...and as I mentioned b4, many symptoms we do not recognize Chiari symptoms as symptoms since they have always been there.....

  Keep us posted on what u find out.