New Patient- Intro

Pull up a chair, grab a cup of coffee and have a nice long chat. This forum is the perfect place to get to know one another on a more personal basis. Share birthday or get well wishes, funny stories, jokes and interesting tidbits.

Moderator: pmaxwell

New Patient- Intro

Postby airsense00 » Thu Dec 09, 2010 11:33 am

Hello,

My name is David and I live in Michigan. I am otherwise a healthy 29 year old married man with a 4 month old. I went to the doc back in feb complaining of a shooting pain after coughing that travelled down my arm. He sent me for an xray and everything appeared normal. A month ago I went back for a routine physical and told him my shooting pain was turning in to a numbnesslike feeling on the back of the arm and down to my pinky finger on the right arm only. It felt like hot and cold felt hypersensative. He sent me for a spinal mri and it came back I have a small syrinx from C5-C6 to T8-T9 Level in addition to 4-5mm of low lying cerebellar tonsils may represent changes in chiari malformation.

After doing some major research last night my wife and I are pretty upset after reading about CM and SM. I don't want to get worse and I am now reading about the brain surgury that can be done. I have been referred by my primary care doc to see a neurosurgeon. I am looking at the UofMichigan Ann Arbor. I was wondering if anyone is from michigan and can direct me to a NS that has experience in CM/SM. I will travel far as I have to but I only want to see the best of the best, I don't want to mess around with this. Thanks and I will keep updating.
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
airsense00
 
Posts: 36
Joined: Thu Dec 09, 2010 11:10 am
Location: Michigan

Re: New Patient- Intro

Postby razzle » Thu Dec 09, 2010 12:41 pm

do yu have chiari or not? If oyu dont there is not much thjat can be done for just a syrinx. I will get back to you on a list , but there are not very many experience drs in Michagan
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
User avatar
razzle
 
Posts: 1876
Joined: Thu Apr 30, 2009 4:55 am

Re: New Patient- Intro

Postby razzle » Thu Dec 09, 2010 12:43 pm

Dr. Steven Swanson
Neurosurgeon
Michigan Brain & Spine Institute
Reichert Health Bldg
Ste. 3011 Elliott Drive
Ypsilanti 48197
(ph) 313.434.4110

he is about the only one in Michigan

excellant dr in Wisconsin
http://www.wichiaricenter.org/

also do not go to Mayo
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
User avatar
razzle
 
Posts: 1876
Joined: Thu Apr 30, 2009 4:55 am

Re: New Patient- Intro

Postby SarahEllis » Thu Dec 09, 2010 1:47 pm

Hi David,

I am pretty much in the same boat as you although I have other health issues, you can see below in my signature. I am also being referred to a neurosurgeon (words I never thought I would speak or type in my lifetime) for his/her opinion. I have far less experience than those on here but I can say that you really must weigh your options here. Usually your symptoms are compared to the risk you'll take by having surgery. Obviously, your symptoms are quite bothersome, but a neurosurgeon may not suggest surgery until they progress or if your syrinx begins to grow rapidly.

If you just have Syringomyelia and they're not laying down a Chiari Malformation diagnosis just yet, there is surgery you can have done for just the SM. It pretty much involves draining the syrinx and correcting the primary condition which has led to formation of the syrinx (if there is one). In a certain number of cases a syrinx may reoccur, this will require another surgery.

I admire your determination to get to the bottom of the issue and hopefully resolve it asap! No pun intended. But take it from me, I'm a mother of two children, a wife, and I am 28, very close to being the same age as you; take a breather and don't rush into anything.
Sarah
Diagnosed w/RRMS on October 29, 2009. Changed to Neuromyelitis Optica (NMO) better known as Devic's, on June 22, 2010.
Diagnosed w/Syringomyelia T-4 to T-9 on November 17, 2010.
User avatar
SarahEllis
 
Posts: 18
Joined: Thu Dec 02, 2010 6:09 pm
Location: California

Re: New Patient- Intro

Postby SarahEllis » Thu Dec 09, 2010 1:51 pm

razzle wrote:Dr. Steven Swanson
Neurosurgeon
Michigan Brain & Spine Institute
Reichert Health Bldg
Ste. 3011 Elliott Drive
Ypsilanti 48197
(ph) 313.434.4110

he is about the only one in Michigan

excellant dr in Wisconsin
http://www.wichiaricenter.org/

also do not go to Mayo


I'm curious, why stay away from Mayo?
Sarah
Diagnosed w/RRMS on October 29, 2009. Changed to Neuromyelitis Optica (NMO) better known as Devic's, on June 22, 2010.
Diagnosed w/Syringomyelia T-4 to T-9 on November 17, 2010.
User avatar
SarahEllis
 
Posts: 18
Joined: Thu Dec 02, 2010 6:09 pm
Location: California

Re: New Patient- Intro

Postby chrisw » Thu Dec 09, 2010 2:39 pm

I am so sorry you have to join us here in our little group. It sounds like you have borderline CM1 if you have 4-5mm of low lying tonsils. The usual" cutoff" is 5mm for Chiari 1. Your life is NOT over, your just going to have to make some small changes. I can not stress enough going to CM/SM specialists. Too many of us have gone to just" average" NS and have received substandard care. Your going to find out every doctor "knows" everything but very few of them actually really know our disorders in depth.

Please read the topic" tips for living with sm/cm in the "top" discussion group. Your going to find a lot of information both there and in thee online book on the asap website.

I am happy to meet you, I just wish it was under more pleasant circumstances,
Chris
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
User avatar
chrisw
 
Posts: 494
Joined: Fri Aug 22, 2008 2:48 pm
Location: Columbia, SC and lots of time near Blacksburg and Smith Mountain Lake in VA

Re: New Patient- Intro

Postby airsense00 » Thu Dec 09, 2010 4:13 pm

Thanks for all the info and replies. I started the process of making an appointment with dr frim of Chicago. I also am checking with U of M. I read somewhere that Dr. Swanson of Michigan is no longer around? Dr. Frim's office said I need to get a brain MRI in addition to the spinal/thoracic one I already have. Looking at the MRI I can definitely see a grey cavity. I can't really see the chiari malformation but the write up said possible chiari malformation.

I know you said my life is NOT over but man this scares me a lot. I have a lot running through my head. For one I here the condition gets worse and there is no going back once you get spinal cord damage. So that makes me want to get surgery asap. My arm is already numb and seems to be getting worse since feb. The second is my job. I read the whole phamplet on this website and learned about not lifting no roller coasters and etc. But my job is that I am a pilot for the airlines. Would no roller coasters mean no airplanes?

I guess I an really anxious to see a NS who has expertise in CM and SM.

Some random questions.

How long does it take to go from diagnosed to severe disability? How fast is the progression?

What is the success rate of brain decompression? Does this surgery usually get rid of the syrinx? Or does it require it's own drain/ shunt?

Thanks for all the help. I have not been able to take my mind off this for two days. I'll keep you posted and keep reading around here.

Dave
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
airsense00
 
Posts: 36
Joined: Thu Dec 09, 2010 11:10 am
Location: Michigan

Re: New Patient- Intro

Postby razzle » Thu Dec 09, 2010 4:30 pm

didnt know about Dr swanson. I will check on that . also I thought Dr. Frim saw children only . Like I said Dr. Heffez is good too.

if you post mayo clinic in the search box you will see alot of people have been turned away from Mayo. They may be experts in other fields but not chiari and sm .

if you are willing to travel Dr. Menenez in Iowa city iowa is a expert and is on the ASAP Medical advisory board . Roz
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
User avatar
razzle
 
Posts: 1876
Joined: Thu Apr 30, 2009 4:55 am

Re: New Patient- Intro

Postby chrisw » Thu Dec 09, 2010 5:51 pm

Ouch... I am so sorry, I don't know (and no one knows) the answers to many of your questions. Sometimes people never become severely disabled...

Dr. Frim sees some adult patients from time to time and I have heard great things about him.

If you have CM usually the decompression stops the growth, sometime the syrinx shirnks, sometimes not, but I don't recall many double surgeries. They are doing studies on the sucess rate now so even that is unknown in part because sucess is so subjective.

I don't know anything about the rules about you flying but I have a gut feeling if you report this they will take you off of flight status immediately.

Many of us also seem to have some carpal tunnel syndrom so that could cause some of the tingeling
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
User avatar
chrisw
 
Posts: 494
Joined: Fri Aug 22, 2008 2:48 pm
Location: Columbia, SC and lots of time near Blacksburg and Smith Mountain Lake in VA

Re: New Patient- Intro

Postby airsense00 » Thu Dec 09, 2010 7:09 pm

I checked out the mayo clinic...

http://www.mayoclinic.org/chiari-malformation/

It seems they do specialize in CM. But I will read some of the stories.
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
airsense00
 
Posts: 36
Joined: Thu Dec 09, 2010 11:10 am
Location: Michigan

Re: New Patient- Intro

Postby babyboy16 » Thu Dec 09, 2010 7:40 pm

Dave,

I was in your position 2 years ago. We are almost diagnosed the exact same. I am a teacher and was the mother of a 4 year. I li ved on the internet and allowed it to consume my life. You are doing the right thing by researching, but do remember that there is varying degrees. I had numbness and severe headaches. We chose to operate quickly because I was only 27 years old and was scared of it progressing. Its been 2 years since my surgery, and I ended up having another baby. I can't see any reason why you could still be a pilot....as long as, of course, you were able to have another feeling to control. My surgery was a success...minimal headaches now and all feeling came back within 6 months!! I know not everyone has success stories, but do know there are many. Most people that are better and healthy typically aren't the ones writing because they need support. I try to check in here because I want to help anyone I can. If you have any questions you can email me at chiarihelp@hotmail.com and I'd be happy to talk with you!! It is a scary though...brain surgery...but it could always be worse.
babyboy16
 
Posts: 29
Joined: Fri Jun 06, 2008 8:53 am

Re: New Patient- Intro

Postby chrisw » Thu Dec 09, 2010 9:36 pm

Dave,

Babyboy is totally right, I wrote the last message in several steps over the course of an hour while cooking dinner and rereading it now my positive meaning did not come out. In fact I said the exact opposite of my intention most of the time by writing the second half of the sentance a while after the first.

I am so very sorry.

1. Most of the time people do not become severely disabled.
2. Something like carple tunnel can cause your arms to feel numb and many of us seem to be diagnosed with this also, who knows, there may be a correlation? It can be something as simple as this as to why your having the symptoms. When doctors see big words like syringomyelia they tend to blame this for all the symptoms and stop testing.
3 You want to see a Chiari Specialist as soon as possible and get a proper diagnosis and treatment plan. When people, employers especially, get wind of this and google it they tend to rush to quick and sometimes rash judgements that can be hard to overturn. Hence the gut feeling...
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
User avatar
chrisw
 
Posts: 494
Joined: Fri Aug 22, 2008 2:48 pm
Location: Columbia, SC and lots of time near Blacksburg and Smith Mountain Lake in VA

Re: New Patient- Intro

Postby chrisw » Thu Dec 09, 2010 9:51 pm

Oh, and from what I have heard Dr. Frim is one of the best (I am sure there are others) but I haven't heard any positive responses from the mayo
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
User avatar
chrisw
 
Posts: 494
Joined: Fri Aug 22, 2008 2:48 pm
Location: Columbia, SC and lots of time near Blacksburg and Smith Mountain Lake in VA

Re: New Patient- Intro

Postby jswack » Thu Dec 09, 2010 10:42 pm

Dr. Frim is my doctor and I'm definitely a grownup. He is wonderful.
Jeanne in Madison
jswack
 
Posts: 208
Joined: Fri Aug 31, 2007 8:22 am
Location: Madison, Wisconsin

Re: New Patient- Intro

Postby razzle » Fri Dec 10, 2010 6:08 am

I have heard this now that Dr. Swanson's long gone. They said he took a job at Mayo Clinic in MN. If so check it out further and let me now. Now if you go to a teaching hospital your family dr. must request that you see a certain dr. If not they will stick you with anybody.
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
User avatar
razzle
 
Posts: 1876
Joined: Thu Apr 30, 2009 4:55 am

Next

Return to ASAP Lounge

Who is online

Users browsing this forum: No registered users and 6 guests

cron