A new member

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

A new member

Postby ronald64 » Sat Feb 05, 2011 11:00 pm

Hello:
I have been recently diagnosed with a syrinx at the site of a 23 year old injury/fusion at L1. I have developed some pretty moderate neuropathy in the legs and feet, groin and tailbone area...numbness, tightness, pain, cramping weakness etc. I am going to see Dr. Batzdorf at UCLA this coming week...Man I have lots of questions. Anyway I am working in Biotech research still but the pain recently is really making life and work hard. I'm starting to notice myself waddling down the halls now, it's really hard to get up after sitting at the lab bench or a meeting. The pain is becoming distracting. I am really starting to worry about this aspect since I really like what I do and I have 3 kids and a wife to support. My question to you guys is:
Are most of you able to continue to work?
How does this condition affect your ability to continue working as it progresses?
Have any of you seen Dr. Batzdorf?
I play the drums...should I sell them and give up a total love?
I am really bummed about this diagnosis but on the other hand glad to finally figure out a reason for the pain and numbness...now to deal with it!


Ron
ronald64
 
Posts: 17
Joined: Sat Feb 05, 2011 10:39 pm

Re: A new member

Postby chrisw » Sun Feb 06, 2011 1:16 am

Ron,

I am having a bad day so will keep this short.

I am so sorry for you to have to join our community here, that said we welcome you with open arms! Bartzof is rumored to be one of the best but also is getting a bit old. Some great reports and several not so great coming from his patients of late! He was one of the leaders in this field but I guess time catches up on us all...

You hit the nail on the head with pain being a distractionl. Most people don't view pain this way but like you said, its a distraction. Some pain charts use how often you think of it for their ranking of your pain level. For me a level 8 I think of it once every 15 seconds or so.

You might start a pain log and see if any of your symptoms worsen the more you play the drums. This is an analytical way to verify if the drumbs are making things worse or not. A pain log is a good thing anyways!.

Welcome and talk to you soon!
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: A new member

Postby ronald64 » Sun Feb 06, 2011 8:32 am

Thanks Chris-
I fear keeping a pain chart. I'd probably get writer's cramp :lol: I did jam with the gang yesterday and was in a pretty painful state beforehand. I was setting up thinking to myself 'this is really dumb and pointless' as I didn't think I would be able to play through the pain but didn't want to let the guys down and call off the opportunity to play so I kept quiet....I'm still in a bit of denial over this whole thing. Well I am happy to report that playing drums doesn't seem to increase my pain, at least while playing. Playing music and getting into the groove (if you are a musician you know what I mean...it's kind of a hypnotic state) really worked as a kind of analgesic. I didn't think of the pain at all...until I tried to stand up and walk....different story all together. I do find my legs are a little less responsive and there are some rhythms that are more difficult to play now..just laid off some the beats and made it swing a bit more. Walking has become very painful and for the last 3 months my symptoms have really been at a crescendo so it's hard to determine if playing made it worse afterward. I will say last night was tough pain wise and here I am up at 4 am because I can't lay in bed any longer due to the pain.....so it goes.

Up to this point I have only been seen by Radiologists and my Orthopedic Surgeon who performed the surgeries (lamenectomy and fusion, Harrington Rod placement and then removal) 23 years ago. I had MRI and then a myelogram. After the myelogram the orthopod told me I needed to see a Neurosurgeon since orthopods usually stop at the Dura....unless they accidentally cut it. :shock: Dr. Batzdorf will be my intro to Neurosurgeons. I am hoping he can give me a path forward at least. I have read many accounts of people going round and round with the Docs trying to get this thing diagnosed correctly so I feel going to the author of a lot of what's known will give me a more definitive idea of what's happening to my spinal cord....hopefully. I've been chasing this down now since July. I live in the SF Bay Area so getting to UCLA is easy for me. I really need to get some relief since the pain is such a damn problem now ...I know you all know this too well. Hopefully this will be the week I start to get better. Trying to stay positive.

Thanks again

Ron
ronald64
 
Posts: 17
Joined: Sat Feb 05, 2011 10:39 pm

Re: A new member

Postby razzle » Sun Feb 06, 2011 9:24 am

Dr. Batzdorf is an excellant choice as he has been on the medical board for ASAP many times . Usually there is nothing but pain medication for a syrinx unless your flow is blocked and then a shunt is put in.
as far as working , some do and some dont , I have chiari along with the SM and I was in Law-enforcement and it is a very stressful job and stress equals Pain so I couldnt continue.
dont put your drums away just yet . I really dont see how that can hurt unless your arms are painful , but if he finds a pain medication that works for you then I dont see why you can continue playing the drums. Keep us posted . R
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: A new member

Postby ronald64 » Sun Feb 06, 2011 9:36 am

By the way I noticed a post titled "Why don't more men post?" and read a woman who's husband is experiencing this, and wondering what he is going through. Well I am a man...last time I checked.....and 46 so I am still fairly active. I am the father of 3 little girls so I have gotten past the whole macho BS thing....by necessity mind you...only by necessity. My point is if anyone wants to know what the view is like from Mars, I'm around....and Martian :P

Ron
ronald64
 
Posts: 17
Joined: Sat Feb 05, 2011 10:39 pm

Re: A new member

Postby ronald64 » Sun Feb 06, 2011 9:40 am

Thanks Roz. I'll keep you up to date. Appointment is Friday. I'm a little worried about hearing I can't do this and can't do that. But then the pain is also shouting in my ear so reality is slowly setting in. :x

Ron
ronald64
 
Posts: 17
Joined: Sat Feb 05, 2011 10:39 pm

Re: A new member

Postby *Hope* » Sun Feb 06, 2011 10:05 am

Hey Ronald! Welcome to the boards. I'm sorry you're hurting so much. =( It sounds like you're headed to a good doc and that's really the biggest step early on. If there's nothing he can do surgically, then be sure he refers you to a pain doctor. You need something on hand for relief even if you don't take it daily.

Here's the thing with the drums - As long as someone else loads and unloads, then I think you can still play unless you're in too much pain the next day. You know your body and you'll know when it's too much, but I'm guessing that it'll be from setting up and breaking down - and not from playing. You shouldn't be lifting anything even slightly heavy. It'll be hard, but if you follow the lifting rules and don't do anything crazy, then you might be able to do more longer...you know? Sounds like the gang is great and I'm sure they'd help out with no problemo! :)

I hope your appointment goes well.
CM1
*Hope*
 
Posts: 447
Joined: Sun Mar 30, 2008 8:50 am

Re: A new member

Postby chrisw » Sun Feb 06, 2011 3:18 pm

I think some of us men are needed around here (for fear of my life I am not going to list the reasons)!!! Plus what guy wouldn't want to be surrounded by dozens of such awesome women???

Knowledge is power. Too many guys just try to tough it out alone! I'd rather do the best I can and I have learned so much from everyone here!

A pain log can just be did X, felt Y. Many times we don't feel Y until 24 hours after X.

Also, you hit the nail on the head again, distractions are key to pain relief since pain is a distraction itself! My pain doc wants me to continue even brewing/drinking beer!!! Its one of my big hobbies, and all hobbies provide that distraction to pain. If you lay in bed with no distractions your going to hurt all day. Balance as always is key. If I do too much, I can't get out of bed!!!
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

Better News!

Postby ronald64 » Fri Feb 11, 2011 11:50 pm

I flew to LA for the day and saw Dr. Batzdorf. Awesome Doc. Really had gone through everything and had done his homework by the time I got there yet was careful to not solidify an opinion until he completed what I thought was a very thorough neuro exam.
I Don't have SM but instead an arachnoid cyst that is blocking the CSF flow and causing pressure on the nerve roots. No syrinx and it's treatable. I am so relieved. There is hope.
The prayers worked.

Thank you

Ron
ronald64
 
Posts: 17
Joined: Sat Feb 05, 2011 10:39 pm

Re: A new member

Postby chrisw » Sat Feb 12, 2011 10:18 pm

Awesome!!!
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: A new member

Postby azdc » Sat Feb 19, 2011 1:10 am

Ron,
Awesome to hear!!!
I myself have been recently diagnosed with a syrinx from C4-T10 at 5mm in cervical spine. I am in a Kaiser network in N. Cal and hoping that after my 2nd opinion they can agree and Kaiser allows me out of the network to see Dr. Batzdorf.
For the record I am a guy. However my radiology report listed me as female. :)
Al Z
azdc
 
Posts: 4
Joined: Sat Jan 15, 2011 12:16 am
Location: Sacramento

Re: A new member

Postby ronald64 » Sat Feb 19, 2011 10:47 am

I hope you can get in to see him.. He is great. I am not sure how Kaiser works but a friend of mine has Kaiser and got approved for treatment at UCSF for a rare vascular condition. I know they do refer outside of their system occasionally. Good Luck.

Ron
ronald64
 
Posts: 17
Joined: Sat Feb 05, 2011 10:39 pm

Re: A new member

Postby Claudine » Sat Feb 19, 2011 8:01 pm

Hi Ron
This is so confusing. I wonder how one doctor could see a syrinx and Dr. Batzdorf says it's an arachnoiditis cyst. They can't possibly look alike on an MRI.
Claudine
Claudine
 
Posts: 333
Joined: Wed May 20, 2009 11:19 pm

Re: A new member

Postby ronald64 » Sat Feb 19, 2011 11:24 pm

Before I saw Dr. B I was only being seen by my orthopedic surgeon. He never told me I had a syrinx. He said I had a syrinx-like lesion. For lack of a better description on his part. Dr.B was the first neurosurgeon I have seen.

R
ronald64
 
Posts: 17
Joined: Sat Feb 05, 2011 10:39 pm

Re: A new member

Postby Claudine » Sat Feb 19, 2011 11:39 pm

Ok...I was going by your first post : "I have been recently diagnosed with a syrinx ...".
Glad to hear that Dr. Batzdorf has found the cause of your symptoms.
Claudine
Claudine
 
Posts: 333
Joined: Wed May 20, 2009 11:19 pm


Return to ASAP Lounge

Who is online

Users browsing this forum: No registered users and 6 guests

cron