CONFUSED AND SCARED

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CONFUSED AND SCARED

Postby vframe » Sat Jul 14, 2012 7:47 am

i would like to know if anyone has any information good/bad/indifferent on a Dr. Patrick Johnson in Los Angeles. I am having progressive issues with my pain and other problems and my NS Dr. Guy Danielson, who is concerned too, has forwarded all my info to this doctor who will be reviewing it Monday July 16, 2012. I would like to know if anyone has any personal experiences with him. Please.

thank you
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Re: CONFUSED AND SCARED

Postby gunflint » Sat Jul 14, 2012 8:32 am

I don't have any knowledge of this particular doctor. Please keep in mind that you are in charge. Ask him about his experience. Don't let him control the situation. It's your life and your pain. If your are not happy with this guy find another one. I would give him a chance as it sounds like you have confidence in your ns and he's the one forwarding you info. I hope someone who has experience with your new doctor can answer your concerns.
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Re: CONFUSED AND SCARED

Postby razzle » Sat Jul 14, 2012 8:59 am

which dr are you asking about ? I found info on Dr. Johnson but nothing on the other one...
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Re: CONFUSED AND SCARED

Postby vframe » Sat Jul 14, 2012 12:15 pm

the doctor i am asking about is Dr. Patrick Johnson of Mt Cedar Sinai in Los Angelas. thank you for the encouragement, i am needing a lot right now, maybe i am just tired, another bad night, i don't remember the last time i slept all night, or even the last time i slept in my bed. i hurt so bad right now, i will remember that i am in charge but because i don't know how i got this syrinx and why i am having this exacerbation of symptoms and the odd burning pain across my upper back especially when i am touched and all the other "oddities" it scares the hell out of me and no one around me understands, sorry, just feeling sorry for myself, just sucks when i want to get up and clean my house but it hurts to move.
yes i have much faith in my ns. he is very smart, smart enough to tell me he needs to consult someone with more experience and not just start cutting on me.
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Re: CONFUSED AND SCARED

Postby gunflint » Sat Jul 14, 2012 4:47 pm

Your NS sounds like a good man. I'm always impressed by docs who aren't to proud to say "I don't know." How you got the syrinx is really not that important. What is important is that you are being pro-active and moving on getting relief. What helped me out a lot was reading everything I could about CM/SM. I got a lot of encouragement and courage just from reading about the many other people who have been down this road. Some with very good outcomes and some with not so good outcomes. A lot of times my symptoms seem to almost feed on themselves. I get mad at myself for not being able to do some simple tasks like I used to, then the anger can prevent me from sleeping, which in turn wears me out which leads to a more painful day. I know that it is dark and painful where you are right now but try to keep in mind that things will most likely get better and there are a lot of people here that really care about, and understand what you are going through. Hang in there.
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Re: CONFUSED AND SCARED

Postby vframe » Sat Jul 14, 2012 4:59 pm

thank you, i will,
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Re: CONFUSED AND SCARED

Postby phyrehawke » Sun Jul 15, 2012 8:19 pm

VFrame,
Your ID sounds kind of familiar from a long time ago?
I am in the northern part of San Diego Co. and we used to have a support group for some of this area and for CA in general. One of the gals here sees Dr. Batzdorf in LA. He's mostly retired now but he has trained several neurosurgeon's in the area, and I think he still has a practice. Razzle could probably find the phone number for you if you ask her nicely? ;) She so good at that.

Dr. Batzdorf's office could probably refer you to a more knowledgable neurosurgeon close to you, or may consult with your present neurosurgeon on your case? I hear not 100% wonderful things about Dr. Batzdorf from everybody (although my aquaintance that sees him regularly gives him rave reviews), but I hear mostly good about him. One thing I will say about him is that he has many decades of experience in our field and there is no substitute for that.

I can relate to being in so much pain it messes up your sleep, and that in turn can actually make your pain level higher than it would be otherwise. It's a nasty cycle. I managed to get mine back under reasonable control without surgery and without a bunch of pain meds. Although it's not an easy balance to maintain, it's definitely worth the effort.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: CONFUSED AND SCARED

Postby drummergrl » Mon Jul 16, 2012 1:14 pm

I echo their sentiments...hang in there, and just know that things WILL get better. It feels like a very lonely road sometimes, but that's where this board comes in handy. When you feel like no one in your life gets it, rest assured that we're all here for you and can talk you through the rough times.

I definitely struggle with "being in charge" when I'm talking to doctors, especially neurosurgeons, but everyone who says that is right: go in there knowing that you do this, that you can assert yourself and get things accomplished. We're all much stronger than we think we are, and you deserve all the help you can get so that you start feeling better. I really hope this doctor can give you some relief.
CM, SM, Scoliosis
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Re: CONFUSED AND SCARED

Postby vframe » Mon Jul 16, 2012 8:13 pm

drummergrl wrote:I echo their sentiments...hang in there, and just know that things WILL get better. It feels like a very lonely road sometimes, but that's where this board comes in handy. When you feel like no one in your life gets it, rest assured that we're all here for you and can talk you through the rough times.

I definitely struggle with "being in charge" when I'm talking to doctors, especially neurosurgeons, but everyone who says that is right: go in there knowing that you do this, that you can assert yourself and get things accomplished. We're all much stronger than we think we are, and you deserve all the help you can get so that you start feeling better. I really hope this doctor can give you some relief.



thank you for the encouragement. it feels so good to talk to people who not just understand but KNOW my pain and feelings. i am waiting now for this NS in LA to give my NS a report and will go from there. my NS did put me on work restrictions so i can at least maybe get some rest and work on getting my pain and my life back under control while i wait for the report.
again, thank you
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Re: CONFUSED AND SCARED

Postby vframe » Mon Jul 16, 2012 8:18 pm

phyrehawke wrote:VFrame,
Your ID sounds kind of familiar from a long time ago?
I am in the northern part of San Diego Co. and we used to have a support group for some of this area and for CA in general. One of the gals here sees Dr. Batzdorf in LA. He's mostly retired now but he has trained several neurosurgeon's in the area, and I think he still has a practice. Razzle could probably find the phone number for you if you ask her nicely? ;) She so good at that.

Dr. Batzdorf's office could probably refer you to a more knowledgable neurosurgeon close to you, or may consult with your present neurosurgeon on your case? I hear not 100% wonderful things about Dr. Batzdorf from everybody (although my aquaintance that sees him regularly gives him rave reviews), but I hear mostly good about him. One thing I will say about him is that he has many decades of experience in our field and there is no substitute for that.

I can relate to being in so much pain it messes up your sleep, and that in turn can actually make your pain level higher than it would be otherwise. It's a nasty cycle. I managed to get mine back under reasonable control without surgery and without a bunch of pain meds. Although it's not an easy balance to maintain, it's definitely worth the effort.
Rozanne/phyre



thank you for the advice/info, sorry to disappoint you but i am just knew to this site. must just have a familiar name. big question here, please tell me how you managed to get your pain back under control without medications. my syrinx in not large width wise but is long. from c 4/5 to t 17.

my NS put me on work restrictions today so i am now on short term disability and maybe i can try to get things under control now. thank you,
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Re: CONFUSED AND SCARED

Postby gunflint » Tue Jul 17, 2012 9:15 am

Keep all of your options open. I went from short term disability to long term disability to Permanent SSDI. The long term disability can be a financial game changer.
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Re: CONFUSED AND SCARED

Postby vframe » Tue Jul 17, 2012 1:49 pm

thanks gunflint, i will keep my options open, i know i will have to make changes if it progresses to permanent disability, i think i will be ok, i am just a good ol country girl. i don't need much. for whatever reason i have this, i still believe God will provide my needs.
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Re: CONFUSED AND SCARED

Postby phyrehawke » Tue Jul 17, 2012 4:12 pm

Vframe, I was the one that posted on the alternative pain control methods. The acetyl-l-carnetine and alpha lipoid acid supplement often comes together and for some reason it can help me sleep, and I have a major sleep problem. So you might look into it or ask your doc about it? An MD into Alternative medicine put me on it "to help heal my nervous system", but he warned me that's a long term kinda deal, if it would work at all...it was worth trying and wasn't going to hurt me. That it helped my sleep was a side benefit I didn't expect.

I'd recommend you take advantage of your work situation to take it easy for a little bit, travel as little as possible, and that should help some inflammation resolve which might lower your pain level a little bit too...and every little bit helps.
Do your doctors have you on any meds?

Rozanne/phyre
my syrinx is C2 or C4 (depending on who's reading...it's really narrow at the top) to T1, with a hemangioma around T4.
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: CONFUSED AND SCARED

Postby vframe » Tue Jul 31, 2012 10:28 pm

thanks phyrehawke, i will look into that, sorry it has taken me so long to reply, last week was really bad, i had a discogram on monday, 7/31, i am waiting on that report. my NS now thinks a lot of my recent pain is coming from a slightly bulging disc. that may be but i still think it is from the syrinx. i didn't have the bulging disc before and have had pain all along. but we will see i guess.
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Re: CONFUSED AND SCARED

Postby razzle » Wed Aug 01, 2012 3:11 pm

Drs dont seem to think bulging discs are that important , but my NS said on top of my syrinx and chiari it doubles the pain. Not really anything to do for them except surgery if they are really big... I have several . Take care ... Roz
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