New Patient- Intro

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Re: New Patient- Intro

Postby airsense00 » Fri Dec 10, 2010 8:13 am

Thanks again. The first two days I found out about this has put my famy in to a wreck. I am emotionally better starting the day today but yet to get an appointment with anyone set in stone. I guess I would like to know which doctors lean TOWARDS surgery rather than not. I do not want to be druged up and told to wait it out till things get worse. I would like to keep my job but if my arm gets anymore numb I will be out of work. So getting surgery has risks but I am a risky type and would rather try and get my symptoms to stop or reverse now before permanent nerve damage occurs and I am stuck. Does Dr. Frim or any of the other docs or mayo clinic lean towards surgery? Thanks for your input again and will pay it forward.
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
airsense00
 
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Location: Michigan

Re: New Patient- Intro

Postby karenb » Sat Dec 11, 2010 10:52 am

Dave,

Welcome to the group!

Check out http://www.asap.org - they have a great new patient booklet that they send out free of charge. They also have transcriptions of the ASAP medical conferences (held each summer) for sale - lots of good info in those.

I was diagnosed in 2007 - once I figured out how to spell what I had, I started trying to find information on the internet. To be honest, it was downright terrifying, so I stopped. My primary doctor gave me some really good advice:
You have a serious medical condition, but there is more to life than your illness. Don't become a medical addict, focusing only on research and news - it will potentially frighten you and will definitely take time away from other more enjoyable pursuits. Focus your energy on making the most of each day you have.

The course of my own condition has made be a true believer in what he told me, and I try to follow it whenever I make a decision about what to do or skip. (Example: DO take the trip to Royal Gorge, but DO NOT bungee jump off the bridge!)

Best wishes in the days and weeks to come!

Karen
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Re: New Patient- Intro

Postby airsense00 » Fri Dec 17, 2010 4:38 pm

Hey yall hope all is well.

I saw a great NS in michigan today and he diagnosed me with CM1 and SM. He said that since I have some symptoms I will need to get surgery so we have scheduled a suboccipital craniotomy and C1 laminatomy decompression. My surgery is Feb 2nd. He believes the surgery will stop the symptoms from getting worse and probably help the SM go down. I am a bit relieved to finally know what I have and a little axious and nervous to get it done. This will be my first major surgery ever. Can anyone give me tips from the decompression surgery they had and or their experiences post op. Thanks!
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 debh » Sun Dec 19, 2010 8:48 am

easy does it-i was diagnosed 6 years ago and went to see dr. ed benzel-said syrinx not my problem-went to docs at un of penn and jefferson in philly next-TCI, dr. vez, dr. ellenbogen in seattle viewed my mris-to say the least i have seen the best-i wanted them to fix me!!!! all said no surgery-syrinx small-losts of space in spine no csf flow obstruction in cervical-fibromyalgia diagnosed by benzel 6 years ago=i wanted to blame all my stuff on the syrinx -all said i will not be paralyzed-TCI said 10% of problems due to syrinx-90% anxiety-6 years later-syrinx is stable-actually smaller-sympthoms basicsically same-fought for 6 years-no quick fix-acceptance and i finally gave in to anti-anxiety meds-acceptance-got intermittent family leave at my job-started finally to take care of m,yself-learned to say no=can not expect others to take care ofme or know what i AM going thru-i am responsible for me-i am going to TCI in feb-but it is no such a dire situation anymore-and i want to live now -i am not my diagnosis-realized-yeh surgery can make me worse-Just for today works-there are things-triggers-that make me worse-everyone is different-told to me from a specialist-i did not listen to him until 6 years later-i do noy want you to put your life on hold for 6 years!! easy does it
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Re: New Patient- Intro

Postby angie7 » Sun Dec 19, 2010 7:35 pm

I'm glad you found a doctor and got a proper dx but is this doctor a specialist in CM? How many decompression surgeries for CM has he preformed? success rate? These are questions you need to ask. Many doctors make claims that they can do these surgeries but sadly, many are not familiar enough with our condition to do a good job. I know a lady that has had multiple brain surgeries b/c she trusted a doctor that was not a specialist. I highly recommend Dr Frim in Chicago or Dr Menezes in Iowa.
A friend of mine had surgery with Dr Frim and went from not being able to work to 100% back to normal. My specialist is Dr Oro in Colorado who is among the leading specialists. Please, I beg of you, get to a specialist, not just any ns will do.

Good luck.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Re: New Patient- Intro

Postby airsense00 » Sun Dec 19, 2010 8:44 pm

I am going with Dr. Malik at the Henry Ford Hospital. He has been a NS for 40 years and is highly regarded. He said he does 8-10 of these surgeries a year and 3 total surgeries a week. He knew everything about CM and SM and explained it all to me, most of which I already knew from researching myself. He explained the three schools of thought for the proceedure. One is to do a decompression and nothing else. The second is to do the decompression and put in a patch made from parts of the skull, the third is to actually trim the tonsils (but risking brain damage). He does number 2 and has had a very good sucess rate. He said of all the patients he has seen only one had to come back for a second surgery because of scarring that started to do the same thing as the CM.

I did consider Dr. Frim but his office wants 2 more MRIs just to make an appointment. I had the cervical and thoracic but Dr. Frim's office wants the brain with CSF flow study, and a lumbar too. My primary doc will not order these tests, he said that Dr. Frim's office should accept me as a patient and order them. So I was kind of turned off from that. I am sure he is a great doc though. The only other thing about Dr. Frim is he is primarily a pediatric surgeon, only accepts a few adults from time to time.

If all goes well with my doc I will let you know and hopefully I can say to everyone looking in the michigan/detroit area that we have a new CM/SM specialist.
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
airsense00
 
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Joined: Thu Dec 09, 2010 11:10 am
Location: Michigan

Re: New Patient- Intro

Postby angie7 » Mon Dec 20, 2010 10:13 am

In all honesty, you should have a full spine and brain mri along with a csf flow study done prior to surgery. I personally would not let anyone touch me surgery wise without having all these done. We are like a puzzle and without these tests, it's like you are missing pieces of the puzzle. Just b/c you have a herniation, doesn't mean that is causing your symptoms. Csf flow restriction is the problem thus why the flow study is an important test to have done prior to surgery. A brain mri is a good idea b/c even though you can see the bottom part of your brain with a cervical mri, the entire brain needs to be examined b/c there could be something else causing the herniation, thus why it's important to have a brain mri. A lumbar mri is important to check for tethered cord which can cause CM. If you have tethered cord and they do the decompression surgery, guess what? you will continue to herniate, thus why it's important to have a lumbar mri.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Re: New Patient- Intro

Postby keggler 1 » Mon Dec 20, 2010 3:52 pm

Hello and welcome as well......I agree with Angie,I had all the tests,and x rays done, plus a consult with a cardiologist and urologist and a psych consult before the surgery. (same as your Drs option).I have had good luck healing,and altho I'm almost 60....my problems are manageable.

I had my 3 year check-up with my Dr (Rosner),on Thursday and he said he loves it when a plan works. He said all he could offer me was new x rays,and some exercises, but didn't feel it was necessary.I feel better than I did 10 years ago,and have never looked back.It was a good salutations and I thank him everyday for his knowledge and God given talent.

Good luck...Jerry in Carolina...
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