Guest guest Posted April 16, 2012 Report Share Posted April 16, 2012 1. ICP more of a diagnostic tool than herniation. In fact, herniation is only a sign, not a diagnostic tool.2. Recognition of ALL the areas of the body that the ICP affects.3. More use of MRI when source of complaint is not found using X-ray or CT (especially PCPs). Lillian SantanaSan , Texas Life is not about waiting for the storms to pass...it's about learning how to Dance in the Rain. To: From: babkane@... Date: Sun, 15 Apr 2012 23:31:34 -0400 Subject: Suggestions needed I am working on a project, and am asking for suggestions. If you had an audience of neurosurgeons, neurologists, and PCPs, what would you want them to be taught about Chiari malformation and syringomyelia. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2012 Report Share Posted April 17, 2012 One thing I wish I could tell Neurosurgeons to get real about is the recovery time on a decompression surgery. My doctor told me I'd be back to work in six weeks! I was just able to slowly turn my head in six weeks, looking up or down was absolutely out of the question. If my job was to sit in a recliner and watch tv, then everything would have worked out. I think three months is much more realistic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2012 Report Share Posted April 18, 2012 I went back to work after 4 months and it tooks me about a year for me to feel like I was under control again. is El Quickero 11. To: " " < > Sent: Tuesday, April 17, 2012 9:24 AM Subject: RE: Suggestions needed  One thing I wish I could tell Neurosurgeons to get real about is the recovery time on a decompression surgery. My doctor told me I'd be back to work in six weeks!  I was just able to slowly turn my head in six weeks, looking up or down was absolutely out of the question. If my job was to sit in a recliner and watch tv, then everything would have worked out. I think three months is much more realistic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2012 Report Share Posted April 18, 2012 I went back to work after about 18 months due to necessity (divorce). I wasn'tsure even that long after surgery that I would be able to do it. So, some seem to recover fairly quickly, while others might take longer. Lillian SantanaSan , Texas Life is not about waiting for the storms to pass...it's about learning how to Dance in the Rain. To: From: el_quickero_q500@... Date: Tue, 17 Apr 2012 17:55:44 -0700 Subject: Re: Suggestions needed I went back to work after 4 months and it tooks me about a year for me to feel like I was under control again. is El Quickero 11. To: " " < > Sent: Tuesday, April 17, 2012 9:24 AM Subject: RE: Suggestions needed One thing I wish I could tell Neurosurgeons to get real about is the recovery time on a decompression surgery. My doctor told me I'd be back to work in six weeks! I was just able to slowly turn my head in six weeks, looking up or down was absolutely out of the question. If my job was to sit in a recliner and watch tv, then everything would have worked out. I think three months is much more realistic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2012 Report Share Posted April 18, 2012 Was supposed to get a facet injection tomorrow, but due to a sore throat, earache and slight fever I have to reschedule... for AUGUST. I was sure hoping to see if I could get off some meds. Especially Neurontin, as I feel it is a major contributor to my memtory and concentration problems. Oh, well. Oh top of that I had a killer headache at the base of my skull. Felt like one of those weather-related problems under discussion lately, but the local weather shows nothing. Again, oh, well. Lillian SantanaSan , Texas Life is not about waiting for the storms to pass...it's about learning how to Dance in the Rain. To: From: el_quickero_q500@... Date: Tue, 17 Apr 2012 17:55:44 -0700 Subject: Re: Suggestions needed I went back to work after 4 months and it tooks me about a year for me to feel like I was under control again. is El Quickero 11. To: " " < > Sent: Tuesday, April 17, 2012 9:24 AM Subject: RE: Suggestions needed One thing I wish I could tell Neurosurgeons to get real about is the recovery time on a decompression surgery. My doctor told me I'd be back to work in six weeks! I was just able to slowly turn my head in six weeks, looking up or down was absolutely out of the question. If my job was to sit in a recliner and watch tv, then everything would have worked out. I think three months is much more realistic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2012 Report Share Posted April 18, 2012 I went back to work on day 27 {1 week shy of 4 weeks} Aimee Plano, Texas Symptomatic at age 12 / 1986 Misdiagnosed for 19 yrs Fought with 9 neurologists and 5 neurosurgeons for 4 ½ years Surgery 12/15/09 Back at work in 27 days Currently Working two jobs and Organizing the Dallas / Fort Worth Conquer Chiari Walk Across America From: [mailto: ] On Behalf Of is Villarreal Sent: Tuesday, April 17, 2012 7:56 PM To: Subject: Re: Suggestions needed I went back to work after 4 months and it tooks me about a year for me to feel like I was under control again. is El Quickero 11. From: Rukavena <californiacroatian@... <mailto:californiacroatian%40yahoo.com> > To: " <mailto:%40yahoogroups.com> " < <mailto:%40yahoogroups.com> > Sent: Tuesday, April 17, 2012 9:24 AM Subject: RE: Suggestions needed One thing I wish I could tell Neurosurgeons to get real about is the recovery time on a decompression surgery. My doctor told me I'd be back to work in six weeks! I was just able to slowly turn my head in six weeks, looking up or down was absolutely out of the question. If my job was to sit in a recliner and watch tv, then everything would have worked out. I think three months is much more realistic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2012 Report Share Posted April 18, 2012 That is great , congratulations!! This is the start of a new beginning!!! LAURA De: is Villarreal Responder a: < > Fecha: Tue, 17 Apr 2012 17:55:44 -0700 (PDT) Para: " " < > Asunto: Re: Suggestions needed I went back to work after 4 months and it tooks me about a year for me to feel like I was under control again. is El Quickero 11. From: Rukavena <californiacroatian@... <mailto:californiacroatian%40yahoo.com> > To: " <mailto:%40yahoogroups.com> " < <mailto:%40yahoogroups.com> > Sent: Tuesday, April 17, 2012 9:24 AM Subject: RE: Suggestions needed One thing I wish I could tell Neurosurgeons to get real about is the recovery time on a decompression surgery. My doctor told me I'd be back to work in six weeks! I was just able to slowly turn my head in six weeks, looking up or down was absolutely out of the question. If my job was to sit in a recliner and watch tv, then everything would have worked out. I think three months is much more realistic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2012 Report Share Posted April 18, 2012 Yes! I agree that Doctor's may think about the recovery process and be a little realistic because the 6 weeks is too short for patients to recover from the trauma that is experienced by the patient during the surgery. I think each patient is special and the healing process is experienced differently by different individuals. I, for example went back to work after 3 months and I could not sit and use the computer for 4 hours, I actually had to be taken off work due to the pain and stiffness for 6 months-( I also have Occipital Neuralgia which causes a lot of pain). I was going to physical therapy during those 3 months and my neck was so stiff and driving was just a problem. > > I went back to work on day 27 {1 week shy of 4 weeks} > > > > Aimee > > Plano, Texas > > Symptomatic at age 12 / 1986 > > Misdiagnosed for 19 yrs > > Fought with 9 neurologists and 5 neurosurgeons for 4 ½ years > > Surgery 12/15/09 > > Back at work in 27 days > > Currently Working two jobs and Organizing the Dallas / Fort Worth Conquer Chiari Walk Across America > > > > From: [mailto: ] On Behalf Of is Villarreal > Sent: Tuesday, April 17, 2012 7:56 PM > To: > Subject: Re: Suggestions needed > > > > > > I went back to work after 4 months and it tooks me about a year for me to feel like I was under control again. > > is El Quickero 11. > > From: Rukavena <californiacroatian@... <mailto:californiacroatian%40yahoo.com> > > To: " <mailto:%40yahoogroups.com> " < <mailto:%40yahoogroups.com> > > Sent: Tuesday, April 17, 2012 9:24 AM > Subject: RE: Suggestions needed > > > One thing I wish I could tell Neurosurgeons to get real about is the recovery time on a decompression surgery. > My doctor told me I'd be back to work in six weeks! > I was just able to slowly turn my head in six weeks, looking up or down was absolutely out of the question. > If my job was to sit in a recliner and watch tv, then everything would have worked out. I think three months is much more realistic. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2012 Report Share Posted April 21, 2012 I would like to see standard procedures for syringomyelia. Every doctor has a different opinion. Small syrinx no problem, small syrinx can cause problems. The symptoms. Some say not related to syringomyelia, others say from it. The reaserchers seem to have the most info but cant see patients unless under protocol. Who teaches or updates the experts as to what they know? It seems as if they are all on a different pages. If you have chiari and syrinx, they treat, but if just syrinx and no other structural issues, you are dismissed as somatic, even from the experts? Thanks for taking the time to try and make a difference. Tom... Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
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