Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 Hi , How is your recovery going? Hope good. > > > > Subject: Tethered Cord surgeon needed > To: tetheredspinalcord > Date: Tuesday, May 17, 2011, 10:17 PM > > > Â > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in head,neck, and lower back, burning in hips, some convulsions, urinary infections, dizziness and unstable, etc... She has recently been diagnosed with tethered cord syndrome and told needed surgery. We are having a hard time finding neurosurgeons experienced with this and are willing to travel anywhere. Anyone heard good or bad about The Chiari Institute in New York or Hopkins in land? Also, I don't understand the surgery - we were told the doctor cuts the cord in half - is this correct? Thank you for your help. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 I had a good experience for both decompression surgery for Chiari and tethered cord surgery at the Chiari Institute. Ray From: tetheredspinalcord [mailto:tetheredspinalcord ] On Behalf Of stvtm Sent: Wednesday, May 18, 2011 4:35 PM To: tetheredspinalcord Subject: Re: Tethered Cord surgery Hi , How is your recovery going? Hope good. > > > > Subject: Tethered Cord surgeon needed > To: tetheredspinalcord <mailto:tetheredspinalcord%40yahoogroups.com> > Date: Tuesday, May 17, 2011, 10:17 PM > > > Â > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in head,neck, and lower back, burning in hips, some convulsions, urinary infections, dizziness and unstable, etc... She has recently been diagnosed with tethered cord syndrome and told needed surgery. We are having a hard time finding neurosurgeons experienced with this and are willing to travel anywhere. Anyone heard good or bad about The Chiari Institute in New York or Hopkins in land? Also, I don't understand the surgery - we were told the doctor cuts the cord in half - is this correct? Thank you for your help. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 4 weeks post op and I'm doing really good. I started driving last week and I'm working a bit. PT 3x week and I'm working hard to get my muscles stronger. Big milestones..... I was able to do the eliptical, which I couldnt do before the surgery, because my leg was too weak to push through. I'm working a lot on balance and strengthing my ankles and it's paying off because I was able to wear a 2 inch wedge shoe today :-). Nice not to have my pants dragging along the ground. My back muscles still hurt and are weak, so sitting is still uncomfortable and driving is really tough. I think the best thing though is my emotional state. It is such a change of attitude to know that when I exercise now it it doing me good, not hurting myself more. Before the surgery I was so concerned that any activity I did would be aggrevating my nerves and causing more damage. Also, the scar pain I've had forever at the site of my original surgery is GONE!  Subject: Re: Tethered Cord surgery To: tetheredspinalcord Date: Wednesday, May 18, 2011, 4:35 PM  Hi , How is your recovery going? Hope good. > > > > Subject: Tethered Cord surgeon needed > To: tetheredspinalcord > Date: Tuesday, May 17, 2011, 10:17 PM > > >  > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in head,neck, and lower back, burning in hips, some convulsions, urinary infections, dizziness and unstable, etc... She has recently been diagnosed with tethered cord syndrome and told needed surgery. We are having a hard time finding neurosurgeons experienced with this and are willing to travel anywhere. Anyone heard good or bad about The Chiari Institute in New York or Hopkins in land? Also, I don't understand the surgery - we were told the doctor cuts the cord in half - is this correct? Thank you for your help. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Ray, which surgeon did your tethered cord surgery and did the surgery help your symptoms? Thanks, > > > > > > From: sean0029 <kh98@> > > Subject: Tethered Cord surgeon needed > > To: tetheredspinalcord > <mailto:tetheredspinalcord%40yahoogroups.com> > > Date: Tuesday, May 17, 2011, 10:17 PM > > > > > > Â > > > > > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years -pain > in head,neck, and lower back, burning in hips, some convulsions, urinary > infections, dizziness and unstable, etc... She has recently been diagnosed > with tethered cord syndrome and told needed surgery. We are having a hard > time finding neurosurgeons experienced with this and are willing to travel > anywhere. Anyone heard good or bad about The Chiari Institute in New York or > Hopkins in land? Also, I don't understand the surgery - we were > told the doctor cuts the cord in half - is this correct? Thank you for your > help. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Hi, , I had my initial Chiari surgery done by Drs. Milhorat and Bolognese in 2005. It was decompression surgery and they stabilized my neck with titanium bars. After hearing about the connection between Chiari and tethered cord syndrome, I had the tethered cord surgery done by the same doctors in 2007. I have since been diagnosed with connective tissue disorder by Dr. Francomano in 2008. As far as alleviating symptoms, I have to say that the decompression surgery freed up space in my skull and got rid of the migraine type headaches that came when I strained. The tethered cord surgery initially was good, but since then, I have had a lot of muscle soreness and tightness. Actually, I will be going back to New York for some more MRIs on Monday to see if I have re-tethered. I will also be going back to see Dr. Francomano in Baltimore after that to see where the connective tissue situation has gone. In my opinion, neither surgery was presented as a total cure, but rather to alleviate progression of the Chiari. To that end, it was successful. I hope that this helps. Let me know if you need more information. Ray From: tetheredspinalcord [mailto:tetheredspinalcord ] On Behalf Of sean0029 Sent: Wednesday, May 18, 2011 9:48 PM To: tetheredspinalcord Subject: Re: Tethered Cord surgery Ray, which surgeon did your tethered cord surgery and did the surgery help your symptoms? Thanks, > > > > > > From: sean0029 <kh98@> > > Subject: Tethered Cord surgeon needed > > To: tetheredspinalcord <mailto:tetheredspinalcord%40yahoogroups.com> > <mailto:tetheredspinalcord%40yahoogroups.com> > > Date: Tuesday, May 17, 2011, 10:17 PM > > > > > > Â > > > > > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years -pain > in head,neck, and lower back, burning in hips, some convulsions, urinary > infections, dizziness and unstable, etc... She has recently been diagnosed > with tethered cord syndrome and told needed surgery. We are having a hard > time finding neurosurgeons experienced with this and are willing to travel > anywhere. Anyone heard good or bad about The Chiari Institute in New York or > Hopkins in land? Also, I don't understand the surgery - we were > told the doctor cuts the cord in half - is this correct? Thank you for your > help. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Unfortunately, a lot has happened with the TCI since 2005. There have been several malpractice lawsuits, they've been under investigation and one of the founders I believe retired. They do not have a good track record with post-op and/or pain management care, after surgery. They bill in a way that makes it " out of network " for majority of patients, causing them to pay staggeringly high medical bill fees -- b/c they do not bill through normal insurance channels. My recommendation would be to steer clear of them. If you do a search through the message database there are other previous postings regarding other people's experiences with the TCI. Also see Jenn's recent reply. In saying this, I don't discount Ray had a good experience with them. I'm just leery of their un-ethical practices. , if you're wife is looking for a good Nsg I would say to send her films once you have them to Dr. Frim at Univ of Chicago, Dr. Fukes at Duke and Dr. Jallo or Carson at s Hopkins or Dr. Cheryl Ann Muszynski at University of Madison in Madison, WI. If you're in the Boston area, there are a few good Nsg's at MGH with experience with TSC as well as Dr. Chi at Brigham and Women's. There are a few good surgeons in NYC area as well, check out the INN at Beth Israel. Where did you say you are from ? -- TSC Group Moderator > > > > > > > > > From: sean0029 <kh98@> > > > Subject: Tethered Cord surgeon needed > > > To: tetheredspinalcord > <mailto:tetheredspinalcord%40yahoogroups.com> > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > Date: Tuesday, May 17, 2011, 10:17 PM > > > > > > > > > Â > > > > > > > > > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years > -pain > > in head,neck, and lower back, burning in hips, some convulsions, urinary > > infections, dizziness and unstable, etc... She has recently been diagnosed > > with tethered cord syndrome and told needed surgery. We are having a hard > > time finding neurosurgeons experienced with this and are willing to travel > > anywhere. Anyone heard good or bad about The Chiari Institute in New York > or > > Hopkins in land? Also, I don't understand the surgery - we were > > told the doctor cuts the cord in half - is this correct? Thank you for > your > > help. > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Georgia > > > > > > > > > > > > From: sean0029 <kh98@> > > > > Subject: Tethered Cord surgeon needed > > > > To: tetheredspinalcord > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > > Date: Tuesday, May 17, 2011, 10:17 PM > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years > > -pain > > > in head,neck, and lower back, burning in hips, some convulsions, urinary > > > infections, dizziness and unstable, etc... She has recently been diagnosed > > > with tethered cord syndrome and told needed surgery. We are having a hard > > > time finding neurosurgeons experienced with this and are willing to travel > > > anywhere. Anyone heard good or bad about The Chiari Institute in New York > > or > > > Hopkins in land? Also, I don't understand the surgery - we were > > > told the doctor cuts the cord in half - is this correct? Thank you for > > your > > > help. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Jenn on the list lives in Atlanta area. Perhaps she can suggest someone in GA who can assist you. > > > > > > > > > > > > > > > From: sean0029 <kh98@> > > > > > Subject: Tethered Cord surgeon needed > > > > > To: tetheredspinalcord > > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > > > Date: Tuesday, May 17, 2011, 10:17 PM > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years > > > -pain > > > > in head,neck, and lower back, burning in hips, some convulsions, urinary > > > > infections, dizziness and unstable, etc... She has recently been diagnosed > > > > with tethered cord syndrome and told needed surgery. We are having a hard > > > > time finding neurosurgeons experienced with this and are willing to travel > > > > anywhere. Anyone heard good or bad about The Chiari Institute in New York > > > or > > > > Hopkins in land? Also, I don't understand the surgery - we were > > > > told the doctor cuts the cord in half - is this correct? Thank you for > > > your > > > > help. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Thank you for validating my experiences. Ray From: tetheredspinalcord [mailto:tetheredspinalcord ] On Behalf Of hollygolightly1916 Sent: Thursday, May 19, 2011 10:31 AM To: tetheredspinalcord Subject: Re: Tethered Cord surgery Unfortunately, a lot has happened with the TCI since 2005. There have been several malpractice lawsuits, they've been under investigation and one of the founders I believe retired. They do not have a good track record with post-op and/or pain management care, after surgery. They bill in a way that makes it " out of network " for majority of patients, causing them to pay staggeringly high medical bill fees -- b/c they do not bill through normal insurance channels. My recommendation would be to steer clear of them. If you do a search through the message database there are other previous postings regarding other people's experiences with the TCI. Also see Jenn's recent reply. In saying this, I don't discount Ray had a good experience with them. I'm just leery of their un-ethical practices. , if you're wife is looking for a good Nsg I would say to send her films once you have them to Dr. Frim at Univ of Chicago, Dr. Fukes at Duke and Dr. Jallo or Carson at s Hopkins or Dr. Cheryl Ann Muszynski at University of Madison in Madison, WI. If you're in the Boston area, there are a few good Nsg's at MGH with experience with TSC as well as Dr. Chi at Brigham and Women's. There are a few good surgeons in NYC area as well, check out the INN at Beth Israel. Where did you say you are from ? -- TSC Group Moderator > > > > > > > > > From: sean0029 <kh98@> > > > Subject: Tethered Cord surgeon needed > > > To: tetheredspinalcord <mailto:tetheredspinalcord%40yahoogroups.com> > <mailto:tetheredspinalcord%40yahoogroups.com> > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > Date: Tuesday, May 17, 2011, 10:17 PM > > > > > > > > > Â > > > > > > > > > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years > -pain > > in head,neck, and lower back, burning in hips, some convulsions, urinary > > infections, dizziness and unstable, etc... She has recently been diagnosed > > with tethered cord syndrome and told needed surgery. We are having a hard > > time finding neurosurgeons experienced with this and are willing to travel > > anywhere. Anyone heard good or bad about The Chiari Institute in New York > or > > Hopkins in land? Also, I don't understand the surgery - we were > > told the doctor cuts the cord in half - is this correct? Thank you for > your > > help. > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Dr. Frim is amazing. However I suggest you have a LONG discussion with him and his nurses about your pain management expectations. He gave me a lower morphine dose, and the nurses were terrible on my floor.My husband had to yell at them multiple times because they took 2+ hours to refill my morphine pump and I was crying. Also I had to call security on them when I was readmitted (not able to urinate) when they didn't give me ANY pain meds 5 days after surgery, nevermind that I was on morphine 3-4 months before the actual surgery took place.Security was called and from what I heard those nurses have been replaced, I was there in Feb and one of their staff told me they had multiple complaints on that floor. I guess you want to have those conversations anywhere you go though! Subject: RE: Tethered Cord surgery To: tetheredspinalcord Date: Thursday, May 19, 2011, 12:30 PM  Thank you for validating my experiences. Ray From: tetheredspinalcord [mailto:tetheredspinalcord ] On Behalf Of hollygolightly1916 Sent: Thursday, May 19, 2011 10:31 AM To: tetheredspinalcord Subject: Re: Tethered Cord surgery Unfortunately, a lot has happened with the TCI since 2005. There have been several malpractice lawsuits, they've been under investigation and one of the founders I believe retired. They do not have a good track record with post-op and/or pain management care, after surgery. They bill in a way that makes it " out of network " for majority of patients, causing them to pay staggeringly high medical bill fees -- b/c they do not bill through normal insurance channels. My recommendation would be to steer clear of them. If you do a search through the message database there are other previous postings regarding other people's experiences with the TCI. Also see Jenn's recent reply. In saying this, I don't discount Ray had a good experience with them. I'm just leery of their un-ethical practices. , if you're wife is looking for a good Nsg I would say to send her films once you have them to Dr. Frim at Univ of Chicago, Dr. Fukes at Duke and Dr. Jallo or Carson at s Hopkins or Dr. Cheryl Ann Muszynski at University of Madison in Madison, WI. If you're in the Boston area, there are a few good Nsg's at MGH with experience with TSC as well as Dr. Chi at Brigham and Women's. There are a few good surgeons in NYC area as well, check out the INN at Beth Israel. Where did you say you are from ? -- TSC Group Moderator > > > > > > > > > From: sean0029 <kh98@> > > > Subject: Tethered Cord surgeon needed > > > To: tetheredspinalcord <mailto:tetheredspinalcord%40yahoogroups.com> > <mailto:tetheredspinalcord%40yahoogroups.com> > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > Date: Tuesday, May 17, 2011, 10:17 PM > > > > > > > > > Â > > > > > > > > > > > > Hi everyone. My wife (36) has had unexplained symptoms for two years > -pain > > in head,neck, and lower back, burning in hips, some convulsions, urinary > > infections, dizziness and unstable, etc... She has recently been diagnosed > > with tethered cord syndrome and told needed surgery. We are having a hard > > time finding neurosurgeons experienced with this and are willing to travel > > anywhere. Anyone heard good or bad about The Chiari Institute in New York > or > > Hopkins in land? Also, I don't understand the surgery - we were > > told the doctor cuts the cord in half - is this correct? Thank you for > your > > help. > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 , Yep, I'm here in the ATL. I had my surgery done by Dr. Mapstone at Egleston (the surgeries were done at EUH since I was in my 20s at the time and Egleston only takes patients up to 21). He was the chief of pedi neurosurgery at Egleston. He has since moved on to OK. ish Rite has a SB clinic. You may want to contact the nsg that works with the clinic and see if he will see adult patients. How I found Dr. Mapstone - I called the CHOA referral line (404-250-KIDS) and asked who they would refer a parent of a child with SB/TC to and they said Dr. Mapstone. I contacted his off and asked if he saw adult patients. They initially said no, but then referred me to his RN and I left a message and asked. He indeed did see adult patients, but only those that had severe enough cases. He agreed to take my case. If you are desperate to stay in ATL, then those are the steps I would take to find a NSG locally. HOWEVER, if I were in the position of needing surgery again (I've had 3) I would go to Dr. Frim in Chicago and/or Dr. Fuchs in NC and let one of them do the surgery. Dr. Fuchs isn't too far from home, and I think, more experienced with TC in adults (seems our ATL MDs don't really take too many adult cases, compared to these two). I had my first surgery at Piedmont and my last two at EUH. I have to say that in both instances ,the nursing staff was excellent. More so at EUH - my MD did absolutely FABULOUS at managing my pain and the RNs on 3G neuro were awesome (I got to know them quite well in the 6 months when I had my last two surgeries). I spent Christmas with them. Just a great, compassionate, talented group there (at least they were in 2002-2003). Please don't hesitate to message me offlist if there is anything else you want to talk about. Jenn On Thu, May 19, 2011 at 12:16 PM, hollygolightly1916 wrote: > > > Jenn on the list lives in Atlanta area. Perhaps she can suggest someone in > GA who can assist you. > > > > > > > > > > > > > > > > > > > > From: sean0029 <kh98@> > > > > > > Subject: Tethered Cord surgeon needed > > > > > > To: tetheredspinalcord > > > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > > > <mailto:tetheredspinalcord%40yahoogroups.com> > > > > > > Date: Tuesday, May 17, 2011, 10:17 PM > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > > > > > Hi everyone. My wife (36) has had unexplained symptoms for two > years > > > > -pain > > > > > in head,neck, and lower back, burning in hips, some convulsions, > urinary > > > > > infections, dizziness and unstable, etc... She has recently been > diagnosed > > > > > with tethered cord syndrome and told needed surgery. We are having > a hard > > > > > time finding neurosurgeons experienced with this and are willing to > travel > > > > > anywhere. Anyone heard good or bad about The Chiari Institute in > New York > > > > or > > > > > Hopkins in land? Also, I don't understand the surgery - we > were > > > > > told the doctor cuts the cord in half - is this correct? Thank you > for > > > > your > > > > > help. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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