Guest guest Posted July 22, 2011 Report Share Posted July 22, 2011 Hi , Did he not have someone take over his patients? My daughter has always had only one follow up and then more if needed but you still want to know you are under someone's care should problems arise!! Good luck. PS Where do you live? Randee In a message dated 7/22/2011 7:10:18 A.M. Central Daylight Time, huffmang70@... writes: Hi, I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left the clinic before I was able to have my follow up MRIs and appointment. Here I am going on 10 months post op with NO follow up. I really need to find a good doctor that will do a follow up for me... does anyone have a recommendations?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2011 Report Share Posted July 22, 2011 , I keep a spreadsheet online of doctors that members are aware of. I am traveling right now, but as soon as I am stationary I will send the link. Regards, Sent via BlackBerry by AT & T doctor recommendation Hi, I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left the clinic before I was able to have my follow up MRIs and appointment. Here I am going on 10 months post op with NO follow up. I really need to find a good doctor that will do a follow up for me... does anyone have a recommendations?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2011 Report Share Posted July 22, 2011 , It will probably be harder to find a MD to do the follow up from another MD's surgery. Not impossible, probably just more difficult. Your best bet is probably going to be to stay with the same office. I'm sure the Cleveland Clinic has other neurosurgeons who will take over Dr. Di's cases for him. Typically that is what an office will do if a MD leaves - another MD in the office will take over his/her cases. I'm surprised the clinic never called you to schedule a follow up appointment with one of the other MDs in the office. Actually, I'm surprised that you left the office after your last post-op appointment without having a follow up scheduled. Then again... are you still having problems that the surgery did not correct? Its not that common to do follow up MRIs post-op if the surgery resolved/corrected/improved the symptoms you were having pre-op. When I had my first surgery to correct the TC and diastematomyelia, I had three post-op follow up appointments. The first was to remove the stitches and make sure my incision was healing properly. I think I got my Rx for PT at this appointment. The second was supposed to be for a final review of the surgical site and to do a physical/neuro exam. He was also going to release me to return to work full time. But I didn't feel comfortable returning to full duty (I had a very physical job with a lot of heavy lifting), so he released me to light duty (which didn't exist, so basically I was off work for another month). Since I didn't get released to work at this appointment, I had a third follow up scheduled for 2 months post-op for the final review and basically just to do one final check and make sure i felt comfortable to return to full duty at work and get my letter releasing me to return to work without restrictions. If I had felt strong enough to return to work at my second post-op visit, that would have been my last. No follow up MRIs were scheduled. I also didn't have any new neuro symptoms from the surgery and much of my pre-op pain had improved. The only time a follow up MRI was scheduled was when I contacted his office 4 months post-op because I had a return of the same pain I had pre-op which was the reason I had the surgery to begin with. If I had not called with the return of the pain, I would not have had the MRI. Once someone has had TC surgery, any follow up MRIs are very difficult to use diagnostically. Generally, future Dx of retether is based largely on symptoms. The MD may do a MRI, but that is just to check to see if there is an obvious retether on the MRI, or, what would be more obvious, would be the development of some other complication, such as hydrosyringomyelia, a syrinx, etc. Retethers are very difficult to tell based on a standard MRI alone after an untethering surgery. Retethers are largely Dx based on symptoms. Additionally, after an untethering surgery, future untetherings are generally based on symptoms. It is quite common for anyone who has been surgically untethered to retether to the scar tissue. But, this new tether and scar tissue are with the cord in its higher position, and the tension is not on the cord as it was with the initial tether. Future untethering surgeries are undertaken for symptomatic retethers. An asymptomatic retether is generally left well enough alone... until it becomes symptomatic and causes new or increased symptoms (pain or neurological decline). Since you had your surgery done at Cleveland Clinic, I think your best bet would be to contact the neurosurg office and let them know you were one of Dr. Di's patients and ask who is taking over his cases. Let them know the post-op appointments you had and ask if any additional appointments are needed. If you are having new symptoms or unresolved pain, let them know what is going on and have them schedule an appointment for you with the MD that has taken over Dr. Di's cases. If you are not having any new symptoms and they tell you that you don't need further follow up from neurosurgery, and you still want someone to monitor your case, then you can try to contact the neurology department at the Cleveland Clinic and let them know you had untethering surgery there. That neurosurgery has released you and you would like to schedule an appointment to meet with a neurologist to follow up. Often neurosurgery will only see those patients that need nerurosurgery. If they have done the surgery, and you are not a neurosurgical case, they will refer you back to your PCP, neurologist or physiatrist (frequently whoever referred you to them) for follow up. Once your surgical site has healed and if no further surgery is required, neurosurgery is kind of out of the picture. They only deal with the surgical side of it. Once everything is healed, it is frequently turned (back) over to the referring physician or neurologiy or a physiatrist for long term follow up. Best place to start is to call CC's neurosurgery department. Explain that you had untethering surgery with Dr. Di on XX/XX/XX date. You had x, y, z follow up appointments after your surgery. Ask if there are further appointments needed from them and if so , who is taking over Dr. Di's cases. If they say no further appointments are needed from neurosurgery, then call your referring MD and see if they want a follow up MRI or get a referral to neurology (or a physiatrist) for long term management of your case and any unresolved/new symptoms. When you have your first appointment, bring your pre-op MRI and surgical notes and ask them if they think a follow up MRI is needed. If you are having new symptoms, then neurosurgery may still not order a new MRI. They may consider that something that needs to be evaluated by neurology first to determine if it is a surgical case before they will see it. But, start with the steps above and it should get you to the correct MD in the correct Dept. Best of luck! Jenn > ** > > > Hi, > I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left > the clinic before I was able to have my follow up MRIs and appointment. Here > I am going on 10 months post op with NO follow up. > > I really need to find a good doctor that will do a follow up for me... > > does anyone have a recommendations?? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2011 Report Share Posted July 22, 2011 Thank you and Randee for your kindness!! Randee, I live in Ohio.... Jenn, as I stated in my post, I HAVE NOT had a post op appointment at all. Dr. Di left before I was able to have an appointment. I was only writing for any help on doctors. A lot of times people have doctors that they really like and like to share that information. I do know the difference between Neurologists and Neurosurgeons...but thank you. Dr. Di did have another doctor in the office at the Cleveland Clinic but I would not let that doctor touch with a ten foot pole. thanks anyway > > > ** > > > > > > Hi, > > I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left > > the clinic before I was able to have my follow up MRIs and appointment. Here > > I am going on 10 months post op with NO follow up. > > > > I really need to find a good doctor that will do a follow up for me... > > > > does anyone have a recommendations?? > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2011 Report Share Posted July 22, 2011 My NS wanted to see me at 6 weeks (had stitches out earlier by my GP), 3 months, 6 months and 1 year post op. That is the standard with him. I did end up having a follow-up MRI but that is because I was so much worse after surgery (am so much better now). Otherwise, like Jenn said, he wouldn't have done one. Dee> To: tetheredspinalcord > From: jlbobin@... > Date: Fri, 22 Jul 2011 08:51:34 -0400 > Subject: Re: doctor recommendation > > , > > It will probably be harder to find a MD to do the follow up from another > MD's surgery. Not impossible, probably just more difficult. Your best bet is > probably going to be to stay with the same office. I'm sure the Cleveland > Clinic has other neurosurgeons who will take over Dr. Di's cases for him. > Typically that is what an office will do if a MD leaves - another MD in the > office will take over his/her cases. I'm surprised the clinic never called > you to schedule a follow up appointment with one of the other MDs in the > office. Actually, I'm surprised that you left the office after your last > post-op appointment without having a follow up scheduled. > > Then again... are you still having problems that the surgery did not > correct? Its not that common to do follow up MRIs post-op if the surgery > resolved/corrected/improved the symptoms you were having pre-op. When I had > my first surgery to correct the TC and diastematomyelia, I had three post-op > follow up appointments. The first was to remove the stitches and make sure > my incision was healing properly. I think I got my Rx for PT at this > appointment. The second was supposed to be for a final review of the > surgical site and to do a physical/neuro exam. He was also going to release > me to return to work full time. But I didn't feel comfortable returning to > full duty (I had a very physical job with a lot of heavy lifting), so he > released me to light duty (which didn't exist, so basically I was off work > for another month). Since I didn't get released to work at this appointment, > I had a third follow up scheduled for 2 months post-op for the final review > and basically just to do one final check and make sure i felt comfortable to > return to full duty at work and get my letter releasing me to return to work > without restrictions. If I had felt strong enough to return to work at my > second post-op visit, that would have been my last. No follow up MRIs were > scheduled. I also didn't have any new neuro symptoms from the surgery and > much of my pre-op pain had improved. The only time a follow up MRI was > scheduled was when I contacted his office 4 months post-op because I had a > return of the same pain I had pre-op which was the reason I had the surgery > to begin with. If I had not called with the return of the pain, I would not > have had the MRI. > > Once someone has had TC surgery, any follow up MRIs are very difficult to > use diagnostically. Generally, future Dx of retether is based largely on > symptoms. The MD may do a MRI, but that is just to check to see if there is > an obvious retether on the MRI, or, what would be more obvious, would be the > development of some other complication, such as hydrosyringomyelia, a > syrinx, etc. Retethers are very difficult to tell based on a standard MRI > alone after an untethering surgery. Retethers are largely Dx based on > symptoms. Additionally, after an untethering surgery, future untetherings > are generally based on symptoms. It is quite common for anyone who has been > surgically untethered to retether to the scar tissue. But, this new tether > and scar tissue are with the cord in its higher position, and the tension is > not on the cord as it was with the initial tether. Future untethering > surgeries are undertaken for symptomatic retethers. An asymptomatic retether > is generally left well enough alone... until it becomes symptomatic and > causes new or increased symptoms (pain or neurological decline). > > Since you had your surgery done at Cleveland Clinic, I think your best bet > would be to contact the neurosurg office and let them know you were one of > Dr. Di's patients and ask who is taking over his cases. Let them know the > post-op appointments you had and ask if any additional appointments are > needed. If you are having new symptoms or unresolved pain, let them know > what is going on and have them schedule an appointment for you with the MD > that has taken over Dr. Di's cases. > > If you are not having any new symptoms and they tell you that you don't need > further follow up from neurosurgery, and you still want someone to monitor > your case, then you can try to contact the neurology department at the > Cleveland Clinic and let them know you had untethering surgery there. That > neurosurgery has released you and you would like to schedule an appointment > to meet with a neurologist to follow up. Often neurosurgery will only see > those patients that need nerurosurgery. If they have done the surgery, and > you are not a neurosurgical case, they will refer you back to your PCP, > neurologist or physiatrist (frequently whoever referred you to them) for > follow up. Once your surgical site has healed and if no further surgery is > required, neurosurgery is kind of out of the picture. They only deal with > the surgical side of it. Once everything is healed, it is frequently turned > (back) over to the referring physician or neurologiy or a physiatrist for > long term follow up. > > Best place to start is to call CC's neurosurgery department. Explain that > you had untethering surgery with Dr. Di on XX/XX/XX date. You had x, y, z > follow up appointments after your surgery. Ask if there are further > appointments needed from them and if so , who is taking over Dr. Di's cases. > If they say no further appointments are needed from neurosurgery, then call > your referring MD and see if they want a follow up MRI or get a referral to > neurology (or a physiatrist) for long term management of your case and any > unresolved/new symptoms. When you have your first appointment, bring your > pre-op MRI and surgical notes and ask them if they think a follow up MRI is > needed. > > If you are having new symptoms, then neurosurgery may still not order a new > MRI. They may consider that something that needs to be evaluated by > neurology first to determine if it is a surgical case before they will see > it. But, start with the steps above and it should get you to the correct MD > in the correct Dept. > > Best of luck! > > Jenn > > > > > ** > > > > > > Hi, > > I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left > > the clinic before I was able to have my follow up MRIs and appointment. Here > > I am going on 10 months post op with NO follow up. > > > > I really need to find a good doctor that will do a follow up for me... > > > > does anyone have a recommendations?? > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2011 Report Share Posted July 23, 2011 Hi , Here is the list of doctors. Hope this helps. https://spreadsheets.google.com/spreadsheet/ccc?key=0AvcMIYlwXrSAdGRRQ2ExdFF3S0d\ sdWJkZXpjUi05dkE & hl=en_US & authkey=CMaj56gP#gid=0 Anyone else, feel free to add to this. ________________________________ To: tetheredspinalcord Sent: Friday, July 22, 2011 11:18 AM Subject: Re: doctor recommendation  Thank you and Randee for your kindness!! Randee, I live in Ohio.... Jenn, as I stated in my post, I HAVE NOT had a post op appointment at all. Dr. Di left before I was able to have an appointment. I was only writing for any help on doctors. A lot of times people have doctors that they really like and like to share that information. I do know the difference between Neurologists and Neurosurgeons...but thank you. Dr. Di did have another doctor in the office at the Cleveland Clinic but I would not let that doctor touch with a ten foot pole. thanks anyway > > > ** > > > > > > Hi, > > I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left > > the clinic before I was able to have my follow up MRIs and appointment. Here > > I am going on 10 months post op with NO follow up. > > > > I really need to find a good doctor that will do a follow up for me... > > > > does anyone have a recommendations?? > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2011 Report Share Posted July 23, 2011 thank you so much for the list just FYI....you may want to take Dr Di off of your list since he is no longer there thanks again > > > > > ** > > > > > > > > > Hi, > > > I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left > > > the clinic before I was able to have my follow up MRIs and appointment. Here > > > I am going on 10 months post op with NO follow up. > > > > > > I really need to find a good doctor that will do a follow up for me... > > > > > > does anyone have a recommendations?? > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2011 Report Share Posted July 23, 2011 , I would contact Frim, MD, PhD in Chicago at U of Chicago. He is my son's NS. He is fantastic. We also live in NW OH and the drive is not bad. Good Luck, G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2011 Report Share Posted July 23, 2011 , How long ago was your sons surgery and how has the outcome been? Thanks, > > > > , > I would contact Frim, MD, PhD in Chicago at U of Chicago. He is my son's NS. He is fantastic. We also live in NW OH and the drive is not bad. > > Good Luck, > G. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2011 Report Share Posted July 23, 2011 , How are you doing? Do you consider the surgery successful, are your symptoms resolved? I understand it is really difficult to find a Dr. to trust with this. > > Hi, > I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left the clinic before I was able to have my follow up MRIs and appointment. Here I am going on 10 months post op with NO follow up. > > I really need to find a good doctor that will do a follow up for me... > > does anyone have a recommendations?? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2011 Report Share Posted July 24, 2011 Hi , I also have Chiari Malformation and the symptoms from this are the ones that are better. Now the symptoms from the TC are worse. and I can not find a comfortable sitting or sleeping position at all I really just need to find another doctor. Have you had surgery?? > > > > Hi, > > I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left the clinic before I was able to have my follow up MRIs and appointment. Here I am going on 10 months post op with NO follow up. > > > > I really need to find a good doctor that will do a follow up for me... > > > > does anyone have a recommendations?? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 Hi , I have not taken the surgery leap yet. I am so sorry your TC symptoms are worse, did they just start to worsen. Maybe you need an MRI to check for scar tissue formation. I have pulling sensation in back with sleeping/sitting positions. Do you have any of that since surgery. > > > > > > Hi, > > > I had TC surgery September 2010, by Dr. Di at the Cleveland Clinic. He left the clinic before I was able to have my follow up MRIs and appointment. Here I am going on 10 months post op with NO follow up. > > > > > > I really need to find a good doctor that will do a follow up for me... > > > > > > does anyone have a recommendations?? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 , My son had surgery a little ofver 3 years ago. He was almost 12 at the time. He is now 15 and has done well. He will need one more surgery when he finishes growing. Dr. Frim has been great. He responds quickly to emails and even emails with my son. > > > > > > > > , > > I would contact Frim, MD, PhD in Chicago at U of Chicago. He is my son's NS. He is fantastic. We also live in NW OH and the drive is not bad. > > > > Good Luck, > > G. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 , Did your son have the surgery done by scope or did he have a full open laminectomy? > > > > > > > > > > > > , > > > I would contact Frim, MD, PhD in Chicago at U of Chicago. He is my son's NS. He is fantastic. We also live in NW OH and the drive is not bad. > > > > > > Good Luck, > > > G. > > > > > > Quote Link to comment Share on other sites More sharing options...
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