Aa
Went To NS Visit
This is tattie35 had to change my screen name to tattie36 forgot my password but anyway went to see Dr. Di today and the MRI revealed,,,,,, that everything is ok that is why I'm not understanding where all these weird symptoms are coming from.... the dizziness, the tingling in the arms vibrations going through my body, Could someone please give me some advice on what I should do?
Just wanted to say...that I found a little difference in attitude in my own NS too when I had a followup and told him that some things still felt wrong. I definitely felt like it was cut and dry...he had done what he was supposed to and that there was nothing else wrong. Not to say that in my case there is, I don't know for sure what my final outcome will be but I know what Wolf means when you say it's like breaking up with a good friend...I sort of felt that too. I think because of my own horrible experience with Dr's..when I finally found one to help, I think I put him on a pedestal...like he could always help me. What I've come to realize is many Drs are just humans like you and I and I think they do get nervous b/c they do take a chance when they do the surgery...and they hope for the best possible outcome. But I just wanted to say that I understand the feeling..
Tattie..even though he is a well know Dr in regards to Chiari, if you feel like you are not getting the answers you need, then you need to keep looking for another opinion. Good luck!
Carolyn
Tattie..even though he is a well know Dr in regards to Chiari, if you feel like you are not getting the answers you need, then you need to keep looking for another opinion. Good luck!
Carolyn
COMMUNITY LEADER
Hi...regarding Dr Di...with all the issues that TCI and Dr Rosner have had, it is not a stretch that in the Chairi awareness month that diff state boards of medicine r leaning on these good drs and making their work a little harder.
As a human, it is not always easy to hide how uncomfortable this makes them.......and, he may be waiting to see where this may be headed.....
I am assuming...and suggesting...I do not know what is going on...just seems like a issue other chiari drs have dealt with recently.
I really feel we need to be well informed even to see a chiari dr....even more so than one that is uninformed.....
We have to protect us first......
"selma"
As a human, it is not always easy to hide how uncomfortable this makes them.......and, he may be waiting to see where this may be headed.....
I am assuming...and suggesting...I do not know what is going on...just seems like a issue other chiari drs have dealt with recently.
I really feel we need to be well informed even to see a chiari dr....even more so than one that is uninformed.....
We have to protect us first......
"selma"
Seems we have a few of the good Doc's patients on here.
Lu.... While I personally do intend to get a second opinion on some of the things happening. I personally am not sure 'cross off' the doctor is in order. We are all imperfect human beings here as are the Doctors. My feelings are apprehensive maybe even a bit anxious but as has been mentioned here he is very good at his job. This past visit- well don't know what to say about that. Maybe when you get in next week he will be back to normal.
Wolf
Lu.... While I personally do intend to get a second opinion on some of the things happening. I personally am not sure 'cross off' the doctor is in order. We are all imperfect human beings here as are the Doctors. My feelings are apprehensive maybe even a bit anxious but as has been mentioned here he is very good at his job. This past visit- well don't know what to say about that. Maybe when you get in next week he will be back to normal.
Wolf
Same here, I'm hoping it was just a bad day. My gut doesn't really belive that. But he really is a very good surgeon. One that Chiarians and others really don't need to see go away. Whatever, bad day, whatever hopefully he'll work through it.
For now I must go else where though.
For now I must go else where though.
Wow wolf.... I have an apointment there on sept 13th. Now I am nervous he was such a breath of Greg air compared to the others I hav seen I would hate to have to cross off yet another doc. He had been "away" the past few weeks they told me. Which I thought was weird not on vacation not out of the office but away. I sure hope verything is ok chiarians can't afford to loose any of the good advocates
WOW sounds like something wierd has gone on there with Dr Di, i see his name everywhere and heard all good things, wonder why he was so shady.
Other than that, yes always good to get your films of MRIs, that's way you have them there ready to take to a 2nd, 3rd or even 4th opinion.
Other than that, yes always good to get your films of MRIs, that's way you have them there ready to take to a 2nd, 3rd or even 4th opinion.
Please understand, not that it will help you feel any better... sorry I wish that the power was mine to make us all feel better. But I asked about the films as it seemed from your post that your MRI was done at the Cleveland Clinic, correct?
In my experience with them their Radioligist report specified both why the MRI was done as well as partial results. I say partial as pre-op for me all my other MRI reports noted a large cyst where as CCF reports say a 'possible' cyst. The cyst is now nearly 4 times the size it was a year ago... whatever that's a different story.
Do you have an account setup with Cleveland Clinic on 'My Charts'? If so, you can request from Dr Di's nurse to have your test results posted in the my charts account. I see you have already requested the films, that is good they will also show the report.
As for Dr Di..... it is with long pause that I say this.... but after our last visit with him .... well I don't question his degree of skill at the operating table. He is very good there. And in the past has always been very personable with us as well as a listening ear and knowledgeable. HOWEVER, the reason I asked about the reports from the MRI have to do with my own recent experience. Something is not right there.... Dr Di appeared to me to following the crowd of non-Drs with some of his comments the other day. Perhaps it was just an off day I thought, the idea did also run through my head that "Hey I have to recognize that I do have a degree of brain damage and as such don't always 'see reality' when speaking with folks." But that isn't the case here. I know so because the person who came with me voice this to me yesterday. They first asked me how I felt about Dr Di and the visit. I responded that I am very confused as in the past he seemed to know what he was talking about and this time it felt as though he knew but was protecting himself for some reason. The response I got floored me as it is how I felt leaving his office. My friend said that it seemed as though he was scared of something and was not going to admit he even knew anything about the case.
That he was running scared.
I hate to even say that... and maybe I shouldn't but frankly I've told a lot of people to go see him as my prior experience has been nothing but wonderful. But not this time! After this visit I have serious doubts about him... that is like breaking up with a very good friend. But it is the truth right now I do not trust his judgement. That is why your post made me ask about the reports. The reports could contain verbage that may help you to understand a bit of what is going on. And perhaps he was just having a bad day....
In my experience with them their Radioligist report specified both why the MRI was done as well as partial results. I say partial as pre-op for me all my other MRI reports noted a large cyst where as CCF reports say a 'possible' cyst. The cyst is now nearly 4 times the size it was a year ago... whatever that's a different story.
Do you have an account setup with Cleveland Clinic on 'My Charts'? If so, you can request from Dr Di's nurse to have your test results posted in the my charts account. I see you have already requested the films, that is good they will also show the report.
As for Dr Di..... it is with long pause that I say this.... but after our last visit with him .... well I don't question his degree of skill at the operating table. He is very good there. And in the past has always been very personable with us as well as a listening ear and knowledgeable. HOWEVER, the reason I asked about the reports from the MRI have to do with my own recent experience. Something is not right there.... Dr Di appeared to me to following the crowd of non-Drs with some of his comments the other day. Perhaps it was just an off day I thought, the idea did also run through my head that "Hey I have to recognize that I do have a degree of brain damage and as such don't always 'see reality' when speaking with folks." But that isn't the case here. I know so because the person who came with me voice this to me yesterday. They first asked me how I felt about Dr Di and the visit. I responded that I am very confused as in the past he seemed to know what he was talking about and this time it felt as though he knew but was protecting himself for some reason. The response I got floored me as it is how I felt leaving his office. My friend said that it seemed as though he was scared of something and was not going to admit he even knew anything about the case.
That he was running scared.
I hate to even say that... and maybe I shouldn't but frankly I've told a lot of people to go see him as my prior experience has been nothing but wonderful. But not this time! After this visit I have serious doubts about him... that is like breaking up with a very good friend. But it is the truth right now I do not trust his judgement. That is why your post made me ask about the reports. The reports could contain verbage that may help you to understand a bit of what is going on. And perhaps he was just having a bad day....
Neurologist.=NL. Dis u ask Dr Di about referral for u. The Cleveland clinic has some food NLs. He might be able to point u in another direction. Also there are ar least 100 conditions that have those same symptoms. Without testing it is so hard to dx. I am sorry you are still without answers. I would make sure you have a list of symptoms you are experiencing and maybe make an appintment qith your GP. Have him/her review them and than not leave until they do any necessary tests it may give u answers but at least it would rule out things that it is not.......
This may not help but that is what I had to do to start. Not MS, not a tumor, not an anursym, ECG..........
Good luck I hope u get ur answers soon
This may not help but that is what I had to do to start. Not MS, not a tumor, not an anursym, ECG..........
Good luck I hope u get ur answers soon
I was not trying to see if I was a surgical candidate... I just wanted ANSWERS to why my body is going through this. Can you tell me what is a NL because I am desperate to have more testing done by someone that knows for sure about this condition.
COMMUNITY LEADER
Hi...sorry u had a problem with ur password, there is a way u can create a new password...do contact MH and let them know as the MODS may see u have 2 accounts.
CW is right in asking do u have ur films....u can get another opinion.
Not everyone that has chiari is a surgical candidate...and a NS will not be able to assist u in what to do next...u need a very well informed NL to do more testing to see what IS going on.
"selma"
CW is right in asking do u have ur films....u can get another opinion.
Not everyone that has chiari is a surgical candidate...and a NS will not be able to assist u in what to do next...u need a very well informed NL to do more testing to see what IS going on.
"selma"
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