Thanks for the information. I live in upstate NY and will be traveling over 6 hours one way for the consultation. I found so much relief by your and others' inputs and advice. I am seeing Dr. Raymond Sekula. I've heard many good things about him. Thank you for responding to my question/discussion.
Angie
Karen926 said:
I have been there for 3 procedures. They are the best and that's why I travel to the other side of the state. Dr. Lunsford did my rhizotomy 2 years ago. I would tell every TN person to go to Pittsburgh. Good luck and please let me know the doctors name, I'm curious
I'm sorry you did not have a good experience. I'm really hoping my experience will be different. I'm going on 3/31 to see Dr. Sekula. Wish me luck!
Mary A. Fazio said:
I have and I was not too happy with them. My surgeon didn't even do my surgery ( I found out two years later) and the surgeon that did, I never even met! His name was Horowitz. The MVD did not work. There is a doctor named Ray Sekula who is supposed to very good. I had my 2nd surgery in Philadelphia. Dr. John Y.K. Lee and you can find him through Penn Medicine. Excellent dr, care and hospital.
If you are going all the way to Pittsburgh, maybe you live there, you should try the Cleavland Clinic! I heard they are excellent!
Thanks for sharing your two experiences. I have an appointment with Dr. Sekula at UPMC on 3/31. From others and you, it sounds like I have the right doctor at least. I am hoping for the best - which would be little or no pain and little or no meds. I know I'm asking for a miracle, but that's what I really really hope happens. My husband (who is my best friend still after 30 years) and I agreed that we'd hear Dr. Sekula's options and make a decision before we leave the consultation. We need to move forward with our lives and we are hoping Dr. Sekula will help us with this.
I appreciate hearing your stories - which I know have not been easy. I wish you a painfree and medical free future!
Angie
Paula said:
Hi Angie, I can share two stories about doctors in the Pittsburgh area. One has already been mentioned: Dr. Ray Sekula at UPMC in Oakland. He performed a rhizotomy on Nov. 20, 2013 and aside from numbness on my face, I am 85% pain free - and I've been off all meds since Jan, 2014. I have twinges, but not the horrendous 30-40 minute painful episodes I had before. He seems to know what he is doing.
On the other hand, I also had a rhizotomy performed in June, 2011 by Dr. Jack Wilberger of AGH in Pittsburgh. The pain immediately afterwards was terrible. Two weeks later, he performed a MVD and I had little or no pain for apprx. 3 months, but I was still on meds. After that, the pain came back tenfold! I was up to a max dosage on Neurontin and tegretol. He then prescribed dilaudid and told me when the pain subsided, he would give me a nerve section. after taking one dose of 4 mg of dilaudid, I had an acute pancreatitis attack and spent 4 days in the hospital.
That's when I went to see Dr. Sekula. He said I was a long way from a nerve section and then performed the rhizotomy. I believe you should see Dr. Sekula and at least talk to him about your options.
I have an appointment with Dr. Sekula on 3/31. Thanks for your advice! I'm having the MRI they need at 6:30 on the same day. I couldn't get one around where I live that met their specifications. I have had MRIs and CTs done previously that I am taking with me to the consultation. Hopefully it will be enough to get things started.
Angie
Gail C said:
I Highly recommend Dr. Raymond Sekula UMPC; also if you can get into him Peter Janetta still sees patients on a limited basis (the originator of the Janetta Procedure of MVD) Also Michael Horowitz. You can't go wrong with any of them. Just make sure you have a Fiesta MRI done to their specifications before you see any of them. They have to see the image to make any final course of action and if you have it done ahead of time you can get your answers in your 1 consultation. I can't say enough good things about UMPC. Good luck!
Thanks for the information, and sharing your experience. You and others have made me very comfortable and confident that I am going to the right place and seeing the right surgeon (Dr. Sekula). I feel I am finally getting the right help I need to deal with this.
Angie
Not Again said:
I had my first MVD in Pittsburgh in 1998 at UPMC. Dr. Peter Jannetta was my surgeon, but I beieve he has since retired. They have an excelllent neuro department. Very caring staff all the way around. They also utilize very specific MRIs pre-op. Wish I could have gone back there for my second MVD in 2006, instead I had to go to the Cleveland Clinic d/t insurance. My care was all around inferior to what I received at Presby UPMC. My first night was horrific and no one seemed to care that I was in excruciating pain, plus they brought a poor woman into my room (not a private room) who just yellled all night long. I wanted to die....literally. Additionally, my pain relief only lasted about 9 months. I will NEVER go back to the world renowned Cleveland Clinic. Their care sucks, unless you are a sultan from the Middle East.
Please continue to plan on sharing your experience and I'll do the same. I'm seeing Dr. Sekula on Monday, 3/31. Looking forward to it and hoping I am not discouraged. It's about a 6 hour drive on way, so we'll be spending the night. I'm hoping to be back on line by the end of the week with an update.
Good luck on your appointment.
Angie
chickee said:
I've been planning on calling myself. The doctor I am calling is Dr. Raymond Sekula. University of Pittsburgh. I live around 45 minutes from Pittsburgh, so we'll see. I had planned on sharing once I actually saw him. Good Luck.
Is Dr. Sekula in the Kaufman building? My husband has an appointment on 3/31 as well in the Kaufman building to see Dr. Mitchell and Dr. Orie. His appointment is at 1pm. It would be nice if we could meet. Maybe this is a stupid question but what is a Fiesta MRI? My husband had his MRI done at our local hospital, I hope it meets their specifications. Hope all goes well with your appointment.
Angie, you are in good hands, now it's time to "let go and let God", what will be will be. Even thought he decided surgery wasn't my best option, I felt like I got the right answer. After seeing Dr. Sekula and if all goes well, are you having surgery on Tuesday? Of is this just a consultation? One recommendation, when I went in for my consultation with Dr. Sekula I was extremely exhausted physically and mentally. I was on mind bending medications and very weak and once I heard he did not recommend surgery as a best option for me, my world started spinning, I had my Mom with me, but we both caught about 1/4 or what he said and he told me don't worry I will write all this down; but that didn't happen. And the hour he spent with me, most of it was lost because my mind just couldn't wrap around it and retain the information. I highly recommend bring a recording device, you can use your phone if necessary. Of course, ask for his permission, but that would give you a reference to refer back to once you leave and are saying... what did he just tell us? I actually recommend this for any doctor's visit where you are seeking advice, we can only write notes so fast and if you are writing notes, you are missing what the next thing is he is saying.
If you have a chance, tell him and/or Ann hello for me and that I am still struggling with pain, but am grateful for the time and assistance and most importantly the CARING both he and Ann gave to me. My time with them was invaluable. Keep up posted. I will be thinking of you over the next few days.
When you have your apt with Dr. Sekula ask him questions. Like what can happen if it doesn't work. What about the possibilities of getting Anesthesia Dolorosa? Have many questions ready.
Angie said:
Hi Not Again:
Thanks for the information, and sharing your experience. You and others have made me very comfortable and confident that I am going to the right place and seeing the right surgeon (Dr. Sekula). I feel I am finally getting the right help I need to deal with this.
Angie
Not Again said:
I had my first MVD in Pittsburgh in 1998 at UPMC. Dr. Peter Jannetta was my surgeon, but I beieve he has since retired. They have an excelllent neuro department. Very caring staff all the way around. They also utilize very specific MRIs pre-op. Wish I could have gone back there for my second MVD in 2006, instead I had to go to the Cleveland Clinic d/t insurance. My care was all around inferior to what I received at Presby UPMC. My first night was horrific and no one seemed to care that I was in excruciating pain, plus they brought a poor woman into my room (not a private room) who just yellled all night long. I wanted to die....literally. Additionally, my pain relief only lasted about 9 months. I will NEVER go back to the world renowned Cleveland Clinic. Their care sucks, unless you are a sultan from the Middle East.