Due to my inability to handle any of the meds for very long (Lyerica made me a mess; Cymbalta doesn't seem to do anything for the burning intense pain for my ATN), I am being referred to the TN specialists in Pittsburgh, PA. I'm not sure of the name of the hospital/university as this just happened on Friday and they are getting my information around, but I am told they are the best on the East Coast of US. Has anyone been there? Any thoughts/experiences you can share? Thanks! Angie
Hi Angie, yes I was there to see the neurosurgeon. You are probably be going to the Presbyterian Medical Center site of the main hospital. I was there for TN but I also have a benign brain tumor which the docs don't know if it is the tumor or not. Before it was a likely reason now it's questionable...therefore, if you are going to see a TN specialist and not a neurosurgeon please let me know how it goes. I searched online 2 days ago and found the TN specialist but now wondering why the neurosurgeon didn't refer me. UPMC is considered the premier center for this kind of care...they are very caring and helpful there...the entire staff...anyone you meet. Just be to the hospital way before your appointment, parking is tough to find and the walking to the right department can be challenging or just time consuming. I wish you the best!!
I just had my husband taken by ambulance last Thursday to UPMC Presby in Pittsburgh as we live only 30 miles north of there. He was admitted thru the ER, was examined by several neurologists in the ER then again once they got him in his room. He has been having severe debilitating pain for months now with this. They put him on lamictal, 25mg once a day for a week, then increase to 2 a day for a week then 2 twice a day for thereafter. He has MS and we also see Dr. Mitchell down there for that. The lamictal seems to keep him awake. He is on tegretol, the max dose, neurontin, and baclofen which the neurologists said are all the drugs used to help TN. They said he is pretty much maxed out on all the meds for TN and we need to contact a neurosurgeon and will no doubt require surgery to alleviate this pain that has taken control of his life. He slept all the time on the tegretol and has lost so much function he now requires assistance with all his daily care. They also ordered him physical therapy to try to regain this.His TN episodes do not seem to be as severe but again he has not been on this drug only 3 days now. He has a large lesion on his cervical spine which but they tell us is not active. They did a spinal tap while there and we had 2 MRI disc that we took, he had them done the week before this that Dr. Mitchell ordered. He is the best neurologist we have ever met along with the others in his group. They told us the only medication that works on TN pain is antiseizure medications. They also give us the group of neurosurgeons to call. I feel totally comfortable with these doctors. We are very fortunate and blessed we live so close. Parking is a problem and can take awhile and if you drive a truck that is very high it will not fit in some of the garages. Your best bet is to get valet parking where they drop you off at the door and come back and pick you up. God bless all of you out there dealing with TN.
Hi prudence I also have a
Prudence said:
Hi Angie, yes I was there to see the neurosurgeon. You are probably be going to the Presbyterian Medical Center site of the main hospital. I was there for TN but I also have a benign brain tumor which the docs don’t know if it is the tumor or not. Before it was a likely reason now it’s questionable…therefore, if you are going to see a TN specialist and not a neurosurgeon please let me know how it goes. I searched online 2 days ago and found the TN specialist but now wondering why the neurosurgeon didn’t refer me. UPMC is considered the premier center for this kind of care…they are very caring and helpful there…the entire staff…anyone you meet. Just be to the hospital way before your appointment, parking is tough to find and the walking to the right department can be challenging or just time consuming. I wish you the best!!
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
Hi Karen , when you say rhizotomy is that with the needle or actually go in and cut the nerve ?
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!
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 wish you the best of luck.
Paula
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!
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.
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.
I had my MVD in 2009 at UPMC. Excellent neuro team and VERY caring staff as you stated. I did my research online and decided UPMC was my best option. Was to the point of not being able to talk without 40 minute episodes & communicated mostly via computer. Had no life. After my surgery I was pain free and still am except for some issues that are showing up. I noticed you said you had your "first" MVD in 1998. Does that mean it didn't last and if that is the case would you tell me what happened and how long it did last? I'm scared to death this will return even though the doctors said it wouldn't. I also would like to put this out there: I have not flown (used to fly with job) since my MVD. I noticed before my surgery when I flew it triggered the TN if it was dormant so I made a decision never to fly after the surgery just to be on the safe side. Has anyone had any issues flying after having the MVD procedure? If so, what? I appreciate responses, Barbara
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.
Barbara - My MVD in 1998 left me pain free for almost 9 years. But then one day, the same tooth pain and burning pain on the roof of my mouth that started the whole thing returned. Along with it, it also brought eye pain, stabbing feeling in the inner corner of my eye and a constant dull pain within my eye. Decided to have a repeat MVD done (and wish I could have gone to Pittsburgh for it). They said that the teflon pads they put in to cushion the nerve had slipped out of place and there was a lot of scar tissue that was pulling on the nerve. They placed new pads and cleaned up the scar tissue and I awoke free of TN pain...although I thought my head would explode and they gave me inadequate pain medication for it...but that's another whole story. My painfree bliss only lasted for 9 months this time. The exact same pains returned. I then had a radiosurgery procedure (like Gamma knife) done..but it did nothing except scramble my memories (although they said this would NOT happen) and make my forehead a little numb. I figure there is probably more scar tissue that has formed and is pulling on the nerve. Since then I have been trying diferent medications, in an attempt to find one that does not give me horrific side effects AND controls my pain. So far, my best option has just been oxycontin to take the edge off the constant pain. I only take 10 mg twice a day now, although I had been at a much higher dose, I have been able to wean down to a low dose. I still have breakthrough pain almost daily though. I also take clonazepam 0.5 mg at night and usually can sleep pain free all night...until I get up and open my mouth :(
Hopefully you will be one of the lucky ones that never have a recurrence. I would try not to worry about it though....if it's going to happen, it will and worrying will not help. I had actually forgotten all about my TN...until the day I felt that unmistakeable pain again. And I knew immediately what it was.
Best of luck to you and try to just enjoy being pain free and not worry about what you have no control over.
Barbara Massey said:
I had my MVD in 2009 at UPMC. Excellent neuro team and VERY caring staff as you stated. I did my research online and decided UPMC was my best option. Was to the point of not being able to talk without 40 minute episodes & communicated mostly via computer. Had no life. After my surgery I was pain free and still am except for some issues that are showing up. I noticed you said you had your "first" MVD in 1998. Does that mean it didn't last and if that is the case would you tell me what happened and how long it did last? I'm scared to death this will return even though the doctors said it wouldn't. I also would like to put this out there: I have not flown (used to fly with job) since my MVD. I noticed before my surgery when I flew it triggered the TN if it was dormant so I made a decision never to fly after the surgery just to be on the safe side. Has anyone had any issues flying after having the MVD procedure? If so, what? I appreciate responses, Barbara
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.
Dr Jannetta has retired.
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!
I had an MVD in July of 2010 by Dr. Raymond Sekula. At that time he was at Allegaheny General with Dr. Peter Jannetta's staff. He trained under him. I believe he does know his stuff. However I have had much trouble since. But he tells me I have a severly damaged nerve. Not much else to do for it. I now have Anesthesia Dolorosa. But I will say every time I email him he quickly responds after 4 yrs.
He has also called me at home several times, even once on a Sat. morning. So he is very good to respond, which I appreciate because I'm pretty desperate with pain and have no one else to help me. So I do recommend him
All of this is after I waited too long to have the MVD, (10yrs). I will always believe I should hve had it done sooner. I also had Gamma Knife 2 yrs. before MVD. I think I was to far gone with damage to the nerve before the MVD, Just don't wait too long as I did.
Hi Everyone. Thank you so much for your inputs. I am sorry I have not responded before now. I have been busy trying to get my medical records, insurance, intermittent family leave, and work/home life straightened out. I have an appointment with Dr. Raymond Sekula at UMPC on Monday, March 31. I do not have to be pre-certified for tests, so I am having the special MRI done Monday morning at 6:30, then seeing Dr. Sekula at 9AM. I have to say, I am a little scared, but I feel so much more confident and relaxed with everyone's inputs. I'll definitely let everyone know how things go. Please pray for me and think of me Monday in hopes that Dr. Sekula can help me achieve pain relief without the heavy doses of medication - whether that mean the MVD or other medical procedures. I'm ready... Angie
Thank you, Gail, for your input. I really appreciate your insights and recommendation. I have an appt with Dr. Sekula on 3/31. I'll respond to this post later in the week to let you know how I make out.
saraiderin said:
Dr Jannetta has retired.
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, Santafered.
I too, may have gone the wrong route. I had Cyberknife in October 2012. Worked for about 3 months, now I'm in constant pain again. I'm hoping I have a better outcome, than you have had, unfortunately. Thanks for the advise. I'm really praying for relief from all this... at least less pain so I can actually work and live without so much meds I cannot function and/or so much pain I cannot function. It's very demoralizing, isn't it?
Angie
santafered said:
I had an MVD in July of 2010 by Dr. Raymond Sekula. At that time he was at Allegaheny General with Dr. Peter Jannetta's staff. He trained under him. I believe he does know his stuff. However I have had much trouble since. But he tells me I have a severly damaged nerve. Not much else to do for it. I now have Anesthesia Dolorosa. But I will say every time I email him he quickly responds after 4 yrs.
He has also called me at home several times, even once on a Sat. morning. So he is very good to respond, which I appreciate because I'm pretty desperate with pain and have no one else to help me. So I do recommend him
All of this is after I waited too long to have the MVD, (10yrs). I will always believe I should hve had it done sooner. I also had Gamma Knife 2 yrs. before MVD. I think I was to far gone with damage to the nerve before the MVD, Just don't wait too long as I did.
Hi Prudence:
It is the Presbyterian Medical Center. I am seeing a neurosurgeon, I found out. Dr. Raymond Sekula. I head from several members that he is wonderful, so I'm hoping for the bed. I am staying at a nearby hotel that will be taking me to the hospital and picking me up (free service). I'm so glad I'll have that service to take advantage of. I'll definitely let everyone know how I make out by responding to my original discussion. Thanks so much for the information!
Angie
Prudence said:
Hi Angie, yes I was there to see the neurosurgeon. You are probably be going to the Presbyterian Medical Center site of the main hospital. I was there for TN but I also have a benign brain tumor which the docs don't know if it is the tumor or not. Before it was a likely reason now it's questionable...therefore, if you are going to see a TN specialist and not a neurosurgeon please let me know how it goes. I searched online 2 days ago and found the TN specialist but now wondering why the neurosurgeon didn't refer me. UPMC is considered the premier center for this kind of care...they are very caring and helpful there...the entire staff...anyone you meet. Just be to the hospital way before your appointment, parking is tough to find and the walking to the right department can be challenging or just time consuming. I wish you the best!!
Hi Thia:
I'm so sorry to hear about your husband's trials with his health. He certainly has a strong advocate in you, though! I know it cannot be easy for you.
Thank you for the words of advice and information on the UPMC. I'm going on 3/31 to see Dr. Sekula. The hotel I'm staying at has free delivery/pick up of their patrons. I'm taking advantage of that service! I wish you husband much luck and long-lasting relief. I'll let everyone know how I make out by adding a reply to this discussion.
Angie
thia said:
I just had my husband taken by ambulance last Thursday to UPMC Presby in Pittsburgh as we live only 30 miles north of there. He was admitted thru the ER, was examined by several neurologists in the ER then again once they got him in his room. He has been having severe debilitating pain for months now with this. They put him on lamictal, 25mg once a day for a week, then increase to 2 a day for a week then 2 twice a day for thereafter. He has MS and we also see Dr. Mitchell down there for that. The lamictal seems to keep him awake. He is on tegretol, the max dose, neurontin, and baclofen which the neurologists said are all the drugs used to help TN. They said he is pretty much maxed out on all the meds for TN and we need to contact a neurosurgeon and will no doubt require surgery to alleviate this pain that has taken control of his life. He slept all the time on the tegretol and has lost so much function he now requires assistance with all his daily care. They also ordered him physical therapy to try to regain this.His TN episodes do not seem to be as severe but again he has not been on this drug only 3 days now. He has a large lesion on his cervical spine which but they tell us is not active. They did a spinal tap while there and we had 2 MRI disc that we took, he had them done the week before this that Dr. Mitchell ordered. He is the best neurologist we have ever met along with the others in his group. They told us the only medication that works on TN pain is antiseizure medications. They also give us the group of neurosurgeons to call. I feel totally comfortable with these doctors. We are very fortunate and blessed we live so close. Parking is a problem and can take awhile and if you drive a truck that is very high it will not fit in some of the garages. Your best bet is to get valet parking where they drop you off at the door and come back and pick you up. God bless all of you out there dealing with TN.