Hi, My name is Rob. This is my first post. I have been dealing with my symptoms for 6 months. Recently the pain is getting harder to manage. I scheduled my decompression surgery for May 7th. It will be done by Dr. Mark McLaughlin at Princeton Brain and Spine. He will do the procedure at St. Mary's Hospital in Langhorne, PA.
Is anyone had experience with Dr. McLaughlin or this facility? He also told me that I will not be able to return to work for 4-5 weeks. Is this consistent with others experiences. I am a Solo practice Physician and this amount of time away from the office will definitely be a challenge.
As you all know, pain is so subjective and GPN is such a zebra that many find it hard to understand what you are going through. I look forward to learning more from my friends here at this forum.
Hi Rob. I have had GN since 1993. It also affects my mouth, tongue, and swallowing. I also have neuralgia on my head, stomach, ribs, and right groin area. My doctor has not told me about decompression surgery, so I do not know what it is. I am sorry I can't help you with your questions. I hope someone can. I agree on something you said: no one doesn't know what you are going through, except us people who have it. They think we have just a few pains and quick acting like a baby. The people who have statica do know somewhat, but the pain usually goes away after back surgery. I have asked them if they would like that kind of pain 24/7, as well as other areas of pain. They still don't get it.
Hi Rob - I had GN and I had MVD in January and it was a success! The surgery would have been fine, however I did experience a small stroke and so that took an extra 6 weeks of recovery time.
Recovery from MVD is the same as most other surgeries and I was given the same time frame for 4-6 weeks. If it had not been for the stroke I do believe I would have been able to go back to work in around 5 weeks. I was still very weak - but again it is hard to say because of the stroke complication.
I have never heard of your doctor, but I have heard of Dr. Janetta in Pittsburgh who pioneered the MVD procedure. My doctor was amazing - I am on the other side of the coast though and went to UCSD for my procedure. I had a blood vessel wrapped around my Glossopharangeal (sp?) nerve - but my Dr. was able to get it! Make sure your doctor has done many many MVD's though before letting him cut into your head!
Good luck with your surgery! I'm very happy I went ahead and got mine done. (Even after agonizing over it for over a year!) Sandee
Did your surgeon actually see a vascular loop on your MRI.
Sandee said:
Hi Rob - I had GN and I had MVD in January and it was a success! The surgery would have been fine, however I did experience a small stroke and so that took an extra 6 weeks of recovery time.
Recovery from MVD is the same as most other surgeries and I was given the same time frame for 4-6 weeks. If it had not been for the stroke I do believe I would have been able to go back to work in around 5 weeks. I was still very weak - but again it is hard to say because of the stroke complication.
I have never heard of your doctor, but I have heard of Dr. Janetta in Pittsburgh who pioneered the MVD procedure. My doctor was amazing - I am on the other side of the coast though and went to UCSD for my procedure. I had a blood vessel wrapped around my Glossopharangeal (sp?) nerve - but my Dr. was able to get it! Make sure your doctor has done many many MVD’s though before letting him cut into your head!
Good luck with your surgery! I’m very happy I went ahead and got mine done. (Even after agonizing over it for over a year!) Sandee
Hi Rob....I am so sorry for your pain. I myself do not experience this, however my son is in the process of being diagnosed and I am trying to gather as much info as possible. Im wondering if you wouldn't mind sharing with me your thoughts on MVD from the point of view as a patient and a physician. Im sure you have a differnt kind of knowledge with your background that would be helpful should we go that route.
Thank you so much and I wish you a future free of pain!
Thank you for your sincere words. I have always preached to my patients that I always want to know what it is but more importantly why it is. If there is a vascular loop noted on an MRI, then it should be addressed. The important factor is to find a neurosurgeon who has been well trained in this procedure. The best brain base surgeons come from University of Pittsburgh and were trained by Dr. Janetta. I look forward to my upcoming procedure as it will allow me to be proactive in my recovery.
Please feel free to keep the lines of communication open as I hope your son finds his answers.
I saw your comment to Janelle to Google Dr. Peter Jannetta. He has been my NS and friend since 2004. Unfortunetly, he has had to retire & is only doing research now but is such an incredible Man & NS. Most NS patients don't realize they owe a lot to him for developing current NS techniques & for all the Neurosurgical Studies he has done for the NIH. He teaches & lectures all over the world. Plus he literally saved me from becoming a Quadripledgic, by calling me on my cell phone while I was driving on the freeway, to let me know I had a much worse illness than GN & had to have emergency surgery. I wish every physician had the chance to know PJ. He is definitely a Man Among Men.
Regarding your MVD surgery ....I think you are not giving yourself long enough to heal. 4-5 weeks is a very short time if everything goes perfect. I awoke with Motion Sickness from a broken Mastoid Bone that filled with CSF & it leaked causing Meningitis. I think it took me about 3 months to be able to return to work. I also have a medical background & understand the difficulties of having a solo practice. I know other physicians that has recruited retired physicians to fill in for them in a situation such as this. I don't know if this is an option for you. Please know I hope your MVD goes well.
I went through a successful MVD 14 months ago, have no side effects and would like to share some of my comments with you - just click on my highlighted name. I have been a poster child for the U. of Mn. (literally) and cannot say enough good things about their program. It all comes down to surgeon, surgeon, surgeon. May God bless you as you move forward with your decisions. They should feel right.
p.s. You should allow yourself at least 3 weeks to feel almost normal. I was so high from being painfree that I was up and around immediately but did NOTHING strenuous for months(walking was about it) including bending over or any head jerking motions. It usually takes weeks to get weaned off the anticonvulsants as well. I was out mowing the lawn today in 80 degree weather, overdressed, got flushed in the face and now feel some tingling. I wont be getting that overheated again! I have always gotten beet red in the face with exertion and often thought there was something going on in my brain! My intuition was right. I had anterior and posterior cerebellar arteries and a vein pressing on 3 cranial nerves! If there was hope for me, there is hope for most all. Please let us know how you are doing postop. Sally from Wisconsin
I had and MVD about 3 years ago at the University of Pittsburgh facility (they were great!). I was pain free for about 6 months and then it came roaring back. This time with hemifacial spasm in tow. It seems like people get mixed results with this surgery. I hope you get relief! Recovery for me wasn't that bad. But I was TIRED. I practice law for a living (or did at the time, now I can't speak well enough to practice) and was able to return to work after about 6 weeks. Even though you will start feeling pretty good after a couple of weeks, you will be exhausted. So take it easy. I wish you the best!
Hi Sally. What doctor or clinic did you see at the U of M? Who was your surgeon? I live in St. Paul. I have not been to the U for anything, but two of my girls were, for other reasons. It would be helpful for me. I see a neurologist and my family doctor. They do not understand the pain I am in. I have built up a high tolerance for pain, like all of you have. I have had all my neuralgia areas since 1991. I get new areas of pain as the time goes on. I feel like I can't take much more pain as it is getting worse and the medicines do not work like they once did. The only good thing is that I am not alone anymore. I am thankfull for the computer. I would explain to people what it was like and they just looked at me like I was crazy. I would not wish this disease on an enemy. I would love to see doctors that know what they are doing and how to treat all my neuraligas. Thank you. Jenelle
Hi...Yeah, I have passed out from the pain and it gets really bad. Go to the Mayo. Dr. Carrie Robertson knows exactly what is it. Will be having Dr. Pollock do MVD on the 24. I need a life and so does my hubby. He is such a blessing but I am such a worry to him. Let me know if you see these Drs. They are tops. God bless. JB
Hi...Yeah, I have passed out from the pain and it gets really bad. Go to the Mayo. Dr. Carrie Robertson knows exactly what is it. Will be having Dr. Pollock do MVD on the 24. I need a life and so does my hubby. He is such a blessing but I am such a worry to him. Let me know if you see these Drs. They are tops. God bless. JB
Hi Sally. What doctor or clinic did you see at the U of M? Who was your surgeon? I live in St. Paul. I have not been to the U for anything, but two of my girls were, for other reasons. It would be helpful for me. I see a neurologist and my family doctor. They do not understand the pain I am in. I have built up a high tolerance for pain, like all of you have. I have had all my neuralgia areas since 1991. I get new areas of pain as the time goes on. I feel like I can’t take much more pain as it is getting worse and the medicines do not work like they once did. The only good thing is that I am not alone anymore. I am thankfull for the computer. I would explain to people what it was like and they just looked at me like I was crazy. I would not wish this disease on an enemy. I would love to see doctors that know what they are doing and how to treat all my neuraligas. Thank you. Jenelle
I had MVD by Dr. Stephen Haines at the University of Minnesota Fairview Hospital as well. My surgery was in July of 2009, and I've been completely free of GPN pain since. Dr. Haines gave me my life back, as I was completely debilitated by the increasing amount of medication I was needing to take to even minimally control my pain. The surgery was a complete success, and I was back to work in four weeks, although I suffered headaches for about two months after the surgery. Even though I returned to work in four weeks, I was very tired, but I did manage all right. I'm sure everyone's experience will be different, and the degree of stress in your job might affect how soon you can return to work. I assume you've had your surgery, Rob, and I hope you're recovering well. Best wishes to you.-- KayJay
I had my decompression surgery May 7th. I immediately felt my symptoms drop from a constant 10 to a 2 or less. My procedure was performed by Dr. Mark McLaughlin from Princeton Brain and Spine. I am 2.5 weeks out and was able to go for a mile walk yesterday. Minimal post-op discomfort. I get a bit fatigued but that gets better daily. My scar has healed completely and is not detected.
Listen people, the bottom line is that there are ways beyond medication to reclaim your lives back. Utilize this resource to ask us who have been successful with their surgeries. It does not come without possible risks. The bottom line is to find those surgeons who have a great deal of experience dealing with GPM. Dr. McLaughlin is the man. He published a terrific journal article in which he did a retrospective study of 4400 cases of decompression surgery. He points out how the procedure has been perfected over the years. He admits they have learned from their past procedures.
I plan on returning to my high stress medical practice in two weeks. I would love to help any of you who have questions. I have my life back and would love to help others feel the same way!
Hi, Rob.
So very glad you are doing well! Thanks for letting us know as we sometimes don’t hear from people once they’ve had their surgeries. You are right. It takes the right Dr. for success. I was lucky that mine was just a short distance away in Mpls. And he(Dr. Stephen Haines) decompressed #5,9 and 10 for me. Take it easy for awhile to let things mend and enjoy your new life!
Sally from Wisconsin