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Posted By : givenup - 2/11/2010 9:37 AM
Has anyone heard of the nerve decompression surgery being done for new daily persistent headaches. Being done in Washington D.C. and Houston Texas.
 
                                               givenup

Posted By : kandjmomy - 2/11/2010 3:14 PM
I was just reading about surgery one another message board. Several of those folks had been through it. If you haven't seen, google NDPH forum.

I'm curious about it as well. I'd love to hear others' opinions or experiences.

Amanda

Posted By : tysmyboo - 2/17/2010 1:09 AM
Hi givenup,
I have heard some experiences but not from anyone I know personally so I hesitate to share.

Are you considering this procedure?


Sara-Migraine/Headache Forum Moderator
Battling headpain for 17 years.
DX: occipital neuralgia-radiofrequency nerve ablation every 6mo
 
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Posted By : gallyndur - 2/18/2010 10:59 PM
I'm in Houston and am currently pursuing this surgery with Dr. Pamela Blake. I've just finished the three-part series of nerve block injections across my forehead. After the first set, my headaches were considerably less intense, though there was not much improvement in frequency. I had the second set of injections two weeks later, which helped the frequency a little. After the third set, I feel better than I've felt in years with only 1 or 2 headaches a week! I go back in a week to figure out if I'll also need to undergo a series of injections in the back of my head (trying to figure out where I owuld need surgery--front, back, or both). If I'm not mistaken, she'll also want me to try Lyrica before operating on me just to make sure surgery really is necessary, though I do have some concerns about going on Lyrica. Is it common for people to not have success with the other preventives like Topamax and Neurontin but to do well with the Lyrica?

The surgery is still pretty new, so I haven't been able to find much information on it, but everyone I've heard or read about has had a lot of success from it, so I'm really excited! It's been easy to lose hope over the years (I've had to give up my job and drop out of grad school due to the migraines and have often felt pretty useless/worthless), but I finally feel like I might soon function again.

I, too, am very interested in hearing others' experiences with the surgery (and Lyrica).

Posted By : givenup - 2/19/2010 7:35 AM
Hi gallyndur, My daughter is the one with new daily persistent headaches. She is 24. She has these headaches for 4 years.We live in New Jersey. How I found out about this surgery, I came across another site. MJ Junction.Com.
There are so many people who have had this surgery by Dr Perry. As you mist know he works with Dr Blake.
We flew to Houston about 6 months ago and meet Dr Blake. Ashley is a candidate for the nerve decompression surgery. Just recently we flew down again and meet Dr Perry.
Right now his office is trying to get the surgery approved for Ashley.
We have exausted everything.
She was hospitalized 3 times at Thomas Jefferson Headache Center in Phila,Pa. to try to break the cycle of the headaches. Two week stay.
Even went to Michigan Head and Neurological. She was hospitalized there for two weeks, nothing.
Have seen every headache specialist in N.Y.C.
Three pages of medications that did nothing.
Right now she is on Kadian(morphine),percocet,xanax. And that barely works.
She was detoxed twice.
She hates being on these pain meds.
But right now Dr Blake says what other choice do we have right now.
Please check out the MDJunction.Com site.
There are so many people that have had the surgery.
I will keep you updated.
Good Luck
                                                          Diane

Posted By : korbnep - 2/19/2010 11:07 PM
As with nerve stimulation this sounds like a treatment that would be best suited to headaches with significant evidence of neuralgia. If other neuralgia treatments haven't done anything though--well, I'm sure that this surgery would only be considered if there's a good reason to believe that it would be helpful.

It's important to remember, I think, that NDPH is a pattern of symptoms, not a specific headache pathology. If Ashley is a good candidate for the surgery then I very much hope that it works. I'm just concerned if you're considering it because there doesn't appear to be any other choice. What lead Dr. Blake to suggest this specific treatment for your daughter's headaches.

My thoughts are with you.

Ben


DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Nardil, Piroxicam, Oxycontin, Clonazepam, Rozerem, Ambien CR, Magnesium (800 mg/d), Riboflavin (400 mg/d), Fish Oil (2000 mg/d)

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Lodine, Zofran, Phenergan,
rarely: Migranal, DHE IM, Reglan, Provigil, Maxalt, Zomig

I can be contacted personally via email at korbnep@gmail.com.


Posted By : mercyme - 4/21/2010 8:56 PM
 
 
   I don't know a lot about the Nerve Decompression Surgery, but I am trying to read as much information that  I can get my hands on. I have daily chronic migraines and nothing I've taken has helped.  I've also had brain surgery a few years ago (Epilepsy Brain surgery). The brain surgery was a success, I no longer have seizures!!  now to battle these migraines, I'd do almost anything to get rid of them. Not sure about the surgery just yet. I don't live in a large city, so I don't have the opportunity to visit a headache clinic. I don't know if my insurance would pay for me to go through all the test to even see if I was a canidate for a surgery like this.  If anyone can give me more info on it, I'd sure appreciate it.
 
   Blessings ~
 
   Mercyme/Cindy

Posted By : gallyndur - 4/28/2010 9:03 AM
Hi, Mercyme,

I, too, have had a lot of trouble finding useful information about this surgery. This thread has a lot of information. IIRC, everyone in this thread suffers from occipital neuralgia, but nerve decompression surgery can also help with other types of headaches.

http://www.mdjunction.com/forums/ndph-support-forums/introductions-personal-stories/127081-occipital-neuralgia-surgery

I think there a couple of other doctors who perform the surgery, but I'm only familiar with Drs. Blake and Perry here in Houston. Here are their websites:

Dr Blake http://www.mhmedicalgroup.org/Doctors1.aspx?s=70825ef3-176a-462b-88fd-eec9affff438
Dr. Perry http://migraineheadachesurgery.com/

Hope some of that is helpful. Good luck!

Posted By : mercyme - 4/29/2010 7:35 PM
 
  I got a call today from Dr. Blakes office, they wanted me to set up an appt. to talk about what they could do for me. I'm in Tennessee not in Texas so it makes things hard.  Kinda of expensive to fly out for just a consultation then back home, then back for test... I don't know what my answer is, but I know I have to do something about these daily chronic migraines.
 
   Mercyme

Posted By : tmjpain - 5/4/2010 12:54 AM
givenup said...
Hi gallyndur, My daughter is the one with new daily persistent headaches. She is 24. She has these headaches for 4 years.We live in New Jersey. How I found out about this surgery, I came across another site. MJ Junction.Com.
There are so many people who have had this surgery by Dr Perry. As you mist know he works with Dr Blake.
We flew to Houston about 6 months ago and meet Dr Blake. Ashley is a candidate for the nerve decompression surgery. Just recently we flew down again and meet Dr Perry.
Right now his office is trying to get the surgery approved for Ashley.
We have exausted everything.
She was hospitalized 3 times at Thomas Jefferson Headache Center in Phila,Pa. to try to break the cycle of the headaches. Two week stay.
Even went to Michigan Head and Neurological. She was hospitalized there for two weeks, nothing.
Have seen every headache specialist in N.Y.C.
Three pages of medications that did nothing.
Right now she is on Kadian(morphine),percocet,xanax. And that barely works.
She was detoxed twice.
She hates being on these pain meds.
But right now Dr Blake says what other choice do we have right now.
Please check out the MDJunction.Com site.
There are so many people that have had the surgery.
I will keep you updated.
Good Luck
                                                          Diane
 
Hi Diane
Can you tell me what tests or other that your daughter had done when she was at Thomas jefferson to break the pain cycle and also what they did for her at michigan head and neurological. I have suffered ten years with temporal, bilateral headaches. The headaches have always been in the same place. This is my second sick leave from work (I am a paediatric nurse) right now since Oct. 2008. My headache is there every minute of every day and I can't sleep . My pain is always 10/10. I too have seen every dr. possible, taken every kind of med and nothing has helped, done all forms of treatments and all tests are negative. i have done orthodontics for tmj and that is fine now but the headaches are still there. No one knows what it is and they all say poor prognosis. I live in Ottawa, ontario, Canada. i wish i was in the states to try some of your big headache centers but we have no money left now to go to the states. I wrote to Oprah to see if she could help me but of course never heard from her. i don't know what to do anymore. CAN ANYONE HELP ME!!!!!!!!!!!!!
 
Thank you
Suzane


   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
 Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Posted By : tmjpain - 5/4/2010 1:00 AM
korbnep said...
As with nerve stimulation this sounds like a treatment that would be best suited to headaches with significant evidence of neuralgia. If other neuralgia treatments haven't done anything though--well, I'm sure that this surgery would only be considered if there's a good reason to believe that it would be helpful.

It's important to remember, I think, that NDPH is a pattern of symptoms, not a specific headache pathology. If Ashley is a good candidate for the surgery then I very much hope that it works. I'm just concerned if you're considering it because there doesn't appear to be any other choice. What lead Dr. Blake to suggest this specific treatment for your daughter's headaches.

My thoughts are with you.

Ben

Dear Ben

Please see my post above for Diane. Can you help me. I just finished doing the cycles of ketamine at home via picc line thru an iv pump with no help. I wish i had money so i could come to the states to do the admission where they give you ketamine to put you in a coma for two weeks and  you wake in after two weeks with much lower pain levels. B ut i am in ontario and have no money to come to the states. Where do they do this Ben? and do you have any suggestions for me please. I DESPERATELY NEED SOME HELP!!!!!!!!!

 

i look forward to hearing from you Ben or anyone else for that matter.

 

i am always in the chronic pain section.

 

thank you

suzane


   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
 Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Posted By : teenazless - 1/11/2012 12:12 AM
Yes, I have heard of nerve decompression surgery for headache. This surgery has given my daughter her life back.Long story short, several doctors, numerous medications, hospitalization for DHE therapy, homeopathic remedies, chinese medicine and a clear MRI led us nowhere. We read about peripheral nerve decompression surgery on the internet. Gathered all my daughters records and sent them off to Dr. Duci at Georgetown University. Luckily we got an appointment fairly quick, Dr. Ducic evaluated her in person and surgery was scheduled. This was our last hope. After the first surgery, 70% of the pain was gone. After the second surgery, THE PAIN IS GONE!
She is very happy and finally able to be a teenager! Her story can be found at www.mydaughtersheadache.com. the website was started in an effort to help others, who like her, seemed to have reached an end to treatment and did not want to "live" with the constant pain.

Posted By : tuckswife - 1/16/2012 9:18 AM
I have had the botox testing and had some positive results. I do also have a deviated septum. which is causing some of my migraines. I am waiting for an apt for the nerve decompression surgery. It will be costly and perhaps only small amount covered by insurance if any.
I am interested in chatting with anyone that has had this done. I am mostly concerned with the recovery, surgery doesnt really bother me. But the recovery and possible increase in headaches while recovering does concern me.
Please anyone that has any input would be so welcomed.

Posted By : tmjpain - 1/22/2012 1:59 PM
"Teen", what kind of headaches did your daughter have? mine are continuous bilateral temporal area and wondering if this surgery could help me? but need to find something here in Canada. What was her recovery like? how many days in hospital?

Thank you
Suzane

Posted By : teenazless - 1/30/2012 4:21 PM
My daughters headaches were 24/7. The pain was in the entire front quarter of her head- top of her head to below her nose and from ear to ear. Her recovery was fairly quick. Two weeks after the first surgery, she was working at a camp for three weeks straight. She had bruising when she left and some swelling. She had surgical pain but no headache in the center of her head. The second surgery took care of the side pain. Both surgeries were out patient. We opted to stay in DC for a few days after each surgery so she could have more recovery time. She was prescribed percocet for the post surgical pain. Over the course of both surgeries, she used about 30 pills. Most of those were used in the first few days after the surgeries. More details at www.mydaughtersheadache.com

Posted By : mercyme - 1/31/2012 8:23 AM
Hi, I wanted to ask if any of you have neck pain with your migraines?? I have terrible neck pain that comes along with my migraines. Woke with a terrible migraine this morning, so I know it's going to be a long day! I've been on so many meds for migraines and nothing works. I am a candidate for the NDS and Dr. Pamela Blake in Houston was ready to set an appointment up for me, but my insurance turned it down. It makes no sense to me, they will put me in the hospital for 4 days which cost $8,000.00!! for DHE protocol which didn't work, but they will not pay for a procedure that might take care of the problem all together that would save them thousands of dollars by not having to pay out their part on our insurance. Makes NO sense!!! I keep Hoping and Praying that there will be an answer soon, it's really getting to me. If not for the Grace of God I don't know how I'd get through this terrible pain!

God Bless,

Mercyme

Posted By : Sallie - 3/4/2012 8:04 AM
My daughter, 24, had nerve decompression surgery and a repair on her deviated septum a little over 2 weeks ago. She had had great success with Botox..2 years , headache free. Since the surgery, the first week was great but now she is experiencing headaches about every other day. For those who have had the surgery, is this normal? We've put a call into the nurse but are feeling a little discouraged after doing so well with the botox. Thanks so much!

Posted By : Sallie - 3/4/2012 12:08 PM
PS
I would gladly give information that we have since my daughter has already had the surgery.

Posted By : tmjpain - 6/16/2012 8:53 AM
http://www.georgetownuniversityhospital.org/LectureSeries/?lecture=Surgical_Treatment_Chronic_MigraineHeadaches
 
Please watch the above video with slide presentation by Dr. Ducic who does the nerve decompression surgery. It is an excellent video and gives a ton of info.
 
Let me know what you think and if this is a surgery you are looking into. I am in the process of, actually this Wed., seeing a doctor re: ONS surgery. I am in Canada, so if anyone needs those contacts please send me a message. I will also be looking into the nerve decomp. surgery but looking for someone who does it in Canada. This surgery seems to be done by plastic surgeons.
 
Suzane

Posted By : boballen - 10/23/2012 6:08 PM
Greater occipitial nerve release for chronic migraines and occipital neuralgia has been done for several years now . Dr Bardia Amirlak in Dallas is doing this and also now for daily persistent headaches , results are great .His a peripheral nerve surgeon/plastic surgeon at UTSW in dallas and is working with a great team of neurologist . The surgery takes about 1.5-2 hours and they have good studies in the plastic surgery journals and im sure new studies will come out soon in neurology journals.

Posted By : byranpeel - 1/11/2013 10:18 PM
My best friend had trigger point surgery with Dr Bardia Amirlak at UTSW in Dallas. Amirlak and Guyuron in Cleveland who came up with the procedure I think are the top guys in the county . He has been migraine free for over a year now and he used to get migraines daily . He missed work so many times and had to change jobs , . Could not even leave the house for days at times. They are now doing this surgery for chronic headaches as well . He literally got his life back and swears by Amirlak's skills and bedside manner. I cant imagine why more people dont know about this . Its a miracle cure

Posted By : davejmh - 3/8/2013 7:09 AM
I have a grandson, who has been experiencing New Daily Persistant Headaches for approximately 8 years.
His experience is similiar to many. 
All sorts of Meds - too many to list here - too many doctors -
 
Currently undergoing Botox at Jefferson Headache Clinic in Philadelphia. 
Prior to that Botox at New England Clinic in Worcester, Ma.
 
Over the past year Mass General Hospital, Boston, has touted their success or ability to perform surgery for "migraine" suffering patients.  The surgery, I believe is headed by a Dr. Jay Austen, Jr of plastic and reconstructive surgery.
 
Does anyone know, personally know, if this type of surgery has been successful with NDPH? 
Does anyone know, personally if there has been successful surgery for NDPH at Mass General.
 
Has anyone had a personal experience with a Doctor Duci of Georgetown, Universtiy?
 
Thank you.
 
 

Posted By : tmjpain - 3/9/2013 8:47 PM
Dave, the other thing you can look into is occipital nerve stimulator surgery. This is being done in many of the states and a few provinces in Canada.
Also if you are interested there is a facebook group of people who suffer with intractable migraines/headaches and are getting the ONS or already have one.
The group is called occipital and peripheral stimulation.
 
Suzane

Posted By : teenazless - 5/8/2013 5:22 PM
Hi,
Our daughter had nerve decompression for her constant headache after all other treatment failed.  Her story is at www.mydaughtersheadache.com.  If you have any questions, please ask!  Dr. Ivica Ducic was her surgeon.

Posted By : treatmentoptions - 6/19/2013 2:26 PM
Can anyone tell me if insurance pays for this? My daughter is on Medicaid, because she is considered disabled. Would she qualify?

Posted By : PhlebotomistEh! - 2/7/2014 1:08 PM
Hi there, I am new to the forum I am from Ottawa aswell and was wondering if you had any luck here finding a Dr. who will do nerve decompression? As yourself and many others I have lost hope, I suffer daily migraine that are so horrible and nothing works I don't want to turn to narcotics, I just want my life back. I can not work right now and this is very frusterating. darn it, I don't have the money to go to the states for surgery. I am desperate, home job anybody? Ok maybe not that desperate. Any place near or in Ottawa I am willing to be an experiment. :) God bless and good luck everyone

Posted By : millerc - 2/27/2014 7:53 AM
Hi, I wanted to join this blog just to let people know my story and to give hope. I have had headaches off an on my whole life. Then migraines the last 7 years with chronic daily headaches and migraines. I tried topamax three times in the 7 years but after 4 months couldn't take the tired drug feeling. Then Elavil or Amitriptyline. And Botox shots, sinus surgery , migraine diets and many other ways to get rid of them. My Daughter who is 27 years old also had them. She was watching Dr. Oz who had a guess speaker on there named Dr. Fuhrman He said all his patients recover from migraines in three months by following his nutritional advice. I knew this was not going to work. But my daughter bought his book (Eat To Live) followed it and recovered. So I tried it and now I am 9 months migraine free. no meds!!!! What also compelled me to try his way was he wasn't selling any magic herb or snake oil or promoting any one thing. He simply tells you how to get rid of them buy going to the grocery store yourself and buying the right food and getting rid of toxins.I used to get very insulted when people told me I had the power to cure myself with food or just drink more water suggestions. So I know oversimplifying migraines can be angering. I thought there is no way Im changing my diet just to try one more thing that has little chance curing me, since migraines stole my life all I have left to enjoy is food and I don't want to deprive myself further. Dr. Fuhrmans program is more than diet as you will see in his book. But My daughter who lived with me keeps cooking this yummy food and she felt great. So with a panic attic in the grocery store trying to buy new foods and mourning the oreo's. I kept my promise to her and weened off the Elavil. and started Dr. Fuhrmans program And now I write you completely cured and not selling anything but hope. If you are interested, Read his book for the info.( I found his book at our library) He has a web sight at Dr.Fuhrman.com. PS we also lost weight on his plan. Good luck don't give up and settle for medications like I did!! Write me anytime.

Posted By : tmjpain - 2/28/2014 12:07 PM
I don't know of any doctors doing nerve decompression around Ottawa. You can look into occipital nerve stimulator surgery... there are doctors in London who do this and also one in Quebec City.
My email is in my profile if you have further questions.

Posted By : ALW1 - 4/21/2014 1:30 PM
Nerve Decompression Surgery for chronic daily headaches & chronic migraines: I have suffered from migraines since 1994. They have incr over time & I was close to dying after a Basilar Artery Migraine caused me to have a cardiac arrest. Needless to say...I have tried everything anti depressants, anti seizure, pain meds, muscle relaxants, centrally acting muscle relaxants, Botox, nerve ablation, in hospital treatments 4-6 months out of the year, & nerve blocks. I was at the lowest point in my life & was desperate. Mon 4/14/14, I had nerve decompression surgery to my occipital & trigeminal nerves. The surgery was 4hrs and recovery has been good & bad days. Today so post-op day 7. I have a small incision above my left ear & a 2 inch incision with staples at the base of my skull. Other than incision pain and tightness, I haven't had any migraine pain!!! For others desperate to have a life again, to be a mom again, and to be a living person. Please make an appointment with Dr Mark Khorsandi, www.migrainereliefcenter.com. IT CHANGED MY LIFE. you don't realize how much you've lost until it all starts to come back!

Post Edited (ALW1) : 5/1/2014 10:12:21 AM (GMT-6)


Posted By : migrainingmama - 4/21/2014 4:30 PM
I had the surgery on three of the four areas in Feb 2013. It was close to $9,000, and it did help for all of three months. As I healed from surgery, I got worse and worse and even have new pain as a result of surgery. Everyone I have read about has not had sustained results, but maybe there are some out there who have. My neuro said that all of his patients that had it have had similar experiences to mine. Do some research before paying so much money.

Posted By : tmjpain - 4/21/2014 4:50 PM
PhlebotomistEh! can you contact me. I would love to chat with you as I am in Ottawa as well.

Suzane

Posted By : ALW1 - 5/1/2014 10:10 AM
I had nerve decompression surgery for chronic migraines & NPDH, I have suffered for approx 20 years. Dr Khorsandi in Houston Tx performed the surgery. I'm about 20days post-op and have not had a migraine or a headache. He's very compassionate and truly is in it for the patient. The recovery was painful but not migraine pain, only incisional and "tightness" feeling, pain easily controlled with pain meds. HE HAS SAVED MY LIFE!! I would do it all over again in a heartbeat. When you are desperate, you have nothing to lose.

Posted By : Nichole24 - 5/15/2014 8:50 PM
I am from Ohio, and I have an appointment next week in Texas with Dr. Blake and Dr. Perry… For anyone that has had Nerve Decomp. Surgery for chronic migraines or NDPH… What is your story? I have had NDPH for 8 years now, have tried everything but nothing has worked. Thank you in advance. Nichole

Posted By : mojoesports - 9/7/2015 10:56 AM
Hello. My son is 15 years old and has had NDPH for four years. His history sounds like yours. He is completely non-refractory. Th neuro folks at Children's hospital have recommended we look into this surgery. Now that you are a year out, can you tell us if it is still working for you?

Posted By : Tommys Mom - 3/14/2017 3:42 PM
Has anyone had success with this surgery for NDPH with pain in the front only? My son has had this for 11 months, we have tried a ton of meds, and did inpatient at jefferson, only to have headache return 2 weeks after discharge.

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