Author Topic: Occipital Nerve Surgery  (Read 23981 times)

Janet

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Re: Occipital Nerve Surgery
« Reply #30 on: March 14, 2008, 10:12:04 am »
It will soon be 3 weeks since my occipital nerve release surgery and I am still doing great. I am starting to do some neck stretches as my neck is so stiff from 4 years of limited movement. I am taking Tylenol for my neck as I try to loosen it up. I am not having headaches. (Only an occasional mild twinge lasting a few seconds of nerve type pain.)

Deb,  I had R/S approach to my surgery.  Could you e-mail me your phone number?

Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

Janet

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Re: Occipital Nerve Surgery
« Reply #31 on: March 17, 2008, 05:56:57 pm »
Ooops. I guess I will back off on my neck exercises. I spent the last couple of days with a sore neck and had a headache yesterday. I feel better today but will take it as a warning to slow down a little.

Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

palms0@hotmail.com

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Re: Occipital Nerve Surgery
« Reply #32 on: March 18, 2008, 08:42:43 am »
Janet my husband has had HEAD PAIN that starts from the retro-incision 24-7 since surgery. Every few days it becomes a HORRIBLE HEADACHE. He has had the nerve block which lasted hours only, went to a different pain mgt Dr not connected w/Jeff for his opinion. He suggested a nerve block again to see if relief, if so a nerve abalation(permanent?).
He is at his wit's end, the surgeons @ Jeff who did his surgery don't have a clue why he has this pain, and just like the other poster stated we were told pre op that the people on this web site are just COMPLAINERS ! don't read too much into what they say??? WOW were they wrong. He just does not know what to do. Jeff's HA clinic just pushes drugs because they are funded by drug companies for studies, it's all grant money to them. The one Fellow seems to care somewhat ,but his hands are tied by Silberstein, who by the way we would NEVER see again and many patients in that office have said the same thing so it's not personal. To the person from NYC i would say if you can get a positive referral elsewhere than Jeff i would go there instead. That whole symposium was just a fundraiser for Jeff.

Could you give us a few details of the surgery, what is involved in the repair you had? And please keep us updated on your progress we hope it's just keeps getting better and better for you. If this works for you, then your Dr. better be ready for a line at his door :)
9mm retro sigmoid drs. evans and willcox jefferson hosp phila
facial palsy, external eye weight, headaches 24-7, incisional pain 24-7, balance issues
i was a 46 yo happy active man, now this surgery has ruined my life
I WANT MY LIFE BACK!
ps still have 4mm enhancing area :(

FlyersFan68

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Re: Occipital Nerve Surgery
« Reply #33 on: March 18, 2008, 11:06:01 am »
I had surgery at Jeff too. However, I didn't get the headaches. One of my surgeons was Rosenwasser who I liked very much. Maybe he can help. Did they use a titanium mesh. There are rare times when this can cause discomfort and pain. I had a cranioplasty so maybe that's why I didn't get headaches. Who can say for sure. I also told them before my surgery to make sure they remove all the bonedust. There was talk at that time that bonedust could contribute to headaches. I'm not sure how true that is. I am sorry to hear that you are experiencing problems. I know Karen (Static) also had her surgery aj Jeff and last time we spoke she was looking into the headache clinic. HI KAREN ...if your out there!  :)  Maybe she wil read and offer advice. Take Care.

dally1932

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Re: Occipital Nerve Surgery
« Reply #34 on: March 18, 2008, 05:56:41 pm »
Janet, I am glad you are doing better since surgery. I have suffered with headaches/headpain since surgery in June of 2002. I live in Atlanta and have been referred to Dr. Raj Murali who is head of neurosurgery for New York Medical college. We have talked twice on the phone and I have an appointment at his office in Hawthorne, NY on April 16th. He is also thinking surgery to remove scar tissue and check for nerve entrapment of the occipical nerve. I am interested in following your progress and see you have had three good weeks. I pray that your pain will stay away as you progress. How did you find the first three weeks of recovery compared to the 3 weeks after the first surgery? I had minimal relief with nerve block injections and more medications than I can list here have done very little in relief of the pain. I do not have a titanium plate and have not had cranioplasty thus far. Thanks for your posts as you progress.
Thanks!
Chuck
Left AN Tumor 6/02/02 1.4 X 1.8

OMG16

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Re: Occipital Nerve Surgery
« Reply #35 on: March 19, 2008, 07:21:39 pm »
Chuck that would be awesome if you could have the surgery and have the same response as Janet.  I will be praying for you and will send kisses to your forehead also.  Be sure to let me know in April after your appt.   :-* 16

Janet thank you again for your updates on this post.  You are are trail blazing Hero.
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Janet

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Re: Occipital Nerve Surgery
« Reply #36 on: March 21, 2008, 11:16:19 am »
I was looking over my original post of this thread and realized that I listed the problems that were found during my recent occipital surgery, but not what was done about each problem. I hope this answers some of your questions.

My occipital nerves were not cut and not ablated. The nerves run i] outside[/i] the skull, so the surgery is not very invasive. The left occipital nerve was seperated from the blood vessel that was piercing it and more room was created around the nerve to give it space. The right occipital nerve had a congenital split in it with muscle in the center. (Like a road spliting  and rejoining itself creating a circle in the middle.) He freed this up from the muscle, so that it became one and room was created for it.  The right lesser occipital nerve that had attached itself to the scar was cut and the stumped placed in an area that it wouldn't grow back. A similar procedure was done on the small nerve that was embedded in the titanium plate. There wasn't much tissue covering the original AN surgery scar, so he took a fat graft from my hip and lined the old surgical site with it.

The surgery was done outpatient and took about 3 hours. My insurance covered it. The surgeon, Dr. Ducic, is a plastic surgeon with a specialty in periphral nerve surgery. He has done about 300 of these occipital nerve releases for patients with occipital neuralgia. Many people suffer from this that are not AN patients. He revises other types of scars where the nerves grow into the scar tissue and cause severe pain.

By the way, I am still enjoying my new head.  I even had 1/2 glass of beer a couple of days ago with no headache. Any alcohol previously would cause a headache. I have found myself picking things up off the floor more. That was difficult to do without causing my head to react. I am still taking Tylenol for some neck aches and my neck is stiff. I tried doing some neck exercises but got a headache, so I backed off until I heal more.  Since I stopped the Indomethacin, my stomach is better and I no longer take daily Prilosec. The Botox for my headaches has long worn off. I am still light sensitive in my left eye.

Janet

Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

Static

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Re: Occipital Nerve Surgery
« Reply #37 on: March 21, 2008, 09:10:26 pm »
Hi Steve!
Yes, I also had surgery at Jeff and Rosenwasser was also one of my doctors.  I thought he was great!  I did have headaches but never went to the headache clinic because things took a different turn for me.  First let me say that I have always had headaches and do NOT think they are from the AN surgery but it was something I was willing to explore for a solution.  I have recently been diagnosed with fibromyalgia.  I had stopped the meds I was taking because they weren't helping anymore.  I am working with my PCP to explore options to treat the fibro and am hoping that will also help with the headaches.  For as long as I've had headaches, I don't think a solution will come that easily but I will always be hopeful!  We just need to do whatever works depending on each individual situation!
~Karen
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

Larry

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Re: Occipital Nerve Surgery
« Reply #38 on: March 30, 2008, 03:59:42 pm »
Hi janet,

Great to see that you are doing well. I'll message you shortly


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

marjoryb

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Re: Occipital Nerve Surgery
« Reply #39 on: April 11, 2008, 05:23:11 pm »
Janet,

How are you doing since your surgery?  Are you still headache free?   I read that Dr. Ducic will be offering a seminar on April 24th (as part of a Health Education Series) to discuss headache treatments. 

StayPoz - What do you think?


Marjoryb

staypoz

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Re: Occipital Nerve Surgery
« Reply #40 on: April 15, 2008, 07:58:38 am »
Marjoryb:  As you know, I did go to see Dr. Ducic about a year and a half ago.  I was referred to him independently by both my pain doctor and my neurologist/headache specialist.  I was quite upbeat after meeting with him.  He assured me that any procedure would not make things worse.  I then went back to talk to each of the referring docs.  The pain doctor felt Ducic could probably help me, but the neurologist/headache specialist told me I should be sure to talk to other patients with similar conditions he has performed surgery on before undergoing surgery myself.  I tried to talk to other patients but was only able to talk to one, and she didn't have post AN surgery headaches.  So, I decided to see if my head pain improved before undergoing yet another surgery.  In fact, it has, but I still rely on meds to get through every day.  God bless Janet for blazing a trail.  I may go back to see Ducic, and I did see that he was lecturing on his headache treatments. 

staypoz

Janet

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Re: Occipital Nerve Surgery
« Reply #41 on: April 15, 2008, 11:46:27 pm »
Just a quick update to let everyone know that I am doing great since my surgery February 25. I am very happy that I had the occipital release surgery. I get occasional neck aches that go away with one Ibuprophen but that is all I take or need.  My activity level is way up. I am going back to DC in June for a follow -up appt and can't wait to tell Dr Ducic how well I am doing.

Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

jerseygirl

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Re: Occipital Nerve Surgery
« Reply #42 on: April 16, 2008, 07:29:52 am »
Janet,

This is WONDERFUL!!! Congratulations on your persistence and perfect end result! I am just so happy for you. Those headaches can really mess up your life, I know first hand.


                   Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

diane

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Re: Occipital Nerve Surgery
« Reply #43 on: June 27, 2008, 01:52:04 pm »
Janet,
I also had headaches after AN surgery. They lasted for 3-1/2 years. I did research about cranioplasty surgery and consulted with numerous doctors about it. I had the cranioplasty surgery in 1998 in Atlanta and they found that my sub-occipital nerve on the surgery side had attached itself to my dura during the healing process from my AN surgery, therefore causing headaches every time I moved my head a certain way, strained, coughed, sneezed, etc. Anyway, after healing from the cranioplasty, my head quit hurting and hasn't hurt since. Good luck with your healing and I hope your outcome will be as good as mine.
Diane Sale, Georgia Support Group Leader

sgerrard

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Re: Occipital Nerve Surgery
« Reply #44 on: June 28, 2008, 01:07:41 pm »
Hi Diane,

Just wanted to welcome you to the forum. I see you are a 12+ year veteran of AN surgery, and a support group leader. It always helps to get another member with experience and perspective.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.