ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Janet on March 02, 2008, 05:43:16 pm
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Hi All,
I had surgery on Monday for treatment of severe headaches following my AN surgery. My symptoms were pointing to the occipital nerves. Rather than continuing to treat the symptoms with medication, I wanted to correct what was wrong. This is what Dr Ducic, the periphral nerve surgeon, at Georgetown University found and repaired.
Rt occipital nerve: A congenital malformation, where the nerve split into 2 branches. People with this variation are prone to migraines.
Lt occiipital nerve: A vessel was piercing through the nerve and the nerve was tight. I think this was giving me the majority of my problems, as my pain was on the
opposite side of my surgery.
Rt lesser occipital nerve: Stuck within the scar tissue from my AN surgery.
Branch of the rt auricular nerve: Stuck over the titanium plate.
I took pain medication following surgery, but now I am only taking Tylenol. It takes 3 weeks to 3 months to see if the corrections will work. I am sore from the incisions but that is nothing compared to the pain I used to feel before surgery. I am being cautious not to claim success too early. I am very optimistic and am keeping my fingers crossed that the pain doesn't return. I have felt a few twinges of nerve pain off and on but it is short lived and mild.
Janet
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Janet,
I sure wish this surgery will work for you! May your days be pain free!
Eve
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Hi All,
I had surgery on Monday for treatment of severe headaches following my AN surgery. My symptoms were pointing to the occipital nerves. Rather than continuing to treat the symptoms with medication, I wanted to correct what was wrong. This is what Dr Ducic, the periphral nerve surgeon, at Georgetown University found and repaired.
Rt occipital nerve: A congenital malformation, where the nerve split into 2 branches. People with this variation are prone to migraines.
Lt occiipital nerve: A vessel was piercing through the nerve and the nerve was tight. I think this was giving me the majority of my problems, as my pain was on the
opposite side of my surgery.
Rt lesser occipital nerve: Stuck within the scar tissue from my AN surgery.
Branch of the rt auricular nerve: Stuck over the titanium plate.
Janet,
You are the first person whose post I've read that took action to reduce headaches. Impressive.
It is interesting to read all of the corrections made. How did you ever hear of such a treatment?
Again, your surgeon sounds amazing and I am hoping for an awesome outcome.
All the best,
Kate
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Ditto what Kate says...
Amazing! How did you find out and then get help?
4
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I heard of Dr Ducic on this forum! Staypoz had 2 doctors in the DC area referr him. I sent him my records, he did a phone consult and said he would see me. Last November, I flew from Seattle to DC. Based on his exam, prior tests and response to treatments, he thought he could help and I scheduled surgery for February. Based on his statistics, he said 80% chance of improvement and 20% of no change. Within the 80%, there are varying degrees of relief, including total relief. I felt it is in his best interest to select the more likely successful outcomes to keep his success rates higher. He does not do the outcome interviews himself. All things considered, I went for it.
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Janet,
Here's hoping that the surgery gives you the relief you were looking for.
Regards,
Rob
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Janet~
That is GREAT!! I hope so much for you that you get the much needed relief that you deserve! This forum is so good for sharing info and helping us learn of new procedures that might help us! After being totally paralyzed (no feeling or movement) on the right side of my face for 12 YEARS, I have an appointment with Dr. Byrne @ Johns Hopkins on the 19th to see if I can benefit from the T3 surgery that Nancyann had!!
Happy Recovering,
K
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Yeah JANET!!!!!!
All of us here on the "Headache Page" will be watching your progress with high hopes for you! Especially me! I would love to quit taking all of this junk and have a normal, or somewhat normal, life again. Ducic Rocks!!!!
No more of this $%#@:(http://i235.photobucket.com/albums/ee60/Captdeb_photos/stressed_man_clamp_md_clr.gif)
Hope your recover goes smoothly and you are feeling great in no time!
Big Hugs,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Janet,
very eager to hear your progress post headache surgery and keeping fingers crossed that it all works out. You are the first I have heard that had this done and will follow this and your progress.
Sending those healing huggles in hopes that this works for you (and anyone researching this type of procedure).
Phyl
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Janet that is great I will keep my fingers crossed and will wait for further update. This is very interesting and you may be paving the way for future AN patients and headache sufferers. Kisses to your forehead. :-* 16
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Hi All,
It has been 9 days since my surgery. I am feeling great. No electrical shock type pains or headaches. I can hardly believe it. I am only taking Tylenol for mild incisional pain. I am still taking it easy. I am so grateful.
Thanks for all your well wishes!
Janet
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Yay, Janet,this is incredibly encouraging! Hope all your days are pain-free!
Eve
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Uplifting to read.
4
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Hi all,
I've been a little quiet lately due to a severe bout of anxiety/depression, but I am seeing my GP next week to get some help. I am convinced that most of the anxiety, depression and cognitive crap i'm going through are side effects of the meds I'm on for headaches..The Topamax was so hard to get used to with it's propensity to cause crying fits and the Neurontin gave me bad fatigue symptoms. I'd like to detox from all these meds to see what's going on with myself psychologically and to see how bad the headaches are without the meds. Janet is our little guinea pig for us long-term headache sufferers who are sick to death of the toxic effects of the meds. She is also our very brave HERO for taking this huge step. Thank you, thankyou, thankyou, Janet!
Capt Deb 8)
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Deb,
At work today... will call you on my next coffee break, if you are up for it..... :-*
xoxoxoxo
Your cursed cruise director
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Always, sweetie!
Capt Deb
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That is GREAT, Janet!!
I hope that it continues to go so well. Hopefully this is something that can be done to relieve all those that suffer daily with these headaches. I can't tell you how much I feel for you and have taken for granted that I DON"T have those horrible headaches anymore -- for me, the surgery ended them. I'd take a paralyzed face any day!! ;D
Capt. Deb - I willl be praying for you -- I have missed you ever-cheerful and humorous posts, as I know that you are so helpful to so many here...
K
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Janet, this is such good news for you and potentially for the rest of us. Since there seemed to be several things the doctor addressed, was he -- or are you -- able to isolate what might be a direct result of the AN surgery? Might the congenital condition he discovered be something some of us have (unknowingly) that might pre-dispose us to headaches post surgery?
Keep up the healing and sharing the good news!!
And Captain Deb, hang in there.
staypoz
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This week has just been brutal for me. My head pounds. Behind my left eye feels like a monster is stabbing me. In southern Ont we have been hit with three major winter storms in a 7 day period. This one is suppose to last 36 hrs and dump 50cm of snow on us. I cannot take it. To top things off work has been crap, with new policy changes from the newly formed human resources committee. I feel like the GM is more or less gunning for me because I am a liability because of the neuroma.
The company I work for was great until the GM retired in Sept. This new fellow seems to think anyone over the age of 40 should be put out to pasture and if you have a medical condition, too bad, tough luck. Well I'm over 40, with a medical condition and it seems lately I've had more bad days than good days. Come most Fridays my head is ready to explode. Its the pressure and pain behind my eye and temple that drives me insane. I would never wish this medical condition on anyone, but I would love for the GM to just have one of these headaches. I don't know if my occipital nerve is involved, all I know is I am really hurting and the stress at work isn't helping me.
My right hand was so itchy this afternoon, does that mean I'm going to win money? I gave out so money today because the city workers got their retro pay and the pending storm. If I win money I'm going to the House to have the nerve graft? I've always wanted to see California.
I'm going to try some new med now for the pain. Snowed in and in pain.
Anne Marie
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Anne Marie I'm sorry that you are having a rough time I will do a GM headache dance for you and then he will know. There sure is alot of this sort of thing going on in business lately. I was just sitting home feeling sorry for myself because I have the flu and I even get the shot every year. So they had better do a better job with it next year or what is the point. We can have a cyber sick bed and we can have everyone take care of us and fluff our pillows. We can just be sick with no worries. Wouldn't that be nice. Kisses to your forehead. :-* 16
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16,
Kisses right back at you. The med's took the edge off my headache. Don't worry I'm documenting everything. One of the nurses my husband works with, her husband is a lawuer and he handles work related issues. He is going to look over the memo for me. That should help me headache!! :-*
Anne Marie
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I'm glad you have a someone who can help you with that. I'm very glad that your headache is not as bad now. If only I could get the snow to stop for you! I still think we should snuggle in our sick bed and let everyone take care of us. I'm freezing right now so I need extra blankets. :-* 16
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16 & Anne Marie~
"here are your extra blankets, mam...would you like anything else right now?"
"let me fluff those pillows for you and get you a cold cloth for your head..."
Is that good, girls?
K
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That's better can I have some ice water to. Then I promise I will go to sleep. ;) 16
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I was thrilled to hear about your successful surgery. After numerous neurologists and scores of drugs, I am thinking that there must be a better solution. I will be very interested to hear about your progress. I noticed that you mentioned that your pain was primarily on the opposite side of your head from the surgery. Was it also on the side of the surgery? Did the doctor conclude that it was the result of the surgery? My pain is specifically on the side of my surgery and began seriously about 3-4 months post-op. I have an appointment w/Dr. Silberstein at Thomas Jeff in May (took me 3 months to get appt.) but wondering if I should consult your doctor in DC. I live in NYC, so either trip is doable.
Thanks so much for keeping us informed.
Robin
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K & 16,
You are both just too good to me. Thanks!! I wonder how Capt Deb is making out with her head. From what I saw on the weather network this storm system that is dumping 50 cm of snow on me has effected the entire eastern seaboard. So my sister who is a snow bird in Largo Florida might not be basking in the sun, what a nice thought. I really do love my sister, honest she is the greatest!!! My head still hurts :'(
Anne Marie
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Robin let us know how your appt goes since headaches are a real problem for some of us.
Anne Marie thanks for snuggling with me I'm feeling better today. It was a rough 36 hours though. K thanks for the tucking in and fluffing it helped. I am worried about our Capt also.
Capt Deb we have recently weaned my son down on his topamax and it has helped his cognitive level and he is now making progress again. It does help his nausea, vomiting. dizziness, seizures and headaches, but at what cost is to high? He has to be able to function. Keep us posted. We are worried about you and want the best for you.
Janet please do keep us posted we are all grateful to you for blazing this path.
Kisses to everyones foreheads. :-* 16
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Here are a few things in reply to some of your questions.
Staypoz, I had migrane type headaches on the left side prior to my right AN surgery. The headaches prior to my surgery were usually behind the left eye. They responded fairly well to Maxalt which works on the vascular system. Knowing what I know now, I think these were being triggered by the left occipital nerve being too close to a blood vessel and not the AN. This causes that behind the eye pain, even though the nerve runs outside the skull, coming from the spinal cord. Maybe it was the head frame used in securing the head in surgery that caused the vessel to pierce the nerve on the left side. Maybe it was just the result of having surgery that caused a minute change, putting an already too close nerve and vessel together. I was never looking for blame, only relief.
I don't think the congenital defect on the right side was causing my problems. The incisional pain on the right was mostly if I touched it. It always felt mildly inflammed in the general area. I didn't focus on it to much because the pain on the opposite side was such a problem. This was from the lesser occipital nerve in the scar tissue and smaller nerve over the plate.
The occipital nerves are bilateral, as well as the lessor occipital nerves. Maybe I was lucky to have the pain on the opposite side so it could be sorted out from the AN easier.
Occipital blocks, done in a pain clinic, can show where the pain is coming from.
Deb, I know how difficult it is to be on medication. I couldn't take the Neurontin or Trileptal. Couldn't do simple math in my head or remember details. I found myself sitting and staring. Have you had a nerve block to pin point the source? In my area, the headache neurologist had to send me to the pain clinic department for a block. I know you had a mid fossa approach. Maybe a different nerve is causing this but the occipital nerve runs like a rams horn so maybe it could.
Even before I saw Dr Ducic, I had methodically started to rule causes out. I asked for a neck MRI and nerve block. I was never offered one but when I asked no one refused me.
Yardstick,
It is bad enough having headaches, let alone trying to convince others how bad you feel daily! I pray that you will get some resolution soon with your head and your job.
I hope I didn't leave anyone's questions out. Thanks for all your comments and well wishes!
PS. I no longer need to sleep with my head elevated! I've been sleeping with one pillow.
Janet
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Thanks, Janet!!
Has anyone heard from dmulley re the nerve release surgery?
staypoz
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Janet, which surgical approach did you have? I can't remember. I'm weaning off the Neurontin and should be completely off it within 2 weeks and the only headache med I'll be left with will be the Topamax. Maybe my brain will unfog a bit! Bleah! My pre-op migraines were pre-dominantly left-sided, but may have switched sides a few times, I don't remember that either! Matter of fact, I don't remember what it's like to not have a headache! Don't that just suck? Ah well--life goes on. I'm taking Oprah's "A New Earth" online class and learning how to have inner peace in spite of having a failing body. Don't that beat all! God bless Oprah. So hard to concentrate right now--got new happy pills today--oops that's another thread.......
Glad to hear you are continuing to do well Janet--must be like they screwed a new head right on ya!
Love and hugs,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirateface_sticking_out_tongue_ty_w.gif)
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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
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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
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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 :)
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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.
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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
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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.
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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
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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
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Hi janet,
Great to see that you are doing well. I'll message you shortly
Laz
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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
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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
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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
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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
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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
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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