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10/11/2009 04:03 PM

Occipital nerve decompression surgery

dklodginski
dklodginskiPosts: 8
New Member

Hi, I am new to this, so I may not be looking in the right place. I have occipital neuralgia. I had it as a teenager and then it went away. About two and a half years ago it returned. I am on Botox injections every 3 months and it has varying results. I am considering going to Dr. Blake for nerve decompression surgery. I have read a number of postings about how wonderful Drs Blake and Perry are. But I haven't read a posting from anyone that says that the surgery was a major success. Am I looking in the wrong place?Sad
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10/11/2009 06:05 PM
bmac
Posts: 307
Member
I'm an Advocate

Hi- Welcome to our site. We have a lot of wonderful folks on this site that will share with you their experiences.

I have not had the surgery so am unable to answer your question. Give this a few hours and I'm sure someone will respond.

BMac


10/11/2009 07:06 PM
brugette
brugette  
Posts: 941
Senior Member

Unfortunately, you are at the right place, those of us who suffer from ON. There have been a few who have had the surgery. I'm sure you'll hear from them in the next few days. If you look at some old posts you'll find Lisasmom, her daughter had both surgeries and is doing well, she is now back in school and resuming her life, though her pain is 100% gone, it's a truly touching story. Since you had it has a teen, like Lisa, I'm sure you understand what that means.

Do the docs have any idea why it went away (we want the magic potion) or why it's back? What are you symptoms, since each of us have varying symptoms.

I haven't had the surgery yet because the ON/SON isn't screaming the loudest. I recently found out that I have two back discs in my mid back and they are hurting the worst right now. I go with the pain flow as to what I treat.

Keep checking in and I'm sure we'll get some more info for you.

Patty


10/12/2009 02:22 PM
WendyLou
WendyLou  
Posts: 380
Member

You should also post on the New Daily Persistant Headache forum - there are many people there who have had the surgery. I agree - most seem to be mixed results. Some have improvement, others don't. If you post there and ask people to share their experiences I'm sure they will. Take care.

11/01/2009 07:40 PM
snelko
snelko  
Posts: 247
Member

Hi. I did have the nerve decompression surgery performed by Dr. Perry. Mine was on July 7, 2009. It was like a miracle for me. I had been in a car accident on July 28, 2008 and suffered whiplash. Prior to that day I never had migraines. I have suffered most of my life (25 years) with lower back pain, but never anything in the cervical area. Right after the accident I had immediate pain in the rear of my neck, and mild headaches. By the time January 2009 came, I was having a non-stop 24-7 headache that caused me to live in a dark room with little or no noise. The only time I ever left the house was for doctor appointments. I tried physical therapists, chiropractors (this did relieve the muscular pain in my neck), accupuncturists, neurologists, neurosurgeons, etc. I had taken so many neurology medicines I can't even count. Nothing even made a dent. Through my husbands relentless searching we found two doctors, Dr. Perry and Dr. Jho. Dr. Jho was from Pittsburgh, where we lived, but he wouldn't do the surgery because the nerve blocks didn't work, and my headaches were from a car accident. Dr. Perry and Dr. Blake were more than willing to help out. I went down to Houston on a Sunday, met them on Monday, and was supposed to have the surgery on Wednesday, but because I was apparently on a pain medicine (that was a blood thinner) I had to wait until the following week. But it was definitely worth the wait. The first thing I remember after the surgery was asking myself "where did the headache go"?

I wish you well. If you have any other questions or are looking for more information, I have a group on Facebook called Migraine or Occipital Neuralgia, please feel free to check it out.


11/04/2009 06:24 PM
tracydentracy
Posts: 2
New Member

Hi,

I am in the process of setting a date for the same surgery you had also with Dr. Perry. I am anxious and was wondering if I could ask you some questions about the surgery. My history involves migraines as a teenager and they were gone until about 4 years ago. They have slowly graduated and intensified over the last 4 years to the point that I hardly get out of my bed. They are now 24/7 and I have seen over 18 Specialist and now have this new diagnosis. "Occipital Neuralgia"!! I must admit I feel excited too.... to think that relief is in site. I noticed on the recovery time was listed 3-6 months. (with intense pain), I am wondering how your recovery went. How your surgery went. Thank you for your time,

Tracy


11/06/2009 06:58 AM
snelko
snelko  
Posts: 247
Member

Tracy,

My surgery went very well. As for the recovery, I'm not sure what your pain tolerance or experiences are, but I have had over 10 surgeries in my life, so I guess you could say my pain level is pretty high. However, these headaches I had prior to the surgery were very near to the top of my level, and the worst part was they were constant (24/7 like you indicated).

When I had the surgery, as I mentioned, the first thing I remember after waking was that the headaches were gone. In the few days after surgery (I had surgery on both right and left Greater Occipital Nerves, and the right Lesser Occipital Nerve), the majority of the back of my head was numb. Also, my chin (if you can believe it) was numb, gradually as the numbness wore off, and after the pain pump was removed, the main real pain I had was from the actual surgery (normal recovery type stuff), nothing as bad as the headaches were.

I will say that over the course of the 1st 3-4 months, at first more frequent, then lesser, you will get very "strange" feelings in the back and top of your head as the nerves are reconnecting. As of tomorrow, I will be officially 4 months out, and aside from a couple of mild (less than 5) headaches, I haven't had any. Finally the "strange" feelings are all gone, and aside from still having some concentration and focus issues, it is nothing like being in the pain I was once in. I am living my life again. I can watch my daughters cheerlead, and dance. I can also go out to dinner, watch movies, and even do some work. It is wonderful having my life back again.

If you are on facebook, please look up my group Migraines or Occipital Neuralgia. If you join I will add you as a friend, and I can send you my number if you want to talk directly.

Good Luck, and I hope your feeling better soon.Smile

Sandy


11/06/2009 12:31 PM
dklodginski
dklodginskiPosts: 8
New Member

Tracy,

My name is Dick and I live in Clear Lake. I have a friend that grew up in Humble. Our history with ON sounds similar. I had terrible migraines as a teenager. Once, when I was working at a grocery store, I had a terrible headache all day on Saturday. I was walking back to the storeroom that afternoon and I looked down and my left arm had no feeling and my hand was coming like it was going to choke me. I grabbed my arm and my hand grabbed hold of my apron. I started hitting my arm and feeling finally came back. I looked around to see if anyone had seen me. It kind of embarassing. I finally went home around 8:30. When driving home, I remember thinking that I had better slow down. I looked at my speedometer and I was only going 20 MPH but things were just flashing by. The doctor said that it was probably caused by pressue on my nerve to my eyes. The Doctor made the right diagnosis but the wrong nerve.

Good luck on your surgery. I am about convinced that I need to have the surgery too. Keep in touch.


04/19/2010 11:11 AM
dklodginski
dklodginskiPosts: 8
New Member

I went to Dr. Blake and she referred me to Dr. Perry for decompression surgury. Right now we are dealing with the insurance company, trying to get them to pay for the surgery. I have UHC and Dr. Perry said that sometimes they pay for it and sometimes they don't. Wish me luck

In the mean time, Dr. Blake put me on Lyrica. The medication is used to treat the pain of fibromyalgia. The medication is working. My pain in the back of my head and in my neck have been significantly reduced. Unfortunately, it doesn't seem to help my headaches. But, any relief is welcome. I'll keep you informed.


04/19/2010 12:14 PM
bmac
Posts: 307
Member
I'm an Advocate

Hi - All of us our different so we just have to keep trying things until we find something that works. Gladd that Lyrica is working for you. it did not work for me.

Dr. Blake/Perry's surger works for some and not others.

I pray you will find the righ solution.

I'm finishing a book and the last chapter is decicated to Occipital Neuralgia. it is my hope that it will bring attention to this often mis-diagnosed condition as well as much-needed treatment that does not necessarily require surgery.

BMac

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