Occipital Neuralgia Online Support Group

Hi everyone,

I really think it would be valuable for everyone here who had had decompression surgery to post updates here. People are very interested in how we recover.

Chloe

I typed a very long post about my recovery and hit the wrong button and lost it grrr. So here goes again:

I am four months post nerve decompression surgery. It was my third surgery because my surgeon only does one area at a time. It dragged out the recovery for almost a year and I do wish I had had all done at once.

I had the right side done in September 2010 and the left in December 2010. The left side healed poorly and actually entrapped a nerve at my crown which the surgeon fixed free of charge in a surgery in June 2011.

My ON started after I ruptured my C3-C4 disk after my treadmill suddenly stopped. I spent 3 years in bed in agony.

I am recovering really well 4 months post surgery. My right side is 100% successful and the left side is getting better each day. I still have some ice pick and sharp spasms occasionally but the pain is short. The left side still feels hypersensitive when touched but is getting better daily.

I am trying to get back into life and have found some obstacles due to the atrophy of my muscles while bedbound. I am walking now and have started hydrotherapy to help my body recover.

Mentally I am struggling and really get emotional with the frustration of my weakened body and I believe I have some PTSD from my ON. Before surgery going anywhere caused severe pain due to my light, sound and smell sensitivity. So initially post surgery I didn’t want to go out at all. So my wonderful mother in law decided to ignore my excuses and honk the horn until I came out with her…it was what I needed. We walk together daily. My brain fog is lifting and making decisions is becoming easier, but I am a long way from who I was before ON. It’s funny that some of my friends are returning, but I feel a little bitterness in that. No, I couldn’t go out, but I could keep in touch and even someone sitting with me a little while would have helped. They are making excuses for their distance …

I love just sitting in the sunshine reading on my kindle, another thing I can do now… before I was in so much pain I couldn’t concentrate for long so I seemed to read the same paragraph over and over and gave up …. Life is going forward now. I am loving it!

I find it hard to visit the forum because it brings back memories of my darkest times with ON and it is hard to read about all my forum members who still suffer: but I am here, just not every day.

I care for anyone who may be going through what I went through and if I can help in any way please do not hesitate to contact me.

Gentlist hugs,

Chloe

You keep going one foot at a time. I want to say thank you to you for your dedication to this forum. For a good majority of us here it is our only support. It means so much to see that you are regaining your freedom from this bondage of pain that we all have. I wish you peace and laughs on your walks with your mother-in-law and to keep focusing on your bright and sunny future. God Bless you for all your many hours you have spent to give us HOPE. hugs to you xxxooo

It's been a year and a few months since my occipital nerve decompression surgery with Dr. Perry, and I'm very pleased with the results! It's pretty rare that I have a headache or any stabbing pains in the back of my head, and when I do, it's usually because every other part of my head is killing me. So the threshold for getting a headache or pain back there is much, much higher than before surgery.

I have noticed, however, that the back of my head is still tender, so I have to use a pillow in the car, and I can't sleep on my back. If I wind up on my back, I'll usually wake up in pain, but it goes away as soon as I get up or roll over. The only time it really becomes problematic is sometimes on road trips because, even with the pillow, my head is constantly bobbing against the back of the seat, which over a few hours, causes a headache. Does this happen to any of you?

The surgery did not help with my frontal headaches or with the pain in and behind my ears, so I'm going back Jan 18th to have Dr. Perry do the frontal surgery and the lesser occipital nerves.

Arlet, good to hear from you. I am just 4 weeks 31 days to be exact post op. Dr ducic did occipital decompression. So far I have the tender and pain from incisions but I am happy. I have only had 3 migraines in the 31 days. Before the surgery I had 3-7 in 1 week. Good luck with this next one I hope it takes care of the other pain.

Arlet, Also glad to hear from you. It is a shame that you are still having some residual pain. Most of the headache pains I get are from the cold or doing too much. I have a new neuro doc, that gave me some new medication, and if I get a headache, the pain is usually cut in half. Good Luck with your next surgery.

Sandy

Thanks, Mamalu and Sandy!

Sandy, I am not all surprised that I'm still having so much trouble with the front of my head. That was always my primary problem, and I thought that's where I was going to have surgery! I only had occasional stabbing pains in the back of my head, when Dr. Blake did the occipital nerve blocks, everything suddenly exploded back there and there was no way I could not have the occipital decompression. I don't blame Dr. Blake for doing the blocks (though I do wish she would have mentioned the possibility of the blocks making things worse) because there was obviously a problem there; I just didn't really notice it too much before that. Both Dr Blake and Dr Perry were optimistic that the occipital decompression would help with my frontal headaches, but my husband and I never really expected that. It was just kind of wishful thinking for us. I just hate that it's such a long journey to relief (made worse by having to delay the second surgery until after we could pay off the first surgery since our insurance (BCBSTX) won't cover either)!

I can't believe that BCBS of TX is that different from BCBS of PA. It is a shame, mine was paid for. Good Luck with your future surgery. Keep us posted.

Arlet, I have bcbs of illinois. They first told me I need a neurosurgeon approval. They have never had this dx come across their desk. They didnt even know what it was. I had sent them all kinds of research and studies and went to a dr who wanted to do the nerve stim on me. he was @ northwestern huge teaching hos here in Chicago. When i asked him how many of those hes done he said about 23-30. I said well my Dr has done almost 2000. His mouth dropped. I begged him to write a note saying I needed this surgery I told him it was my last chance at hope to be normal. I started crying and told him I am spending my days in bed in dark crying for relief. Well to my surprise he said he recommended his surgery but said he also evaluated me and feels I might benefit from decompression.Anyhow insurance said they denied it and i will be getting a letter in the mail. 1 week later they called me and said it was approved. I do know that once u pay for it they wont reimburse u. But I would appeal appeal dont give up. let me know what happens good luck

Hey Arlet, keep us posted how the rest of your surgery goes in the next week. I also have pain to my left ear (pressure right behind it) so I will make sure I bring that up. Sorry you are having to go through another surgery, but I hope all of us will look back on this one day and think "I can not believe how I lived through that." pain hardly anyone can imagine but us..

Will be thinking of you!

**HUGS**

Nicole

Nskoog24