ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Asa52 on February 17, 2011, 08:11:24 pm
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Hello to all!
I had a small AN removed 5 months ago and, thanks to two really great surgeons in Austin, have been doing well (little hearing loss, no vertigo, and no paralysis). My only problem is a recent development: intense pain in the back of my head, at the top of the neck.
Before going back to the surgeons, I just wanted to ask if any of you have had this?
Thanks!
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Hi- I am 17 months post op. I suffer from post op headaches that originate at the back of my head and the top of my neck. Does your neck pain turn into a headache at all or does it stay just in that spot?
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No, not really a headache. It feels more like an intense burning sensation on the back of my head...right at the top of the neck column.
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Do you have balance issues? I have had neck problems. They seemed to stem from straining to maintain balance. A chiropractor helped.
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Fortunately, no. No balance issues to speak of. I get slightly dizzy if I move backwards too quickly or if I bend over and then straighten up & walking too fast. But really, the only issue I've had problems with so far is the pain in back of my head.
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Which type of surgery did you have?
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Hi Asa52 and welcome to the forum .....
Not sure this is any help, but after my first retrosigmoid (suboccipital) surgery 16 years ago (which was not for an AN but for microvascular decompression surgery at the brainstem), for many years I could not lie down on the back of my head because of the burning pain you are describing. For whatever reason, it gradually went away and did not recur following my AN surgery on the opposite side.
Since this is a recent development for you, I would certainly mention it to my doctor if I were you. It may be a nerve inflammation or other condition that needs to be looked at and/or treated.
Let us know how you are doing.
Clarice
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Hello to all!
I had a small AN removed 5 months ago and, thanks to two really great surgeons in Austin, have been doing well (little hearing loss, no vertigo, and no paralysis). My only problem is a recent development: intense pain in the back of my head, at the top of the neck.
Before going back to the surgeons, I just wanted to ask if any of you have had this?
Thanks!
hi my name is nichol .and you are not alone....my surgery was a year and a half ago and im having much pain in head and neck as well as hearing loss and facial spasms.......
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I asked which type of surgery because it seemed as though this is most common I have read on people who have had retrosigmoid surgery.
BUT, I had some very minor achy neck aches previous to my middle fossa surgery and after my surgery it tended to get worse in the neck and radiates into the base of skull area too. It actually has nothing to do with the area my surgery was on, actually opposite side.
Couple thoughts:
Can the pains we have be associated from being gripped down in a vise type device for many hours (mine was 7), possibly putting pressure or damage on muscles or nerves in the base of skull & neck region?? (read that type of thought elsewhere here)
I do have the SSD (single sided deafness). Wonder if pain can be related from straining from turning my head and neck a LOT to hear too????
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My surgeons (by the way, both were fantastic!) used the retrosigmoid (subocciipital) approach.
The earliest I could get an appointment with the lead surgeon was a month away...can't wait that long. So I went ahead and scheduled one with my regular doctor. Hopefully, I can explain to him what's going on and he can maybe prescribe/do something. We'll see. In the mean time, the neck has gone away as suddenly as it appeared. Go figure. But I'm still keeping both of those appointments for now, just in case.
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Very smart to keep the appointments, just in case ;)
Glad the pain is better!
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Hi Asa52 :)
I am sorry that you are dealing with this neck pain! Glad to hear it's lightened. You might find that it comes and goes as it does for me. My favorite remedy is "tiger balm" and a heating pad. Have someone massage the base of your skull where your neck meets it. It really helps! I agree that it's so important to keep all your Dr. appointments so they can follow you in your healing process. I know sometimes I don't feel like going but it's important as things will come up.
I am 7 months post op now following a middle fossa approach. One thing I have learned is to be patient with myself in my recovery as at times it feels like it's "snail pace". I have had head and neck pain and have also attributed it to the vice grib they had my head in for the surgery. I did have 2 herniated discs in my neck going into surgery so I was really nervous they would hurt it worse. There's really no way around the position your head and neck are in during surgery so it does affect surrounding muscles, nerves and tissues. I am in a position where I needed neck surgery prior to my AN surgery but I'm just trying to avoid it like the plague! ha! Hang in there and I offer you my support in your recovery!!! 5 months post op is something to be proud of! ;)
Wendy
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Still here. I just wanted to thank everyone for the kind words and the info.
I go to the neuro next Wednesday and will post what he says afterwards.
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Well, it took me longer to post than I had anticipated; my apologies. The neuro is convinced that my occipital nerve is being irritated somehow. He believes one of three things is happening: there is still some swelling that is pressing on the nerve, there is scar tissue growing aroung the nerve, or the nerve was damaged during surgery.
I'm on gabapentin (sp?) for a few weeks to see if it can relieve some of the pain (it hasn't) and after that, we'll discuss other options. Basically, the options are either live with the pain or surgery. If there's scar tissue they can remove it or possibly reposition the nerve. If it's a damaged nerve, they can sever it (yikes!). That means that the entire back of my head will be numb forever. And, even if they do that procedure, the end of the nerve that is left can also become irritated and I'll be right back where I started.
So, for now, it's a waiting game. I just wanted to post what my neuro had said in case it would help any of you with similar problems.
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Asa52:
A heating pad does wonders for my neck pain.
Syl
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I take it the pain returned? I take it the doctor didn't mention anything about occipital nerve blocks or injections? Since they feel that is where the pain is coming from, a lot of times they can do injections in the nerve to see if it helps. You can read up on that if it still bothers you. I tried on 3 months ago and it helped a little, but my pain also is farther in my neck too and finally was also diagnosed with cervical facet syndrome. I was supposed to start the same medicine you are on, but am wanting to get off medicines and hoping for other injection options. Waiting to get back into doctor.
I too have used heat. I was given a gift called a Bed Buddy. It is basically like rice in a sock type thing, but already made up. I've seen them at Walmart & Walgreens before. I also love a good size gel ice pad that will fit on the base of my skull nice.
Keep us posted how the medicine works for you.
Best wishes,
Denise
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Syl, thanks for the advice. I was getting ready to reply and talk about a thing I have called a Bed Buddy when I saw Denise's post. I actually have two of them and, in my opinion, they're better than a heating pad...you can 'zap' it as hot as you want and position it anywhere you want without worrying about wires breaking and suchHave
And yes, we talked about injections but somehow got off the subject. You ssid you've had them, Denise? Did they work and for how long?
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I'm a bit curious as to what kind of surgery you had?
I suffered from some neck pain and base of the skull pain BEFORE going into surgery, but not severe. It was brought to the attention of my neurotologist and neurosurgeon prior to my middle fossa surgery. Well, after my surgery, I started actually having some lower back pain along with the neck acting up too, and head pressure at times. I did some P.T. and some meds for awhile, got a bit better and back was great. My situation was tricky because I also was diagnosed with another thing (that I've had all worked up on and they seemed to rule out as source of pain for now, so I'll skip adding that confusion for now). Anyways, suddenly my pains got worse again anytime I cough, sneeze, bowl strain, etc. My main head pain seems to be the base of the skull, into the neck area, and then the whole head pressure at times. I have seen neurologist who said muscles, and tension migraines, etc.
I too went to a pain clinic who did some trigger points and an occipital nerve block and some other oral meds, over a period of time of course. This all helped keep me from trips to ER in my pain. Well, the pain isn't getting better and the pain clinic doctor, who is also an anesthesiologist, recommend I go to the Michigan Head Pain and Neurological Institute here in Michigan. He said he thought I needed a better diagnosis to work with. I just went March 1st. There we did discuss something that I have read on here before that was related to trauma to nerves, muscles and ligaments after surgeries. We talked about how the head is positioned in a vise like device for such a long period of time while doing the surgery and it can be a huge trauma to parts of the body. For me they said especially made since how it went about because I had some mild issues before the surgery and it all worsened after. I was in a car accident where I hit my head very hard on the front dash and had a bad concussion 20 years previous to the surgery too, it is possible that some degeneration/arthritis stuff has set in my neck area because of that too.?.?
I ended up being diagnosed with cervical facet syndrome, cervecogenic headache, myofascial spasm , tension migraine, TMJ disorder and they said that is it for now. I have to go back. Also because I am deaf on the one side I tend to turn my head a lot to try to hear, so that puts a lot of extra strain on all those areas, ugh. I had never heard of the 1st 2 diagnosis, but when looking into them, they made lots of sense to me. Now as for treatment, they actually recommended me for an inpatient hospital stay, which I want to do, but haven't done yet. I was shocked at the TMJ thing too and mentioned I thought I had a tooth ache the past few days, NOPE low and behold I needed a stupid root canal. I have to take care of the tooth and go back. So, no good treatment plan for me yet, sorry.
Sorry this ended up SO long, I think your topic is basically a lot of what I was thinking, so I thought I would explain my 'story' a bit here. I have not been one to post too much on the ANA forum about my neck & head pain because I still believe my pain/situation was here somewhat prior to the surgery. BUT, since I have been following lots on here about similar stories, I figured I need to share now my findings anyways.
I DO believe the surgery positioning and vise and length may have an impact on these head & neck issues! "My opinion"
Denise (MI)
I quoted something I posted on another Headache topic recently because it seems to "cross paths" a lot, the pain stuff that is. This kind of shares more of my stuff.
Denise (MI)
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Well, here it is 9 months after surgery and two or three months after the severe neck pain began. My local neuro originally prescribed Gabapentin. Combining it with a heating pad (microwavable Bed Buddy) worked for a little while, but then seemed to lose its effectivenss. We then switched to Lyrica (the same medicine used for fibromyalgia). For those of you suffering from the same pain...the Lyrica is working.
I'm supposed to take Lyrica twice a day but feel that's a bit much since the pain isn't consistent. I talked to my neuro and now only take it once a day right before bed time.
That hasn't completely stopped the pain. I STILL get hit with it at odd times. And let me tell you, the pain is incredible! VERY intense burning sensation up the back of my neck and onto the side of my head. Very consistent with everything I've read on the occipital nerve.
For now, although the pain crops up from time to time, Lyrica is effective. I hope that helps any of you with the same problem.
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Glad to hear the Lyrica is helping better!!
My doctors decided for me not to even start the Gabapentin but try injections instead. (I am tired of meds and scared for my liver and kidneys). I DID end up getting another occipital nerve block (injection) along with 2 cervical facets and it helped a lot, but only for about 3 weeks :( I just went back for another round of injections to see how it goes. I also have been approved by my insurance for botox injections for headaches, migraines, and the neck pain. It will be discussed more at the end of the month when I got back to pain clinic.
Best wishes for LESS PAIN!!
Denise (MI)
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The retrosigmoid approach comes with a high chance of headaches for a lifetime. I was told that by Dr. Link and Driscoll at Mayo Clinic...that is why I got more opinions and went to House and had translab. Good luck to you...hopefully the headaches will go away!