ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: GeorgiaMei on August 21, 2008, 02:12:05 pm
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Hi ANA community. I am new to the site and wanted to post a few questions. I am 30 yo, and had a large right-sided AN removed 6 mos. ago and have had some complications, including 2 post-op seizures (with ongoing EEG abnormalities), several sinus clots in my brain, and ongoing severe headaches. My surgery has done by a very skilled and experienced AN surgeon who has been surprised by my complications. I am on 2 different narcotics for pain, Keppra and Depakote, and have been regularly seeing an acupuncturist, as well as eating well and exercising.
My first question is whether anyone has had seizures and/or blood clots post-op and if so, how were they treated and did they resolve??
My second question is whether anyone has found helpful hints for helping depression linked to pain and facial paralysis. I am not able to take an antidepressant b/c it will lower my seizure threshold.
Finally, I'm looking for anyone who is in their 30s or 40s who has gone through this whole process before trying to have kids to email.
Thanks so much for any support.
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GeorgiaMei:
Welcome. Please accept my sympathy for your post-op complications. I'm sure you'll find some helpful advice and information here.
Unfortunately, I don't fit into the categories you indicated you're seeking for advice and I don't have any useful hints for battling post-op depression. However, the good news is that there are many folks that visit this site and post messages that do fit your criteria and will likely have useful suggestions to offer. I suggest you check back here often in the next few days.
Jim
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Hi GeorgiaMei: I haven't had all your complications, but I have the facial paralysis - if your facial nerve wasn't severed there's a great chance your nerve will rejuvenate over time; after a year or so you can ask your docs about nerve grafts, etc.
You are on Depakote which raises your seizure threshold (which is a help !), ask your psychiatrist/neurologist which antidepressant is best for you. The newer ones have less
side effects. Depression happens after what you/we have been through, whether it's situational or chemical....
Just take a deep breath, you have been through so much, take the year to take care of yourself.
Always good thoughts, Nancy
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Hi there i am 40+ lol, i had a over 4.5 AN removed dec 08 i am only now coming to terms with it, i was also left with grade 5 facial palsy which is improving , infact i met three people today who i had not seen for months and thats the first thing they commented on was how good my face is looking it is a very slow process but it does improve i have been exercising my face for about 20 months now and i have a facial machine on loan from the local hosp also i use warm and cold flannels to stimulate the nerves and i massage it as well, its only over the past couple of months i have seen a difference in my face.
There is another girl on here called lisa who might see your question she had a large AN removed and has 4 kids and after her op she went on to have another kid. I was also in touch with a lady who went on to have 4 boys after her AN op.
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Hi,
I'm 49 and through having kids, but I definitely have had experience with the depression. I have been told that this is normal; after all, you have been through a lot and have had serious complications. If you're not seeing a therapist I would definitely do that. I have been doing that and it has really helped. Also, just being on this site will help you. I'm so sorry you have had to go through this and I wish you well. Keep posting.
Marci
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Thanks so much to everyone for their support. It is helpful to hear from other people who have also gone through this process. I appreciate your kind thoughts. Take care, Karen
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Hi Karen-
I'm jumping on a little late, but did want to comment on the facial issues and depression. As Nancy said, you may be able to find an anti depressant that would work without upping the seizure risk. Barring that, don't underestimate sunlight and exercise. I have had some boughts with depression and find that both of these things help. It can be very tempting to stay inside and isolate yourself, but try to break that cycle if you find yourself doing that.
Those of us who have facial issues have some definite hurdles to pass. In the early days, I literally forced myself to go someplace once a day just so that I could prove to myself that people weren't going to run screaming at the sight of my face ;). There were times when this was SO difficult because I felt so self-conscious about how I looked. But, each time I went out in public it got a little easier. Spending time with friends can also be a big help.
I guess that the biggest thing to remember when you are fighting feelings of depression is that you can't allow yourself to give into it - oh, that doesn't mean you can't have an occasional pity party, but you can't let it take over. Find something to smile about each and every day.
I hope this doesn't sound preachy, because I certainly don't intend it that way. I just know how hard it is to cope when you are feeling depressed. Hopefully you'll find some tools that will help you get through this period.
hugs to you,
Debbi
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Hi, I am 43 and not having anymore children but I have had the depression. I also have had 4 seizures in the 3 years following my surgery. I have a strange aura like I am outside of my body before the sezure. I have no memory during the time of the seizure. My doctor refers to this type as absentee seizures. I have also noticed that each time I have had one I was extremely run down and ehausted prior to the sezure. I have learned that this must have some kind of trigger for me. I now make sure that I get plenty of sleep and take better care of myself. I have not had anymore and I am nolonger taking any medication for this problem. This has worked for me for about a year seizre free. As for the depression, I see a therapist about once every 3 months, more if I feel I need it. I also take antidepressants and have stayed depression free for the most part. I still have some days I might feel a little depressed but the therapy is key.
Linda Rene
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I'm sorry to hear you have had problems and complications.
I haven't experienced depression myself and am yet to have treatment for my AN so i can't give you any advice linked to that. I do know a little about depression from an academic perspective though.
there are a whole host of antidepressants out there so there could be a more unusual one that could work for you. I would talk to your doctor about it. That being said counselling is great for depression - i would not underestimate the power of talking to an impartial person. You can say things that can be difficult to express to friends and family (without the risk of causing offence!).
good luck
hannie
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K (Kaybo) had her surgery (& facial paralysis) before she had children. She has three beautiful daughters now. At the end of her posts she includes a link to her blog (which helped me a lot).
Good luck and know you are not alone.
Michelle ;D
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:) Thanks everyone for your support. I am so glad I found this site.
Cheri: I a sorry to hear about your daughter and about your AN. Thanks for the advice about the Depakote. My hair is definitely falling out fast and furiously and I am still struggling w/ depression. I hope to have a clear EEG in November so that I can go off of the anti-convulsants all together.
Also re: the headaches: I have had terrible h/a's but my MD put me on a very low dose of methadone which has covered he pain w/o all of the icky side effects of advil ad other NSAID's.
Thanks and good luck!
Karen
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Hi GeorgiaMei,
Have you seen a headache neurologist or been to a pain clinic? I had severe headaches for years and found it worthwhile to seek out a specialist for headaches. Post AN headaches can be a challenge to treat and need someone who knows all the latest and effective treatments. As good as other doctors can be, they just don't have the day to day focus on headaches.
The other challenge is to get all your doctors talking together to come up with a plan to address all and each of your problems. I found that you have to be proactive in finding help. Expect a lot of trial and error.
I was fortunate to figure out what was causing my headaches and to find a doctor to fix it. It took a lot of energy on my part to get relief. I took a lot of wrong turns before getting it right.
Sincere Best Wishes
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Thanks Cheri and Janet for the advice. I will definitely ask about Selenium and I've always wanted curly hair!!
Janet: I have seen a headache specialist who wasn't very helpful. It's amazing how little empathy people can have in the medical profession (I am a nurse!!). I think if you haven't dealt with chronic pain, it's hard to understand. I am weaning myself down in dosage though, since the headaches are improving slowly.
Thanks for the support!!!
Karen
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Cheri, everyone's experience is different, but mine started within two weeks after surgery. Mine have become less frequent and of shorter duration the further I am from my surgery (4 plus years) so I am hopeful they will eventually resolve themselves.
staypoz
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Cheri:
Allow me to echo staypoz's observation that everyone's experience is different. Although I underwent retosigmoid surgery, then FSR (3 months later), I did not experience headaches as a result of either procedure. However, I know from the messages on this forum that post-op or post-rad headaches are not uncommon. I sympathize with those who suffer these headaches and I pray for their relief.
Jim
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I just want to reiterate what Jim and Poz said. All AN patients are different.
I'm about 17 months post op and I don't experience headaches - other than the normal, everyday headaches that everyone gets on occasion. Same goes for pre op, also.
Go I guess the answer to headaches and ANs is "it all depends" :P
Jan
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I had HORRIBLE headaches BEFORE my AN surgery but RARELY get one now!! For me, I got that big ole tumor out of my head and wa-la! ;)
K
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Cheri,
I had migraine headaches before, but the ones I experience now occurred immediately after surgery and are more intense. I would take a very strong pain killer or two, gravol and sleep off the migraine. Sometimes I would vomit and the migraine would last a few days. I had triggers. The headaches I have now are daily, with no triggers. Some days its just a dull ache and other days it is shear pain. When I experience facial pain and a headache together my bed and I are bestest friends :'(, because I am vile, upset and I can't function.
Anne Marie
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Hi Cheri. I was having pretty intense headaches before the surgery and have been prone to them since my teens. The severe pain started immediately post-op, was also associated with nausea, and has slowly gotten better over time. I did have some additional, very rare, complications which are probably related to the headaches, so certainly not everybody gets them. I'm so glad to hear you have not had any! Take good care! Karen
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Cheri:
Allow me to echo staypoz's observation that everyone's experience is different. Although I underwent retosigmoid surgery, then FSR (3 months later), I did not experience headaches as a result of either procedure. However, I know from the messages on this forum that post-op or post-rad headaches are not uncommon. I sympathize with those who suffer these headaches and I pray for their relief.
Jim
Hi Jim
I just wondered what FSR was? I'm still trying to pick up the AN lingo!
Hannie
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Hannie -
I believe FSR stands for Fractionated Sterotactic Radiation.
Correct, Jim?
But I don't know how it differs (if it does) from CK or GK. Can you help me out with this one?
Jan
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Hannie -
I believe FSR stands for Fractionated Sterotactic Radiation.
Correct, Jim?
But I don't know how it differs (if it does) from CK or GK. Can you help me out with this one?
Jan
Hi Jan (and all)
the key word is "fractionated", which means they break it up over a number of days/doses. Typically, GK is a single day/dose, thus, not deemed "fractionated" (although, there is on-going studies, esp. by Dr. Noren in Providence, who is playing around with "fractionated" GK... not sure of his outcomes/data on this).
Hope that helps.
Phyl