post treatment complications

[auerk]

My husband is a year and a half post treatment. He has been having a constant headache with severe migaines 2 to 3 times a week. In addition he is also experiencing dizziness, loss of balance, painful spasms under right ear near incision site, headaches brought on by heat, vibrations, and stress. An operation that was supposed to take six hours lasted nine. When he woke up he could not move his arms. Has anyone else had similar experiences or complications? The doctor Keeps saying it will be better in six months and nothing seems to be working. He is not able to work because of his symptoms and side effects.

[TP]

I am so sorry to hear about your husband. Personally having headaches like he is having is reason to insist on getting answers or additional treatment, even if you have to see another Dr. No one should have to have that type of pain. The other symptons he is having I would assume are brought on by the migranes but many of the symptons you listed are typical of some of the disabilities we experience after an AN is removed.  I may be over reacting about the head aches because I do not suffer from them with the exception of pain every now and then. A few weeks before my surgery I had horrible head aches (I would not categorize them as migranes) and my Dr gave me wonderful pills to help and I was still able to cope with day to day activities. After my AN was removed I take occasional aspirin or tylenol and they do the trick! I would ask your husbands Dr if this was his family, what would he suggest they do?

Please keep in touch with us about your husband situation. Our prayers are with you guys! 

[Yvette]

What a terrible ordeal, please keep us posted as to his condition. Best wishes, Yvette

[auerk]

My Husband just got done with 2 days of testing, MRI, MRA, EEG, visual and hearing tests done at a Neurologists office (for a second opinion) and when all was done the neurologist put him on Paxil (anitdepressant) and Gabapentin (Anti-siezure medication) to try and eleviate the headaches. He told the Doctor that when we tried Paxil last time he got really irritable and was told today to double the dose if that happens again. All tests returned normal no new tumors or blood clots but was informed by the neurologists that the nerve in his right ear(side AN tumor was removed on) is firing and he should be able to hear (even though when the Doctor went in the second time to fix a cerebrospinal fluid leak he went through the ear drum). His original neuro-otoligic surgeon kept telling us to wait six months and things will get better, well after almost 2 years of hearing this and with things not getting any better we decided to go for a second opinion and after hearing the results of the Second Doctor we are more confused now than before the consultation. Our original Doctor had him on Topomax and it didn't help with the headaches or the balance isssues. So what do we do now. It's frustrating when we can't find him any relief and today's test's only showed no new tumor growth, It seems like the Doctors don't want to deal with his Migraines and dizziness or we are just getting frustrated with the whole situation. Does anyone know a good Doctor able to deal with these issues ?

[Yvette]

Hey Aurek, what a mess, I'm so sorry to hear of his getting no relief. I don't know where you are, but perhaps a call to the AN specialist at the Mayo Clinic in MN could point you in the right direction. 507-538-1564. Ask for the dept of Neurologic Surgery. Best wishes, I'm praying for you guys! Yvette

[TP]

Find a pain Dr. I went to one and he treated me before I had my AN diagnosed (he was the one who recommended my brain MRI). The thing I liked about a "qualified" pain Dr is they truly want to help you and won't make you feel like a whimp if you tell them about your issues. They understand pain since most are anethesiologists (spelled wrong) and take the time to listen to your problems. We sure hope your husband will find relief real soon.

[barbjo]

Truly sorry to hear of the headaches.  Been there, still doing that.  Right after surgery I was having just aweful headache pain, I had called my surgeon for a refill on pain meds.  To which I got a "no, you shouldn't be having that kind of pain" and to go and tell you he also was quite upset last visit in May '07 that I still have headaches 3 years post surgery.  
But going back to after surgery, since he won't help me in any shape or form I called my GP and got an appt.  She gave me Mobic, explaining that the muscles took a workout in surgery and this would help.  I was still more or less bed-ridden at this point.  The Mobic was a miracle, I was out of bed the next day.   The headaches I have now I can't help you with, because I can't get a grip on them myself.  Horrible pain on right side (surgery on right), again surgeon says it is not related.  Hmmm....right side, right where neuroma was removed.  Gee must be my imagination.
I certainly hope your husband finds relief soon, and don't give up searching for an answer!  You may even find answers with your GP Dr.  All the best! Barb

[yardtick]

Hi Auerk,
I had my surgery Sept of last year and I still get headaches.  All of the triggers that bring on your husbands headaches are the same for me.  Actually everyday this week has been a challenge.  I am going to a pain clincic and doing some physio and it has helped.  I'm on tegratol  T-2's and I take an antidepressant. Sometimes I wonder will I ever be pain free again.  Does your husband ever get the pain that shoots from the top of his ear to behind his eye?  For me that is the worst!!!  When that happens I can hardly see out of my eye. 
You are a good wife.  Support him and let him know you care.  My husband is a wonderful man, but he cannot handle me being in pain.  I remember being in labour with my forth son.  Gabriel came fast and hard.  As I was trying to breathe thru a contraction I really moaned very loudly and he asked me if I had to be so loud and if it really hurts that much.  His sister was my coach, being Italian she went nuts.  I have to laugh, even though at the moment it hurts. 
Take good care of him and I hope there is some relief for him.
Anne Marie
P.S.  My husband works in a hosptial in the womens ob/gyn ward.