Jan 10,2006 op

[badkins]

I am 3 months now recovering. I have had several set backs. Every day I feel horrible and off balance. I have been in therapy since Jan. I have severe migrain headaches. I saw a pain managment doctor and they have put me on a drug called Lamictal. This is a antiseizure medication. I have no history of seizures. I am now on a patch called phentinal. Just wondering  if anyone out there has recieved this medication after   AN op. They also showed  on my last MRI a bloodclot in my sinus cavity. They also left a 7x5mm piece of tumor on my facial nerve. I  need all the info I can get
Beth

[ppearl214]

Beth,

Hello and welcome!

I'm so so sorry you have run into this. What kind of surgery method/procedure (ie: middle fossa, translab, etc) did you have? What symptoms are you currently experiencing?  I am aware of Keppra for seizures but not Lamictal, so hoping someone here can help with an answer for you.  Since they couldn't peel away the whole growth (we know this AN's are terribly "sticky"), did your surgeon tell you about how the monitor situation would be?

I'm sending hugs and hoping that each day will become a little easier for you, physically and emotionally. Please know that our emails are always open to you and we're all in this together.

Thinking of you,
Phyllis

[Battyp]

Hi Beth,
  I'm 8 mos post op and I can remember at 3 mos being so frustrated with life.  I found this site and it has been a big help to get me through some of the tough spots.

If they left some of the tumor behind it was to preserve your facial nerve.  That is the major objective for most surgeons when it comes to removing this tumor.  A lot of times the tumors are "sticky" like phyl mentioned and in order to remove it they would severe your facial nerve which can be devastating. 
I am still doing rehab, physical therapy vestibular therapy which is still frustrating but I can honestly say that until about a month ago I did not have a lot of improvement.  Once I started going every day instead of 2 or 3 days a week I noticed improvement.  I was on antiseizure meds from the get go.  I never reached therapuetic levels so they stopped them around my 3rd month.  Not sure why they think that will help migraines but then again my son was put on asthma meds for migraines and it did help.  Did they say what could be done about the blood clot?
What type of surgrey did you have?  Are you doing vestibular therapy of just physical therapy?  It does get better it's just a real slow process...One no one wants to wait on including me.  I want that you will get better..not the wait and see approach that follows this type of surgery.  I take zomig for my migraines (i've only had to take one since surgery) I know others on here take some other things. 

Please know we care about how you are doing and will answer any questions, listen to you vent..what ever we can do to help you through this!

[badkins]

Thank you for your support. I had a translab approach. The tumor had grown at a rapid pace from 18mm to an extra 1 1/4" into my cerabellun and almost into my brain stem. The docs were very surprised when they opened me up. My surgery was 13 hours long. A three week hospital stay to go with. I have vestibular therapy 3x a week with a little physical therapy. I slept with a cold pack on my head all night long to keep the headaches away. As far as the left over tumwwor it has not grown anymore since surgery. The blood clot in my sinus cavity has not really been addressed until I see a neurologist on MAy 21.

I still need more answers. Please if anyone else has any information on the medication I am  on.
Thankyou for your suppport
Beth

[Kathleen_Mc]

Beth: Antizisure medications are used for many things other than seizures and have been for a long time. What are your questions in this area? They have long been used to help with headaches and mood disorders, what is the reason they are ordered for you? They do have side effects and each one is different. Kathleen

[Battyp]

Afte AN surgery there is concern for seizures.  They suspected I had one and later confirmed I didn't but kept me on the medication anyway for a short period of time.  I want to say it was about 3 or 4 mos after.  I do know they did say that it slowed down my recovery and after I had been off it for a while I did see noticeable improvement.  Not sure if it was med related or not. 

Are you wanting to learn more about the drug?  You can google it or check on any pharmacy web page llike walgreens, cvs, eckerds, etc...I had brain stem involvement too and I had an mri done 4 mos out to make sure everything was moved back into place and at that point they started weaning me off all meds. 

I was on dilatin for seizure meds...phyl what does papa pearl say about Badins med? 

[Captain Deb]

Badkins-
My post-op migraines started 10 days post-op and were two to three times weekly  till about 2 1/2 years post-op. Now they are down to maybe one a month and the severity has diminished considerably. I was on several anti-seizure meds including Topamax and Inderal.   Neither seemd to do a thing for me.  At about 2 years I started using Zomig nasal spray, which makes them entirely managable if I take it in time.  I was going to the ER on a regular basis till then.  I really think they just went away on their own.  My neurologists theory is that I had hereditary migraines to start with and they were kicked into overdrive by the trauma of the surgery.  Nerves take Years to heal, and as my healing progressed, my migraines just sort of started to fade away on their own.
I tried to keep a headache journal as best I could and tracked all the triggers I could think of. This is essential, too, if you end up filing for disability. 

Be careful of OTC pain relievers as well as they can lead to rebound headaches and tummy problems--I ended up with both.

Good Luck and keep posting when you can.  We're here for ya!

Capt Deb

[badkins]

HI ALL,

Did i fail to tell you I am also  on a fentinal patch 25mg. I still have break through headaches everyday. They still have me on Valium5mg 3x day. phinigan, percacet 5/325 and still cannot function without the dizziness  and headaches. I AM  OVER IT. At first I thought I was overmedicated. But still can funtion verbally  without drooling
Thanks for   the comments
Beth

[Battyp]

It sounds to me like they are over doing it a bit on the valium,and  percocet...I'm not sure what the fentinal patch is for.  I'm so glad to be off all the meds I was on.  It was about the 4 mos mark that happened.  I luckily didn't have headaches and only took ibuprofen for any pain.  Hey Beth, now I do drool when talking too much  LOL  So hmm...trade off? 

[Windsong]

Hi,

I hope you are doing better.....

I read your posts and am wondering if you have some trigeminal nerve involvement with your An? I saw from your posts that your An seemed to have grown fast and was wondering about the 7x 5 mm growth left ... that's about a third of your An from the about 2 cm.....is this a quote from your docs? after the op?

I was thinking that if you had no symptoms of balance probs before your op that maybe a lot of your feeling the way do you do now is from the op itself in that your balance nerve is dealing with a sudden change after the op etc...... that can get better with time as i understand this whole An thing. ( a lot of people who had balance probs with ans over time even when they didn't know about their ans, had  months/yrs to adapt in some way) doesn't make what you are experiencing any less but i wanted to give you some hope and postive  thoughts. Give it a bit more time...

As for the headache i don't know the answer for that.I am having some myself. However, I do know that valium is often prescribed for ear/balance probs and does help, quite often it helps a lot. A bit of a mystery to me why that is so but it seems to work. As for the percocet, i heard yrs ago that it helps with headaches that may be beyond the norm, not sure tho if one can take them for a long time....

As for the fentanyl, that, to my knowledge is also a pain helper and has helped with nerve pain. I think and pls don't quote me on any of this, that it is an attempt to deal with heavy duty pain that is chronic......and often in cases where nothing else works. A lot of research is being done on nerve pain control.

In any case, I do hope you get relief soon and feel much better.

I am most curious about your blood clot in the sinus area and am wondering what your surgeons have said about that and what they think is the treatment for that? How did they find that clot? an mri? a scan?....

Hope you feel a lot better soon!
Hang in there and be tough.

Windsong

[Janet]

Beth,

I have spent the last 2 years since my AN surgery trying to solve the problem of daily headaches. I am always sorry to hear of anyone experiencing these headaches because I know how miserable it can be. It is hard to put this clearly into words, so if you need me to clarify just ask.

This is how my headaches were. I would have some type of headache off and on all day long. Movement seemed to be the trigger.
Dull ache behind one eye from mild to severe
Neck tension and burning pain radiating to the back of head on one side
Severe stabbing sharp pain on one side of back of head

These are the medications I have tried.
Tylenol      (Pain)
Aleve        (Anti-inflammatory)
Maxalt       (Acute Migraine)
Indocin     (Anti-inflammatory)
Neurontin  (Anti-Seizure) 
Trileptal     (Anti-Seizure)
Botox       (Relaxes muscles)

This is what works for me.
Botox injected in the back of the head, side of head and forehead. (I am in a headache study)
Indocin 25mg twice a day

Since the Botox, I stopped taking the Trileptal and haven't needed the Maxalt. I didn't realize how tired and foggy the Trileptal was making me feel.

This is how my headaches are now. I usually get mild to moderate sharp pains in the back of my head for about 1/2 hour when I get up in the morning. (I take an Indocin and as soon as it kicks in the pain is gone.) The pain comes back in about 8-12 hours (around bedtime) and I take another Indocin and it is gone.

This is a huge improvement! 

[badkins]

thank you  for all the insight. Windsong, you have nailed the headaches right on the money. But I deal with these headaches everyday almost all day. I cry alot because I am frustrated. Over the weekend I was reallly bad off.  This morning seems to be a bit better I can tell already.
As far as the blood clot it was found on my last MRI on 4/17.  I then was sent for a MRA whidh just scans the blood vessels in your brain. My surgeon said that this is for a neurologist to take care of.
I have a  question also. I love to get a massage weekly.  Now that they found this blood clot in my sinus cavity, my therapist won't touch me for fear of moving the blood clot. What are your thoughts on this?
Beth

[Janet]

Do you have pain on one side or both? What type of pain do you have? Dull, sharp, both? It seems like some people get trigeminal nerve pain and others get occipital nerve pain and others get generlized headaches. The challange is to get the pain under control with the least amount of side effects.

It sounds like your medications are not helping and probably are making you tired as well.  I know you are seeing a pain specialist but maybe you need to see a headache specialist?
Fentanyl is a strong narcotic
Percocet is a strong narcotic
Valium is used as a muscle relaxer to treat headaches
the antiseizure medication is used to "quiet" the headache causing nerves
All of these medications make you tired  If they take away the headaches,  maybe it is worth it, but it doesn't seem like they are helping.

Beth, I know there is an solution out there. I have recieved many e-mails from AN headache sufferers that have found some acceptable form of treatment for their specific type of headaches.  What we all have in common is a trial and error path to getting our lives back. It has taken me 2 years to find a solution that takes away the headaches and leaves me with energy to function normally. It is hard to be aggressive in finding a treatment when you feel like crap.

[Battyp]

Beth I'm not a doctor nor a massage therapist just someone who's had extensive massage therapy.  I'd say NO on the massage as it can break the toxins up and infect your blood stream.  I had a friend who had this happen to him.  He was extrememly sick.  I personally wouldn't take the chance.  Is it one area that is bothering you?  like your back or shoulders?  Have you tried a tens unit?  I used to use one for migraine headache relief, back ache and ankle problems.  It did help give me relief from the headaches (mirgraine ones).