ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Kaye on March 27, 2007, 08:35:37 am
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Don't kow where to go or what to do - posted question on other area on site, but really desperate. Spouse had AN surgery 2000 - - now he's really claiming he's getting worse especially "Fullness and Pressure", on top and right side of entire head. Has had it but now constantly complains - - Says if he cups his hands and pushes down on top of head relieves feelings a bit. (It's not a headache - says fullness/pressure) MRI in Dec. shows nothing - - Neurologist in NYC - tells him, "result of surgery - just live with it". If result of surgery why is it getting so much worse - - he now says, "you have no idea of how bad I am", (there are some other issues also - but this is the one he claims is more distressing - - says his speech is getting worse (and I agree - - if you know him he is starting to slur some words - - evern though eye exams are same - he also says eyes are bothering him). So what to do???? I'm asking for suggestions - - for the best, the very best Neurologist or whatever for helping with these issues. We live in South Jersey - - I'll take him anywhere to get him some relief! I thought things would stay status quo after surgery (I mean after major recovery year or so after operation), not deteriorate. This is just so difficult to deal with. Joe is just turned 67 - - I just turned 62. Need help and direction. Thanks
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Hi Kaye: Geez, about 7 years post op...it DOES sound like there is SOMETHING going on.
I had that terrible fullness post op, but it is lessening now & I'm just a little over 9 months post op.
Your're right, he needs to see a neurologist... I don't live northeast but others do & will help with
the name of a neurologist, HANG IN THERE !!!!, help will be on the way.
Best wishes to you & your husband, Nancy
ps. I just saw your other thread, I also ended up with facial paralysis, balance, eye issues, etc.
I wish his neurologist would LISTEN to his symptoms & not just rely on the lab, etc. results - both need to be taken into account....
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what type of surgery did he have -- retrosigmoid, trans-lab, or what?
is he doing any some of physical therapy? walking etc...
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Nancy and Joe: Thank you for the quick responses. I'm not sure kind of approach - I believe it was sub-occicipital -just below and behind right ear. 3cm AN removed at Staten Island University Hosptial ( used to live on SI), by Dr. Victor Ho. Same surgeon who two months prior did a cervical plating and fusion - - it's a very long story and no use rehashing mess! However, Joe is being seen by Neurologist in Beth Israel in NYC for follow-up. He has had yearly MRI's and they show no sign of turmor.
As I stated his residual effects from AN surgery, loss of hearing - right ear - balance issues (they removed vestibular nerve), facial numbness all around right side and the fullness/tingling in head, nasal drip and eye tearing when he eats, still some mild facial paralysis, very slight slurring of speech and, noticing some short term memory loss. - - He did go for extensive PT after surgery - - we even went to specialized balance hospitals. Apparently, Joe feels that over the last year or year and 1/2 he's getting much worse with the balance issue and the "Fullness/Pressure in his Head". He also suffers from severe arthritis - had spinal decompression lower back surgery last spring to hopefully alleviate some of the pressure on the nerves on his spine. He's facing bi-lateral knee replacement. As a matter of fact, we just got back from Ortho MD for Synvasc (spelling ??) Shots in his knees to hold off. (Thank God these shots make his a bit better and hold for 6 months at a time). So, as you can see, the poor guy has a really full plate. I told him about site while driving to and from MD and that some other people have some of the same issues post surgery. He says he can deal with almost anything but his head problem is driving him (& me) NUTS!. What or where do you suggest we start now. Anyone ever tried accupuncture? Just a thought, I'm getting desperate. Thanks Kaye
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Sorry to hear of your troubles
1) it maybe a good idea to obtain copies of the MRI scans
you can get them either hard copy or electronic
Maybe most the recent, and if possible from 2-3yrs back
The reason is : almost anyone you go to will
need these to offer an informed opinion
and in any case no harm in a second opinion
2)There is a chance - just a chance, that other meds
are making things harder - for example (with one balance nerve)
a simple glass of wine - is like taking 2 or 3
some other meds play havoc with balance
- a small cold now has REAL meaning for me
just go through the med cabinet and see if anything
started in the last 18mths maybe part of
the trouble
3)Neck tension can and does cause head/pressure sensations
Think about sitting a car with the seat wrong
how stressy and painful it can become
You mention other work on the spine
could this be causing side effects ?
A few ideas for you
Hope things improve soon
Best regards
Tony
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Hi Kaye - yep, I've got all those same AN issues post op, but I'm only about 9 months out, he's almost 7 years !!!! Still think you should see another neurologist for a 2nd opinion, but I don't know any up that way.
I'm going for acupuncture, but that's for the facial paralysis.....
I do, however, when the 'head stuffiness' gets really bad, take Aleve, & actually that does help some (sorry, didn't remember that when I wrote earlier, just chalk it up to the memory problems post AN !!).
Best wishes, Nancy
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Hearing loss ... its the least issue of the postie AN evils .. but then again, I do have a BAHA which helps
Facial paralysis .. I have that too .. my Dr. says to wait some more (for me) .. give it 3 years ... if your hubby is going on 7 years... have you discussed a 12/7 nerve graft with anyone?... I think everyone thats had it done has been happy with the results
drip and tears when eating ... I get that a little ... I always need a napkin nearby!
short term memory loss .. we all seem to have a little .. I think the bigger the AN was .. the more pronounced the loss. my therory is because the brain can become miss-shaped because of the AN .. when it returns to the correct shape.. the nerve pathways are different -- we need a different route when what we are used too!
balance ... ever work a 24 hour shift .. or party all night 8) .. and skip the nights sleep .. and the next night you all most have a "drunk" feeling ..a little off balance? .... because we depend on out joints and muscles and our ears for balance (after a long sleepless period we are tried!) .... even people who lose BOTH ears can still walk ... but its harder ... without the inner ears .. we use other sences ... eyes , muscles , and joints ... and gets harder in the dark etc.. and you said he is having arthritis and knee problems ? .. I would bet its the lose of good joints thats giving him balance problems ... *** note, I'm not a doctor ***
the "Fullness/Pressure in his Head". is a little worrysome ... I assume headaches are not a problem? does he ever take any sort of blood presure meds ? ever been tested for CSF pressure ? .. you said the MRI looked good? .. ever get a secound opinion??
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Hi Kaye:
Welcome!! The first thing I though of when I read this post was that maybe it was CSF buildup. That could explain so much. I did not know there was a test for CSF pressure (yeah Joef! thanks). That sounds like something well worth checking out. I am no expert but, from reading everything here and there for 3 years now, I have never read anything where pressure gets worse years post op unless there is regrowth. I hope you can find a doctor that will listen to you.
Good luck, Kathy
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Kaye,
Welcome to the site. You will find a lot of support and sympathetic ears here.
Did the head pressure start after the spinal decompression surgery last spring? Cerebral spinal fluid is a consideration with both AN surgery and spinal surgery. A time-line of events and symptoms might help to identify the source of the problem.
I agree with the other posters, sounds like he needs to find a doctor that will listen. It is hard to find the specialty that will take on "head pressure problems" when you have had a previous AN.
The AN surgeon's job was done when the recurrent AN was ruled out after the MRI.
Internists would probably refer you to the AN surgeon.
The back surgeon might have some answers, if the head pressure started after the surgery.
A headache neurologist or pain clinic anesthesiologist might be able to help with the pressure.
A general neurologist might have some answers, but might refer you back to the AN doctor.
ENT to rule out sinus problems?
I understand your frustration and encourage you to keep pushing for answers, no matter how many doctors it takes. It is easy to fall between the cracks when problems arise after an AN. I had the same problems, when trying to find treatment for post AN headaches.
I wonder if the other" increasing problems" would get better if the head pressure was resolved. There are threads on this site that describe increased AN symptoms when atmospheric pressure increases.
Take care and tell your husband I wish him well.
Janet
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In response to Janet....WHY do ANers fall between the cracks post surgery? Maybe if we had "the team" (Neurosurgeon & Neurotologist) look into this site from time to time, their answers would begin to change? The "canned" response from them is becoming old and unbelievable. Wonder what Bob Woodruff would say.
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It might be a bit embarrasing for certain surgeons ?
In the old list there was a secretary from one of the gamma knife centres
- the input was useful and helpful
Maybe we could have a doc`s corner ?
maybe the admins could look at that ?
best regards
tony
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::) ;D :) You are all so wonderful; just to even take the time to read my post. I'm going to get Mr. Wonderful (Joe), to sit himself down and talk with all you guys. I take all your suggestions, confirmations of similiar symptoms to heart and will start to search out a new Neurologist and other suggestions. Please do keep them coming. Thanks again, Kaye
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I LOVE your style Kaye!!! You've got me giggling in my seat...'Mr. Wonderful'....love it, Nancy
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Hi, Kaye:
My sympathy to Joe and to you regarding all of the problems Joe is experiencing. I'm 9 months post-op (retrosigmoid approach) and 5 months post-radiation (see my signature). While I had a very good outcome with few complications , I also have that 'tightening' feeling in the head where the AN was/is. My solution: I take ibuprofen - a non-steroid anti-inflammatory medication sold under various brand names, such as Advil) - and that generally handles it. 2 tablets, twice per day. 800 milligrams. My doctor says that it's just the bone healing and that if the ibuprofen can minimize the discomfort, it isn't serious. I chose to believe him.
I would suggest that your suffering husband try the ibuprofen and see if it helps. It can't do him any harm and even if it helps a little, I'm sure he'd be grateful.
I wish you both the best.
Jim
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Just a quick thank you to each and every one of you for your encouragement. I'm sharing each note with Joe. He'd better try some of your suggestions or else! Only kidding I really and truly just with he'd get some relief. Have a wonderful day. Kaye and Joe from South Jersey
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Hi, Kaye- I'm sorry to hear that you and your husband are going through such a hard time. I'm only 6 weeks (today!) post retro sigmoid so certainly have no long term experience to offer. Right now I feel so much better than 6 weeks ago that I can only imagine how upsetting it must be to have recurrence/increased severity of symptoms.
I did notice that you were talking about other options for surgeons in the Northeast. May I make one? I live in Rochester, New York--not too awfully far from you and your hubby. The University of Rochester has world class neurosurgeons. Dr. Kevin Walter did my surgery. He's new in our area but comes with credentials from Pittsburgh and Johns Hopkins and concentrates on brain tumors in particular. If your insurance will permit your requesting a second opinion out-of-area and you and your husband are up to the trip (Don't worry- it's snowing a little bit today but the worst is over in Rochester!), you may want to touch base with the University of Rochester Neurosurgical Department.
Good luck to you and your hubby (P.S.-He's lucky to have your love and support!)
Linda
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Kaye,
I grew up in Laurel Springs NJ and live just outside Philly, in Drexel Hill, PA, I am only two months post op but highly recommend my neurosurgeon at UPenn, Dr. Judy. He is fantastic. I also hear that Jefferson's headache center is good but it's not really that.
Best wishes to your Husband, that doesn't sound right 7 years down the road.
Steve
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Nancy: Have you gone and tried the Accupuncture as of yet? Anyone else try? If so, outcomes....Thanks. ;D Having a bad storm here in NJ today, rain and winds; but better than rest of Northeast, so far. Thanks to all and have a wonderful day. Kaye and Joe
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Well hi there Kaye, good to hear from you again. How's Joe doing ?
I have continued with Acupuncture, I go once a week & after, the acupuncturist uses a 'Luminex Laser', runs it along the facial nerve route.
I had started acupuncture 10/06, then in Jan.07 had a repeat EMG which showed 10-15% nerve regeneration - not enough for movement though. Would I have had the 10-15% nerve regeneration without the acupunture, who knows?
So my next EMG is May 29th, hoping for continued improvement, even though I still have no right sided facial movement.
If there's no improvement, then I'll have the 12/7 jump surgery.
I still have the 'full head feeling', acupuncture doesn't help that. I've learned to live with it along with the other nuisance symptoms of post surgery, just put it out of my head (like the AN!).
Anyway, you have a great day too my friend, say 'hi' to Joe,
All the best, Nancy
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Hi Nancy: I was hoping the accupuncture would help the so called, "Bobble Head" - the fullness, etc. Sounds like you really have severe facial nerve issues. . I can only say you have such a positive attitude - - I will pray that you get your right side facial movement back soon. I'm really thinking and thinking about Joe's right sided paralysis afterr the surgery. If I recall correctly it tookabout a year - it was very, very slow. I do reacall him doing facial exercises, in front of a mirror, a few times a day - - just trying to move mouth, eyes, brows, any kind of fact he could make. Anyway, I would honestly tell you that he is, from my observations about 90% back, so there is always hope. ;D I just don't know where the time goes. Again, keep up your wonderful positive attitude and your helpfulness (is that a word ???) with your postings and e-mails. Kaye (& Joe)
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Hi Kaye: No, it doesn't help the fullness, the feeling like I've got packing stuffed on the AN side. Is Joe's head fullness only on the side with the (now gone) AN as mine is ?
Thanks for the words of encouragement re: the facial paralysis. I'm a 6 on the Brackman scale, about 10 months out, oh well.... I also try to 'think' my face to move, it's funny, last night I had a dream I could whistle, I've also dreamt my smile comes back !! It took me awhile to realize our bodies are just a covering for what's important, our spirits; however it IS nicer when the body cooperates, doesn't go haywire with one problem or another !!
Well, always good to talk to you Kaye, good thoughts always, Nancy