Side Effects From Surgery

[letranger]

I am scheduled to have surgery (middle fossa) to remove my acoustic neuroma in July.  I am an attorney and, although I think I have a great surgeon, I'm concerned about how the operation my affect my ability to work.  In particular, I'm very worried about cognitive difficulties that my result from the surgery and about the headaches that others who've had the operation speak about so frequently.  Does anyone have any opinions or advice?  For example, would cognitive difficulties and headaches be less likely using the translabyrinthine approach instead of the middle fossa?  How soon can I expect to be back to work at 100 percent capacity?  Thanks very much for any help you can provide. 

[Mark]

Letranger,

you don't mention the size of your AN , but can I inquire as to why your not also considering radiosurgery which typically has less post treatment deficits than surgery?

Mark

[letranger]

Mark,

Thanks for your response.  As to the size of my AN: from what I'm told, it's still fairly small: 0.6 x 0.9 x 0.5 cm. 

As for why I'm not considering radiosurgery: I discussed the option with my neurotologist.  He explained the procedure to me but ultimately recommended against it.  He said that I'm relatively young (late 30s) and that going the radiosurgery route would mean multiple treatments and continuous monitoring over a period of many years.  He also mentioned the possibility (admittedly remote) that radiosurgery might make the tumor malignant.  I realize that each approach has its supporters and that there is conflicting evidence.  My doctor has an excellent reputation, however, and in the end, his advice seems reasonable to me. 

[macintosh]

Dear Stranger--

I would suggest that you go to the site pubmed.gov, and use <acoustic neuroma microsurgery> and <acoustic neuroma radiosurgery> as search terms. Another very useful site is www.acousticneuroma.neurosurgery.pitt.edu.

Best,

Mac

[jerseygirl]

Letranger,

Middle fossa is associated with the greater risk of cognitive difficulties than translab because in MF approach the surgeon has to retract temporal lobe - it plays a role in mood, memory and language. In translab, the surgeon has to retract cerebellum which plays a far lesser role in cognitive functioning, therefore, translab is not associated with cognitive difficulties when the tumor is small and does not press on the brain yet (which is your situation).

In terms of headaches, middle fossa has an increased risk of headaches because of the muscle being cut (lateral pterygoid, as one surgeon explained to me). These headaches, if they occur, are intractable and hard to treat. Translab is not associated with these kinds of headaches because there are no major muscles to cut.

Middle fossa also has far worse facial nerve preservation rate than translab becasue they go from the top and the facial nerve is sometimes not identified. in translab, the facial nerve is identified and protected although the preservation rate decreases when the tumor size increases ( yours is small, remember).

Middle fossa has the highest rate of hearing preservation and may be that is why it is recommended for you. Translab is guaranteed deafness in the affected ear because they take the inner ear out. I do not know what is the chance of the hearing preservation with MF approach but I guess it really depends on the surgeon. Single sided deafness is not great but is not awful to live with either as many of us can attest. In addition, in the past few years, there are choices in the hearing aids for unilateral deafness - BAHA, Transear, Starkey and I also heard somebody using Siemens. Technology is forever improving, I can't wait to see what is going to be out there in 10 years. I have to add, though, that at this point, nothing is better that your own fully functioning two ears even if it is a lot of help.

The bottom line is, the choice of the approach depends on your goals and which risks you are willing to take. Some people sail through middle fossa with their hearing preserved, some people have their lives ruined by  headaches and cognitive difficulties as the result of the surgery and lost their hearing as well. There is just no way to tell upfront where you are going to be. Take care and best wishes,

                      Eve

[Cheryl R]

Not everyone gets headaches post op.        I had mid fossa in 2001 with very litltle pain what so ever.             I then had translab for a facial neuroma in 2006 and a CSF leak surgery 2 weeks later (I am NF2 so have a more aggressive tumor history) and no headaches as such.    I did have some post op discomfort which Vicodin took care of.                 I have never heard of what percentaqge of patients end up post op with headache problems. 
I can't say I had a cognitive problem too much post op.        I do get a bit forgetful over some small things here and there but feel age is part of it.                I was back to work as a nurse in 2 mos but I only work part time.              Feeling tired can be a biggie post op.
   One wants to make sure that your surgeon does what ever surgical approach that is being done on a frequent basis.          Some do not do mid fossa too often.
             Good luck in your treatment choice.                          Cheryl R

[Mark]

letranger,

Your AN is very small which really increases the probability of having an excellent outcome either way. That being said, I would echo Macintosh's suggestion to review several other sources on both options. While I'm sure the neurotologist you saw is an excellent doctor, he is by definition a surgeon and that is how HE/SHE would treat you. You are correct that there are various opinions and biases on both treatment options, which includes the doctor you saw.

As far as your age being "too young" , I was 44 when I was treated and there are others here who were younger. In terms of monitoring post treatment, I think you'll find that there is follow up protocols on both options. While radiosurgery is a little more frequent in the first few years, 3-4 years out the gaps between monitoring tend to narrow. As some folks who have surgery unfortunately find out, there can be regrowth when the surgeon doesn't "get it all", so monitoring is important either way. The malignant transformation discussion can be found in the archives of this forum, but I guess I would ask the doctor to show you the studies he based his comments on. While probably equally a remote possibility, the flip side to that point is that major invasive surgery does create the risk of mortality either directly or indirectly associated with the hospital stay as was tragically seen in the case of the reporter last week who developed a Deep vein thrombosis.

So, I think the point is that neither option has a guaranteed outcome or 0 risk of complications and at the end of the day you have to decide which one makes the most sense to you. You'll find that everyone who frequents this forum community will be supportive of whatever choice you make. I also think most would tell you to not rely on one doctors opinion on an issue of this significance. It is important to go to experts in each area and make sure you're getting all the information you need. In addition to Macintosh's suggested links, I would offer the Doctors message board on the CK web site where you could ask about the radiosurgery issues raised by the doc you saw.

http://www.cyberknifesupport.org/forum/

Best of luck

Mark

[matti]

I had Middle fossa for a 3.5 cm in 1998 and have never experienced headaches, but I know some have.  I do however experience minor cognitive issues, althougth to this day, my surgeons and doctors tell me it is not related to the surgery     

I just spoke to a post op patient (2  1/2 months) who had middle fossa, preserved the hearing, no facial paralysis, no headaches, but some minor balance issues. He is feeling well enough to head back to work next week. I believe his tumor was 2 cm.

Take care and please know we are all here for you!

Cheryl

[tuckerro]

letranger,

I am a 35 year old attorney in Albuquerque, New Mexico.  I  had surgery last September with Dr. Brackmann at HEI in Los Angeles. 

Where are you considering getting your surgery done? What surgeon?

I had similar concerns.  I had middle fossa, have saved my hearing, haven't had any issues, no headaches, no facial nerve issues, nothing except some post surgery recovery issues.  Cognitive issues have been nil.  I didn't and don't have any noticeable issue, and am back to producing at or beyond pre-surgery production.

Once I travelled back home from surgery, I was out for a few weeks.  I went part time for awhile, was feeling and doing fine, and then tried to go back full time too early.  The day to day stresses of our job, which didn't seem so bad pre-surgery, were a little much to handle full time at first, staring at the computer, drafting, thinking, just being busy, just threw me out of commission for longer than if I had just stayed out a little longer.  I would plan on being out at least a month from any semblance of a reasonable production of billable hours.  It all depends on how you recover.  At first, you just sleep, and despite thinking that our job is one that you can just jump back into, it takes a little while to get up to speed and be able to work full time.

Happy to discuss further, I have posted on recovery issues in this forum before if you want to search it out.

RON T.

[Larry]

Everyone is different.

A lot of posters who had middle fossa have generally experienced headaches. This method is meant to be less invasive than trans lab and is meant to preserve hearing. Not that it did with mine.

there also seems a greater risk of re-growth with middle fossa.

Your growth is very small - knowing what I know now, unless you have some effect such as hearing loss, vertigo etc then watch and wait. It may not grow for years. I'd also explore radiation treatment. many surgeons do not like patients exploring this option because they don't get a fee out of it. there are many successful radiation treated patients here.

All surgery has risk. whats that old saying - if it aint broke, don't fix it!



laz

[Sue]

Well, I guess I'll have an opinion, too.. I'm curious why your surgeon would recommend anything since your AN seems quite small to me.  I'm very surprised you wouldn't be put on a "watch and wait" routine - unless, of course, it is growing too close to your brain stem or causing your doctor some serious concern. 

I am a radiation patient so I do think it's a wonderful alternative to tradional surgery, if it's an option available to you. Doctors should tell you all the benefits and risks associated with each procedure and the risk of cancer from radiation is one of them....but, honestly....you have a much greater risk of being killed in a vehicle accident on your way to your treatment than ever developing cancer.  I am being monitored and my last MRI showed that my AN has necrosis and is dying.  That's what we all want....tumor death one way or another..radiation or removal. 

Whatever you decide, it's your decision of course.  Just be as informed as possible. You're a lawyer...you should be able to present your case to your doctor if you decide to change your mind!! 

Good luck to you and best wishes for your eventual treatment and recovery.

Sue in Vancouver USA

[letranger]

Thanks for all of the very helpful replies.  I just wanted to follow up on the suggestion in a number of the posts that I  consider radiosurgery.  As I mentioned earlier, I discussed the various options with my doctor and feel that he informed me of the risks and benefits associated with each.  I've also looked at some of the scientific literature on the subject.  And after joining this forum, I've read the personal stories that folks have posted here.  I did not come away feeling that radiosurgery would be a better option for me.  This is mostly because the main side effect that I'm concerned about -- headaches -- seems common enough with both microsurgery and radiosurgery.  I imagine that there are studies showing that headaches are less likely with radiourgery.  (Actually, if anyone has any specific references, I'd be grateful to see them -- there's so much info out there).  But there seemed to be enough of a risk of headaches with radiosurgery that I wasn't confident I'd be much better off taking that approach. 

Just two other points on which I wanted to offer some clarification: first, the reason my neurotologist is not recommending the wait-and-watch approach at this point is because my tumor has grown since it was first identified.  However, I realize that the tumor is still small and I don't think I'm having any symptoms at this point (maybe a little ringing in the ears, but this could be due to other causes).   Second, the neurotologist treating me works as part of a small ear institute that also performs radiosurgery.  As a result, I don't think he has much of an economic incentive to steer me in the direction of surgery over radiosurgery.   He could simply refer me to another of the clinic's doctors for radiosurgery.  I'd end up paying the institute either way, and my doctor would receive some remuneration in any event.  I realize that training bias is a separate issue.  On the other hand, I know that my doctor has referred others who are older for radiosurgery.

Having said all of this, I'm still open to considering radiosurgery.  I'm still looking for information. The websites and forums that have been suggested have been very helpful.  But if anyone can recommend a specific article or perhaps a doctor, I'd really appreciate it.

Thanks very much again.