Curious about time of recovery

[worrywart]

My bf was diagnosed with a scwhanonna on his 7th nerve. I haven't found any info on that, but it seems to be very similar to the acoustic neuroma. It has been a month and a half and we are still waiting to talk to a nuerosurgeon, so don't know size. About 10 years ago he was told he had bells palsy but they never did an mri or cat scan. 10 years later he still has issues, one side of his face is paralyzed, balance problems, hearing problems, face and eye twitching. About a month and a half ago he had a severe bout - he said he felt hungover, thowing up, not being able to focus eye, and staggering as well as not making sense when he was talking to me. Most of it has cleared up since and he is back to usual, but obiously that is still not good. I don't know if they will want to do surgery, but from what I have read it is a good guess. How much time he will miss from work is probably going to be his big consideration when deciding what to do and I wondered if there was a general timeline to expect?

[Silver Sonnet]

You've waited a month and a half and haven't been able to talk to a neurosurgeon yet?  Maybe you need to try to reach someone else.  I've never had to wait more than a few minutes for any neurosurgeon to call me back--granted, I have NF2, but that really should not matter.  It's just awful that your bf has been so sick for so long and can't get help.  Maybe someone here will know a better way to rectify the problem, but until then, remember:  the squeaky wheel gets the grease.

Unfortunately, there are so many factors affecting recovery time that it's almost impossible to make a prediction of recovery time.  Each person heals differently; each type of procedure has a different timeline; general health before the surgery, etc.  I just has an AN removed by ret-sig two weeks ago, and while I still tire easily and am not yet allowed to bend or lift, I consider myself mostly recovered.  And the type of work your bf does will also factor into determining when he can return to work.  I'm an English instructor, so it won't be a problem for me to go back to work.   If he's a construction worker or a landscaper or something that requires physical labor, he might have a longer wait.

I hope you are able to find someone to talk to you soon.  It can't be easy not knowing like this.

[CHD63]

Hi worrywart and welcome to this forum .....

Many questions for you here .....  Who ordered the MRI?  Why hasn't that physician contacted your friend? Etc. Etc.

By law, a CD of the MRI and the report belongs to the patient.  Your friend should be able to go to the imaging center and ask for a copy of the MRI and a copy of the report.  There are a number of places around the country who will do free consultations/evaluations if you send them a copy of your MRI.  I would strongly urge your friend to do that if he is getting no response from any physician or neurosurgeon.

Depending upon the size and location of his AN, plus his symptoms, he should have options for treatment.  If still small enough, radiation might be an option.  If you need names of places doing consultations, just ask and someone will post them (or PM me).

Best thoughts.

Clarice

[worrywart]

Well, he went to the ER, after having trouble for about a week. They said he needed an MRI but wouldn't do it. So a week to see his dr, get a prescription for an MRI. Took a week to get the MRI, 4 or 5 days to get the results, then schedule one with contrast a week later. Another week for the Dr to give him the results, then another for the nuerosurgeon to get back to the Dr, confirm that is who he needs to talk to, and then they are booking 3 weeks out for consultation. He is going soon but no one has been very helpful, he has no information other than the name of his issue and what I have found here, and they say he can't get in sooner. He hasn't know the issue for that long, but he's had it for a while now.

[Jim Scott]

Hi, worrywart ~

Welcome - and thanks for posting.  I'm sorry to learn of your boyfriend's schwannoma and the runaround he has had to endure while seeking medical help.  This has to be very frustrating to both of you.  Fortunately, he received the MRI scan and has a doctor consultation booked.  I would suggest that he try to be more pro-active as he seeks medical opinions.  Don't allow medical office workers to brush him off.  Time may not be on his side, depending on what is happening with the schwannoma (growing?).  If he doesn't feel comfortable with the doctor he's scheduled to consult, please advise him to look for another, and a 'second opinion'.  Blithely following the advice of the first doctor he consults with may not be to his advantage, which is why he wants more than one medical opinion as to what his best option may be.  It's too bad he had to fight to get an MRI, a reading of the scan results and an appointment with a neurosurgeon.  It shouldn't be this difficult and time-consuming.   I can only hope that the doctor your boyfriend consults with is knowledgeable and compassionate.  Please keep us updated.  We care and want to help, if we can.     

Jim

[New girl]

Hi Worrywart,

Sorry to hear about you and your boyfriends struggles.  After my ENT doctor gave me my results my first appt with a neurosurgeon was not until over a month later.  I found this very upsetting since I felt like I really need to get more info.  I told them how upset I was and that I would not be able to wait that long.  They called me back and I had an appt within a week.  I would look for other doctors if you are not getting what you need.  This site is great for getting info on other people's experiences with specific doctors and their experiences in general.  Hang in there.  Take care.

-d

[worrywart]

Thanks everyone and thank you silver sonnet for giving me an idea of time. He is very wishy washy about Drs and isn't going to ask for a second opinion. The other issue is he recently switched jobs and has no more health insurance. He still has mini COBRA from his old job but that only has about 5 or 6 months to go. His job is not very physical, it's mostly mental. All he needs is a clear head and to be able to talk. I think it's worse for me than him. His dr didn't tell him anything so he didn't know anything. Basically she told him it's not a brain tumor and you aren't going to die from it. I'm the one that worries and googles it and gets more worried!

[Silver Sonnet]

You're welcome

I don't know anything about your medical system up there; long waits sound pretty standard.  But, as Jim said I think it was Jim), you can get free consultations pretty easily.  At my hospital, patients can get as many cds of the MRI as they want as long as they only get one at a time.  See if he can get a copy, and at the same time, ask if he can get more later and if there's a fee.

If they only let him have one copy (or even if they let hiim have lots), you might want to copy the MRI on a disk or on your computer.  Then, you can see it, and you can copy it to send to other places if you need to.

I've dealt with House Ear Institute, so I can tell you ow that works.  I just literally picked up the phone and called them cold.  Told them I'd just been diagnosed and my ENT had suggested I contact them.  After being transferred to a "nurses' station" and leaving some information, I thought I'd have a  long wait, but within five minutes (honestly) Dr. Brachmann himself called me back.  He talked to me for at least 20 minutes, asking when I'd been told by doctors so far and explaining general information about my situation.  Then he gave me his address and a more direct phone number and asked me to send him a copy of my audiology report and MRI.  I did, and in less than a week, he called again to talk specifics about my case.  He talked about problems he saw how the ANs (I have--had--two) were likely to impact my life, etc.  I'm sure he'll want to talk about all the problems your bf is having.  We talked about surgical approaches (he doesn't like radiation for NF2 tumors) and finally ended our call. 

I'm sure you'd get similar treatment; it seems to be the norm when dealing with this, and I have no doubt other places would treat you the same way.  Dr. Asthagiri did the same when I joined his study at NIH, but I don't know if he deals with non-NF2 people.

In any case, be aware that someone is going to have to fight for your bf's health if your medical care is anything like ours.  Since it doesn't sound like it will be him, we'll pray for you

[worrywart]

Maybe this is a dumb question, but how do they know if it's NF2? We are actually within 3 hours of MD and that might be an option, especially since his insurance isn't going to last forever.

[Jim Scott]

Maybe this is a dumb question, but how do they know if it's NF2? We are actually within 3 hours of MD and that might be an option, especially since his insurance isn't going to last forever.

The NF2 diagnosis is generally based on a doctors reading of MRI scans (that indicate multiple tumors), along with any clinical analysis that may be established based on family history (and the patients symptoms.) 

Jim

[Cheryl R]

You would know it was NF2 if a person has ANs on both sides. Also if has an AN and various other type of brain tumors at the same time.  There can be skin neuromas plus other possible problems.      Only 5% people with ANs have NF 2.     They can be hereditary so other family members have it or a genetic mutation.   You can find good info on www.nf.org         There are a few of us with NF2 on here and we hang around as we will have to be watched for life.  Most people with ANs do well and are off the forum in time.     Seeing those who stay on with some long term issues makes one think that all those who have AN treatment have bad problems and many do not.   They may live with the hearing being gone on one side but there is ways to help that also.      One can even have a fairly normal life with NF2.    You make adjustments and do fine.     There is everything from mild NF2 to severe form of it.        I am lucky to be considered mild even with having had 3 tumors and now hope that is it.        I hope this helps.    Cheryl R

[worrywart]

OK, thanks! I'm pretty sure it is on one side only. I know there is a strong family history of brain issues, but he doesn't really know what the issues were. So now we just wait for the appointment I guess.