head pain

[mrmel]

Hello friends
 Wanted to reach out and hear from some people that are post surgery for many years. I have been post since 1997. Over the last couple months I am having pain in the back of my head same side as my surgery. I know my neck hurts, but there is pain that just seems like it is just coming from my brain stem, it is a very tender pain and very unsettling. My last mri was 3 years ago and there was no regrowth at that point which was 13 year post surgery. I have no health insurance right now, so I cannot really get an mri. Just looking for some reassurance and support. No other striking symptoms other than my eye seems a little dryer than it has been same side, and once in a while a little tingling on side of my tongue same side as surgery. I would appreciate any comments. I have never really had headaches post surgery accept initially.
                             thanks
                               Mel

[mrmel]

I just want to say that ia m so touched by the out pouring of replies regarding my post about my head pain 16 years post op, I am deeply touched by the amount of people that have responded to my ask for help.
                                     thank you
                                      Mel

[Jim Scott]

Mel ~

I'm sorry your post did not receive replies but you're asking folks who are not doctors for opinions regarding issues that we cannot realistically address.  Obviously, you're concerned that you are experiencing re-growth and would like assurances that isn't the case because you don't have insurance to pay for another MRI.  Frankly, even a physician cannot offer those kinds of assurances without an MRI.  We do want to offer you our support but any reassurances our members may give you would be sheer speculation without any basis in fact and essentially useless.  The best advice anyone can offer you is to see a doctor...but without medical insurance, you apparently cannot afford to do that.  That's understandable but what else is left for anyone to say? 

I hope these issues resolve on their own and, again, regret that you feel disappointed in the lack of response to your query but I trust that you'll understand why.  We can offer you our prayers and good thoughts but there is no credible answer our membership - non-physicians - can give to the questions/issues you are experiencing.  I wish we could. 

Jim

[elsie]

Mel,

I have just turned to this forum, because I too have been concerned about re-growth (after 25 years).  As I am deaf on the AN side due to the tumor (it was surgically removed in 1988), my primary tip off that something was wrong  is no longer available, which really makes it hard to assess what is going on.  Am I obsessing about something that is due to enormous stress or is the tumor really rearing its head again?  (My AN side facial and tongue numbness have returned).  I posted a similar question and got one response - which basically was "what are you waiting for?"  That was enough to send me back to Dr. Wiet.  He was verbally reassuring - stress can do strange things to the body and it is extremely unlikely to get regrowth so far out, BUT, in the next breath, he said - you do know that you will need an MRI, don't you?  I am scheduled for this Tuesday.

I do agree with Jim - this forum is not composed of doctors.  The members really can't address this type of concern.  I do hope you make an appointment with a doctor, though.  There are many reasons for head pain - your doctor may be able to put your mind at ease a little and an MRI may not even be indicated.  Even if it is, the doctor is the one who can help you assess the potential risk of waiting until you get insurance or until you can afford an MRI.

Good luck.

[mrmel]

Thank you Jim for your kind reply, I was not seeking medical opinions, merely moral support, although as a 17 year member I have seen literally hundreds of topics on here and many people share their experiences and some of what their medical out comes have been and what doctors have said about certain things. So again I was looking for similar experiences from post surgical patients and their experiences, just like thousand of other people do ever day on here and get hundreds of responses, just wanted to clarify.
 
Mel

[Kathleen_Mc]

Mel : To really know what is going on you need to see a doctor and get an MRI. My regrowth was not symptomatic and found by MRI done for another reason, I remained asymptomatic from the regrowth up until it's removal, I had already lost the 7-10 cranial nerves so there wasn't anything for the regrowth to effect., it was still really small and confined to the auditory canal. I don't know what your symptoms may or may not indicate but I do understand your anxiety about "what if it's a regrowth".....only answer is the MRI. Is there some way for you to be able to get this done? (I understand you haven't any insurance right now)
Kathleen
(P.S.: hadn't seen your post before now)

[mrmel]

Thank you Kathy for the reply, I appreciate it. I just returned to work Yesterday and I will have health insurance on January 1, so I will push for an mri asap. I know it is foolish to think after 17 years there would be regrowth, but I have had a dull ache pain in the back of my head since june and on the surgery side, it radiates into my neck as well and feels like it goes deep into the brain stem. Recently I have had my left eye start drying out for the first time since 3 years post op so it does make me nervous. I am hoping it is all coincidental, but those of us that have gone through 14 hours of radical brain surgery know how unnerving it is to have reoccurring symptoms. I am praying it is nothing, I will keep the site posted.
                              Mel

[TexasSprinter]

Hey Mel--I haven't been scouring this site the last few weeks as I have been recovering from AN surgery, so I did not see your message until today.  Unfortunately I don't have similar experiences to share but I'll send thoughts and prayers for your way for quick resolution of your headaches and hopefully a clean MRI. Please keep us posted after you get results.

[mrmel]

Thank you I really appreciate it, how are you doing? I hope your recovery is going well.

[TexasSprinter]

Not too bad. Have not had to deal with balance/vertigo issues because I lost the balance nerve in my first AN surgery one year ago and my body and brain have adjusted. More headache/head pain issues this time but so far very manageable with ibuprofen.  I look forward to hearing the (hopefully positive) results of your MRI. Merry Christmas to you.
Scott

[mrmel]

Glad to hear your doing ok, under the circumstances. May is ask why you are having surgery again a year post op from your previous? Did you have a regrowth that soon or some other issue related to your first surgery? Keep us posted. Keep going.
                              Mel

[TexasSprinter]

Mel--I had middle fossa surgery in Dec. 2012.  Middle fossa had the greatest chance to preserve my hearing.  Unfortunately my hearing was lost during the surgery, and because of the way the facial nerve was "splayed" (stretched out) over the side of the tumor the surgeons had access to, they were not able to get much of the tumor without risking the facial nerve.  I told them prior to the surgery to minimize facial-nerve damage if at all possible, so they stopped rather than removing the tumor and damaging the facial nerve.  So I tried watch and wait for a year and couldn't stand it.  Had translab surgery this month (gives the surgeons greater access to the tumor) and this time they got 98-99% of it with no facial nerve damage.  So other than the headaches, which are manageable, all is going well with the recovery.  Happy new year to you and best wishes for fewer headaches on your end.
Scott 

[leapyrtwins]

Mel -

although I've been a big Forum contributor, I was AWOL for a while - just returned a few weeks ago - so this is the first time I've read your post.

I don't have any personal experience with headaches, so I have no helpful advice except to recommend that you read the posts in the "Headache" section of the Forum.  There are numerous posts by people who suffer from headaches post op.  One who comes to mind is Captain Deb - who has tried just about everything under the sun for relief.  If memory serves me, I believe she finally found it - but I can't recall how; you'll have to read her posts.

As for regrowth, as others have said, unfortunately the only way to know is with an MRI.  Sounds like you are on your way to scheduling one soon.

Good luck - and please, keep us posted.

Prayers and good thoughts,

Jan 

[Soundy]

I have been awol since my only internet access right now is my trusty nook and I hate typing on it

I came here for similar reason... I have had headaches every since surgery 6.5 years ago...I have had them under control fairly well with lyrica but over last few weeks have been having what we have termed here "brain wrecks"...headaches that are disabling....

The headaches I am having are at base of neck...feels like a fire in my skull...odd burning ache...also return of tingling on surgery side and metal mouth... I have limited insurance that won't pay for a new MRI...

Hope you find a way to get the MRI... I am suppose to have coverage after July 2-2014.... it has been a long wait to come off BCBS's imposed pre- existing status that they say was due to some clause in Obama's initial healthcare mess that was put out right after I had surgery

I will keep you in thoughts