OK I am reading this post - months later… but to me it has so much relevance.
One thing that is very evident to me is that some surgeons are better than others at providing post surgery follow up and support.
Over a decade ago -the main concern with AN treatment was mortality. Improvements in science and medical procedures have nipped-that-one-in-the-bud and now the mortality rate is very low with Acoustic Neuroma tumors. More now are concerns with the morbidity… particularly post surgery (or Radiation treatment)
Some surgeons have the attitude that,
“You should just be thankful to be alive and you should be thanking me for your being here today…�
(They are still living in the 1960’s- 80’s. i.e. they only acknowledging the mortality issues of medical treatment) Other surgeons truly identify that life is not the same after the surgery (i.e. they acknowledge the morbidity) and try to refer you to specialists: vestibular therapy clinic, nuero-muscular retraining therapist or ophthalmologists etc. I am amazed how many surgeons have very little networking or connections made with therapists (or other specialists) to refer their patients to- as they neglect to understand the importance of partnerships and the team approach to healthcare.
I do not know what we as the ANA can do to encourage more accountability of the surgeons during the “post surgery� (i.e. beyond hospital discharge) follow-up but it is very clear to me that their responsibility should not stop once the last MRI says “the tumor is gone�. There are well documented residuals that linger long after surgery.
Kaye,
The key thing I am seeing, particularly here in the USA, is the best advocate for the patient is ‘the patient’ (or their close loving family and/or partner). If your husband is not getting support from the physicians (neurotologist, neurologist, PCP etc) you have involved in his case – then moving onto someone who will help him might be the best thing to do… I think you are stepping in the right direction here.
Your reaching out to other patients who have understanding of what it is like to go through all this - IS a step in the right direction. Try to encourage Joe to get on and write for himself… I tell you he will find a very caring and supportive group of people who can offer some insight, often web links to look at ….if not even names of therapists; vestibular clinic, facial therapy clinics or even counseling therapists. The key is your husband needs someone to basically say,
“I empathize with your problem and this IS difficult for you. I know you are NOT making it up or NO you are NOT a hypochondriac … let’s try to identify what your problems are exactly …and see what we can do to find some solutions.�
I would have thought speaking to a neurologist (who can examine the brain and cranial nerves in more depth) would have been helpful too. I am disappointed to read that this was not helpful… being that I too was thinking of consulting with a neurologist.
My biggest issues are sleep related. I was very hesitant to start taking sleeping pills (as my PCP suggested I do) and try to focus on “the cause� – rather than band-aid the problem with pharmaceuticals. I knew some of my frustrations and symptoms were much due to sleep deprivation. Now that I understand that brainstem (the sleep controller of the brain) involvement and the VII and possibly XII cranial nerves were affected (i.e. tongue gagging in the night) with my tumor. Now I have a better understanding as to ‘why’ I was not sleeping. (When we do not sleep well everything is out of balance) I sent my MRI & MRA’s to a sleep doctor (a pulmonary specialist – not a “nuero� doctor) … and he and I put things together to understand the bigger picture. We do not know the exact cause but we can make some educated guess and try to work from there. WE may not have solved the sleep disorder completely but we have put together some coping mechanism that does not create dependency on pharmaceuticals. But you know it was neither my PCP nor my nuero-doctors who initiated this – it was actually me insisting on seeing more specialists to get a better understanding of the bigger picture.
When one does not understand “why’ they are having issues and symptoms they feel powerless. I knew something was NOT ok with me- pre AN diagnoses. I sought help for many years with vertigo and tinnitus symptoms … and sometimes being unexplainably accident prone. I was starting to get rather depressed about being treated like a hypochondriac by a medical professional. My PCP, at the time, even suggested I see a “stress therapist�. I finally switched doctors. The long overdue ENT referral finally happened and there it was on a MRI - my 4 cm whopper. Suddenly everything started to make sense: ringing in the ears, fatigue, accident prone due to vestibular issues, the hearing loss was NOT due to natural aging -after all. As the pieces of the puzzle suddenly fell into place I could now see and understand the bigger picture… and I did not feel so powerless anymore. Once a clear diagnose was found – and suddenly I was finally being listened to by medical professionals (and yes even family)… from there I felt less depressed as people finally started to understand and to try and help me.
Year’s back one family member told me,
“It is all in your head- you are fine and just imagining things�
(Well they were half correct it was in my head alright – but I was not fine and NO I was not imagining things)
I am still having post op issues but rather than getting depressed and feeling powerless I am trying to understand the situation and as I learn more and more about neuroscience (actually incredibly interesting stuff!) I have better understanding of the problems and feel much less depressed and powerless about it.
It is important to maintain physical, mental and spiritual health in equal balance.
Spiritual
RE “Spiritual� -this ranges from feeling good after scaling to the top of a mountain to religious practices – each person has a different perspective as to what this is. Regardless your husband sounds like he is low in spirit at the moment. You are sounding like you are at your wits end as you do not know what to do for him anymore.
So far I have been to 2 ANA support group meetings.
#1
The first one we a had a dear woman who was in tears as she is still trying to decided what to do with her untreated tumor. Another man was extremely anxious about having his follow up MRI done… as he was worried about the residual tumor left behind to preserve his facial nerve.
#2
In the second meeting the woman was so much stronger, displayed humor and seemed to have become empowered as she continues to gather information about how to treat her tumor and where to go. The man finally did have his follow up MRI (a few if us really implored him to do this at the #1 meeting)… his results were good. He got over his fears. In this second meeting he seemed so much more relaxed and appeared to have some peace in mind. I.e. the 1st meeting there was ‘tears and fears’ – at the second meeting there was ‘understanding and humor’ - as we informally learned to laugh at our own AN symptoms as a survival technique. I certainly came out of the 2nd meeting with higher spirits than when I went in.
Are you and your husband attending ANA support group meetings? I find it not only helpful to discuss issues in this internet forum but to also meet people who are geographically closer to me who can empathize with what I am going through… and teach me to have a sense of humor in dealing with this often overwhelming recovery.
Physical
Is your husband getting at least 40 minutes of good aerobic exercise a day (power walking, cycling, a sport or something)? If he has knee and/or joint issues try non-weight bearing exercise like a stationary bike or the swimming pool. There is plenty of evidence that physical fitness can be a great combater for depression. Not only does it get the ole blood circulating and cardiovascular system working it will also assist in the circulation of CSF and dura fluid.
Mental
Hopefully in addressing the above - the mental issues will improve. This AN recovery journey can at times be taxing- and hard to take if people around us are not understanding. (BTW Is Joe sleeping ok?) Some days I have moments of “mental scattered-ness�. I started to journal this and came to realize this was directly related to the quality of sleep I had the night before. Once I started to address the sleep disorder and find some solutions- my mental alertness improved tenfold. So the AN was not so much the cause of sleep issues but was indirectly related due to the pressure that was once on the brainstem (which controls sleep), the involvement of VII cranial nerve (and possibly the XII nerve). I also found that taking on mental challenges that were NOT so much depend on my ‘auditory skills’ (or now lack of) and achieving at these - has really helped. I am learning to accept my new limitations and to work around them or to compensate through other means.
Yes there are major challenges to face post op and this, now doubt, was a life changing event.
Hugs to you both… I hope that you will have success in finding more understanding and compassionate physicians who are willing to work at identifying the problems and help you find some solutions. I hope through the ANA, in addition to the on-line discussion forum here, you both feel supported and can find some solutions.
Keep moving forward.
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