Author Topic: Now even more confused, doctors have me going in circles and getting nowhere  (Read 2860 times)

lauralynn

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Hello AN Family,

I did as my neurosurgeon suggested and went to see an Endocrinologist.  After she heard my side of the story she did not understand why my neurosurgeon had referred me to her.  She said that I should have been referred to a neurologist.  That makes sense but my neurosurgeon never recommended that.  So I thought I was attending all the necessary appts that I was supposed to in order to help me.  I googled some neurologists and actually found an oto neurologist who does specialize in tinnitus and alot of the issues that i am having.  Not sure what I should do at this point.  I know everyone keeps saying it takes time and I understand that but if i have to continue working full time and be able to function after work to take care of my children I need some resolvement for my chronic fatigue, weakness and continued pain.  Any suggestions???

God Bless,

Laura Lynn
4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

Jim Scott

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Laura Lynn ~

I'm so sorry to learn of your continuing post-treatment problems and your doctors apparent inability to address those issues that are negatively impacting your quality of life.  You are certainly trying to be proactive in your search for medical help so the runaround you're getting has to be immensely frustrating considering your work and child care obligations.   That having been stated, my suggestion is to consider consulting a pain management specialist (physiatrist) who may be able to help ameliorate some, if not all of these issues you're struggling with.  It's  a suggestion based on other people's experience, including that of my wife, suffering with nerve pain related to spinal injuries, who has benefited from using a pain management physician.

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Crazycat

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Laura Lynn,

This is a tough call. I see that your surgery was fairly recent. Your stats are similar to mine: translab, left-side, 100% hearing loss, large tumor, balance issues, fatigue, etc...I can tell you from direct experience that recovery from AN surgery can be very long and even at best you're never quite the same as you were before going into it. You're still on the early side of your recovery and some of these problems will improve over time. In my case you can add-on chronic double vision and heightened anxiety or nerviness. I've become very "short" with people since my surgeries (and oftentimes for very good reasons. I just don't put up with it like I used to).

There was a guy I met here through the forum years ago. He had a 3 cm growth and he had the same surgeons I had at the same hospital. We kept in touch off the forum because he lived close-by. Although his condition was not as severe as mine had been (I was plagued with hydrocephalus and shunt surgeries as well), he came through his surgery in much worse condition than I had; the worst of it being that he was afflicted with crippling headaches. I remember him saying to me that if he knew that he would end-up feeling the way had he'd never would have opted for surgery. Those bad headaches seemed to worsen and continued-on for a couple of years after his treatment. Then one day they just stopped and for no apparent reason.

Nerve cells are unlike other cells in that they do not reproduce. Unless they can be grafted together if they are cut there is no hope of recovery. If they are moved or even touched they can wreak havoc in the effected area of the body for years after. Over time they can reactivate or right themselves. This is why in the medical profession nerves that are tampered with are referred to as being "insulted". I believe the condition of either growing into or out of headaches can occur in AN patients after surgery as the body heals and the nerves shift and right themselves.  Nerve cells are ultra-temperamental things.

I remember reading somewhere that many reported miracle cures were neurological in nature. Given the quirky, on or off nature of neurons, I thought that was an interesting observation.

All I can suggest is, barring getting on SSDI—which can take years and is not realistic at this point for you—try to wait it out. You may look into Imitrex which has proven itself as the most effective non-narcotic pain med for headaches:

http://www.migraines.org/treatment/proitrxn.htm

For fatigue, combat it by eating properly and strengthening your body by doing whatever exercise you can manage to get in. This is crucial for anyone: proper diet + exercise = longer, quality living.

As far as the medical goose chase your doctors are sending you on, keep in mind that doctors are not perfect either. There are good doctors, not-so-good doctors and bad doctors as there are good and bad in any profession. I could cite one example after another of wrong diagnoses and malpractice. I was very fortunate to be living in an area with top hospitals, medical schools and some of the best doctors in the world: Boston.

Good luck with everything!

Paul

« Last Edit: February 18, 2011, 08:17:22 pm by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.