So its been since May of 2011for triple annie surgery with 3 clippings and a small resection in my front temporal lobe on the left side of my head . My recovery has been slow ..as all of us become better ppl with these changes . the new set of doctors I now see are making me feel like Im crazy !! such a drastic change from the mayo hospital , I have been labled with "somatization disorder " meaning I have physical problems , but they cannt find a reason for them ?? so its my brain creating these due to anxiety ,depression ,stress ?? ever heard of such a thing ? they did send me for nero phsy testing ...which came back that I have cognitive complaints (I looked it up it talks about old ppl and dementia ?) I have a mood disorder and severe headaches . My normal eye doctor found that I have severe convergence insufficiency , binocular disfunction and photophobia with motion sickness .
I am a 46 year old female who just wants to try to gain back as much of "me " as I can ..and I have never felt as stupid or crazy as this clinic has made me feel for the last 3 months !! any one have thought opinions , or heard anything close to this ? i would love to hear from you ...please !!
Oh Cathy...I am so sorry for all of this and I can only imagine how frustrated you must feel...don't they feel alot of this is due to triple annie surgery that isn't even one year...
Before my annie was found..."long story" but I had collapsed twice in 10 days...anyways, at ER...the ER Doctor (man) wanted me admitted asap for MRA...the other Doctor (women) kept telling me I was anxious and a women...and maybe starting menopause...what the Hell...??? I don't wish her on anyone...hence, the other Doctor saved my life...so see very similar to you...for along time ... I had felt like I was crazy...because I was so mis~diagnosed...
Remember something important Cathy...we know our bodies better than anyone...rest and heal...Cyber~thoughts your way...Colleen
I am so sorry that you have been subjected to the insensitivity of these new doctors. Please remember that the doctors work for you, not the other way around!
If you are unhappy, find new doctors, ones that will listen to you and take your complaints seriously! It's enough that we as aneurysm survivors have to go through what we do, the last thing we need are doctors who essentially call us "mental" cases and cast aside our recovery.
I know and understand that feeling of watching to get back as much of "you" as you can, but I try to remember when I begin to feel like that that the "old" me is gone and , this is my new life, my "after annie life". Live, Love, Laugh and rejoice in your new life. AND find new doctors!
I wish you the best of luck with this and hope that you find someone who will truly listen to you!
So sorry for all you are going through. Is it possibe for you to go back to Mayo to see a neurologist there?
Of the doctors who diagnosed somatization, what was recommened to you for treatment?
Of the ones noting cognitive complaints, what was their recommendation for treatment?
Many of us have gone through a lot; and, we need to share a lot more on what the damaged areas of the brain are affecting, and, what may be done for recovery.
Hugs and prayers for each step.
I wish i could go back to Mayo !! but my insurance will not cover them any more . The somatization sent me to a counselor who tells me its all in my head and not real ..get over it and get back to work !! makes me feel stupid and crazy !! the cognitive ...nothing so far as treatment ....i need to find a new clinic with all the specialists i need ... so upsetting to go to all this with hope ...and now im afraid that the new one will say the same ?? I have the problems ..but they cannt find a physical reason for them ?? I pointed out the 8 inch sore scar on my scull ..... 4 bolts that stick up ....and a vein at my left temple that is now indented in my head (I thought that to be ?? weird ) the eye problems they have set a appointment with a nero othomaligst end of march ..just wondering how many others face any of these same things and how the were solved .they wont even do a 6 month check on the annies ...they only do one year ?? mayo was insistant on 6 months for a recheck . thank you for your thoughts and prayers
thank you , im working on getting set up at new clinic ..better care , someone who cares to search for solutions to problems ..or to even test more than meeting in their office and saying "no reason for these problems "
We all have to struggle for proper care ...so sad ..as advance as they are we still always know our bodies better , i refuse to let them try to say the eye problems , the pain to touch on my left side , the headaches , are all created in my head ..not a physical reason for it . how dumb of them .. I never had any of these issues before this ..and if it is something i just live with ? im ok with that to because IM ALIVE ...that's how we all feel !!!but to brush me off ..that's not ok ..they just need to be honest . thanks for your input and sharing ..it does make us really upset at times doesn't it !!
I know others who have gone thru, are going thru, what you are with your policy. The contractual commitments between insurance companies and facilities/clinics are stronger than what is offered to the members/subscribers paying their monthly dues.
have you asked your Mayo MD(s) for a letter on yor status since they have all your background data/status? Do you ahve your Discharge, or any of your records, from Mayo?
Can you drive now, or are you restricted? That should hve some bearing n your current status... Or, was driving not adressed with you?
I am glad you are seeng a neuro-oph. I did twice, intially to set my status;after vision therapy for 8 months; went in for f/up to document the changes. Will send you more info.
Continued hugs and prayers...
Cathy... Vision therapy... Search on-line for more data...and other providers...
Pursue the ophthalmology vsion therapy to pick up some of the newer under the med connected... refers to stroke, TBI, etc.. recovery.
For the long-term vision therapy, under optometrists, the various websites... many more
www.opt.indiana.edu/vitlit/vtlit.html; www.covd.org www.aoanet.org/ia-op-vis-ther.html
and, my god-given www.alderwoodvisiontherapy.com I cherish Dr. Nancy Torgerson; I return anually for my check-ups.
Of critical interest, my family took me back to an ophthalmalogist post-D/C; she did cover a lot of what was wrong; did not offer one suggestion on recovery; nor did she refer me to a neuro-oph... Friends of mine asked their oph who told them I should see a neuro-oph... Had to go back to oph for the referral...It is quite sad when a patient has to ask for the specialist...
So, I pray that any of this infor may help another in their recovery potentials...
I did not regain my upper right peripheral...or photopobia (light/dark reaction) and, when fatgued, I yet get the flashes / streaks across my worst right eye. I also have special sunglasses, they look almost black on the outside, and my looking through them is so reasonable. A few times caught in rain glare, I have worn them. I also keep the lights at home, reduced; i.e. 60-75 watt bulbs in my light fixtures / lamps.
Hope any of this will help anyone w/vision isues.