Hello Everyone! I am looking for some help from fellow members. I have my disability hearing next week and I am fairly new to this site.
I had a craniotomy clipping in 1993. All went well and was fine. 2010 had to have a coiling done on another aneurysm. Both in the same location, plus 3 other smaller aneuryams were then detected. Since that time I have suffered from debilitating headaches...daily, constant. Pain blockers dont help much - pain still runs 7-8. Also experience times of dizziness, equilibrium imbalance besides the normal light / sound / movement sensitivity and nausea.
Does anyone know of any articles available the talk about these side effects? I know talking with most of you, these are real symptoms...but is there anything documented other than our own stories?
It;s been 21/2 years of hell with no insurance and no way to work...need all the documentation that I can find for my hearing.
Any suggestions are welcome and appreciated!!
Thank you in advance for any help you can provide...wishing you a pain-free day!!
Lynnette
Hi Lynnette,
I am so sorry for all that you've had to endure.....Not that you already haven't thought of this, but your doctors (the last one you had seen for your coiling or clipping) I'd think they write up a very satisfying detail for the Disability Hearing --then again, I understand "the system", I too have no health care insurance and if you're in the same boat as I am, well, getting an appointment with your Neuro Docs can be anything but easy..Have you done a google search, straight up, enter in "headaches and aneurysm coils" or craniotomy/clippings and residual headaches" ., ?? (I just tried the following search: "Residual headaches after aneurysm coiling" and got a few interesting hits) I know others who've had their time dealing with the Disability Hearings, just don't let them try to overwhelm you and stick to your guns..and Paperwork...bring paperwork! Bring a paper trail with you to the hearing, they seem to understand paper trails with dates, procedures, RX's, etc. . It shouldn't be so hard to get them to understand, but then again what should be obvious sometimes isn't to them. Best of luck Janet
Lynnette, I so regret all that you have experienced and are experiencing.
I more regret that you have gone through 2.5 years and are just now coming up on your disability hearing;
however, I do not know when you applied... if you have an attorney representing you. I think there is a SS Disability group in the Group sites here...
My delays were so mixed; my mental dysfunction delayed thinking/knowing to file...too detailed, except to say I was blessed... in six months, tested and approved...
Do you know if SS has secured your med records, and, if that would include the angiograms or at least prints of the specific images displaying the aneurysms? Then, they could note the anatomy including which cranial nerves, lobe sections/portions, etc...affected by the aneurysms...coiled or yet untreated... Were any stents implanted? Were you referred to a neuro-oph and/or an ENT specialist following your coiling?
You may want to google for cranial nerves, third nerve palsy, and any other nerves located near the aneurysm and/or in the arterial access to it...
I am sitting here thinking, if SS Disability had a psychologist do my neurpsych testing, will they have a neurospecialist review your records, particularly the angiograms which you can order from the rad unit (whatever title in your facility) on CD/DVD... Or, do you know if that part has already been done w/by SS?
Prayers for your best results,
Pat
Janet...thank you for the info...
I recently asked numerous questions in "ask the doc" and was not aware of googling by this terminology you provided...I am sooo slow at thinking things thru...
Blessings
Pat
Hi Pat & Janet;
Thanks for your replies. I do have an attorney, however, I'm not really impressed at this point. I have done all the leg work for this hearing. Med records have been sent. My main issue is since the coiling I have not been able to work, I lost my home and everything else of value and have had to move 3 hours away from where my coiling was done - back home with my parents at age 46! Since then I have been able to get them to do my follow-up angiogram. According to this new neurologist, and the interventional radiologist who preformed the procedure...coil integrated well, 3 unruptured annies are stable and they can see no visible reason for me to be having these headaches and other side effects. Since then I cannot even get in to see a Dr - other than for prescription refills at the free clinic. I'm afraid that becuz I haven't been able to see any DR. other the the MD that does my prescriptions, that my chances arent going to be that good. Both the clipping and the coil, not too mention the unruptured ones are all on the carotid artery, right behind my right eye.
I have searched this site, have many personal stories that talk about these side effects, but nothing from a medical professional. My attorney says there is nothing in my file from Dr's that give anything cut & clear...and that it will come down to my credibility. This is my only chance to get back on my feet and be able to seek medical help. Without the disability I dont even have a way to look for another med that may work. This hearing will determine the rest of my life...and its scary when your life is in someone elses hands!
Thanks again Pat - prayers do help!
Lynnette
Lynette,
More questions on timing... remember I have no expertise... even in/of daily functions...
What symptoms brought you in for this last diagnosis/treatment of yours?
RE: credibility...is why I asked about the angio images... "a picture is worth a thousand words" and is/are what supports the written records...
My fantasy (likely reality) is that being home w/your parents is a blessing...more later...
Hugs and Prayers..
Pat
Lynnette,
Find out the exact name of the coils used in your procedure.. Go to the FDA's website under Medical Devices..Look up the coils....under the 'side effects' area, copy it off...(Also, your RadioNeuro as well as well as a good many others do not want to admit that there may be a related issue to your headaches and in their care of you--liability and such--many will not admit that the coils could possibly be related to headaches--we know ofcourse that that is pure BS, ) I'm going to write you an email concerning this issue, Okay? Peace, Janet
Hello Lynnette
I too have failed to get back to work following treatment of an unruptured aneurysm, though my main problems are cognitive and fatigue. I do get daily headaches mainly after concentrating on something, though they are now fairly mild. I have a medical background so have searched the medical literature for info about cognitive problems after surgery or coiling of unruptured aneurysms, mainly because my surgeon and radiologist were not anticipating problems or think they have a reason. There are plenty of studies of people post rupture, but far fewer of unruptured. Cognitive difficulties have been identified post treatment of unruptured annies though. Many of the papers are from Spain and in Spanish, but there are English abstracts. I'm going to attempt to attach my search file as a PDF as you or others might find it useful.
Have you had a neuropsychological assessment. I'd suggest getting one as that may identify problems that make work difficult.
Best wishes
Judith
365-cognitivefunctionreferences.pdf (110 KB)Janet...smiling over your biz standard acronym...
Lol, Pat you're so cool, your answers are scientifically 'on the money'--mine are just "OMG--!! try this !!" Lol , but truly doesn't it just get under your skin when you see how the system can stab at us !! Peace, Janet
Lynnette,
We need to talk. You and my wife are in the same boat in every imaginable way. Fortunately for you I may be able help you out. We have been through the hearing process and are now in appeal. The good news is that my education and background including research on the headache issues with clipping patients has been recognized by Social Security (hearing judge) as an expert for testimony. The problem you (and my wife) are experiencing is multifaceted and not understood at all by Doctors. The headache/migraine issue centers on the cranial closures and possibly the clips used in your surgery. It took me nearly 19 years to isolate these issues and after more then 3,000 headache days my wife has suffered, I can both explain the triggers and recreate them (not that we want to but because it is possible.)
A research document I created and which was accepted by Social Security as expert testimony can be made available to you (free). If you send me a email to my address here at BA Support we can figure out a way to get this to you and your Attorney. For more background information just review my posts. I look forward to hearing from you.
Ed
Lynnette,
Maybe getting the info to you could be done through the BA Inbox so you and your Attorney can evaluate a strategy for your upcoming hearing.
Ed
Wow, Thanks Ed!!! My email lis: ■■■■■■■■■■■■■■■■■■■■■■. Any information is helpful for sure. Just yesterday I did receive a letter from my Neurologist stating that, in his opinion I am unemployable. Which will help also.
Why is it that you wifes disability didn't go thru? If there is anything I can do to help you & her, please let me know. My hearing is Wednesday, and once more precedents are set for this type of thing, I hope it gets easier for everyone that has to deal with this.
You are a life-saver!!Thank you!
Lynnette
Never thought of that...thank you! I have that info in file...be searching soon!!
Thanks Janet!!
I do have the pics of my last angiogram...those have been submitted...not that a judge would know what he is looking at...but they are there!
Thank you Pat!
Thank you sooooo much!!!
Ed and Lynnette,
First, Ed, what you have offered to help is wonderful.
I am aware of many others who had difficulty securing SS Disability; somehow I was thinking there was a Group set up for it...I glanced around Groups and could not find it...may be under another term and/or a section under another site.
There are so many of us on Disability, it may be wonderful if a Group could be set up. My brain was so rattled, I did not even know to apply...When I did go in to apply, I was asked why I had waited so long...altho I still had to wait on the schedule for the testing...
Ed, a special thanks for what you have offered to Lynnette.
Pat
Judith, thanks very much for sharing the information. Interesting info. (:>
Judith...was your aneurysm coiled?
If so, can/will you share the artery/segment/size?
Working can be a disaster...I had/have concern just wth the commute...in traffic... and if vision/hearing have been tested...
Yes, the neuropsych tests are excellent...SS Disability did the qualified one for mine; the earlier one done at the facility did not list the test scores...and, also noted "sensorimotor exam deferred"...
SS apparently picked up on that because they did not accept/use that test...as the baseline...
So, these tests, like any other procedures...are based on the anatomical location and how it is covered...
Thanks for your input,
Pat