Does anyone else suffer from chronic pain after their aneurysm? Mine is in both of my legs where the blood leaked into my spinal fluid. If I dont take pain medicine for it, I cant even do my day to day chores at home. My GP looks at me like I am crazy and dont really need them. Surgeon that did my coiling tried me on some sort of anti-sezuire medicine that did nothing. I finally found a Neurologist that comes to my city but they only work by referrals. SO, I called my GP's nurse and she doesn't even want to do that! I was told to call back in the morning and she will tell me what they can and cant do. What is wrong with these people?! The ones that dont really need pain meds dont seem to have any problems getting refills on a monthly basis. I dont get it.
Amy...again, welcome to your friends...
Prayers for your recovery and securing health care...
Pat
Amy, I am shocked and so sorry to hear about your difficulties. The lack of support from your doctors is appalling. Regarding your other post about returning to work; my experience with my neurologist was that his focus was totally on whether the aneurysm had been successfully treated. When he say's all test show you are fine it may be that is what he means. Can you contact some of the support and advocacy agencies in your state? Below is contact information for the Brain Injury Association of Mississippi. I can't imagine that they would give you medical referrals but they might have support groups and members might be able to help.
BIA of Mississippi
P.O. Box 55912
Jackson, MS 39296-5912
Info Line:
Toll-Free: 800-■■■■■■■■
Phone: 601-■■■■■■■■
Fax: 601-■■■■■■■■
Website: http://www.msbia.org
It really sounds like you need some additional medical evaluations. Are you near any major University with a medical school? You also need to talk to a psychologist or someone about the anxiety etc. You have taken on A LOT early in your recovery. My dr. told me that after a SAH there is most like some cognitive disability and that would impact your ability to perform your job and deal with the stress of recovery. My rupture occurred one year ago and while I returned to work part-time 13 weeks after the coiling, I recently had to reduce my hours. I had to ask for a permanent accommodation under the ADA.
Each State also have a Protection & Advocacy (P&A) agency for people with disabilities that you could contact. Can you request a medical leave under the Family Medical Leave Act? Your employer should be able to give you information on that. Contact your P&A and find out how to get your employer to give you a leave. This should give you some time to get some of your medical issues worked out. Let me know if you can't find the P&A in your State and I will try and find it for you.
This community is great for support but you should also check the BAF site for information on recovery etc. There is so much information, things to learn etc. My husband was a wonderful advocate for me, helping me every step of the way.
There is soooo much to recovery and you need more support/help. Sorry this is so long, I m rooting for you!
Hi Amy...Not sure it is chronic pain, but since I have been coiled...I suffer from awful headaches...right side neck pain and right eye pain...(not to mention it droops)...anyways...I take feriocet when the headaches are actual migraines (they last a few days)...I take nothing for my neck or eye pain...tend you do stretching exercises and moist heat....somedays...I hurt so much...but I trudge on...and hope and pray all of this will get better...I will include you in them...~ Hope you get some relief ~ Cyber~thoughts your way ~ Colleen
Amy do the pains start in your hipbones on the outside and travel down the outside of your thighs and down???
Thank you Pat
Thank you Kathy. I bookmarked that link you gave me. Dont I have to be approved for my disability before I can be approved for Medicare?
I read on here where a lot of survivors suffer from headaches but I really dont have that many. Just occasionally. My legs are a huge problem for me.
There really is never any relief to say it ever starts anywhere. They always hurt, just different pain levels. Right leg is mostly behind my knee. Left leg did start (never before a couple of days ago) in my hip joint in the front. It hurts worse than my right leg thats been such a problem for so many weeks. They told me the pain would eventually go away but didnt tell me even approx. how long.
Amy, when I noted the other day, my mind was too blank...bear w/my short memory on earlier posts...
Did your natural blood leak into your spine from rupture?
Was a lumbar punture done to check the CSF in the spine?
The puncture is done in the lumbar 4-5 region and where the sciatic nerve is located/accessed (right term?); somehow connects to the piriformis muscle and whatever the travel distance from there...
What was the time frame from coiling, to seiure med; to stopping it; to your new pain pill; and, he growth change in your pain?
May want to google: pituitary to adrenal system; pituitary to adrenal axis; sciatic nerve anatomy; piriformis anatomy...whatever else you were told / read in your records...add/move words around in your phrases.
Have you noticed any swelling? Seems like more of us have swelling...and, for some, it has advanced...
Prayers you will get the med care you need..
Pat
Yes Pat, it was the blood from my brain. You lost me on the lumbar punture. No needles in my back if thats what you mean. They just explained to me why I was in so much pain and kept me on pain meds and patches while I was there.
They only put me on sezuire meds one time, briefly, because I told them I was having to double-up on my pain meds. It didnt seem to help at all.
I havent had any swelling. Where is the swelling youre talking about?
Blockage in your legs?? What kind of procedure were they doing?
I think at first they labeled me but after seeing the Dr again with my list of problems and explaining to him again WHY my legs hurt so bad, he has a totally different outlook even if he doesnt know a lot about it. His nurse was my problem. She acted like I was an inconvieniance when I called. She wouldnt really tell Dr Turner much except that I called wanting more pain pills. I wont be dealing with her again. Only the phone nurse, per Dr Turner!!
Hi, I’m sorry to hear about your pain. I know where you are at. I had an anyerism bac on Dec. 2, 2011. I am still dealing with leg pain. That is 6 months later. Let me tell you that it is significantly less than before but still present. I had hip, tailbone, leg and feet pain. It is from the blood irritating nerves in those areas. The neuro surgeon said it would take time to absorb. She gave two round of oral steroids that lasted eight days each and that made great improvements. Really insist seemed that time was the real treatment. Every other doctor I saw thought I was crazy and thought the pain was not related to the bleed. It is a frustrating situation and I feel for you. The three to four month mark was where ii was able to do things without wincing in pain.
Thank you so much Jo!
Oh wow, 6 months is a long time. I'm so glad to find someone else with this problem. I was beginning to think I was the only one! Mine is exactly like you explained.
I'm just not thrilled about steroids. I'm only 5ft 3 and you can call it vanity if you want but I dont want to balloon up from them. 5 pounds on me is a lot at my height.
I havent experienced the foot pain yet. It seems to have hung in on my right leg behind my knee. A few days ago it hit me in my left, front hip.
Thank you for sharing Jim and I hope you are pain free soon.