What are my Options?

[lhagsjr]

Hello All,
Basically my story is a sad one to date. For the last 3.5 months I have been having horrible head pain/feelings in my head that arent normal. It varies but its pretty much been in all parts of the head. Also my left eye is very irritated and my pupils seem to be a little more dilated then normal. I also get muscle twitches. I cannot live my life as I once could because the pain is 24/7 everyday. I have done the following in order to try to get help for my problem:

1.) I have had 2 CT scans, MRI, and a MRI of the brain.

2.) I am seeing a neurologist.

3.) I have done migraine infusion therapy without any relief.

4.) I have seen an eye doctor to make sure there is no pressure increase that he can see.

5.) I have seen a dentist to make sure there is no infection, etc..

6.) I have gone to the ER 2x when the pain was horrible hoping they could help me but reasonably knowing they couldnt.

Basically, what I fear most is an unruptured aneurysm is sitting in my head waiting to rupture. What can I do to make sure this isnt the case? What are my options? I know an MRA is a good tool for detecting them but I heard it may not be 100% accurate or the best. I understand the angiogram is but I dont think my neurologist will order it for me. How can I get this ordered for me? Im married just 6 months and 27 years old, Im healthy otherwise. I feel lucky because I feel like im being warned, but at the same time Im scared because I dont know what else I can do about it to help myself. I need your guys/girls help in basically telling me what I can do to take care of myself the best in this situation. I really do not know how the medical field works exactly. Your input would be GREATLY!!! appreciate.

Sincerely,
Lou(Philadelphia,PA)

[Biane]

Lou,

Hello. You've been through a lot - both physically and with testing.

I would ask your neurologist or GP for a referral to a neurosurgeon to have all your information evaluated. He or she would be the one to order an angiogram. Short of that you have had all the other tests.

I wish you the best. Let us know how it goes.

Biane

[FireflyR7]

:o I am so sorry you are going through this!! I know how frustrated you must be! I just wanted to suggest that you get an "Angiogram" done!! June 05 I had a 4mm rupture on the left side next to my left optical artery with no warning! I went to the ER 3 times had 3 CT's & MRI's with contrast and still didn't show the rupture. I am very lucky to still be here! I didn't have surgery until Sept. & Oct. for stenting & coiling. The Angiogram showed it instantly!! It was only 4mm after rupture. Sometimes they just don't show up with scans?? I would definately request a angiogram just to be safe!! You don't want one to rupture if you do have one!! Get an 2nd opinion if you have to, I had to keep pushing the matter & find my own NS. He could not believe what I had been through & survived before I found him!! It is your body & they are missing something!! You really have to take charge of your situation and not take no for an answer, you are lucky to be having warning signs! I didn't! If I had not kept persuing it, I wouldn't be here! Mine is a long rediculous story and most frustrating when you are so miserable!! I don't care how many times you have to go to the ER!! Go to the best hospital by you, find out if one has a anuerysm specialty dept.? I never gave up, I knew something was wrong!! I was 46 & they acted like I was too young or just looking for good drugs???? We had a 16 year old that had one, this has no age! Even babies die from anuerysms, it is ususally a genetic disorder. I was a firefighter up until the day mine happen & my husband is a EMT, we both knew it was something bad!! I got blurred vision, nausia, dizziness, and the dreaded headache that wouldn't stop... (But I had a rupture the whole time) I even start having chest pains before my surgery & eneded up in the hospital for a few days before my surgery, but it wasn't my heart. It was the Anuerysm. I don't mean to scare you, but you need a angiogam to be sure, the sooner the better!! Please get the Angio!! Keep us posted & I will keep you in my prayers!! Tricia / FireflyR7 :cool:

[snapdragon]

Hi Lou,sorry you are having to go through this ,warning signes are not always the easiest to explain to your Dr. or for him to understand ,My advice to you is see a neurologist or your GP and tell them you have done enough home work to know that the tests that you have had done (for your symptoms )are not accurate enough to always show the cause . and the symptoms are interfearing with your quality of life and at your age you don't need that kind of stress and demand that they do an angio , because you desirve to know once and for all what is going on . DR.S have a habit of pushing young people aside ,so you have to stand firm ,and make them take you seriously. I wish you luck and pray it is not something serious wrong ,but you have the right to know what is going on ,so push . take care .(((HUGS)))Snap

[Happydaze]

Hi Lou - I'm so sorry you are going through this. After my rupture and the

rupture of a close family member my neurosurgeon ordered MRI/MRA's for

my three daughters. He said that this is the test they should have and I

was very relieved that they were OK. They will have this test repeated

every 10 years. By the way, I see you are from Philly.

I went to Jefferson Hosp. there and my doctor is Dr.Rosenwasser who is

head of neurosurgery there. Get a referral and make an appointment.

They have new patient hours on Tuesdays/Weds I believe. Hope this helps

alittle.

Martie

[cindybear]

I really don't think you have a aneurysm...It would have been detected with a MRI. for sure....There would have been some kind of abnormality....something...I know...They seen mine on a CT..But thought it was a tumour..So had a MRI which clearly showed a aneurysm...They will not do a angiogram without a MRI showing some kind of abnormality..Because they can be very dangerous..They could cause stroke, or you could possibly bleed to death...There most be something else going on....Have you been cxhecked out for Lyme desease...Do you have High blood pressure, Migrain, I know I've had 8 angiograms, and they just won't do them, for not..Honey, It sounds like your in alot of stress also,,,worring...Try to relax...Keep going to your Neuro, But I can bet you don't have a aneurysm, and your awful lucky for that. I've been living through **** with mine for years...Hugs, Cindy