They Make u think you are crazy

I dont know about you, But sometimes these Dr's make you feel like you are crazy. I had my clipping 4 1/2 months ago. Did really well, after 4 days I was released..Back to work after 5 wks and 2 months after that the headaches started again, then the tingling and numbness on the side of my face and dizziness. Coworkers talked me into seeing the Dr. ( I just figured it was part of the healing proccess) So off I go to the GP, who in turn sent me to the ER due to having the same symptons prior. ( which by the way I was told are not any signs of a brain aneurysm; even though I've read many stories on here that had the same symptons as I did) In the hall going to get a CAT scan I see the PA from the surgeons office and she askes what am I doing there.. I advise and her response was.. oh yeah people who've had an aneurysm tend to become over cautious... (REALLY!! did she just say that to me). They tell me to follow up w a nuerologist due to loss of density and change in the CAT scan ( what does this mean... not a clue) So I go see this Dr. UGH.. this guy was not for me. He asks what brings me here.. I tell him, when I told him about the numbness and tingling.. he tells me that's the wrong side... wrong side to what?? Then when I tell him I get dizzy he tells me that a vague statement... ???? REALLY IS THIS GUY FOR REAL,, IS THIS A JOKE? I leave there w a script in hand for some antiseizure med for the headache and scipt for an mri... Wk later I call to get the results and he says oh yeah you had a small stroke and you cholestrol is high.. follow up with me in 3 months... ummmmm really thats how you tell me I had a stroke. Yeah not happy with this one.. I went to see another one Today... I may say a wrong word from time to time or forget that I just did something, But sure as heck KNow that I am not crazy.. They are!!! Does any one else have the headaches with the numbness/tingling on the face . I just want it to go away and feel normal again!!

Hey Jo-Anne, I had that numbness and tingeling on the left side of my forehead and it stayed that way for 2 or 3 months. It did finally go away, I called my surgeons office and talked to his nurse about it and they only told me that it had nothing to do with my aneurysm or surgery, I still dont know what caused it but it started a short time after surgery. It really doesnt make much since that all these symptons that start after surgery ( in which a lot of people get ) dont have anything to do with anuerysms or brain surgery. I completely understand how you feel. Im sorry you had a hard time with your Dr. I am thankful For mine I really like him. Just give that numbness some time I think it will eventually go away. Also I didnt start to feel somewhat normal for about a year, you will get there. Good luck with your new Dr. Laurie

Hi JoAnne...I am so sorry about all you have been through and then a stroke...I had a similar instance with Doctors when my annie was found...without getting into it...I think this is our Medical people in the United States...sad, but true...they do what they must, and then they don't really know the rest and/or care...after my coiling, my right eye was closed and my neurosurgeon tsaid hat had nothing to do with surgery..."Hello"...it was open before I came in for surgery...Anyways, I don't have answers, other than ... be your own Health advocate...and if you don't like the answers ...keep pursuing them...

And No you are not crazy...far from it...I wish the Doctors would read this site...

Cyber~Thoughts going out your way...Colleen

I am not going to go into the whole story but I want to tell you that I saw three neurologists in three years. Now I went to two of them for a short time, let’s say consults, but still three doc’s. Finally in January, 2011, I went to the fourth (yes the fourth) neurologist. You see I am an advocate for myself. When I know in my gut that something is wrong, even though for some reason I can’t prove it immediately, I will not stop. This doctor did more for me in three weeks then all of the others in three years. I must be honest the doc I saw regularly did try to help me. I was having seizures. So now I am back on my meds and have been seizure free for four months. At last, an answer but more important a medication to control the problem. So Jo Anne never give up! Best of Luck. Hope you feel better.

Welcome!!! I love your Dr. Ugh...I call it dilbertonian data...

My numbness / tingling is down my left arm...and, down my left sciatic nerve / piriformis...which is opposite the right brain...However, presumably my brain aneurysm is in the left hemispehre which would relate to my right body... It's a fascinating challenge to get diagnosed...

Would you share your story of your symptoms of which you were told were not aneurysm related?

Please do order your written records; request your supporting clincial data...i.e. the angiograms...any other radiographics... other tests... otherwise you will only have the written story format record...

Hey, we all say the wrong words...even what I may be saying to you and you to me... and, whoever else we talked to today, yesterday, last week and tomorrow...

I relate to everything you are saying. My PCP was worthless. I developed stomach problems after my aneurysm surgery and his nurse offered to refer me to a gastroneurologist! I guess that’s a doc for people who’s heads are up their rears. I went to him for the fatique and of course I am just depressed. One day after being discharged from the hospital where I had the coiling done which is 2 1/2 hrs away, I had a sub arachnoid hem, I went to the ER, and had to wait 6 hours for an ambulance to take me back to the hospital 2 1/2 hours away. So I guess your brain can bleed for hours, not a problem. But of course this had nothing to do with the surgery and did not cause the neuropathy, really. I am very bitter about how I have been treated by the professionals, they all act like I am just trying to get drugs, or I’m crazy, or I’m lying because I want attention or something. When what I want the most is to get my life back. I’m with you; I almost forget what normal feels like.

Hi, I have unruptured 5mm anni. Was at dr. Tues. I have tingling on right side of face that comes and goes, ringing ears, daily headaches, and dizziness. Dr. told me it has nothing to do with anni. I also have memory loss say the wrong word or say something to some one and then forget that I said it. According to drs. There are no symtomps of unruptured anni. I'm with you I think they are the one's that are crazy. Where is there compassion? Maybe if they listen to us and did some reserch on what they are hearing from those with anni before rupture they would relize there are sysmtoms. Although, even when you tell them of a symtom they still say it is unrelated. Keep looking for the right dr. for you. Their out there. It's a sad day when we have to work so hard to find the help we need. You are in my prayers.

Deanna

I too feel like they brush me off and I leave feeling “crazy.” Like you I did really well for weeks, until I ended up admitted to the hospital with what they though was a stroke. Since then I’ve had God awful headaches that make me cry my eyes out, claw my arms and pull my hair. They make surgery seem like a cake walk. Afterwards I have coordination issues… vision issues… speech/language issues… and swelling on my temple right by where I had surgery. After leaving the neurologist I walked out with a script for Kepra (an anti- seizure med) which has helped a bit. I just want to feel normal again and have someone get to the bottom of this! I keep being told “I’m a unique situation.” However, it seems many on this forum have some of the same issues! I’m sorry you’re being treated the same way but it sure does make me feel better to know I’m not alone.

Good doctors are a rarity nowadays. I urge you to please keep looking until you find a compassionate and professional doctor and don’t let the negative attitude stop you from being proactive about your aneurysm. It is your life that’s on the line so keep questioning them about your concerns no matter how trivial it might seem to them. A few minutes of their day is nothing when your entire life is at stake.

I filed a complaint with the hospital about the lack of care the docs have given me. Not to have relief from pain is against our patients’ rights. Every time I called and told them about the pain I was referred to another doc who did more testing and then referred to another doc, etc. A total of 7 docs and no one would do anything about the pain unless I was willing to take Neurotin, which I am not. We have a right to care, compassion, & choice. After I filed the complaint I had my follow up angio and I called ahead of time and told the neurosurgeon that the dye gives me a horrific headache…when I was dc’d they gave me a script for pain pills! The first script I had gotten throughout this nightmare. It is a scientific fact that patients heal more quickly and have less secondary physical problems when their pain is controlled. I was told that I would be referred to a pain clinic and that never happened. Since we have no money now to travel there I just gave up.

Re the headache and contrast dye - drink lots of water after your CTA to flush the dye out of your system - a doctor told me that (yes, there are some helpful few). It works for me. Good luck!

I was coiled for a 16mm basilar tip anny that ruptured during surgery. I experience the same thing. Everyone treated me like I was crazy until I had a seizure in the dr. office. Of course the scarry thing is having no memory of this, just loss of time that my brain fills with false memories. I have been diagnosed with 3 different kind of seizure disorders, an electrolite imbalance of the brain, and perminent damage to the cerabellum.

I think the vision issues...speach/language issues... and coordination issues... are a different set of symptoms. Only because I can have those without a seizure as well.

i have headaches and tingling but not in my face, in my hands and feet and i was told it was anxiety.First i know they cant give you siezure med and send you off because you cant stop taking that you can have a siezure, you need a neurologist they would do a eeg. I have dizzy and vertigo and was told this comes with ruptures or just aneurysms.I didnt even get informed on anything i learned this myself i was told to go online there is great info !! well thank you i almost died.I would start all over with a neurologist and your primary. I need to go and do something with my headaches because my surgeon looked at my ct and said he aint concerned. And four months out is early things aint healed yet.

your symptoms ar from the aneurysm. If you didnt know you had one that would of been a clue.

I experiece the same thing. The symptoms and the doctors. It is so frustrating!!! My biggest problem is my surgery was done in a different city and the doctors here do not understand the surgery I had and what happened. But I have no patience for the dr's that treat me like it is all in my head. I went through that for a while, and although emotionally devistating I pushed them to keep looking because my family and I knew what I was going through. I was finally able to get some of the answers for my situation.

I could go on and on... but sumed up, some dr.s instead of explaining that they don't know, try to convince the paitent that they are not really experiencing what they are. Others that don't understand the surgery or what happened won't say so, and go about doing and testing for the wrong things. But the biggest problem is the medical arts do not fully understand how and why the brain functions the way it does. Exp. You have 3 paitents with identical brain injuries, they are treated idetically, 1 dies - 1 becomes permanetly disabled - 1 walks away the next day with a few problems.

The trauma of all of this is difficult enough to deal with. I just don't understand why the words "brain surgery" doesn't have any weight. It's not like we just show up and have all of these problem without anything happening to us. I expect to get some level of respect for what I have been through instead of the indifference where they have me dragging my poor sick body from doctor to doctor and hospital to hospital only to tell me Nothing and do Nothing but take my money and leave me like a sick animal just crying for mercy. And when you do cry, well then it's all caused by depression and nothing else. I'd like to give them this pain and see if they cry. This is just wrong and as soon as I am well enough I will make every effort to evoke change in the way we are treated. God bless.

Laurie, strange…I have tingling in my hands/fingers on my left side. My craniotomy was on the right side? It feels like my circulation or something isn’t very good or something on that side. Can’t explain it.

Vitamin B-12 helps with the numbness. Avoid foods high in vitamin B-6, this can cause migraines. I had to have all of my levels checked to make sure B-6 wasn’t too high.

I too get numbness and tingling in my face and sometimes my right arm. I had it before my aneurysm clipping in Sept. 2009 and I am still getting it. I was also told it was not related to the aneurysm. I hesitate to tell my Neurosurgeon I am having these symptoms where she told me they aren't related.

A few days after my right 8mm ICA was coiled, my left arm started to tingle then went numb then floppy then my mouth started to droop. I knew I was having a stroke. Rang the hospital straight away, advised to go to the ER where they did a CT scan on me. I was kept overnight as the scan confirmed I had had a mini stroke or Transient Ischaemic Attack (TIA) and they want to make sure it doesn't become a major one. I do not want to alarm anyone with similar symptoms but just that you be aware that it could be stroke and that if it is you need to go to ER straight away - it could be a life and death situation. However, mine was caused by a clot that developed around the stent, travelled through my arteries and got lodged somewhere - thus the stroke. The stent is still thrombosed and will apparently stay that way but after a few more TIAs after the first one, it has not happened again and was advised it should not happen again as the clot is now more "stabilised" and given that I am on aspirin. I was also informed that if the right side of the brain is affected as in mine, the left side of the body gets affected somehow. The brain is still a puzzle for doctors. It is quite sensitive and if they "touch" a part of it during a procedure, they do not know what part of the body that that part of the brain is controlling. I saw a clip of a man having open brain surgery but was awake during the surgery and asked to play his guitar. They want to see that they, by exploring his brain, are not compromising something else in his body. Amazing!