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First neurologist appointment


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Hi all. Yesterday was my first visit with the neurologist who's care I'll be under, and I'm a bit upset about the visit and I guess I need to talk about it some...

There were 4 different neurologists during my hospital stays, but I hadn't seen one "on the outside" yet. I was ready for the appointment and had all my questions written down so I wouldn't forget anything and my fiancé was there with me for support. But then he came in and right away said that I had a diagnosis of SAH but no blood was ever seen on any of my CT scans. Well my jaw dropped and we said that we had been told differently and he left to check on it. That's when I just kind of shut down.

You see I've had numerous issues with doctors contradicting each other over and over and this "blood on the scan" thing is one of the worst. It has been a point of contention ever since this all happened to me, but I had finally got what I thought was a definite answer that, yes, there was a small amount of blood visible on my last CTA scan. So for him to say otherwise just really upset me. I guess it doesn't matter so much medically since they still know I had a hemorrhage from the lumbar puncture test results, but for some reason it's important to me to know if any scan has actually shown blood on my brain or not. Plus, I feel like my condition has been minimized by some of my doctors. You all know probably know the story... I was just kind of sent on my way with basically no support whatsoever after my 10 days in the hospital: "Here's your pills, your chance of re-bleed is basically nil, go to the ED if you need anything." And since there's not been any aneurysm and I don't have any obvious disability, the blood being seen on the scan kind of meant to me that it's real, that I do have a serious condition that deserves to be treated as such. Whether it's rational or not, that's the way I see it. I mean I don't want to be sick and I am so grateful that I have a good prognosis, but I do want my condition to be treated seriously. This is the most dangerous health problem I've ever had. Also I'm just tired, just really, really tired.. and I can't deal with this again, with doctors telling me a different thing every time I see one.

Anyway, from that point on I wasn't really present, and I just kind of nodded and smiled as he said I should be fine in a couple weeks as long as my next CTA shows no aneurysm. He said my symptoms are the result of me having the "perfect storm" of SAH, stress, and being on meds; and that storms fade away. My facial tic will resolve, my memory will get better, personality changes will reverse, I won't have a re-bleed, and the headaches will get better. I just listened as he said that soon the only remnant of my SAH will be a higher level of susceptibility to future headaches. I asked about work and he wrote me out until the end of the month. He'll call after my CTA and I have a follow-up in a month. I just said ok and went home. He was very nice and seemed like a good guy, and I hope he's right and I'm better soon. But in my heart I know it's not that simple. I'm beginning to think that maybe neurologists are just concerned about structural damage to the brain, and that since mine is not measurably damaged, then, in their minds, I have no reason to have any problems. I don't know, maybe that's all they're supposed to do.

Sorry to ramble on, but I just needed to get that off my chest. Thanks for listening.

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Hiya,

I can understand your frustrations when all you want is some answers and you don't get any. I had an aneurysmal sah and was treated by coiling on the NHS. While they did a fantastic job of the emergency issues, there has been nothing since and I have not seen a neurologist since before i left hospital so I can sympathise with having no answers to your questions. I do think you are right about neurologists, they are there to fix the brain and nothing else.

This website is fantastic and you will fine lots of inspiration and support here. I hope you get further at your next follow-up.

Dawn x

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I too can understand your frustrations. I had an anni without the bleed so I am told. My anni was clear on the angio (6mm) but when I had my review I asked about a bleed & they said there was no sign of any bleed from the site of the anni. The registrar checked my file & said the only area of blood/bruising was on my leg from the angio site.

I did have vasospasms during the op & i remember the Cons saying he had never seen them before when there wasn't a bleed. I asked about the area of damage ot my brain & was told in was confined to the area of the surgery (I was clipped). So it seems all the problems I am having with fatigue etc are as a result of the surgery (apart from the problem with my eye). I have found most medical staff have differing opinions on most things & that is very frustrating.

Maybe it would be useful for you to have a copy of your notes or arrange a meeting with one of your neuros to discuss the differences in diagnosis?

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Hi, I'm sorry to hear the appointment didn't go as you had hoped. Sounds like you went in well prepared but were completely taken by surprise with the neuro's interpretation of the scan results and reports. I have to agree with you, I think the neuro's focus on the physical damage to the brain. The neurosurgeon declares nothing is wrong with us when there is no need for surgery. The neurologist says we will be fine in a few short weeks - Im guessing that's when any blood has been absorbed down through the spine and any bruising or swelling or other leftover trauma has healed.

There is a huge gap in care from the event to when we are actually 'all better'. I'm not sure why that is. From what I can see on this forum the same gap exists in the US, Canada, Australia, and the UK but the UK has more awareness due to programs like Headway and this forum. Thank goodness for BTG!!!!

Our recovery rates differ so I can see why the pros don't want to say you will feel this way in three months and this way in six and so on. It's most likely that funding hasn't been provided to do enough proper studies to see what actually happens and therefore no infrastructure is in place for any type of aftercare. Our numbers are small too compared to other illnesses like heart disease and cancer. On top of that, pSAH or NASAH is yet even a smaller number of those who've had SAH.

You are early in your recovery right now. Rest and lots of water is what all of us will tell you is best. The water will help ease the headaches. The really good news is that you've had the type of SAH that isn't likely to occur again and you've found BTG early in your recovery. We will help however we can.

Sandi K. Xoxoox

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I had lots of nuro visits lots of quiestions (from me) little to no answers from them....

They are there to fix us up & they do a great job its after that leaves a lot to be diesired & seems to be across the board (whatever side of the pond your on)

Hopefully as time goes on things will improve for you.

take care.

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Hi Boy,

Sorry you felt a little hurt by Nuero ... perhaps you should go to own Doc and tell him how you feel...like you have been

left in limbo land (My words) ....before my SAH I had a blood/tinny taste in back of nose and throat..I just thought I'd

blown my nose too hard....wish I had known......if only !

Sort yourself out Boy..do not be fobbed off get Doc to write to Neuro guy and list what is wrong and tell Doc you feel scared

it will happen again and then maybe anni ( You have to lay it on thick)...Sorry you never got closure from hospital..but keep smiling and don't ever give up

Stress is bad for us so you do not need it ...., But I wish you all the best xx

REMEMBER

Keep calm and keep well

WinB143 x

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BWC, I understand all so well what you are talking about. I have not read the rest of the post as I am on my lunch hour and I have already used my spoon ration for the day and I have been off for 4 days prior to this mornings mad house.

I believe they know very little, and I think they must weigh the words very carefully to not be misunderstood or told something wrogn and be sued. But when he said that about the blood is a poor example. I know my neurosurgeon told me once when I was askin gabout reovery I needed to " ask someone smarter then he" I was thinking who the eck is smarter than a brian surgeon. I am 7 months post and I still get no straight answers on my issues of weather I had a stroke or not with it. I have my reports here and it says so as does my nerologist and cardiolgist but neurosrgeon sayd no , bu tnow I am wondering if the no was for him misunderstanding the question. I am still banging my head against the wall. I loved when you said you were all set with your questions and then that threw you for a loop. That is exactly how I feel all the time.

I started a journal yesterday - which I should of started as soon as I got home but I didnt so anyway I started it adn wrote " June, 24th, 2012. and had to scratch that date out.

I was so ill for months prior to my SAh and I know it may of been the "chronic stroke" but no one would listen to me.

I do not want to be a Debbie Downer.

Gotta run adn make some lunch - good luck.

I suggest calling his office with your questions and tell him what you said here on your post. :)

Maryb

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Hi I just posted a new thread before I read yours. Amazing how similar our appointments have been (although I am nearly 4 years on and I know this is still early days for you).

I totally understand your frustration and the 'shutting down'. I tried twice to explain myself today and got several versions of the same answer by the doctor, so I just gave up.....

I have 3 annies, had one SAH, followed by 2 separate operations, have proven cognitive difficulties etc, etc. I even asked why, as I only had a grade 1 bleed, why am I not fully better, other people get better.....

I don't think it matters whether it was a small bleed, a non annie bleed or whatever. We are so very lucky to have got off as lightly as we did, but damage has been done, regardless and life has changed enormously in comparison. It just makes me very sad, very angry and very frustrated that doctors are not any where near as informed as they SHOULD be of the lasting after effects.

Please don't let that appointment get you down, you are not alone in trying to get better and get answers or acknowledgement for how you have been affected.

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Oh how I wish doctors would read our forum!

The mind is so complex, and although professionals seem to know lots I am sure the collective experience and knowledge shared on this forum would astound them.

I only saw a neurosurgeon in the hospital when they did the Cerebral Angio. He popped in to see me on the way out and said you are good to go. Minimal chances of a recurrence.

So here we are, left to support each other. Well I couldn't have chosen a better group of people to turn to for support.

Most of the symptoms we share are hidden invisible ones but they are still there.

I think we all have to continue to ask questions, to educate our support professionals and to support each other. Oh and to thank our loved ones for being so tolerant of us :D

Hang in there Boywithcap. We are all here and understand the frustration and enjoy it when others get things off their chests. It is therapy for all of us!

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Thanks everyone for the replies and suggestions. It feels so awesome to have a place where I can talk about the SAH to people who understand. Yeah Carl I wish the doctors would check this place out as well. I remember the neurologist saying that maybe one or two out of a thousand of their patients have NASAH.

I think I'll just focus on my GP being my main doctor and just let the neurologist do whatever neurologists do. I guess for some reason I thought he (the neuro) would guide me through this and have a bit more to say than the same old "you'll be fine, see you in a month." As far as whether blood was on the scan, I'm just going to try to let that go for now. Less stress, right? Anyway today's a new day and I'm just going to get this CTA done and then relax. :yesnod:

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Song for you Boy

Sweet Carolina (chaged the e to a) .. boom boom boom

Good times never felt so good...boom boom boom

I feel inclined to believe they never would ..oh noo nooo noooo

I'll give up on this song

BUT !!

Be of good cheer Boy and don't be stressed...lol xxxxx

Love

WinB143 xx

Edited by Winb143
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I agree that letting go can be key. I have a hard time doing that.

I have yet to really see any of the scans, although I may ask my doc if he can email them to me.

There was no aneursim, I imagine they dont want to commit to much about me because they don't know :lol:.

I am trying to look on the brighter side of things. Even if I can't let go I can put things on the backburner and simmer.

Today I decided to smile when people fail to believe there is anything wrong with me. I always laugh at clowns.

Less than a year ago I was in the hospital wondering if I had a future at all. Today I know I have a future and the trick is what path I take.

Boywithcap, if you feel at ease talking to your GP like I do then the GP will be one of your best allies.

Be sure to write down your questions before you talk. I tend to forget too much, I also mention BehindTheGray lots. I hope the medical community recognizes us here more and more. No one knows SAH like someone with an SAH

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I agree with what all the others have said. It is so frustrating and maddening (I just posted on another thread before this one!) that the medical community appears to know so little! I even said to my old neurologist, you would think it'd be a great learning experience to have a SAH survivor as a patient. I think my comment made him uncomfortable, because he clearly could have cared less about my "issues" after the sah.

It would be a great thing if all of our doctors, therapists, anyone who has to deal with our issues, would join in here.

Hang in there and know that we are all here for you. Come here often - it's a HUGE help and relief to know that everyone here has been there, done that and yeah - we got the Tshirt.

Please keep us posted, when you're up to it, as to how your scan went today.

Keeping you in my thoughts,

Carolyn

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The first time I was shown a scan was after my 3 month follow up MR with and without contrast the Neurosurgeon had us come into his office to show me a brain tumor they found. I was like "Really? You people are trying to kill me!" I could not even ask a question so I asked if that was a photo of his dog? We also talked sports which I brought up because I went into "shut down " mode.

Later I asked him to write down my diagnoises for me so I knew what to tell people. Then I asked the neurologist for copies of my scans.

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Boy w/cap,

I was a neurophysiologist before my SAH so I knew a little about the brain. However, I felt exactly like you at first! It really calmed me to actually see my scans (I had 5 CTs, MRI, 2 angiograms, Doppler). I looked at them for several days and read all the corresponding reports. They were so eye opening and the radiologists noted slightly different things, but they all lead to one answer...perimesencephalic Subarachnoid Hemorrhage. Once they had determined it, then they weren't interested in helping me anymore. I was also told in the intensive care unit that I'd be fine and discharged in a week. I wasn't. I ended up going to a stoke unit after 5 days and then on to an in-patient rehab facility after that. What do surgeons know? Only that we don't need their precious surgery...other than that we're on our own.

Issues of 'What Exactly Happened and will it happen again?' rear their head often at the beginning. That does abate as you get traction. Do what makes you more comfortable at the time. Maybe you need to get the scans to see if you can see the blood yourself. I can point you to where it would be if you do.

~Kris

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Today is my first day on this site. I count it a blessing from God. Tomorrow will be 1 mth since my SAH.

When it first started it was "critical" and I was sent to a big hospital's ICU. The first CT showed 2mm and blood but the next day, a new CT showed only blood. After 4 days I was sent home completely in the dark about what happened....would it happen again....and could I do anything to help or hurt myself. After a few days I was to see my GP and he was able to put me in contact with a new Neuro. He ordered the MRI and Angio. They both came back clear. So I really don't know where I'm supposed to go from here.

I do know that I have learned more in 3 hours on this site then I've been told in 4 weeks.

I praise God for this second chance at life and for a praying family.

God Bless

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I was so glad to be alive EP...and all though I could not walk..I knew in my heart I would get better.....and every week or so I look

back and see I how well I am doing..even started to argue again..lol

Chin up and things will get better

Regards

WinB143 x

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