Conflicting feedback from doctors

[RachelR]

Hi everyone. I'm new here. Thanks for providing such a wonderful forum. I realize that all medical advice has to come from my doctor, but I'm curious to see if anyone has had an experience like mine.

 

Three weeks ago, I was shopping and experienced a sudden and severe headache that began at my right temple and quickly spread over the top of the right side of my head and behind my right eye, accompanied by neck stiffness. I felt weak and nauseous and later vomited at the ER.  The ER finally did a CT and a CT-A scan about six hours after the onset of my attack.  Both came back negative. The ER doc then did a spinal tap, which revealed blood.  She told me she "let it flow" for a while and then distributed it among several vials to determine whether or not it was a traumatic tap. She felt it was not a traumatic tap, but said she wasn't sure and referred me to a larger hospital to see a specialist there.

I arrived at Larger Hospital later that night and was admitted for observation pending an MRI-MRA. The resident I saw for all of five minutes said that since they couldn't prove my spinal tap wasn't a traumatic tap, they would treat it as inconclusive. They did not repeat the procedure.  I was supposed to have the MRI-MRA first thing in the morning, but they were pushed back so that they weren't done until about 30 hours after my initial onset of symptoms.  A nurse-practitioner later advised me that they found no abnormalities in my scans and I was discharged. I asked about my original attack and what had caused it and the NP was basically like, "Beats us. Consult a neurologist."

(I was then lucky enough to develop the debilitating headaches from the spinal tap procedure and a week later had a very painful blood patch procedure done. It was so painful that the doctor could only inject half the blood and I am still experiencing minor postural headaches and neck pain.)

I made an appointment with a neurologist and began to do my own research.  I learned that CT scans are often negative for people who are anemic because any blood on the brain shows as isodense, or the same density as their brain, which often results in false-negatives.  I have been chronically anemic for the past 18 years and at a previously scheduled doctor's just days after my attack, my doctor ordered a complete blood count which confirmed I was very anemic and she ordered me iron supplements in the strength of 325mg a day. 

I also read a journal article called "The minor leak preceding subarachnoid hemorrhage" which found that people in the study who had a minor leak before a full-fledged rupture often had negative CT scans, but their lumbar punctures were all positive. The study also states that those people who have SAHs who had a warning leak beforehand face a higher mortality than people who have SAHs who didn't have a warning leak.  Other studies I read stated that a vessel could leak and then immediately seal itself, leaving me to wonder if a minor leak would then be picked up on subsequent scans. 

I saw a neurologist on Wednesday and he was very dismissive at first.  He even walked out of the room mid-sentence as I was trying to concisely relay my experience.  Then, after looking at the report for my lumbar puncture, his tune changed and he mumbled something about how I had elevated white blood cells and some other stuff I didn't catch and said that he didn't think it was a traumatic tap at all and that he felt I had experienced a "minor leak."  He referred me to a local neurosurgeon who he said specializes in SAHs.  I spoke to a clerk in their office yesterday and provided all my info and they said they would contact me to make an appointment after the doctor had the chance to view my scans and evaluate them.

I'm 38 and apart from hypothyroidism and anemia, am relatively healthy.  I do not have a history of headaches beyond the occasional sinus infection-headache or tension headache from staring at my PC too long at work. This experience was so out of the normal for me and so severe (I was literally sobbing in pain) that I can't believe it would be entirely benign. My husband tells me that if the doctors we worried, they would act faster or admit me, and that I shouldn't stress about it.  But the pain was so bad and severe that I have developed kind of PTSD wondering if it could happen again. 

Has anyone experienced a minor leak or a SAH that wasn't picked up by CT scans or an MRI-MRA, but showed positive on a lumbar puncture? Do I have cause to feel so worried since my scans all came back negative?  Thanks in advance.

[Chelle C]

Hi Rachel, Welcome to BTG, I'm sorry to hear of your experience.

 

You have come to the right place for advice and support, you will find everyone very friendly here.

 

Firstly what I would say is I had an SAH which was caused by a rupture aneurysm so I know the cause of my bleed.

I had the "Thunder Clap" headache and became unconcious.

 

However there are member's of BTG who have had NASAH which means non aneurysmal sah, they had a bleed with no cause for the bleed being found.

 

If you are really worried, which you obviously are it might be a good idea to get another doctor's opinion.

The one thing I wouldn't recommend is looking things up on the internet, you really can frighten yourself, i know because I did it myself after my SAH.

I know it's easier said than done but try not to worry, your husband is seeing what worrying is doing to you and he is obviously concerned.

 

If your symptoms persist or if any new symptoms appear then you should seek medical advice.

 

Have a good look around the site, there are lots of posts here that may help to ease your fears.

 

Keep coming back and talking and keep us informed as to how you are doing.

 

Good luck

Love

Michelle xx

 

 

 

[Susan]

Hi Rachel

 

Sorry to hear what has happened to you and all the worry it has caused.

 

I would not worry too much about the journal article you linked to - it is specifically is talking about early warning bleeds in the context of aneurysmal rupture - once an aneurysm has bled it is likely to rebleed in the next month if not dealt with. Your MRA should have indicated whether you had an aneurysm (ruptured or unruptured) and you said it came back with no abnormalities.

 

Although the diagnosis of a bleed by CT scan or MRI/MRA would become less reliable over time,  I think an MRA should be able to identify an aneurysm at any time. It may not identify all very small aneurysms but I think the resolution is usually pretty good - my 2mm unruptured aneurysm can be seen by MRA.

 

I would feel reassured that you are going to see a neurosurgeon who specialises in SAH. They will be able to advise you if any further investigation is needed. Unfortunately as your lumbar puncture was not conclusive I am guessing that you may never find out for definite whether you had a bleed or not, but they should at least be able to confirm that you have no aneurysms.

 

I hope you get to see the neurosurgeon soon.

 

As Michelle said, please seek medical advice if you have any new or worsening symptoms.

 

Best wishes

Susie x

 

[Miss W]

Hi Rachel 

 

I had the exact same, positive lumbar puncture but negative CTs. I didn't have an MRI or the scan where they send dye through your groin, because of my pregnancy (radiation risks to baby). 

 

I didn't receive any treatment, because there is no treatment for an un-identified bleed. I was discharged home and advised to rest. I was told that it was likely a venous bleed that was small and therefore didn't show up on CT. I was discharged and left very confused as to whether or not I had suffered an SAH. 

 

The wishy washy diagnosis has since worked in my favour, no driving restrictions, its not written down anywhere that it was a confirmed SAH, just suspected and then not treated for, which helps for things like insurance. 

 

After about 6 weeks, my headaches stopped and I felt much better. 

 

I will be reviewed later in the year. 

 

I hope you feel better soon. 

 

X

 

 

[YorkshireSteve]

On 3/31/2017 at 21:00, RachelR said:

Has anyone experienced a minor leak or a SAH that wasn't picked up by CT scans or an MRI-MRA, but showed positive on a lumbar puncture? Do I have cause to feel so worried since my scans all came back negative?  Thanks in advance.

Similar, I never used to get headaches ever but started getting little 'knocks' that last 20 seconds or so. I had these for three weeks until the SAH. When they scanned me they said the Aneurysm had destroyed itself and I was all clear.  

 

I doubted it and thought there was a weakness in there as I didn't like the explanation they gave me and was expecting it to 'blow' again but it never did. 6 years & 3 months on I am still here.

 

I have seen approx 7 neurologists, at best they are patronising, some are rude and all but one were pill pushers. Find the 'one' and stick to him like a limpet.

 

GL

[YorkshireSteve]

I also want to add in this topic something that I discovered recently that shook my world and it pertains to the title of the thread.

 

My latest Neurologist (by far the the rudest health professional I have ever met and due to get the sack from me) was exasperated at my questions so he pulled out the blue book.

 

The Blue book gives advice to doctors on what to do for a particular condition. He flips to post SAH advice and literally, in its entirety this is what it says....

 

Post SAH headache, more research needs to be done in this area.

 

That was ALL!

 

And they have been pushing pills and stuff on me for years, basically guessing, it was staggering.