Complicated SAH

[Lori D]

Hello, 

I have posted here before, when it was pretty soon after my SAH. It has been a little over a year since my SAH. I have had a remarkable recovery, went back to work full time, and I'm starting to wean off of verapamil. My only lingering issues are overstimulation/hard to focus, and I have a hard time understanding people if they are soft spoken, speak really fast, or have accents.  I'm extremely grateful for this, but a part of me is also extremely frustrated, because we are having a hard time figuring out my case still. 

 

I had a baby, and two days later (literally within 30 minutes of coming home from hospital) I had a thunderclap headache, felt the pop, and felt warm liquid go down the back of my neck. Then my neck got stiff, and I started to vomit. After calling the hospital back and forth (thinking this was a spinal headache from my epidural) we decided to go to the ER. They did a CT, and said that they believed I had a MASSIVE aneurysm. In ICU for a while, then I had bilateral ischemic strokes. My only symptom was loss of hearing, a very strange symptom. This lengthens my stay, but I recover well. 

 

Now, I have had 4 or 5 angiograms, and they haven't been able to find any aneurysm. 

 

Basically my husband and my brother in law took it upon themselves to do a ton of research while I was in the ICU trying to figure this out. They found information on RCVS caused by the postpartum period of pregnancy, and my neurologist chalked it up to that, even though it didn't quite fit everything.

 

So after I got home from the hospital, I was pretty devastated thinking that I couldn't have any more children (especially since I had basically missed the first 5 weeks of my sons life) but I was also terrified of having more children as well. I took an entire year of doing a huge amount of research on RCVS/Postpartum Cerebral Angiopathy, going back and forth with my neurologist (who I like and trust). Fast forward, and he basically said that he thought it was fine for me to have another kid, "because this is so rare." Well, honestly that's not really a good enough reason, because it has recurred before. 

 

So I seek a second opinion at U of M. The first thing this Dr.  says "this doesn't look like RCVS at all, too large of a bleed, and the wrong location." But basically says that the bleed also looks way too large to not be able to find an aneurysm. He doubts that a small aneurysm did this. He wants to do an MRI on my neck, to see if there are any malformations or issues there. 

 

I apologize for writing a novel, I'm just extremely passionate about this. I guess what I'm wondering - has anyone had a large bleed and not be able to find the source? Has anyone had any form of bleeds come from the neck? 

 

Thank you, 
Lori 

[ClareM]

Hi Lori

 

I too had a non-anuerysmal bleed and have been told it was large. I asked where my bleed was and was told by the nurse specialist the following;

 

The blood from your haemorrhage was located in the sylvian fissures, basal cisterns and extending down the brain stem into the foramen magnum. There was also some intraventricular blood in the III ventricle and occipital horns.

 

My haemorrhage was extensive and caused me to have hydrocephalus for which I needed an extra ventricular drain for 8 days. No cause was ever found despite 2 angiograms and an extensive MRI.

 

Fortunately my child bearing days are over so I do not have the dilemma over getting pregnant, I think you can only take medical advice on that. I think you need to have this new MRI to see if they can shed anymore light on what caused your bleed.

 

Unfortunately I think it is fairly common in non aneurysmal bleeds that no cause is ever found - despite us all wishing otherwise as it would answer the unknown.

 

Good luck keep us posted 

 

Clare xx

[frmertd]

it sounds like they are doing a VERY thorough job, especially your second doc. Do understand that bleeds can be either 1)arterial (larger, higher death rate) or 2)venous (slower, but still very serious.) An angiogram only finds ARTERIAL aneurisms, not venous.

 

If "no aneurism found" that means it was a venous rupture of the blood vessel causing the bleed. Your first doc feels that your bleed was venous. Your second doc is concerned it may have been arterial due to the large volumes of blood.

 

My advice: do whatever your doc says, they seem very thorough to me. Getting a 2nd opinion is always good. Get hypertension treated well.

Good luck.

[Gemma B-B]

Hi Lori,

 

Your thread title caught my eye and I thought I ought to reply as 'complicated SAH' essentially sums up my experience. 

In a nutshell - I was 27 when I had my bleed. I had been diagnosed with a congenital heart defect 6 months prior, which I had had since birth but had not been picked up. I had my bleed during the surgery to place a stent in my aorta as part of my heart defect was that this was narrowed and I was in heart failure. I was taking blood thinners and ended up in a coma from the bleed.

 

My neurosurgeon (I was treated at the National Hospital for Neurology and Neurosurgery in London) has told me that mine is one of the biggest bleeds they have ever seen - they did not expect me to survive the initial surgery or the night. My family were called down from Derbyshire to say goodbye to me.

 

The team at the hospital also assumed it was an aneurysm, especially as people with CHD tend to also have cerebral aneurysms and it was such a big bleed. Ironically enough I do have a cerebral aneurysm, but it was not that which bled, but another source. They have eventually found the source - the bleed came from in my ventricles.

 

They originally classified it as a grade 4/5 but have now said it was a grade 5. I got hydrocephalus as a result of the bleed and required a shunt. The bleed also spread down my spine and caused arachnoiditis and arachnoid cysts, which I have left me using a wheelchair, although I can walk short distances with a stick.

 

Like you I have had extensive follow up and testing. I have seen more than one consultant and also a range of other specialists including a genetic specialist. This is because of the size of my bleed and the fact that 'they have never met another human with all these things wrong with them'. Hence seeing the genetic specialist - they wanted to see if there was a genetic link between my heart condition, the bleed and the arachnoid cysts.

 

The upshot of all of this is that they could not find a cause. Their best theory is that I had high blood pressure for a number of years due to my heart condition which weakened blood vessels. I then had the stent fitted which made the blood vessel burst and bleed out. The other reason for all of the testing was because I will need more surgery in the future and they wanted to see what could be done to limit the risk of another bleed. My cardiology team did consider more surgery to widen my aortic stent as it is wasted, but have decided not to due to the risks at the moment. 

 

In terms of you and children. Obviously, I was relatively young when I had my bleed. I had been married for around 6 months and my husband and I wanted to have children. We knew this might be tricky due to the heart condition, but people with CHD do have children. Due to my further complications, especially the spine damage, I have actually been medically advised to never have children.

 

It is on my medical records and they had a meeting with myself and my husband to ensure we understood the risks and to tell us that if we proceeded to go ahead and have children I would be doing it against medical advice and at my own risk. I would think that if your consultant has told you that you are OK to have anther child that they must think the risk is quite small, but I think you are wise to get a second opinion and explore it further. 

 

Which brings us on to my final point. I think it is worth going with your second consultants idea to explore the neck region etc. just to rule it out. If you and your husband wish to have a second child then I would explore risk minimisation with your team. If I had been able to have children then the standard practice would have involved me being admitted into hospital early and then having a C section at around 37 weeks.

 

You could discuss ways with your team of how to limit the strain on your body both during pregnancy and also during the birth as well. Exploring exactly how the pregnancy and birth might look might help you both make a decision about if you wish to proceed with a second pregnancy or not. 

 

I hope this essay has been of some use to you. I think most large bleeds are from aneurysms, but I am living proof that you can have a huge bleed and it not be from that. It is more unusual, but does happen. As Clare has said above, I think it can be quite tricky when that is the case - with an aneurysm you have it clipped or coiled and then monitored so you know exactly how it is doing. Without that there is no way of monitoring, which can lead to more anxiety and uncertainty about it happening again.

 

I wish you luck in trying to find a cause and making your decision. 

 

Gemma

[frmertd]

Very interesting story! i really appreciated that. Best of luck. 

[Lori D]

I just want to thank everyone for responding to my message. For whatever reason, I never received notification of your thoughtful responses, and I am just reading them now. I even tried logging in and finding responses, but never saw them. Just recently (as I am still thinking about my case) I found them on accident while trying to research pregnancy and SAH to see if there had been any new information. I feel terrible for just now responding. 

 

To provide an update since last year: I had the additional angiogram at U of M, which came back negative for aneurysm, dural fistula, and any spinal malformations as well. They, too were stumped. He basically said that I either had an atypical case of RCVS, or an atypical perimesencephalic hemorrhage. I felt like he did an excellent job and felt that I could trust him, but because this occurred after pregnancy, I wanted to speak to a women’s vascular neurologist.

 

So I recently went to Northwestern’s Women’s hospital in Chicago. She also said my bleed was too large to be considered a normal perimesencephalic, but that in her professional opinion it was in no way RCVS, because I lacked narrowing on my initial CT angiogram, and the location did not fit. She said that she could not give me an exact diagnosis, but that she believed I had a very large perimesencephalic hemorrhage that could have been larger due to more blood in the body from pregnancy.  Her opinion that recurrence was quite low, and that if she had to put a number on it, it would be less than 5%. 5% still feels high to me. 

 

So. I’ve learned a LOT (most drs have joked that I know more about RVCS than most neurologists lol) , but I’m sort of back at square one of having to make a very difficult decision, which I know most people think I’m insane for even considering. I know I should just be thankful for being alive (I am) but this still weighs on me daily. 

 

Thank you for your responses, I truly appreciate people taking the time to read my ridiculously long posts, and commenting!