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Has anyone had any major surgery since their P-SAH? I was told by 3 doctors that it was not safe for me to have major surgery but today a 4th doctor informs me I need my entire spine FUSED. Apparently, unless the neurosurgeon says the risk is too great, it needs to be done asap! I knew I was in pain but wow..... bone loss, missing disks, spinal cord compression, etc.  They need to fuse from the middle down to the butt.  :shock:

 

I'm slightly afraid of my brain. I was told because I didn't need intervention to stop the bleeding and because they don't know why it bled, that created a risk of it happening again. It was explained like a garden hose that springs a leak. You can patch it (the brain clots and it seals naturally) but it will always have a weak spot in that exact spot thereby increasing the risk of it bleeding again. It sounds reasonable but is it? 

 

The surgeon who said do the surgery said the risk analysis is to weigh my quality of life unable to walk and being a mom to a special needs very young child to a strong risk of a recurrent brain bleed during surgery. He literally said I needed to decide if the pain and suffering was worth the risk of dying. He felt it was worth the risk. 

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I was never told no major surgery however I had mine clipped xxx

In saying that though I always heard if you had a bleed that had resealed itself the risk of a rebleed was very slim xxx

Sorry you are in this situation but I would see a neurosurgeon and see what he/she says actually I would see three or four and listen to what they all say that way then maybe you could go with what the majority said xxx

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Hi,

 

I would say go and get a second opinion from someone with knowledge in that field of medicine.  Then get a third if necessary.  It is an important decision, not just for you but for your little one and other members of your family too.

 

Good luck

 

Macca

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My brother has a clip from a ruptured aneurysm. The neurosurgeon who performed his surgery is the first doctor to tell me he would be worried. I sort of dismissed him as it was in a social situation as we run in the same local social circle. Then my neurologist whose been following me told me no general anesthesia but that was the first year after the SAH. Recently, two orthopedic surgeons and anesthesiologist told me they would not touch me with a 10 foot pole. Perhaps the fear of lawsuits is too great in the USA.

 

Well this current doctor was a very well known and respected doctor for whom I have waited a long time to see. I asked him if the brain thing scared him off doing a 5-6 hour surgery on me, and he said every surgery scares him. Mine would be challenging but as long as the neurosurgeon who would assist him clears my brain and a cardiologist, pulmonologist and primary care doctor all clear me, he feels it is the only option to prevent my ending up in a wheelchair or bed ridden in the future. He said he would have a neuro team scrubbed in the OR and waiting just in case they need to "crack your skull open". (His words.)  

 

Here I thought that SAH was the worst thing that could happen to me, I was wrong! LOL That was easy because I had no idea what was happening and I fell unconsciencious so I slept through the scary stuff!  ;)  :crazy:

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No tact some people Susan,

 

I guess because they do it every day it becomes matter of fact to them.

 

My Hubby was in doubt when I had my shunt put in but the Nuero surgeon said if it was my wife I'd have it done, as hubs was about to cancel it.  Whatever decision you make I wish you well.

 

I had a Nurse who said to me "I'll make sure they keep you okay and I'll be here when you wake up "  as I had to take my cross off and was worried as I needed all the help I could get.    How did I thank her,  I sang to her lol xx 

 

Good  Luck and keep talking about it ask questions etc xx

 

Win xx xx

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I've had a thumb fused under general anaesthetic since my SAH and it took about 4 hours, but I had my aneurysms coiled.  Take Macca's advice and get numerous opinions if necessary.  Not a decision to be made lightly.

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Hi Susan,

 

I had my bleed last January and since then I have had an EVD fitted and then a shunt. As a result of the bleed I have developed spinal adhesions and cysts of CSF on my spinal cord. I have also been told that I will have to have surgery to try and limit the impact of this and to try and stop me ending up being unable to walk.

 

As other people have said - it is not a decision to be taken lightly. The spinal surgeon told me that in an ideal world I would not be having more surgery with everything wrong with me (I also have a congenial heart defect on top of the bleed and hydrocephalus) however that this was probably my only chance to be stabilised and if I don't have it done I will always run the risk of the cysts bursting and me being unable to walk.

 

As others have suggested on here it might be worth seeking a second opinion and speaking to the surgeon about any concerns you have. I imagine that they will monitor you very closely due to your medical history, which in an odd way might actually make the surgery less risky.  

 

Good luck with everything.

Gemma x

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Hi Susan, I had major surgery some four months after my SAH when I had to have my shunt put in. I suppose the fact that I was having brain surgery anyway made me less concerned about bleeds, they scared me with all the possible side effects but I can't tell you I wasn't scared, I was but I was more scared of never feeling any better and I had little choice to be honest, I had to elect to have it.

So it sounds like you have a sensible and fab neurosurgeon and as everyone has said, make sure you are well informed and make sure you keep that water topped up after the general as I think getting over that takes time too.

Gemma, I hope you are doing ok too.

Good luck, keep us posted both of you.

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No tact some people Susan,

 

I guess because they do it every day it becomes matter of fact to them.

 

My Hubby was in doubt when I had my shunt put in but the Nuero surgeon said if it was my wife I'd have it done, as hubs was about to cancel it.  Whatever decision you make I wish you well.

 

I had a Nurse who said to me "I'll make sure they keep you okay and I'll be here when you wake up "  as I had to take my cross off and was worried as I needed all the help I could get.    How did I thank her,  I sang to her lol xx 

 

Good  Luck and keep talking about it ask questions

 

Win xx xx

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