Guest Vic Posted May 8, 2007 Share Posted May 8, 2007 Hi there everyone, I just wanted to say how great the site is,I found it a few months back and it definately helps to put ones mind at ease when you know there are others out there who also have the same weird sensations as I have!! I had my SAH in Jan 2006, in Greece of all places, I had only arrived 3 days before (my partner lives in Rhodes). They diagnosed me very quickly and I was airlifted to Athens where they coiled two of my 7 aneurysms, and did a very good job of it!! When I felt able I returned home and have since had more angios and tests. They discovered renal stenosis and an aneurysm on my renal artey, they put a stent in and coiled the aneurysm, lots more internal bling!!! My nephrologist thinks I may have something called FMD (fibro muscular displasya) which would also account for the numerous brain aneurysms. Other than some internet info no one really seems to want to give info on this. I have another appointment with my neuro surgeon in July and hopefully he will shed more light. I was just wondering if anyone else has come across this? Cheers, Vic Nice to talk to you all ! Quote Link to comment Share on other sites More sharing options...
rince Posted May 8, 2007 Share Posted May 8, 2007 Polycystic Kidney and Marfans are "common" links in multiple annies, they are also indicative that a genetic cause is more likely. I am vaguely aware of a study going on at the moment about multiple annies but I can't quite remember where! Scott Quote Link to comment Share on other sites More sharing options...
Karen Posted May 8, 2007 Share Posted May 8, 2007 Hi Vic and welcome! There seems to be quite a few people that experience a SAH whilst on holiday.... Well, you certainly sound as though you've been through the mill, how have you coped with it all? I've only seen the same as Scott, such as the link with Marfans and PKD....I'll have to look up FMD, as it's the first time that I've heard of it. Quote Link to comment Share on other sites More sharing options...
Slim Posted May 8, 2007 Share Posted May 8, 2007 Marfans isn't that double jointedness, I've just had a thought I think my great granda was double jointed. Must ask when I'm home. Quote Link to comment Share on other sites More sharing options...
Annie Posted May 9, 2007 Share Posted May 9, 2007 Wecome Vic! Sorry about your holiday. I loved the term "intrernal bling"! xo, Annie Quote Link to comment Share on other sites More sharing options...
Louise Posted May 9, 2007 Share Posted May 9, 2007 Hi there And welcome. Louise. Quote Link to comment Share on other sites More sharing options...
Skippy Posted May 9, 2007 Share Posted May 9, 2007 Hey Vic Blimey - you don't do things by halfs do you Think we shuld nick name you Mr T or P Diddy with all that bling Glad that you're making good progress though. Sami xxx Quote Link to comment Share on other sites More sharing options...
Guest Vic Posted May 13, 2007 Share Posted May 13, 2007 Hi Karen,(and everyone else) and thanks for the welcome. I've heard the marfan's thing too and I think FMD is also connected to that.?! I do actually have a few Marfans traits, such as being quite bendy! and FMD is supposed to be something about arterial cells not growing right so the artery wall's are weak. I suppose I'll get more info bit by bit. Scott, if you remember where you heard about that study i'd like to know more. As for having coped the past 16 months, I think I have been very lucky compared to some of you guys. I had suffered all my life with regular Migraines but since my SAH (apart from the first few weeks) I have not had one headache!!? So I am actually more free than I was, I can actually have a drink without spending the next 24 hrs in bed with a blinding headache! My neuro surgeon in Greece actually said that it was not my first SAH, Once I had learnt a bit more about them I then remembered that about 4 years ago, when I had the worst head ever and spent a week in bed with pain killers, it was in fact a bleed. I was so used to terrible headaches that I didn't even go to the Doc! And I wouldn't have this time either if I hadn't passed out and had short term paralysis! The tiredness still gets me and I am on quite strong hypertension pills as they want to keep my BP as low as poss, so I get lots of dizzy spells too and feel spaced out alot. Does everyone else get weird head sensations too, like twinges and numb patches and quick sharp pains? I get these a lot. They used to panic me a bit but I'm getting used to them now! I am lucky to have very supportive parents and a partner (although he lives in Greece), and they have looked after me well and helped loads. The only thing I don't look forward to is the regular scans and angios as they have decided to leave the other 5 aneuyrsms alone for now. Thankfully though, life goes on!!! love Vic x Quote Link to comment Share on other sites More sharing options...
Karen Posted May 13, 2007 Share Posted May 13, 2007 Hi Vic, My bleed history is similar to yours in that I had a probable warning bleed 4 years prior to this SAH ..... I also suffered from migraines for years. I've only had two migraines since the SAH and they were early on in my recovery. Dizziness has been one of the worse things to contend with and at points it drives me nuts. If I was dizzy free, then life would be pretty hunky dory or as much as it could be post SAH. I also get the weird head pains ... I often get a pulsing feeling, like a heartbeat especially if I'm feeling stressed and I can often feel a tightness around the aneurysm area. You do sort of get used to them.....at first I kept thinking that this was it again and I was going to experience another SAH, but as time has passed, I don't feel quite so panicky.....but yes, definetly more sensations in my head. Joan on this site also suffers with Marfans, so I would imagine that she'll find your post very interesting. Can I ask how old you are? Quote Link to comment Share on other sites More sharing options...
bogbrush Posted May 13, 2007 Share Posted May 13, 2007 Hi Vic. My headaches stopped completely at about 6 months post SAH, but the last couple of days, I've been feeling some strange twinges and pains in my head which are very reminiscent of the early days of my recovery. I haven't had any pain killers now for about 2 months, but I'm already on my second lot today. Regards Keith Quote Link to comment Share on other sites More sharing options...
Skippy Posted May 14, 2007 Share Posted May 14, 2007 Hi there Yep - I'm nine months post SAH and I get a regular tightening sensations around the anuerysm site, twinges and stabbing pains also - I tend to get the vice like gripping sensation at the back of the head too - which I believe is something to do with the fluid going into the spinal column and the fact that there may still be some of the blood clot left and gradually dispersing. I certainly don't have to take as many pain killers as I did three months ago and I never suffered from migraines before this - however headaches have the been the one thing that I have always hated - would prefer to stub my toe everyday than have a headache!!! Sami xxx Quote Link to comment Share on other sites More sharing options...
bogbrush Posted May 14, 2007 Share Posted May 14, 2007 Hi Talking of stubbbing toes ... It reminds me of when I was in hospital about 13 years ago following an appendectomy. There were 2 other guys on my ward and we used to have a right laugh together. One guy had had a bike accident and had several broken ribs. The other guy had had a toe amputated and one day he stubbed the bandaged stub (?) of his toe on his bed and was hopping around in great pain. Me and the other guy were in stitches and also ended up in great pain ... talk about "only when I laugh" :lol: Regards Keith Quote Link to comment Share on other sites More sharing options...
Slim Posted May 14, 2007 Share Posted May 14, 2007 hi Viv I somehow have missed your first post and focused on the Marfans. Good to hear from you and welcome to the site. Aine Quote Link to comment Share on other sites More sharing options...
Guest Firefly Posted May 14, 2007 Share Posted May 14, 2007 Nice to meet you! I am sorry you are having to go through all of this! sounds like you have been through so much! I can't believe you have 7, how big are they? Are there any plans to repair the rest? I only had one 4mm one. Where are they located?? How old are you hun? Hope you don't mind the questions?? I am Tricia, I was 45 when I had my rupture. My hubby, Bernie & I just celebrated our 20th Wedding Ann. in April. I am a "recovering" Firefighter. He has been a firefighter since he was 14 and he is a full time EMT. He has taken very good care of me!! I had a rupture with no warnings 7/29/05 with complications, long story. I still suffer from balance, perception and processing skills, memory, insomnia, fatigue, severe headaches and light sensitivity... I also get sharp pains where the stent and coils are. and I think the atrery they used to get to it? My Annie is next to my left optical artery, so I have temple pains and my left eye hurts bad! Blurred vision and dizziness...from my rupture and a blood clot but, I am getting better in time. the brain takes a long time to heal sometimes!! I also have Fibromyalgia too, doesn't help. I know everyone is different. ***You need to make a list of questions to take to your Dr.!! Ask him for copies of your reports, take notes on his answers!! It is always good to have someone go with you in the room to take notes for you. Bernie or my sister have taken me to every appointment and ask questons about things I don't even realize is a issue? Have him explain everthing to you!! It is your body, your life and he is working for you!! As far as any new symptoms, pains... They should be reported to your NS immediately or go to the ER!! If you get a stiff neck, nausia or vomiting, dizziness or vitigo, sever headache, long lasting head pains or headaches, slurred speech or coordination problems, you should go to the hospital. that is the sign of a leak, bleed or rupture. It is better to be safe than sorry!! I know from experiance, I am lucky to still be here due to lack of diagnosis and immiediate treatment!! ***You know your body and if something is wrong!! You have to be an advocate for your own health care! Please keep us posted, I will be keeping you in my prayers!! Tricia Quote Link to comment Share on other sites More sharing options...
Guest Vic Posted May 14, 2007 Share Posted May 14, 2007 Hi guys, hope this finds you all fine and dandy, and I hope that headache has eased off Keith. In answer to you Karen I will be 37 in August, and in answer to Trish, how big they are, well I have been told 3 medium sized ones and 2 small, as for actual dimensions I have no idea and as to where, I know that one is somewhere behind and above my left eye the other is classed as extracranial and is somewhere near the spinal column and is boat shaped? the others I'm not sure. The two that have been embolised are where the main artery forks and are on the left side. I feel silly not really knowing but the problem I had is that the Greek surgeons, although very good, didn't explain anything to me. They did to my parents and partner who were so stressed at the time they didn't take it in. Plus it was all in Greek!!! When I got here I was assigned a neuro surgeon (can you believe it he's Greek! Mr Papadopoulos!) who told me that this was neuro radiology and not his department, unfortunately radiology doesn't do outpatients so I see him if I need to. After my angio he said that radiology told him they were leaving them for now due to size and location, that was it. His actual words were " If I treated them the chances of me killing or paralysing you is there and I don't want to be sued, not that I'm a bad surgeon, you may be fine and not have to see me again, of course you could also have an emergency which could also kill or paralyse you" Go figure.....? I was so taken back by his blunt statement I sort of forgot everything else that I wanted to know! He also said that after the next angio/MRA they would just send the results unless there was an issue, so I would not necessarily have to see him. He also asked me which ones had been embolised? I got the impression he hadn't even looked at the scans. I am expecting the next scans in October but have recently recieved an outpatients appointment with him for July. I'm a bit confused about this so we shall see what he wants and this time I will be ready for him and try not to feel too intimidated!!!! I wonder if it's because the treatment wasn't there so they're not really into my case? Is anyone else a patient at Atkinson Morley /St Georges Hospital in South London? Take it easy for now Vic xxxxxxxxx Quote Link to comment Share on other sites More sharing options...
Guest goldie Posted May 22, 2007 Share Posted May 22, 2007 Hi Vic, welcome to the site...that was cute..."internal bling"....I'm like you....My doctor said they put platinum in my head..too bad it's not on my finger instead...lolol.. ... That would be scary having all this happen to you while on vacation...it's bad enough when you are at home in familiar surroundings, but, it had to be really tough being far from home...Good luck with everything....hope you are doing fine...take good care Cindy Quote Link to comment Share on other sites More sharing options...
Louise Posted May 22, 2007 Share Posted May 22, 2007 Hey there I have platinum too, which I didnt find out till way down the line. Take care Louise.x Quote Link to comment Share on other sites More sharing options...
Guest Firefly Posted June 1, 2007 Share Posted June 1, 2007 I am so sorry hun! You shoud not be treated like that!! I swear , Dr's really p*** me off sometimes!!! I saw 3 ER Dr's and 3 other's including a Neorosurgeon who treated me like , he told me I needed glasses for the blurred vision??? Or treated me like a druggy looking for drugs?? It was rediculous!! I called the Ins. co. and told them I wanted to find my own Neuro!!! They helped me promply, the whole time I had a rupture??? If I had not insisted on changing Dr's, I prob. wouldn't be here!! I suggest you get a second opinion!! Find one who specializes in "Annie's' and treats you with respect. My NS was appauled at the lack of treatment when I went to the ER 3 times... See if any of the hospitals around you have a "New Brain Wing", we just got one her in St. Louis Mo. at St. Louis University hopsital. Sounds awesome!! I will go there if I ever have to go again! I am pretty sure my surgeon is on staff there too! See if there is a hosp. that at least have surgeons who specialize in cases like yours? I knew every detail of mine the first visit with him. He even gave me a copy of the angiogram report. Mine was a 4mm after rupture behind my left eye, next to my optical artery. Don't let the Dr's intemmidate you! It is your body! Make a list of questions before your next appt., it is good to have someone go with you to the appt's and take notes... I hope you consider getting another Dr.!!! Dealing with the medical field can be sooo frustrating!!!! I have had a lot of surgeries and have learned the hard way that you have to take charge and be an advocate for yourself sometimes!! Don't be afraid to let a Dr. know if they say something inappropriate or won't answer questons!! This is your brain and your life, not his!! This is all so much to deal with by itself, without Dr's BULL!!! Please think about it hun! Just take it very easy and see if you can find another surgeon?? ( for your own safety and piece of mind!! ) I will be keeping you in my prayers!! Hope you find out something soon! Tricia Quote Link to comment Share on other sites More sharing options...
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