Still in Hosptial

[hstupno]

Hi All,

I suffered a brain aneurysm exactly two weeks ago and had 16 coils inserted. I was VERY lucky to have only a small amount of bleeding. Certainly didn't ease the pain, discomfort and fear I have felt. I had one more set of TCDs done today and hopefully, if everything looks good, I'll get to go home on Monday. It has been 14 days...I'm READY!

I'm so glad I found this site. I'm going through some emotions and issues that may be helpful to discuss with those of you who have gone through it. I've seen the awaful side of these things during my stay in the hospital and truly know how blessed I am. Life really is prescious and should be LIVED.

I just know it's going to be a huge adjustment when I get home to not rush back into things and hopefully with some outside help and this board, you'll be able to offer me some comfort.

Thank you,
Heidi

[Suzanne*Canada]

WOW you sound absolutely wonderful for it only being two weeks! Welcome to the site, sorry you have to be here but it is true that talking to others who understand will help greatly in your recovery. The journey has just begun for you and it can sometimes be a long and hard road, but you sound amazingly well, CONGRATS!

Hope to hear more from you soon, keep in touch and let us know how you are doing!

hugs
Suzanne

[FireflyR7]

:D Congratulations on coming home & being a survior!! I am Tricia, I had a rupture June 05. You will go through a lot of emotions and feelings now!! It is not easy, but we are all here for you!! This is definately a learning experiance and a tough one sometimes!! We will all be keeping you in our prayers!!! Everyone is different and yet so much the same?? Please try to have patience and take it very slowly!! Your brain takes a long time to heal and when you over do things you will pay for it later! You will have to learn to listen to your body! I know fear is a big problem for most of us in the begining!! I remember some of us talking about carrying a phone everywhere we go... You just have to focus on taking your time to heal, eating well & drink a lot of water!!!! Your body needs as much water as you can drink! Try to eat blueberries and dark fruits & veggies!! Brain food!! I am addicted to ice cream though!!! You might even have a changes in taste, vision... I have a lot of changes since I had a rupture that wasn't fixed right away, long story! Anyway, I have a lengthy recovery!! :p I am a bad case senario though! You sound like you are already doing well!!! :D We will be here to anwer questions and be there for you to cry to... We understand what you are going through!! Take care and you will be in my prayers!! Firefly / Tricia :cool:

[Kathie]

Hello Heidi, Congratulations on your survival.
Two weeks isn't very long. I know you feel well enough to go home, but slow down a little. I was in hospital a little over three weeks and although I desperately wanted out, when I finally did get to go home all I did was sleep anyway. It takes the brain an awful long time to heal, (years for some), so give yourself time. There are no prizes for the quickest recovery. You'll be better off for it later.
Yes, you are indeed blessed, so the last thing you need right now is a set back.
Take it easy.

[snapdragon]

Heidi, Congratulations hun you have been through alot and it is true you are lucky. You sound very good for it being only 2 weeks ,& wise to know you will need help & support to help with your recovery, it is a long road and if I can help in any way please let me know . It has been 6 yrs now for me so I have been through a lot and wish I had had some support when I was going through it . God Bless (((HUGS)))Snap

[nicd]

Heidi, congratulations on doing so well just take your time and rest when you can. I was in the hospital for 3 weeks after my rupture in April 2006 and just returned to work in September. Still get headaches, confusion and short term memory loss but feel wonderful otherwise. I too had coiling in both my aneurysms on my brain stem. Congratulations again!!!!!!

[hstupno]

Thanks all. I'm glad I have this as a resource to go to as well. Thankfully, AGAIN, my TCDs came back good yesterday so I'm now off epidmin (?), but still on one other IV and no word on when I'll get home. I know I have to be patient, but boy, it's hard. I want my own bed, my kitties and my boyfriend. Just sleeping more than 5 hours would be wonderful! Hospitals, although great for round the clock care, certainly aren't condusive to REST.

I do will have another post about an issue I had in ICU, but I'll start a new thread on that one.

Thank you again. it's nice to be able to speak to someone about what we're going through.

Heidi

[FireflyR7]

;) Just a little longer & you will be home! Better to stay and get the care you need! I hope you keep improving and get to come home soon! Just try to rest and take it slow. I will keep you in my prayers! Keep us posted!! Tricia :cool:

[gafey]

Hi Heidi,

Take it easy when you get home. I found I had a lot of fatique just doing simple things like reading of watching tv - too much stimulus for the brain. Listen to your body when that happens - rest, rest and more rest. It's been 10 months since my rupture and I still get vertigo and fatique, but I'll take those because I'm still HERE!

Godbless on your recovery, we're all here for you!

Maria (Gafey)

[annie2105]

:) Heidi,
We are all here for you! It is certainly a long road of recovery so just take things slow. Don't overdo it or you WILL pay. Getting out of the hospital is exciting but enjoy being waited on hand and foot while you are there:) Blessings on your recovery, we look forward to hearing from you when you are safely back at home!
Lisa

[hstupno]

Thank you all for your words of encouragement. I'm still undergoing doppler scans, but they have removed all my IVs, so that's a great sign. Dr. said possibly Thurday I'll go home. I hope so! I know having everyone waiting on me hand and foot has spoiled me and I'll try to do too much when i get home, but I'm already noticing the signs of doing too much just here in the hospital when i've walked too much, so I'll need to recognize the signs.

Again, I know my home coming will be very emotional. I don't think I have really allowed myself to comprehend how lucky I have been to survive this with all my faculties in tact. I think once I'm home I'll allow myself to let it all out. I may rely on you all heavily for support then.

Thanks again,
Heidi

[joannef]

Heidi,
I just caught up with this thread. I'm thrilled to hear you're from Maine! Although I'm from Pennsylvania, I was in Maine when I ruptured and was coiled there and spent 3 weeks in Maine Med. They all took great care of me there, and in a way I was sorry to leave. They were all so nice.

Are you in Maine Med? Did you have Dr. Kwan? Or Dr. Florman? Or Dr. Walsh? I've only met one other person who was treated at Maine Med.

Congrats on your quick recovery. Please do take it easy when you get home and let other people wait on you for a while at least. Walk a little bit farther every day and get back in shape. Lying around in a hosp bed made my leg muscles turn to jelly. And I know what you mean about sleeping. You'll sleep so much better when you're in your own bed, and without the lights and nurses' talking, etc.

Keep us posted!
Hugs,
Joanne

[hstupno]

Yes, I had Dr. Kwan do the coiling. Again, I was VERY lucky there wasn't a lot of bleeding, but it was still a tricky surgery. They said it was in a bad spot and about 10mm annie in my left internal carotid artery. Took 16 coils. I love Dr. Kwan...very easy to talk to and down-to-earth. The rest of the neurology team is terrific too and are taking great care of me. I can't say enough about the nursing staff here. Everyone from ICU to the special care ward and now in the semi-private rooms.

I've had three roommates and it has been tough seeing them all leave before me, but hopefully by this time Thursday, I'll be home in my own bed.

Heidi

[joannef]

Heidi! You had Dr. Kwan! That's fantastic! I love the man. And he's a genius when it comes to coiling. Say hi to him for me (Joanne from PA -- he might remember - he never heard of the BAF until I told him about it!). I don't see him again until August 2007 for my 2-yr follow-up angio. I expect the coils will still be in perfect shape then, as they were on my last angio. Not compacted at all. He really knows how to do a coiling!

As for nurses, some of them have left Maine Med since I was there, but there are probably still some there who took care of me. When you were in SKU3, did you have Heather, Courtenay, Mark or Dana? When you were in 608, did you have a nurse named London? Her name's unusual enough. How about Rachel, Sue or Kathryn? Can't remember all their names now. If you see any of them, please say hi for me. They may remember Joanne from PA who was on vacation when she ruptured.

And if you'd like to talk further, you can always send me a private message. Just click on my name and look for "send a private message to..." Good luck Heidi!

Hugs,
Joanne

[FireflyR7]

;) I hope you get to come home thursday!!! Please call family and friends to take care of you for a while!! Having a bleed, you are going to have a little more brain swelling... We will be here when it sinks in, to support you!! You will get very emotional but crying makes it so much worst!!! :o Try to have something you can do to help you take your mind off of things, something you enjoy!! I write poetry & songs. I have a few people that I could call if I started to cry, so I wouldn't get the worst after headache!!! We all know how you feel and we have all had the emotional strain that comes with this! It is normal for a brain injury! You will prob. be very angry sometimes & change emotions all through the day sometimes, but it is normal!! A brain injury can really play little tricks on you! :p I hope you will get the book I suggested!
Just try to have as big of a support group as you can when you get home! You will need some tender loving care! Take it very easy, sleep as much as you can and try not to get upset as hard as that will be sometimes!! You are a survior and we will be here to get you through it!! Don't be afraid to talk to us about anything!! We have all shared our worst feelings and ask all the questions too! This is such a good place for support! So is BrainPeople!!! This is going to tak e a while to heal so please don't be in a hurry!! And don't lift or bend over for a while!!! Take it slow & easy, don't want that artery thumping too hard for a while. We will tell you all the things that the Dr's don't know or tell you about the long term recovery. Most of the Dr's just truly don't know what we experiance after surgery. The brain can't be predicted, so don't be afraid to call them if you feel you need to ask questions... I had my NS cell phone & home numbers. He was awesome!! I am glad to hear you are doing so well and may be getting out!! Let everyone pamper you!!!! Drink a LOT of water!!!! :p Keep us posted & I will keep you in my prayers!! Tricia :cool:

[JulieNH]

I, too, am a member of the Dr. Kwan Appreciation Club. I had a ruptured aneurysm in the same location as Heidi's which Dr. Kwan fixed on June 30th 2006 after a week of bleeding. The actual burst happened at Shaws supermarket on the 23rd of June. I just wanted to go to where it was quiet and dark, so I refused my husband's repeated offers of the Emergency room all weekend long. Finally, I went to my Dr.'s office on Monday morning and was told by his replacement (my Dr. was on vacation) that of course I didn't have an aneurysm because if I did, I'd be dead by now. He sent me home, told me I had a migraine and to take some asprin (amazing I didn't bleed to death!). Two days later I went to the local emergency room in horrendous pain! Following a CT scan I was put in an ambulance for Portsmouth Hospital. Luckly, Dr. Miller was there and after two more CT scans he told me I was a perfect candidate for coiling instead of going through the trauma of a craniotomy. He tried for 2 days to get me into a specialist in either Boston, Hanover NH or Portland ME. The problem was that it was 4th of July weekend, so all the hospitals were short handed and the first week in July all the interns and residents turn over at the teaching hospitals (not the best time to be sick!). Dr. Miller finally spoke with Dr. Kwan and I was transfered to Portland's Maine Med. Dr. Kwan did the operation as soon as I arrived by ambulance. He was wonderful! Not that I remember that much of meeting him, but afterward, he was great. I too had wonderful treatment in ICU for 15 days. The nurses were FANTASTIC! PROFESSIONAL! and TRULY CARING! I have nothing but the best to say about my stay at Maine Med. I had one night out of ICU in a regular room and then I was discharged. Perhaps my only complaint is that I wasn't given any discharge information except not to get constipated, not to lift anything heavy, and to take those pills every 4 hours. No one told me what to expect or how to get therapy if I needed it, which I did.

So Heidi, take it easy! Rest as much as you need to. Don't push yourself for awhile and be prepared for some mixed emotions. I am 46 years old, in very good health and before the aneurysm I was not terribly emotional. I found I had a bout of depression, which has since eased, but I would cry at the drop of a hat. My headaches are still terrible. One of the ramifications of this aneurysm is that I now have dificulty doing math and my skills have slowed down. I had a stroke while Dr. Kwan was coiling my aneurysm so I lost that part of my brain. I didn't know that I had a stoke until after my follow-up MRI/MRA. I also have short-term memory problems, but that seems to be getting better.

I have to go back in Jan. '07 for an angiogram, which I am dreading. I'm probably just making myself nervous, but I'm afraid of having another stroke. I was wondering if I can be out cold for it or if I have to be awake. I had 2 angiograms before my coiling, but I don't remember them at all. I must have been either on morphine or under anesthesia. I wonder if I will feel the catheter? One of the interesting things I have found out since my aneurysm, SAH, lots of vasospasms, and stroke is the reason I lived was probably because my blood pressure was so low before I had all this, and it still is for that matter. I would be interested to know if other survivors also have low blood pressure too.

So Heidi, CONGRATULATIONS! You are a survivor! Take some time for yourself, rest, don't hurry back to work, love your loved-ones, and enjoy life! Don't overstimulate yourself now that you're home. Feel free to email me anytime, it's nice to have this wonderful board to share experiences with.

[hstupno]

Wow, Julie! I cannot believe you bled for a week and lived to tell the story. And I thought I was lucky!! 4th of July weekend and Dr. Kwan is there. He left his vacation to come and do my coiling and I wasn't even able to see him before I left the hospital today. I really wanted to thank him again personally. Guess I'll have to wait for the follow-up appointment.

I'm so sorry you had the stroke and suffered some lose as a result, but it sounds like you're doing really well. You survived, so that in itself is amazing after all you went through.

Before we left Portland today, we stopped at a store and the sales clerk told us her aunt who was 47, had an ruptured annie and died instantly. I had a very diffficult time with that. Why was I given life and she wasn't? It's puzzling. I'm soooo lucky there wasn't much bleeding and there weren't any complications during and after surgery. Why was I blessed this way and three other people I saw in ICU and the 608 ward not so lucky. I'm having trouble with that right now as I spend my first night back home.

I did take it easy at home tonight, but I am pooped. I think I'll sleep well....i won't miss the beeping of those damn IVs that's for sure!!! I had taken the full prescription of my Imodepin (spelling), so I didn't have to bring any home...yippee!! So, if my bladder holds out, I might get a full night's sleep for the first time in 3 weeks. Cannot wait!

Julie, you're a TRUE survivor! And I'm sure the Dr. Kwan Fan Club is far more extensive than we know.

Take care,
Heidi

[Lisa Sobocinski]

Good Morning to all,
I am in my second week of recovery of a 1.5 cm annie. Hospital stay was 5 days. Go back today for 2nd follow-up and to discuss 2nd surgery for the 6mm annie... the larger annie was clipped and the smaller is being coiled...any info on recovery for the coiling procedure would help...I am so happy I found this site...it has been sooo helpful to speak with others going thru this...best to all..I will update as soon as I know date of 2nd surgery...Love, Lisa

[joannef]

JulieNH, welcome, and I'm so happy to find another member of the Dr. Kwan Fan Club! You truly are one of the luckiest survivors. I can't imagine bleeding for a week before diagnosis.

Sorry to hear you had a stroke while being coiled. It's rare but it happens. Naturally, you're apprehensive about angios now. But try to relax. You don't feel the catheter at all, just a slight prick from the first needle. After that, all you feel is a warm (even hot) feeling from the contrast dye, and possibly you'll see flashes like fireworks. You could certainly ask ahead of time about general anesthesia, but usually they just like to give you something to relax you and they want you awake so you can hold your breath on command while they take the x-rays (usually only a few seconds). I don't remember my first angio, either, since it was right after the rupture. I think even if you are conscious at that point, your memory shuts down b/c you're in so much pain.

I went thru a lot of emotions afterwards, too. I think most of us do. I became very depressed about six months afterwards and eventually went on antidepressants.

Your theory about why you lived thru the rupture and stroke (low blood pressure) is interesting. I had low blood pressure most of my life, but it started creeping up before the rupture. I was told it was my age (I'm 51). Since the rupture, it's been high and I've had to go on medication for that too.

Heidi,
Woo Hoo! You're home! That's great. (Sorry, I'm a little late reading these posts, lol.) Do continue to take it easy. Your brain's had a trauma and needs lots of rest. And oh yes, I know exactly what you're going thru with the survivor guilt. On the "old" braintalk, I started a thread about those kinds of psychological aftereffects of annies. Lots of people chimed in about survivor guilt. You are definitely not alone in this. And you may never know why others died from a rupture and you lived. But the point is, you ARE alive and should celebrate each day. Live your life. Help other survivors. That's all you really can do.

Congratulations to you both and stay well.
Hugs,
Joanne

[Lisa Sobocinski]

Just an update on my 2nd follow-up with Dr. My dr called an canceled my appmt yesterday due to ememrgency surgery. I totally understand that but still a little disappointed. Go back on Monday to schedule 2nd surgery date. I will update Monday evening. The hardest part besides recovery is the waiting! Thanks to all for your support and hearing your stories. It is all this that helps me get thru each day. God Bless and stay STRONG!!!! Love, Lisa