I joined this group yesterday, Hello

I’m new to this group, but not a new aneurysm patient. In January of 2014 I had the worst headache I’d ever had in my life. I spent 3 or 4 days suffering with it because I thought I had a sinus infection, which I frequently dealt with. On the 4th day the headache disappeared, I felt great. I even went grocery shopping. The next day I was back to feeling poorly, not a big surprise since I know that sinus infections do not go away if untreated. At the time I didn’t have health insurance. On the 6th day I went to reach for something and my arm moved oddly. Over the next 2 days there were intermittent times when I couldn’t move my arm, but my husband would massage my back and my arm would work again. I have had issues with my back/spine before and once spent 2 weeks unable to walk because of my back, I was thoroughly convinced that I had a pinched nerve again. This would explain the headache and intermittent arm not working. This was a Sunday, so I’d make an appointment with my chiropractor the next day. I made dinner, washed the dishes and watched some TV. At the end of the evening I walked myself upstairs and went to bed. During the night I woke up needing to use the bathroom but wasn’t able to get out of bed. My husband assisted me, as walking was proving to be a challenge. At 7 am my husband woke me asking what hospital I wanted to go to. I went to the ER, told them my symptoms, was immediately given a CT scan of my head. Within a half hour of arriving at the hospital I was told that I had had a stroke 2 or 3 days before and I was admitted. I went through a barrage of tests and therapists and an MRI, but by the end of the day I was up and walking normally. I felt absolutely fine, but they made me spend the night. The next day was more therapy and tests. In the evening 2 doctors came to my room to inform me that I had a brain aneurysm and I was being transferred to another hospital that was better suited to help me. As soon as, they said the name of the hospital I knew I was in trouble. This was the Flight for Life hospital. I spent the next 7 weeks there. I had a coiling procedure done because I insisted on this. A few years earlier my sister had an aneurysm where they went in through her skull, when she woke from the surgery she didn’t know who her kids were, couldn’t walk or read (she is absolutely fine now). But she had expressed to me to not let them operate and to get the coiling instead. During the procedure the aneurysm ruptured, it had been dripping (which is what caused the stroke). They had to crack open my skull to control the bleeding and put a drain in. Then I was put into an induced coma for 24 hours. When I woke up I thought I was on the flight deck of Star Trek and hooked up to a lot of monitors.
I spent the next 13 days in the NICU. I have partial paralysis on my left side. In the beginning my left arm and hand layed there like a rag doll and I couldn’t move my left leg, foot or toes. I left the hospital grateful to be alive, but in a wheelchair.
I recovered movement of my arm and hand while in the hospital. Over the last 8 years, I have regained enough use of my leg that I can walk with the use of a cane. In the comfort of my home, I can walk some unassisted. I’m still unable to move my toes and foot or command my ankle to move. I have regained a great deal of feeling and continue to do so, but it’s as it comes back that you realize just exactly how much you have left to get back. I have spasticity and receive Botox injections every 3 months for it. I’m on year 7 for that. The only medication I take is a low dose of a statin for high cholesterol and fish oil for high trygliceride levels. Since my sister had an aneurysm they believe that it’s hereditary. I also have 3 more aneurysms, but they’re on the outside of the blood brain barrier, very small and there’s nothing to be done about them. All in all, my doctor’s believe I’m a medical miracle and are amazed at the progress I’ve made. I’m strong minded, a bit stubborn and refuse to give up. One of my surgeons told me that they know a lot about the brain, but they don’t know everything, so it would be up to me to do the work.
I’m a member of an online stroke support group for a few years, which has been nice to have that support, but I thought I should join this group as well to see if I’m missing out on some additional information and support. I’ve only read a few posts here so far, but from what I’ve read this is very similar to my stroke group. I try to be upbeat and positive, but I do have moments when I need a shoulder to lean on too. However, I will never ever quit trying or educating myself on what might be a new and effective therapy. I had an acupuncturist tell me that as far as stroke patient was I had a lot and I should just accept my condition and get on with it. I fired her and found another acupuncturist, he is wonderful!
Thanks for letting me tell my story.

9 Likes

Welcome! A scary and wonderful story you’ve shared, thank you. I can completely relate to pinched nerves having been hospitalized for some in my lower lumbar. Had a vertebrae out of place in my neck that almost completely severed a nerve to my right arm. They certainly aren’t fun. I can see why you thought it was another pinched nerve issue.

I like to say hemorrhagic strokes are similarly different than ischemic strokes. Both affect our brain function but just in due to different causes, hemorrhagic strokes due to the bleed and ischemic strokes due to the blockage, and then there’s another culprit that can cause issues, TBI. We have many members who’ve had all three. I’m glad you were able to find good support with your stroke group. I imagine because your stroke was discovered a few days later, you weren’t a candidate for the miracle drug, TPA. I recall reading where women can exhibit different symptoms but the FAST method is what our hospitals use quite effectively. We hope you can find support here as well as provide support,

3 Likes

Thank you Moltroub! I look back at my story and think I was an idiot, if only I’d gone to the hospital sooner. In a way I may have been fortunate, as the drug they give you for strokes may not have been right for me. I’m one of those people that has “rare” reactions to medications to nearly every medication out there, including antibiotics. But yet somehow I managed to survive the 4 or 5 procedures I had for vaso spasms. I had a nurse tell me that most people die from that procedure. It was kind of you to understand my story and share a bit of yours with me :slightly_smiling_face:

1 Like

I was lucky I believe that I didn’t have surgery for the 21 days of vasospasms in NSICU. The Residents wanted me to, but my Neurosurgeon said no and just kept me on the triple H therapy with ultrasounds several times a day. Like you, I have issues with medications and the list seems to grow every year. My doctors just say I’m a conundrum.:joy:

I would have loved to had just an ultrasound every day. I had a CT scan and a chest x-ray every day for 2 weeks. I guess I wouldn’t have made it without the medication they pour on your brain to stop the vaso spasms. They didn’t have a choice. Not a lot of fun, lost another day every time I had one and the enormous headache afterwards.

I had numerous CT scans whilst in NSICU. One time the beautiful young man took me down, signed me in and told the woman I was there. He returned to pick me up, they hadn’t called for him, he had looked at their logs and saw I was still in CT Imaging Dept. He came to get me and asked how the scan went. I hadn’t received one. Boy did that cause havoc with the department, The woman he told I was there prevaricating to her boss that he never told her. I came to his defense, they looked at the sign in sheet and I never saw that woman again. My RN for that day said I’d been gone for 3 hours and she was beginning to wonder if I got lost. To this day, I believe he was one of the ones who helped save my life. Once I told the wonderful NSICU RN I was refusing the daily heparin shot, it hurt and I looked like someone had taken a baseball bat to my abdominal area. She just looked at me, even after I reminded her the Federal law allowed a patient to refuse any or all meds from back in the ‘70’s. I buckled and gave in, couldn’t stand the sad face on some9ne who had to adjust the triple H every 5-15 minutes. People often forget it’s the line workers that help save our lives from housekeeping up through RNs, Med Students, Residents, the CCU MDs that come through all the way up to the surgeon. It takes a phenomenal team to help keep us alive!

3 Likes

Completely agree, it takes a team! We even had weekly team meetings, which included my family. Sometimes there weren’t enough chairs for all of us. Of course, I came with my own wheelchair. Almost everyone there was wonderful, except 2 and I had to wonder why they chose that line of work? And then there was my personal assistant who was fantastic :blush: I often think of her and would love to see her again. I was there so long that I even got to know the night shift cleaning lady, such a wonderful person, very kind, very thoughtful.

2 Likes

Hi! Welcome! I am new to the group as well as I had just had my ruptured brain aneurysm. I, too, had waited days to go to the hospital. Mine ruptured the Monday before this previous Thanksgiving. I didn’t go to the hospital until the following Tuesday when I made a doctor’s appointment since it had been over a week and I still felt horrible. She suggested I needed fluids since I looked like I just didn’t feel well and looked dehydrated and said to go to the ER. Who knows what would have happened if I didn’t have her tell me this? But anyways, I waited so long because I am 22 and healthy, I thought what could possibly be wrong with me? My family and I were not prepared for this news. I stayed in the hospital 9 nights and they said my ruptured anerysm was not ready for surgery (doc said it had to have a “neck” to it) so I had to wait 6 weeks-ish. I am now a month past a successful surgery of coiling

My older brother has full paralysis from chest down due to a spinal cord injury. It’s been almost 4 years since the diving accident. Being someone who helps take care of him and his sibling, I have seen him really struggle with being paralyzed emotionally. I cannot even imagine the difficulties you have gone through with your partial paralysis mentally and physically. It seems like something so hard to deal with, but you seem to be pretty positive.

Thank you for sharing your story. You seem like a really emotionally strong person!

-Laura

4 Likes

Depression can get to the best of us. I had a friend I went to university with who was also a quadriplegic due to falling off a ladder during firefighting training. Dad and I built a temporary ramp up the stairs to an old house I rented so he could come for Easter dinner. His depression caused the loss of his wife and family, he just had great difficulty and refused to take medication and seek out therapy. The only times he wasn’t severely depressed was attending classes. Sometimes we have to seek out the value of activities that make us feel better. Hang in there with your brother, but don’t let him take you down, always stand your ground with the positives. He may become upset but eventually he will appreciate it more.

It’s the same with incidental finds or ruptures. We have to sometimes work quite hard to keep seeing the positives life still has to offer. Positives come in a multitude of ways, if we keep our eyes open.

3 Likes

Weekly team meetings wow, just wow! We didn’t have them. BH came daily after work, my parents only came twice, Mom one other time. Parents couldn’t handle another child who might die and it was a long hard trip for my Dad who refused to take an offered wheelchair or use his walker. But the RNs were very good at calling BH and telling on me when I wouldn’t do something, like eat. LOL

1 Like

Hi Laura,
Thanks for sharing your story with me and your understanding. I was 56 when this happened to me, that may seem old to you :blush: but it’s relatively young to me, as both of my parents lived into their nineties. When I was released from the hospital I was on antidepressants, but due to side effects I needed to stop using them. Since I was so grateful to be alive I wasn’t depressed, but I do have times when I get the blues and it’s the support groups like this that help you get through those. I also have the support of my husband, who has learned over the years how to help me when I’m down. I’ve learned from my groups too how many people lose their spouses, children and significant others after their stroke/aneurysm, so I’ve learned to be grateful.
It hasn’t always been wonderful either, I’ve had family and friends tell me I’m different now, that I’m not doing enough, and question “why aren’t you better yet?” My own daughter shouted at me that there are people who run marathons after their stroke. Clearly, these people weren’t paralyzed. So even though she’s my daughter and we love each other there are times of frustration. I’m paralyzed due to the ruptured aneurysm, not the stroke.
My kids are adults and live an hour away, so we don’t see each other often, unlike before, when it was no big deal for me to hop in the car and make the drive at a moments notice. They weren’t here to see the daily struggle. They aren’t here to see the daily struggle.
Because I’m older and I’ve had life experiences, I realized early on that I was grieving and only time heals grief. When you become paralyzed you grieve the loss of your body, you can even feel betrayed by yourself. You also grieve the loss of the life you had before.
Having a brain injury is a traumatic experience and can come with a lot of things to deal with depending on the area of the brain that has been affected, such as crying for what may seem like no reason to others. Usually, this gets better, but it takes time and effort to get over these things.
I don’t know how long it’s been since your brother’s injury, but my belief for him too is to not ever give up. To keep working everyday to improve because the brain and the body are miraculous, and you never know what might happen.
Celebrate every little victory!
I have a relative who is a quadrapeligic. It’s been just a year now and he’s only 33. A few months ago, he met a stranger that walked up to him using a large walking cane and told him don’t ever give up, as he used to be just like him. It took him 10 years to achieve where he was that day.
It’s wonderful that you’re there for your brother, sometimes all he might need is for someone to listen. He might not want any advice, just a chance to get his feelings out.
Something else that helps me is to meditate daily, sometimes several times a day. It helps to quiet the mind and center your emotions. You Tube has tons of videos on meditation.
I’m also a big believer in massage. Even though he has paralysis he is probably in pain, he just might not recognize this because when you’re paralyzed you feel pain differently. I know this from experience. What physically happens is that the brain sends a signal to the spinal cord to tell a muscle to move, the spinal cord sends the message, the muscle recieves it but doesn’t understand, so it sends a distress message back to the spinal cord for help. The spinal cord’s only response is to resend the message. And so it goes every day, all day long. The result can be very hard muscles, knots in the muscles, and it’s painful you just don’t realize it. So massage can be a wonderful therapy. Massage the muscles and gentle stretching of the muscles.
My husband has been my main massage therapist, but I also have professional massages from time to time, and I also have a hand held massager and a massage chair.
Anyway, when we first began massaging he couldn’t believe how hard my muscles were. I couldn’t feel a thing. But then one day, and this was months later, I felt something! For me I can only describe the feeling as pain because there isn’t any other way to describe it to someone who isn’t paralyzed for them to understand. But, to the affected person it’s exhilarating!!!
For me it’s been a long process and it happens slowly. The feeling began in one small spot, but with continued massage and Botox therapy and acupuncture I now have some feeling all over my affected side.
Feeling has depth. In the beginning it starts just on the surface, but the more you work with it the deeper it gets. In the last 6 months I now have feeling in my foot and I continue to get more depth of feeling through out my body.
With depth comes movement, the more depth the easier it becomes to move. Currently, I only have surface feeling on my foot, so not much movement there and I can’t wiggle my toes.
The more feeling you get helps those injured nerves to correct the signals to the muscles.
Everything I’ve told you here has been confirmed by my doctors too.
Sorry for the incredibly long message, but I hope it helps you and your family.

4 Likes

Yes, weekly team meetings and they were mandatory! Team meetings included the surgeons, nurses, my personal assistant, all the physical therapy staff and my family members. The meetings were to go over where I was in my recovery, what I had improved on and what I needed to work on. They were also to make sure that my family had a full and clear picture of what was going on with me, and so the hospital staff was assured that I would receive the care I needed when I went home. Usually, my family only included my husband, sometimes my in-laws and my mom and stepdad.
My husband visited me daily. He came before work, brought me a cup of coffee, and then came after work (we owned a business at the time, so when he showed up varied) but he always stayed until at least 10 pm. I had trouble sleeping without him and one night weeks into my stay, a nurse told us that he could spend the night. His chair folded out into a bed of sorts, so they gave him a blanket and pillow and he began spending every other night with me so I could sleep. He didn’t get a very good night sleep when he stayed, so every other night was the compromise.
While in the hospital it was required that I nap every afternoon to help with the short term memory loss. I would wake to either my in-laws or my mom and stepdad or all 4 of them staring at me! My dad lived in another state, but he called me daily. He continued to call me several times a week when I went home, and my mom and my mother-in-law took turns staying with me during the day until 3 pm when my friend came to stay with me until my husband came home.
I understand completely the look on your parents face, worried that they will deal with the loss of another child. It was heartbreaking to see, but it also inspired me to get better. Within 2 or 3 months of my release I was allowed to be home alone… felt like heaven :slightly_smiling_face:

2 Likes

I was initially in what I called the NSICU barracks, the type that just has the curtains between beds but are rarely closed. I did get moved to a proper room where the toilet came out of the cabinet. Had to stop the CNA from watching television as I couldn’t tolerate the lights and sound. The RNs and various MDs as well as the beloved Med Student kept family apprised of what was happening with me daily. Usually the same, they didn’t know if I would make it through the day or night.

We live over an hour away from where they life flighted me to so twice a day wouldn’t work for my family and the rest live in other States, mostly in the Western States. BH would call every morning for an update, leave work a couple hours early to beat the rush hour traffic if possible and stay until 10:00 pm as well.

When I decided I needed to walk because of my lumbar fix, I couldn’t remember what my feet were supposed to do once I stood up. The RN kept telling me I wasn’t released to get out of bed and all I could come up with was Dr. Miller said I needed to walk. They didn’t know Dr. Miller. I was walking by the time my Neurosurgeon came in and asked what was going on. No one told her that I had another Neurosurgeon do the lumbar repair so I could keep walking and she was less happy she wasn’t told than with me walking. Because we live several counties away, staff didn’t know what services were available for me when I was released and left it to the PCP I had back then. His only answer to my issues was to get another Neurosurgeon. So I found my own services, Speech and Physical Therapies with the Speech being my biggest issue. PT just was a revamp of what I learned the year prior and more limits until my strength increased. It’s amazing how much muscle is lost when we’re stuck in bed for so long. I needed OT, but the only one for adults was booked solid with ischemic stroke patients. I was fortunate that the OT and ST worked together so well as my ST did all the OT. It’s when I was told I’m not allowed to cook unsupervised. I’m no longer fast enough for anything besides the grill and I tend to forget things.

When I was released, my parents had to babysit me. Like you, I wasn’t allowed to be left alone. My Neurosurgeon had to ground me from them after my second repair attempt😂.

1 Like

@Moltroub
Thank you so much for taking the time to write to me and share your story! After reading your comments I am more and more convinced that my disability is from the rupture and not from the stroke. I also feel a more positive vibe from this group. But the similarities between what people are dealing with is quite the same.
The NICU I was in was very state of the art. My room had a glass panel at the entrance that could fold away if they needed to rush in my room with equipment. Yes, that happened.
If I woke up at night, I could see the expansive nurses station and all the lights that monitored each patient. I truly did look like a command center, I guess because it was.
I know I was fortunate for all the company I had while I was in the hospital. But 8 years later, it’s become very quiet. My older sister now has a boyfriend, so I don’t hear or see her very much anymore. I’m happy for her, but…
My parents have both passed away now. My stepdad is still alive, but unless we call him we don’t hear from him.
My kids have busy lives and I get that.
I’m not the same person I was before, so contact with my friends is minimal. Except for one, who calls me nearly every day. She’s my lifeline to the outside world. I’m very thankful for her.
And then there’s my husband who has stayed the course. Thank goodness. Every day on my stroke support group I read about someone whose spouse is leaving them and is taking the kids. My heart just breaks. I was married and divorced once before, so I understand the grief of a relationship ending. I don’t know which is worse, grieving over the loss of a relationship or the loss of who you once were. I can’t imagine having to go through both at the same time. My husband and I will celebrate our 34th wedding anniversary in June, and we still love each other :smiling_face_with_three_hearts:
Back to your comments:. I wasn’t allowed out of bed, unless I was going to ST, PT or OT. Then, they would come to me, put me in wheelchair and off we’d go. 6 days a week for 3 or 4 hours. Sunday would be the big visiting day. One Sunday pretty much everyone I knew showed up and the next day I was so fatigued from over stimulation that they told my husband he needed to regulate the number of visitors I had in one day.
I had one nurse that would come in my room and just hang out with me when it was quiet on the ward. So one evening she got me out of bed and had me try walking with a walker. It was thrilling! But my affected leg swung out, instead of going forward, and when the rehab supervisor found out she put it in my chart that no one other than rehab was allowed to get me out of bed. I think that put something negative in my head that I may still need to address. Rehab also stressed, and I mean stressed, how important it was for me not to fall because of the muscle atrophy if I were to fall I would surely break a hip, a bone and this would put recovery back weeks. To this day I am extremely cautious about walking. I won’t go outside in the snow or ice unless I’m with my husband. Other people just don’t know how to anticipate my needs. I definitely don’t go out in public without my cane and if I’m alone I preplan where to park and how far to get to the entrance.
I’m allowed to drive, so I take myself to doctor appointments. That’s pretty much the only thing I do by myself, and for one doctor I need to use the walker because the walk is at least a half mile. Really big facility.

2 Likes

Congrats on the upcoming anniversary! Having a partner or spouse that’s willing to work with us is a total miracle. When I ruptured and had my first surgery, they told my BH not to expect me to know anyone, to speak, etc. The first thing out of my mouth was if my Japanese saw was still on the cellar floor. I didn’t know that it took them so long to get me stabilized just to be able to have the coils put in the next morning and then it took hours for Dr, Q-W to do her miracle. I did remember BH and I did remember our promise to each other during our very first date. It was a Jazz Festival in Charlotte and we promised to dance in the streets when we are 80. We’ve been together 27 years this month. We don’t have children but did look into foster care/adoption but our work schedules wouldn’t permit the high risk youth they wanted to place with us. I wasn’t willing to quit my job, BH had just became part owner of the company and couldn’t be home enough either. There apparently wasn’t any youths that we could help with our schedules.

You may want to reach out to your Neurosurgeon to help figure out which of your strokes did what damage. They may not be 100% positive but they may have answers you haven’t thought of.

Every time I had an angiogram be it the one where she just looked to see how blood flow was going and the coils or if it was another repair, I would have to double the amount of time it took for me to get over the anesthesia. My neurosurgeon kept using less and less in an effort to help me out. She also set up bimonthly appointments so she could follow me more closely. I used to see her a lot,

The last repair with the stent was in the new NSICU. It is a beautiful layout. The rooms are large, every room has a window where you can see the sun, know if it’s day or night, etc. There was a large sofa that was also a bed and a couple of chairs that could become beds as well. The RNs still have their two patients but they have a station outside between the two rooms and can turn a light on so you can see them. It’s really a little room where they can sit or stand and do their computer work instead of one on wheels. The busy RN Station is in the center but the rooms are arranged that all the business and busyness isn’t seen nor heard. I have to admit, I did enjoy watching all that on my extended stay in the old unit. My last repair, family wasn’t allowed to stay and could only have a short time during the day to be in the hospital. Dr. Q-W worked her magic within their rules but we had an extra couple of hours together. BH just had to sit in the car rather then in the waiting room until Dr. Q-W called and said come in.

I’m really glad you’ve seen the positivity of this group! It’s one of the things I enjoy most. That and people’s stories as I love to read how others are overcoming hurdles they face.

2 Likes

Hi @Moltroub,

I’ve had only 1 stroke. I’ve been over the images with Neuro quite a few times. I have one pretty small spot on my brain from the stroke and very close to it another pretty small spot from the rupture. After the stroke I could still walk, the stroke never affected my ability to walk. The aneurysm was dripping, every time my heart beat there’d be another little drop, but I could still walk. It’s the rupture that caused the paralysis, which is one of the reasons that I continue to believe that I will walk again, as I read early on that people with a ruptured aneurysm usually recover 100% because the brain will naturally absorb/repair the blood. They just can’t tell you how long it will take, as everyone recovers differently. I think I read that on the National Brain Aneurysm website… something like that.
At first I saw Neuro every year, had the CT scan, the MRI with contrast and then met with neurology to go over the results. Everything was looking good, no new aneurysms, everything was healing and the coiling was perfect, so they released me for 5 years.
I also continue to improve.
I’m glad your hubby has stayed with you too. We used to dance all the time. I always wanted to take dance lessons, but he wasn’t so enthusiastic about it, but he did promise that when I’m able to walk again we will! I’m holding him to it :grin:

2 Likes

I have a lot of brain damage from my rupture and the doctors are very surprised I’m able to function at the level I do. A week or two prior to my rupture I was in a training class in which the Instructor introduced a significant study which followed children who had brain damage. I cannot remember the Professor’s name right now but he is continuing his 20+ year study with several thousand subjects. He has statistically proven that what I learned in University was incorrect, which was after the age of five damage to the brain was irreversible, He has proven brains can heal no matter the age, just takes longer the older we are. I was taught that when the brain is damaged, another part can take over. It wasn’t a strong held belief back then but there are more studies now that are able to prove it.

Between repair attempts two and three, my neurosurgeon told me I was as good as I’d ever be and I told her she was wrong that I knew my brain would improve if I worked at it. I used to always walk like a drunken sailor and if we were walking in town or in a city, I had to have someone between me and the road. Learned that the hard way. I had horrible foot drop for the first several years but as long as I don’t become exhausted, it’s ok. If I’m exhausted, I can fall, falling hurts like the dickens. I need to learn to fall easy rather than hard LOL. My peripheral vision was non existent and I saw beautiful filigree white lights all the time. I sometimes miss them they were so intricate, like fine Irish lace. That has all improved with time. My speech has greatly improved and music really has helped with keeping a rhythm so my stutter isn’t as bad. Aphasia is still an issue but not what it was in the beginning. I can read and understand more complicated words but I continue to read and do little games. Currently I’m into Wordl thanks to our best friends and my niece. I know I will continue to improve because for me, there’s no other way. I love a challenge and now I’m the challenge so goal setting is a must.

I’m unsure what you mean by the ruptured aneurysm recovering 100%. Do you mean stabilized or occluded?

I’m not a doctor but I’m going to support your theory that it was your rupture that caused you to be paralyzed. Which may mean the neurotransmitters hit a road block and need to find a detour rather than damage to the spinal cord itself. I don’t recall if my Neurosurgeon gave an expected time period on how long it takes the CSF to get rid of the blood that entered it with an SAH. I do recall one of the Neuro RNs suggesting that the blood in my CSF could be a culprit to the migraines and spinal pain. Even after my release from “spa treatment” it was imperative that I stay well hydrated to help my brain to recover. I still have to or my brain doesn’t work well for me. My speech and gait are dead give away a if I’m not hydrated or have eaten enough protein.

Keep working on your PT and everything else they’ve told you to do. Never give up on yourself. I can see your husband and you in dance class!

2 Likes

Again thanks so much for your encouragement!

I’m not sure what the medical terminology is, but the brain should be able to clean up all the spilled blood. So my understanding is with time the area on my brain that was damaged by the rupture should heal itself.

No, I’m not taking that as a given, nor am I waiting around for it to magically happen. I do exercises and stretches every day, even on the days that I just don’t feel well, which is often.

Twice I have walked almost completely normal. The first time it lasted for 2.5 hours. The 2nd time it lasted for 5 or 6 hours. The 2nd time was the best. The odd thing is that it happened almost exactly to the day 4 years apart. No one can explain to me why it happened or why it went away.

I don’t have the typical drop foot. When I take a step my foot does lift up, but I can’t move my foot from side to side or tap my foot. Once in awhile I can tap my foot, usually while riding in the car. I have really nice seats in the car that you can adjust the pressure of the seat, so if that’s exactly right it seems to release the strain on the back of my thigh enough for the signals to get through.

When I was doing acupuncture I did move my big toe up and down once. Only once. It just happened??

I’m waiting for spring to go back to acupuncture. I don’t do well with cold weather, and I don’t like to drive by myself in the snow. If I were to get stuck in the snow it wouldn’t be a good situation.

From what I understand there was no damage to my spinal cord. What did happen is when my brain sent a message to move my left side and it didn’t respond, the brain decided I no longer had a left side and turned it off. So, it’s my job to turn it back on. Neuroplasticity and lots of hard work on my part.

I wake up nearly every morning feeling worse than when I went to bed, and it takes most of the day (evening) for me to feel better. It’s a vicious circle. Again no one can explain why this happens to me, and I have yet to learn of anyone else experiencing this.

We’ve purchased a new mattress. I’m more than comfortable and I have a good pillow, so I’m pretty sure it’s not the bed.

A little over a year ago, they started treating my migraines with Botox and it’s working. I very rarely now even get a headache. When I do it’s usually from over stimulation or a repetitive noise, like my neighbor practicing his guitar for hours on end or someone getting a new roof in the neighborhood.

I pretty much drink only water and I drink a lot of it, but recently I read that fruit juice is better at keeping you hydrated than water, so I’ve added at least a glass of juice every day.

1 Like

You’re more than welcome! When we rupture blood can get into the subarachnoid space mixing with the Cerebral Spinal Fluid. The CSF is what removes waste from my understanding. I hope someone who knows more will add in their knowledge and experience. I found this, but it’s not exactly what I was looking for Physiology, Cerebral Spinal Fluid - StatPearls - NCBI Bookshelf

I popped my pipe in Nov 2013. It was a darn good pop with greater than 1mm of blood entering into my subarachnoid space, the hospital used the Fischer levels and I was a 3 which explains all the days of vasospasms. It also explains all the damage to my brain. I have significant areas that are gone. Apparently I didn’t need them much. I would think by now your CSF has cleaned out the blood, but again I’m not a doctor. I know when I had a lumbar puncture at the ED after procedure #3, I had no blood in my CSF. So that’s about three years after rupture.

Neuroplasticity is our key to recovery from damage to our brains and we just need to help it along with exercise, mindfulness, etc besides having the patience of a saint. For those that don’t know what it is, there are two types, Structural and Functional. Structural Neuroplasticity is the ability of the brain to change neuronal connections and Functional Neuroplasticity is the brains ability to alter and adapt the functional properties of neurons. Rather than getting into all of that, it’s why I say our brains hit a road block and need to find a detour.

Our brains are really phenomenal organs. I highly recommend to everyone reading to check out ways to increase Neuroplasticity. There’s outstanding research in just about every area of brain issues. Since we are a rare group, try looking into the TBIs or Ischemic Stroke sites.

“The Magnesium Miracle” by Dr. Carolyn Dean… You mentioned you liked finding things to help with your healing. It has helped with mine immensely!!!
My rupture happened back in ‘08’ and I just celebrated my 55th birthday. I also live daily with a positive, grateful attitude and take lots of vitamins, minerals and herbs and drink plenty of water, almost a gallon a day.
I wish you much prosperity of wealth and health. Many blessings of peace and joy!!!

1 Like