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Susan McGoldrick-Meerdink

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Everything posted by Susan McGoldrick-Meerdink

  1. Hi Everyone~ I joined here 4 years ago after my SAH. Since then, I've had a series of mini-strokes and at least 2 "big" ones. The most recent was just this last month. It's so frustrating. They can never find a real cause. I know when they happen 3 things are generally true: 1) I have a migraine bad enough for my oxy and or Fiorcet about a week before; 2) I am under an abnormal amount of stress; and 3) I am taking prednisone at the time. My heart is good and my last cerebral angiogram was clear and I was released from future angiograms and MRI follow-ups to my NA-SAH on the 4 year anniversary. I am curious if these brain vacations or strange brain spasms are just part of the landscape now and others have experienced the same. Also, has anyone experienced white matter changes since their SAH? Apparently last week's CAT scan my brain is aging faster than my age. I may have the skin of a 30 year old (I'm 51) but the brain of a 85 year old! LOL
  2. Anyone have any real world truth to share? I only ever had one when I was unconscious the day of my SAH so I wasn't "awake" to understand what was happening. LOL Now, 3 years later they are insisting I have to have an angiogram of my brain because I never had the 6 month follow up one and now I need spinal surgery, which I can't have until they clear me. It's ridiculous. My doctors' clearances now need clearances! I'm very afraid of this angiogram because I have to be awake. They will use sedation but how much? Is it the kind where you really have no idea what is happening or is just a little valium? They claim I will be awake because they have to talk to me while they are doing it. With my spine as bad (painful) as it is, I am really freaking out. A) I'm afraid to let someone mess with my brain now that it is healed. I'm afraid the pain from my spine will be so severe I will be unable to lay there for 3 hours. C) I'm afraid they will find something. Tell me I am being a baby! LOL I know intellectually it's not that bad but for some reason I'm really terrified of this one test.
  3. 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!
  4. 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. 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.
  5. Hi! I am like you too! Daily headaches. I expected them however. The doctors told my husband while i was still in ICU that was expected for the rest of my life. Mostly now, at almost 3 years post SAH, I don't notice them as much. But it is draining. I was a type A person and am now finding I am the person who needs the most help. The fatigue is just part of having a TBI. I am extremely fatigued. But again, you have to find ways to manage it. I can say now I take very little medications for the headaches and for the lack of sleep. During the first year, I was on a TON of pills. Migraine meds, pain meds, sleeping meds, nerve pain meds.... I felt the result was I became a zombie. On TOP of the brain fog already there from the brain injury. I stopped them all. My doctors were not happy as I didn't do the right way with their monitoring but I found after a detox period.... I wasn't as foggy and could get more accomplished. I also began sleeping better and letting go of the "sick" me. The fear of it happening again. My husband and I went through a script when I would feel that way. I would tell him my head hurt and I was scared. He would talk me through the night of the emergency room and what followed that I wasn't awake for. He reminded me that if I was having this conversation and thinking about it, then it wasn't happening again. This is similar to Cognitive Behavioral Therapy. It worked to alleviate the constant fear in the back of my mind that death was still coming for me. It took a while but I think it was the 2 year mark where I started not thinking about it all the time. For sleeping, I have found I can't sleep flat with my head down on one pillow. I MUST have my head propped up on an incline. If I am flat on the bed, I still get a massive headache. Try sleeping up on an incline. IF the pressure/pain in your head is lessened, you might get sleep without fear and then eventually without drugs.
  6. Hi All! It's been almost 3 years since my PM-SAH. In those 3 years, I've had a couple TIA's and been diagnosed with mystery autoimmune disorder for which I am taking biologics. I've also gained a BOATLOAD of weight!! Since my release from the rehabilitation hospital almost 3 years ago, I have gained 50lbs. Some of it is from the new medicines for the auto immune disorder but I am beginning to think some it is because of the brain damage. I was diagnosed with severe cognitive impairment a year AFTER my SAH. I have little or no working memory and executive function. I just don't think I have the attention span to stick to a diet. I forget to eat. Or when I do I'm just throwing whatever I don't have to cook in my mouth. In the first year and half after the SAH, I used to leave the gas burners and oven on without realizing. I set the outdoor grill on fire. I was becoming a hazard. I think this "brain fog" is also causing me to almost "forget" how to eat well again. I think the result is at least partially responsible for the weight gain. My neurologist told me that after brain damage some people do gain weight but they've never really looked into why and many doctors feel the medications are responsible. Like steroids, etc. I was just curious if anyone else has experienced this.
  7. Today is the one year anniversary to my SAH! We call it re-set day! My husband said it's not really a birthday and an anniversary is for happier things so today is re-set day! The day my brain took a holiday and re-set itself........ like a computer! LOL I can't believe it. In so many ways it *feels* like yesterday. Literally. My cognitive deficit makes me lose track of time......... a month feels like a week to me! (These are the jokes people! ) I'm actually a little emotional today. My health is not exactly where I wanted it to be at the one year mark but because I survived what I did, I know take my health more seriously and do not try to "walk it off" anymore. I still have a love/hate relationship with God but I'm always in awe, even more so now that I came through June 7, 2013 mostly unscathed. I appreciate my husband way more than I ever really did a year ago. He took care of me when I was in the ICU in ways I didn't think he was capable after years of off again/on again marriage. My marriage is the biggest miracle of this SAH journey. It brought us together and what more can anyone ask. And finally, my son gained so much more than either me or my husband. My SAH taught my hubby and I that no matter what we are doing, if our son asks us to play, read, go to the movies...whatever.... we drop everything and we do it! My house is a mess because we don't worry about cleaning every weekend anymore. We can always hire a maid but we can never get TIME back so why waste it! Love your family NOW.... not when you "have time."
  8. Teechur at least we are all miserable together!!! I swear no one else but this group really understands.
  9. Iola ~ Yes we went to KKI! They are awesome there and I'll be going once a month now with my son. As for walking around after I left the rehab place.... I have come to the conclusion I was high! LOL When I look back at how many drugs I was on Oxycotin, steroids, etc. I felt like Wonderwoman!!! I didn't "hit the wall" until they took away my drugs than I realized it was the drugs keeping me active. Anita ~ FIVE??? God Bless You!!!! I can't imagine putting on a happy face when faced with the amount of laundry and daily activities you must have with 5 children! I only have the one and he wears me out these days. Keep plugging along! You are right... We accept our "lot" we just don't cave into it! Stay strong!!!
  10. Boy do I push myself! It started when Kessler was begging me not to leave to take my son to Fenway! Literally the day after I was released/left, I got in a car with my family and drove to Boston. I walked all over that city, with my walker and my wheelchair! I have continued to push myself beyond my physical limits and most certainly my emotional limits this year. This past weekend I walked all over the Inner Harbor in Baltimore so that my son could have fun before being poked at Johns Hopkins. I find I push my physical limits more for them... the family. So that it feels normal. Inside I'm screaming or crying because I haven't felt normal since June 7, 2013. With my cognitive deficits I doubt I will ever feel like my normal again but I push myself to "act" normal. The harder I push myself the more I hope to feel normal. I suppose it's a good thing....... the alternative is giving up ...by pushing our limits we discover we may not have any limits!
  11. Almost a year to the anniversary of my PMSAH and I feel worse. You are right Chris. They don't think we should have wide spread pain. Even my new neurologist who had so much promise for getting to the bottom of things, he seemed interested, no longer shows interest. The honeymoon period of a new doctor relationship is over. Yesterday he basically acted like I was wasting his time. He rattled off the list of known things wrong with me, small fiber neuropathy, sensory neuropathy, etc., and then said I needed surgery to my wrists, elbows and shoulders to release the nerves so it would stop causing pain. I asked him why he wouldn't just attribute this all to my SAH. And he looked at me dumbfounded and said it was not possible. Sorry dude, didn't have half this before so "something" had to cause it, I didn't just wake up one day with full body neuropathy, oh wait yes I did.... it's called a BRAIN HEMORRAGE! He wrote me a prescription for more Firocet and some topamax and told me I need a PET scan of my brain to rule out early Alzheimers or other illness. Again, I had a brain hemorrhage, why don't these doctors think that could possibly be responsible for causing my cognitive impairments?! (rhetorical) I give up. But I know I'm not taking any more medicine. My liver enzymes were very high. That has to be from all the pain meds and other they have been giving me! No one seems concerned about that either. Which cracks me up!!! They just keep writing prescriptions.
  12. Iola, Isn't it odd that we all seem to have the same kind of aches and pains regardless of how far post PM-SAH we are? There must be a correlation.
  13. With respect to the folks to talking about neuropathy, I was just diagnosed with Small Fiber Neuropathy and Peripharal Neuropathy. Neither of which I had before my SAH. The neurologoist is stumped. He said the most frequent explanation for the SFN is diabetitis but my blood work came back fine. It is has gotten so bad I can barely walk now. I feel like something is happening in my body. My nervous system seems to be deterioating. Arms, hands, legs, etc. I'm on Neurontin and Vicodin for the pain (which I'm not even taking since I'd rather find the root cause than be drugged) and topamax to prevent the headaches (which it doesn't). I can put up with the physcial problems but the cognitive loss is what I struggle most with….. my doctor wants me to go on Exelon patch to try to combat the loss and see if we can get some back. Not sure about that one. Of course, running around with an autistic 5 year old doesn't really give me much time to rest. I'm sick once a week it seems now from a low immune system as well so I'm not getting a chance to recoup my strength.
  14. I knew this but seeing the test results in black and white and hearing the doctor discuss my options has been depressing. I told him the other doctor told me it was impossible after a Perimesencephalic SAH and he laughed. He said blood in your brain is blood in your brain…. it ain't good! He did make me laugh. But apparently, I have moderate cognitive deficiencies, mostly in executive functions and organization/processing. This doctor said there is a pill he could prescribe to help with my memory and cognitive issues. I turned it down and opted for outpatient therapy instead. Has anyone here heard of such a pill??
  15. Hendo ~ The emg and nerve conduction tests are pretty good indicators. I did not know I had neuropathy in both arms and both legs. My left leg bothered me before the SAH and then after the SAH I was just thankful to be alive so I didn't really care about the discomfort. The nerve conduction test, the one that is like a taser gun zapping you, shows the nerve signals. The EMG, the one with the needle in a muscle with an impulse, showed the muscles in my legs are strong despite the neuropathy. Perhaps go back to the doctor you are most comfortable with and ask for the nerve conduction if he didn't already do one. No one here is a doctor who can tell you what's wrong. But as a group of people who have survived all manner of things after SAH, this group can provide peace of mind that you are not crazy! LOL I was literally told an hour ago by my neurologist they may never know how to fix me and if the neuropathy persists I can end up in a wheelchair someday. I was told to keep moving. Exercise as much as my body will allow. I can tell you there are many odd things happening in my body since my brain exploded. Luckily, I now have a doctor who understands my frustration and fear and assures me many of these things do resolve eventually. It just is unknown how long it takes for each individual. I am only 9 months out. My brother had a double aneurysm over 10 years ago and occassionally still has some muscle tiredness after overdoing it. I wish you well.
  16. I was hoping you would reply Kris ! LOL I remembered you were a neuroscientist! My digestion is also screwed up and I have gained weight so fast in the last few months it is insane! I'm hoping my neurologist is being cautious before he says too much without all the data. The hospital in NYC still has not sent him my records. All he has is the initial radiology report that found the SAH. I like your explanation! Once things settle down I'm going to find an assisted stretching/yoga/pilates thing to do. I have bad joint damage from a mystery autoimmune also so I have to start very slow since nothing bends too much anymore! I go Thursday to see him now that he has completed all his tests to get the results. He gave me a cognitive test too so I can't wait to get all the results!
  17. So my new neurologist has done every test known to man on me in the last 4 weeks! This week I had EMG and nerve conduction on my lower body and my shoulders/arms. Surprisingly to me, I have bad neuropathy! The doctor is perplexed as to why both legs and both arms have severe neuropathy. He said he was shocked I was as active as I am. He doesn't understand why my leg muscles are strong but yet the nerves are not. My arms have both muscle weakness and nerve damage. I felt like saying "Duh. I had a SAH!" So my question to you all is this: How many also suffer from bad neuropathy? Did you have it before the SAH or only after?
  18. I totally understand! Weary is the perfect word for it! Hasn't your neurologist offered anything to take the edge off? I have Firocet, works to knock down the pain. (((((Hugs))))))
  19. Kris ~ I really like hearing there is continued improvement as the years go by! Sometimes I feel like it's two steps forward and one step back and that gets daunting. Hearing from the folks here really helps keep me stay focused!
  20. And whew! New guy seems much more interested in me than the last nightmare of a doctor! Of course, all that interest means a full exam. I guess I "failed" the neurologic tests.. something about my eyes not following and my tongue.. what is it with these people and tongues?? He seems to think I've had something happen to me more recently, perhaps another stroke. So I have to spend the next several days getting every test known to man. Doppler u/s of my neck and head, MRI's of head, neck and spine, memory/cognitive testing, EMG's of my arms and legs, and angriogram of brain. He's concerned because of my other non-brain symptoms. He suspects vasculitis (inflammation in arteries) from my mystery auto-immune disorder. He definitely thinks the brain hemorrhage is related as well. He said he wants to track it and find the reason because in his opinion there's always a reason, doctors may not always be able to find one, but he thinks there should be a reason. Even though he thinks there could be more wrong with me than I thought, I am giddy! To finally have a doctor want to connect the dots of all my illnesses these last few years is a relief! Of course it also all leads to a doctor telling me I have to lose weight! I have gained 25 pounds in the six months since my PM-SAH. So what do I do…….stop in the Irish import store next to the doctors and buy some Crunchies and some Flakes and Jammie Dodgers!
  21. I finally have an appointment today with a new neurologist! I only had two follow up appointments since I was released from the hospital! The doctor in NYC never returned phone calls. I spent hours, literally, hours trying to get through to a human last week to get copies of my records. I never did. So the new doctor will have to try if he wants to see them. I just hope I can remember what I wanted to ask! Wish me luck!
  22. I read some of the reports from the day I was admitted to the ICU today and I am still shaking and crying. Turns out I had a combo SAH. Only a small portion of the perimesencephalic cistern was involved.It was mostly midbrain, in places and cisterns that sound like a scifi movie! LOL And there were two points of bleeding and an issue with my heart….no one told me that. I don't remember any of the testing listed as being done that night. I thought I was awake but according to the reports I was not and in way more serious condition then I thought. I know it doesn't matter because the end result of being alive and relatively well is a blessing. But I'm overcome once again with guilt for not being more spectaculour in my life! Damn Oprah……
  23. So good to hear!!!! I'm only 7 months but feel a big difference from even the 3 month mark. I still have wicked headaches and trouble talking if I'm tired but it is slowly getting better so I'm so happy to hear someone who has been there done that and come out on the other side happy and healthy!
  24. It's weird to be able to "prepare" for *that* trip to the ER again. But now my husband and I have decided to be prepared for anything. We are older parents, our son is only 5. So we decided we need an emergency book. So today we hung on our wall, in a place emergency people could find, a list of important phone numbers, where to find each of us at varying intervals during the day, those phone numbers. For instance, if it is during the week my son is at School # 2, the principals name and number. My husband's boss and secretary numbers, etc. People in order to take our son or pick him up at school, etc. I don't ever want to worry about my family again. The last time I may not have called for the ambulance if I was alone with my son but luckily my parents were staying with us so I felt comfortable someone was here who would take care of him while the paramedics did their thing. Know what I mean?? I like having my "kit". It now feels like I have an umbrella on a sunny day! It never rains when I have my umbrella!
  25. I heard a pop this morning. Followed by a headache, and dizziness. It's weird how now I question if it is a headache or something more. I think for now my hubby and I have analyzed it and decided its a migraine. I don't remember screaming but he assures me i was so we are confident its not a bleed. But I packed a bag of stuff for the ER just in case! For instance, a brush, a ponytail holder with no metal (for scans), shampoo I'm not allergic to, clean underwear, eye mask to block light, etc. I was remembering how disgusting it was when I couldn't stop puking and my really long hair was in the way! It took weeks before I could get it washed! I couldn't get the ICU nurses to understand I wanted them to get the puke out of my hair! What would be in your "must have" bag if you thought it was happening again?
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