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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 annivers
  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 l
  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 who
  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 happ
  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. Migrai
  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 th
  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 d
  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
  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
  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 caus
  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 pr
  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
  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'
  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 no
  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 h
  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 be
  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 re
  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 sch
  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
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