Susan McGoldrick-Meerdink

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

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.

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!

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.

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.

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.

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."

Teechur at least we are all miserable together!!! I swear no one else but this group really understands.

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!!!

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!

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.

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.

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.

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??

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.