How long were you D/C'd before you had a SAH? Had you had a rupture before the initial treatment?
What treatment were you given on this emergency, how long hospitalized, off work, etc? Were stent(s) implanted?
Diagnosing female patients as depressed is quite common; here, take a pill... my system could only manage half a pill...I had multiple emergencies before diagnosis. My med records note < and > two weeks of blood...I always wonder if less, or greater than, two weeks...because there were 4 weeks between the first and third emergencies.
Have you tried acupuncture, tai chi, yoga or any other?
I think a number of symptoms are prior to the more distinctive ones, including ruptures.
Some years back, I attempted to generate interest in our putting together more immediate, stronger, symptoms...a/w/a looking at some long-term symptoms. Do you want to pull up hyperemesis on your browser? I have some strong personal thought/belief on delays in the development of posterior circulation aneurysms...I was unable to generate any interest with two professionals. Then, what about TMJ?
Thank you one and all for all your support. It is great comfort coming onto this site and being able to vent all awhile being understood. I am not one to complain as I feel no one wants to hear it nor do they understand. Thank you for being there… May you all stay strong and healthy… just taking it one day and 2 excederin migraines at a time.
Well, the funny thing about all of this to me is that I saw and old local doctor after my annie surgery for an infection I had and he said: “I want you to go home and rest for 6 months, don’t do anything, after 6 months if you feel like it exercise a little bit, but not much. You have been seriously ill and your body needs time to heal.” I more or less took his advice over all of the so called experts and he was right. Day by day I am getting stronger, the headaches are less and the neuropathy is nearly gone. I take 1 aspirin a day and that’s it! I saw him last week and told him that he was the only doctor that made any sense. And he said: “It’s only common sense. Why give a patient more medications with side effects when all they need is rest?” He couldn’t believe the number of medications that the “experts” had me try or wanted me to take for the rest of my life. My PCP in Pittsburgh wanted me to go to a Rehabilitation Assessment Facility 2 1/2 hours away because he wasn’t “qualified” to complete a form for my job because one of the questions was “can the patient grasp?” I said to the nurse, “he just saw me last week and I used a pen right in front of him, surely he can tell that I can grasp, besides I am going back to work in two weeks.” Oh, I was so mad. I refused to make the appt. with the Rehab people. It’s a racket. The nurse sent me an email saying she was going to shred the form, well there goes my last disabilty check. I filed a complaint so now my neurosurgeon was supposed to complete the form…ha if it isn’t shredded, Nurse, okay helping the sick, I don’t think so. Rotten jerks.
Oh rest that sounds like a wonderful thing. I am glad to hear that you are feeling better without all the meds. I wish I could have a week or 2 off. There are time that I feel that I went back too soon. 5 wks after surgery. and to boot I did overtime as well. I'm just the type of person that pushes through and think that if i just push myself it will go away.. I am so tired of it that I have not even followed up with any dr cause they all make me crazy, and besides who has the time to get off work to keep going to these morons. Although I will admit that I just made an apt with an optomolist cause I 've been getting this stabbing pain in my eye, like the muscle is being ripped from the eye and hurts like heck. But to find time to travel to the city to another neurologist to make a guess as to the headaches and numbness would be the dealth of me to keep going back for him to probably just feed me more drugs.. I feel my excederin calm the headache and the numbness dont hurt its just annoying.
Kathy I wish you all the best and dont le them intimidate you.. stay strong and hold your ground. good luck on getting your paperwork in one piece
Jo-Anne, Sorry I haven't been on this site for a while. My husband decided that he did not want a sickly wife and made me move out of our house. I am still fatiqued and stressed to the max. My husband is seeing other women and tell everyone that I will never be the same person and will most likely commit suicide. I had to take more time off of work because the fatigue got so bad and then the docs say oh you are depressed and gave me so horrible anti depressants that kept me in bed crying for weeks. How is your eye doing. I am like you, I used to just work through the pain but my lack of stamina, energy, and contant infections I cannot do what I use to do, at least not yet! Keep in toucn.
don't knowif i can help but I have nubness tingling on my entire left side because they said my sah was on the opposite side of the brain.Whenever i asked of a time frame they all side stepped the issue -pt said they do not know could be 7 weeks or 7 years,Dr.'s say they can't say.Then my mortgage banker told me i was permanently disabled!!!!!-from info they received from dr. You could have knocked me over with a featherwhen i asked my dr. about this he flipped his paper and started writing!!!i sensed his awkwardness & the subject was changed by him.I feel the dr should be the one that tells you your permanently disabled so i think they're all wacko too.Iwish i had a more positive story-i thought someone put tape on my face when i was in the hospital.well good luck &keep the faith-ron
I had an sah 4 days after my coiling & stenting. The neurologists said it was bc of all of the blood thinners that they gave me when I developed a blood clot around the stent site. I had absolutely could not feel anything in both arms, legs, and chest. The said it was neuropathy. Well I made myself walk and exercise, and massaged my legs & arms and the pain became less. Then in October 2011 the numbness and tiingling became extreme pain, again I tried massage therapy and it made the pain worse and then I tried PT and that helped somewhat. I have to be careful what meds I take bc anti-botics, anti-depressants, make the numbness, tingling, & pain worse. My arms & legs are so weak. Still believing I can find a way to get back to where I was before. May God bless.
Sorry to hear about your other personal issues. Be strong and make sure you have plenty of positive people around. You find lots of them here.
I developed a clot around my pipeline stent after my procedure and had a stroke afterwards (parts of the clot breaking away and lodging in an artery). I had to go to ER and they let me stay overnight to monitor me. I am glad I knew the symptoms of stroke which is similar to what you have. It started with a tingling on my left arm (my annie was on the right), then it went floppy I couldn't lift it up properly or it felt like I had no control in it. No pain though but after I was seen by the doctors and scanned, they confirmed I had a mini-stroke or Transient Ischaemic Attack (TIA). Might be nothing to do with yours but could be worth it asking your doctors if you have had stroke. Also, as a stroke is an emergency situation, best that you know what it involves i.e. the symptoms. Hope I did not alarm you along with your other issues. All the best and hope things get better for you personal and health-wise.
ive been thinking please tell me if im wrong but 99% of us have numbness &tingling and the doctors have no medicine that works.dr gave me neurotin ,discontinued then doubled the dose and now stopped again.It doesnt work and he did not give me anything else because they don't have anything else. so if they ever find a med that works I'm selling everything i own &buying stock in that company.If a doctor says the numbness is not related to the Anuerism wow what a coincidense that99% of us have it.When dr's cant treat or explain it they deny it exists
Chris, thank you for bringing this up; after my first emergency, I sought testing/ diagnosis for my black-out (syncope); only an EEG was done. The tingling began about a week before my second and third emergencies. (after surgery to pin my fractured right shoulder). The day before my second emergency, I saw my PCP who had an ultrasound done on my right wrist...not my left. I still have the tingling; I did learn to exercise it to prevent it falling asleep and dropping things; and, I exercise it on/off the steering wheel when I drive (tho I could not drop anything, I always want to be sure I have the best strength/control of my left hand. I have been blessed that I have not had any extreme pain as Kathy notes.
Kathy, please contact your md(s) re: the tingling.
Prayers that you will regain strength in your extremities.
I use a stress ball to strengthen the weakness on my left arm. A nurse-friend of mine said that whatever the side of your brain that is affected/"disturbed" and something goes wrong, the opposite side of your lower of your body will be affected. So Jo-anne, maybe this is what the doctor was referring to about it being in the "wrong side"? It doesn't mean you are having a stroke though - just that the opposite side carries the effect. But as I said before, my doctors didn't let me go home and made me stay overnight for close monitoring because a stroke is a serious thing especially after having undergone a brain procedure. In any case, you have had insensitive medical "professionals". We annie patients have to be cautious because we have to take care of ourselves if doctors/nurses do not give a damn.
I just read this whiole thread and I am almost at a loss for how to even comment.
I wholeheartedly agree that you have to be your own advocate. I have been very fortunate to have fantastic neuro docs, but I too have heard “not related to your aneurysms” from my doc. I have been through enough that I know my normal and I am VERY vocal when something isn’t right.
I am never rude, but I am always heard when I have to go to that way of communicating. My former PCP told me I could Google the side effects of a drug I was taking. I looked him in the eye and told him I wasn’t aware the medical board licensed Google but upon his recommendation, I would save myself the copay and seek my medical care from Google going forward. I thanked him for wasting my time and left with my 182/100 BP, the reason for the appointment.
Ok, maybe I am rude, but I now have a new pcp and he is better anyway. Failure to listen amd take a full history is common, if the doctor isn’t listening, ask them some random question to see if it makes them ask what you mean. Just reply with a casual, “oh, you are listening” Your point will be made. Keep a daily journal with date, time, symptoms. Patterns develop and it will help to diagnos.
I am rambling now, this sort of thing just really gets me going.
Sorry you have to deal with this but stay strong.
Tammy~14 years, 2 days a survivor
I think one of the problems that doctors have is that numbness and tingling can be related so many other things.
While I have issues with numbness and tingling and I have aneurysms, the two are not related. The numbness and tingling in my hands, for example, can be relieved by moving my head on the pillow or by wearing those gloves with the metal splints. These have been much more effective than either neurontin or lyrica. I've experienced similar results with lower back pain.
So far, exercise and PT plus the carpal tunnel gloves along with checking my keyboard height have helped me with tingling and numbness more than any meds.
I would like to reinforce your point about making notes of your symptoms to see what patterns emerge not only to help with a diagnosis but also to help you to determine when you need to seek help and when something is just a part of the "new normal" for you.
Cris, thanks for this; yes, I have the squeegee stuff for the exercises at home. When sis/b-i-l asked the neuro-md post D/C about my left arm, he said it did not relate to his proocedure; but to watch my right side (L brain/ R body) where I have loss of feeling. There has to be something related to the Brain-Stem / spinal canal to the same upper extremity site...or, all my records stating I have a left ICA aneurysm, must be wrong; or it may be documenting/verifying what happened to my right brain during the minimally invasive coiling in my left brain.
Sometime after D/C the PCP told me/sis, the tingling was paresthesia, not uncommon w/stroke. That is defined as skin sensation of unknown cause; tingling related to stroke or heart issues. PCP said it like it was incidental; suggesting what may generate giving a damn; a dam that holds so much back.
I hope that a group of us can set up some groups by symptoms...maybe they exist, and, I have overlooked them; highly possible.
Thanks much for your response; prayers for all in recovery.
Thanks Pat. I think even if our procedure is minimally invasive, the brain is quite sensitive that if it gets disturbed even a little bit, its effect will manifest in the function of our body that controls that portion of our brain that got disturbed. Our brain is still a complex network. It is important to note that tingling alone does not mean one is having a stroke. Symptoms include a numb or weak feeling in the face, arm or leg, trouble speaking, blurred vision in one or both eyes, loss of balance or an unexplained fall, difficulty swallowing, confusion and unconsciousness. Great idea on the symptoms group. There are a lot of varied experiences in this site and like you, I feel I have missed something important.
Ron, 03/08, I got an emailed news article that states in the past decade, the pharmafia has paid about $8 billion in fines for defrauding Medicare and Medicaid...can go on-line and pull up Kelly Kennedy @ USAToday. Pfizer paid one of the highest; they also paid $11 million in 2011 lobbying. Hey, you may wanna read this before making a potential investment!
When I was put on neurontin, I had all kinds of reactions; stopped that one quickly.
On the serious side, do you have specific exercises; i.e. a stress ball or other; i.e. a Gripmaster; or similar? I also do the arm/hand individual exercises.
Prayers for your continued recovery; and, keep your fingers active on your keyboard.