(800) 973-1540
about 4 years ago
kirsty said...

Hi, my mum had a stroke on the 4th of September and it was quite massive. unlike your mom, she lost the use of her right side, all of her speech and her swallow, continence etc... she was unable to have blood thinners due to other health complications however, I am happy to say that after 5 weeks mum is walking, she has aphasia (unable to speak clearly but it's getting better) and her continence back. The doctors were not very hopeful about her condition but she has shown them.. I have been a cruel daughter and pushed her (you will know when your mom is fatigued) but I didn't start the 'push' until after the 2 week mark. One of the nurses suggested I read a book called "The Brain That Changes Itself"... I strongly suggest you read it! I wish your mum the best of luck in her recovery, I hope this info helps :)

about 4 years ago
Amelia3 said...

Hello,

My grandma who's 80 had a stroke about 3 months ago. It was on her right side and was unable to talk, walk, swallow and had incontinence problems. At this point she can walk assisted because she gets dizzy spells and we are afraid she may fall. Her right side is weak, but she has total movement when she focuses. She's beginning to say more words, but most of the time her speech is slurred and unrecognizable. We're still feeding her through a tube in her stomach because she still cannot swallow. She still has incontinence problems and wears adult diapers. Overall she's more alert and interactive and it's because my dad pushes her everyday just as Kirsty pushes her mom. We have seen that she's more alert when I bring my 9 month old son over to my parents house for a visit. If you have any children in the family, they are nature's medicine. Some days it feels like my grandma is going backwards and then she surprises us with a new word or movement. Remember to stay positive and help them her out of the depression and uphill batlle she'll be faced with. Wishing yor mom a fast recovery. :)

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about 4 years ago

It is difficult for someone who loves one who has had a stoke. My wife watched the man she had been married to for 33 years unable to move his left side and do simple things like speak and move. It does get better. For the first two weeks PT, OT and Speach and hearing specialists got me to drink again and do minor things like stand, speak and start the process of moving again.

I was lucky to go for four weeks to a tremendous rehab hospital, leaving the hospital with the ablity to walk again and move my arms and legs. After another 8 weeks of out patient work I am now using a cane and for the most part getting back back to some sort of normal life. While this does not happen to most, the most important part is to get your Mom with a good PT and OT group of people who know what they are doing. If your mom is on Medicare they do work with you.

Don't give up. Your Mom will come back. Maybe not quite the same way as you remember her but she will with work and time be able to become a member of your family again. Love her and remind her how much you do and do not let her get away with not doing her work because she is "tired" Can not get better without work. Good luck will keep you in my prayers.

about 4 years ago
Mysticblndmist said...

Thanks all for your replies, it really does help to hear stories from other stroke survivors or their families... It also gives hope that my mom will be able to recover at least somewhat from this stroke, I have hope she can recover quite a bit... and will keep helping her and such in doing so. She was just placed on a PEG feeding tube yesterday which worries me alot and wondering if she will ever be able to recover her swallowing ability. She is still unable to move her left side but her speech is starting to get a bit better... think she becomes confused every now and then but I would imagine that is to be expected. She hasn't had any rehab as of yet... well the other day they did swing her over to a chair to sit for about 20 minutes and she does have left side neglect

about 4 years ago
oc1dean said...

What you need to do is demand a 3d representation of the penumbra damage and dead brain damage. Your doctor can then describe what those areas controlled. The penumbra normally recovers in 6-12 months but will still require lots of work on the survivors part. The dead brain functions will require therapy like passive movement, mental imagery, mirror-box therapy, thermal therapy. Your doctor is describing results of the damage , he needs to describe the damage itself because therapy is different for the two types. He will claim to say, 'I know nothing', you have to ask Why? Why? What can be done? Until survivors push medical staff to come up with answers they will always just wait for the spontaneous recovery to occur and hope that that is good enough for the survivor. Ask and understand neuroplasticity, it is the basis for all recovery. Read Stronger After Stroke by Peter Levine

about 4 years ago
huncha said...

My husband had a massive stroke 17 mos. ago and after a lot of hard work, motivation, and 7 mos. of treatment, you can hardly tell! He was in an inpatient rehab facility for 7 wks. followed by outpatient rehab. 9 hrs. a week for 5 mos. I felt exactly like you -- a million questions, skeptical that he would ever be "himself" again, and helpless to know what to do to help. I found the on-line resources from the American Stroke Assoc. and National Stroke Assoc. to be very helpful. We have since formed a Stroke Support Group locally and look forward to our monthly meetings with other survivors and caregivers to be invaluable. They have the same concerns, similar experiences, and excellent advice. Suggest you find one either locally or on line. Good luck - and remember, a "new normal" is OK, too.

about 4 years ago
Mary Simpson said...

HI. I HAD MUCH THE SAME STROKE 16 YEARS AGO.... IF MOM HAS BEEN MOVING HER HAND ANY THEN THERE IS ALOT OF HOPE. I TOO HAD A PEG TUBE FOR 4 WEEKS. ITS A GOOD WAY TO GO TILL SHE CAN SAFELY HAVE FOOD. TELL HER ANYONE WHO HAS NOT DRANK FRENCH TOAST THROUGH A STRAW...HAS NOT LIVED! [GRIN...STROKEE HUMOR]

HER EYES ARE CLOSED BECAUSE LIGHT IS TOO BRIGHT FOR HER! I HAD THEM COVER MY WINDOWS WITH BLACK TRASH BAGS IN MY REHAB. I STILL WEAR A CAP OUTSIDE IN THE SUN . I ASSUME SHE HAD A CLOT ...I HAD A BLEED SO THATS A BIT DIFFERENT . ITS GOOD THEY ARE KEEPING HER SAFE FROM ANOTHER CLOT.

THERE ARE LOTS OF ONLINE GROUPS THAT ARE FULL OF PEOPLE THAT CAN GUIDE YOU BOTH THROUGH THIS STROKE JOURNEY. ITS A LONG JOURNEY FOR YOU BOTH AND THANK YOU FOR BEING A SMART, LOVING, CAREGIVER .... WE LOVE OUR CAREGIVERS! THEY ARE OUR ROCK.

YOU CAN CONTACT

ME ANYTIME WITH ANY QUESTION IF YOU WANT.

BRING IN HER FAVORITE MUSIC, AND TELL HER "THERE IS NO LIMITS IN TIME OR RECOVERY" NO MATTER WHAT ANYONE SAYS!. DON'T LET NEGATIVE THOUGHTS BE PUT IN HER HEAD. SHE WILL HAVE A GOOD LIFE AHEAD. I PROMISE.

HUGS MARY SIMPSON

about 4 years ago
Mysticblndmist said...

Thanks for your reply. Its great hearing from people that have and are dealing with strokes as its such a scary and rough time and sometimes I just feel so alone

almost 5 years ago
Beinice said...

Pray, understand, get started in rehab and never stop praying Have faith and never give up.

almost 4 years ago
gershensongirl said...

My father whom is 74 years old had a stroke on September 9, 2010. Unfortunately he was alone. It happened between 9:30am -10:30am, but my son found him at 4:30pm when he got home from school. I found out he had an ischemic stroke, which was caused by a clot in the brain. It happened on the left side of his brain. His right side is still paralyzed, he has a trach, but they are trying to wean him off of that. He does have a peg hook for his feeding tube. He was on blood thinners, but because he has a brain hemorage they stopped that. He has dvt in his right arm. I was hoping because he wasn't moving it, but it is because they found another clot, so know one is allowed to move that arm, no iv's in that arm either. They (nurses) keep it elevated though. The only thing he does do is move his left arm and leg. His eyes were empty for so long, but know when he looks at me, it is like looking at a child whom done something wrong. I've had so many people, doctor's, & nurses tell me what his outcome could be, but if my father can have ANY quality of life then that is what I want. He raised me all by himself and I can't picture my life without him. It has been a little over 7 weeks since this all happened. It definately has changed my life.

almost 4 years ago
gershensongirl said...

My father's stroke effected his right side. After 7 weeks he is still on a feeding tube and trach. His eyes are now looking better, before they were kind of empty. I was told that he would need therapy for speech, swallowing, etc. It all depends on the individual how they progress. I will keep you in my prayes, because no one should have to go through this. It is hard....it is me and my 14 year old son, so sometimes I do feel alone, but this site has been very helpful. Just keep talking to her, because when my dad's eyes were closed the nurse didn't know if he could hear. I even put the football on in his room to maybe listen to it.

almost 4 years ago
JoanneSF said...

My father had a stroke on Oct. 5th in the left side of the brain affecting his right side. The day of the stroke he could move his right arm, squeeze his hand, and lift his right leg. The next day he could no longer move his right arm or hand and his right leg was extremely heavy to move. He did not have to go on a feeding tube, however he had difficulty swallowing and had to eat very very slowly and was on a soft diet for a week. He just recently left acute rehab where he stayed for 4 weeks. He is eating normally, walking with a cane, walks up stairs (with assistance), has some movement in the arm, and is talking well (though he must concentrate to speak clearly and loud). He is still working on the hand which has minimal movement. I believe that in time he will improve and have read that there is no set time line and only continued therapy, exercise, and determination will cause improvement. He get tired and frustrated when we do his exercises, but he does need to be pushed.

Another poster wrote to have hope and belief that your mom will improve and that it will just take time - I have accepted this myself. I have also accepted a "new normal" and understand that it will take time and effort to move toward full recovery if it will ever happen.

Best wishes. Remember to take time to take care of yourself through all the worry and the never ending list of things to do.

almost 4 years ago
Mysticblndmist said...

Update... Thanks for all your replies it really does help to hold onto hope and such. My mom is now off the feeding tube and on purified food and thickened fluids (juice,milk etc). The doctor has her on heavy pain killers to try to get the extreme pain under control so that she can start rehab in which they hope to have her moved to the rehab floor sometime this week. Her left side is racked with severe pain.She still doesn't eat much...so I push her a bit to eat a little more. I have run a pen up the bottom of her foot and her big toe moves a tiny bit but thats all. So now and then I bend her legs to loosen the jolts and stuff and raise her left arm. Its been a month on Wednesday since she took the stroke and she really hasn't done any PT yet and hoping they will soon start her. They figure she has total left side neglect also. Her speech is low but it seems to have corrected but she gets confused on some things...example thinking her dog is in bed with her or that her grandkids woke her up at 6:30 in the morning... Also saying they drilled holes into her knees etc.... I'm not sure if thats because of the stroke or pain meds but I am guessing that is normal and may correct as well over time?

almost 4 years ago
Mary Simpson said...

COME CHECK OUT THE www.centralpain.org I AM SO VERY SORRY SHE IS HAVING PAIN. WE CAN HELP SO BE SURE TO CLICK ON EGROUP AND WE WILL BE HERE TO HELP YOU BOTH UNDERSTAND THE POST STROKE PAIN. BLESS YOU BOTH. GOOD THAT THE DRS ARE ON TOP OF THE PAIN. YOU MIGHT NEED TO EDUCATE THEM ABOUT CENTRAL PAIN SYNDROME BUT MAYBE YOU GOT LUCKY. TALK TO YOU SOON. MARY SIMPSON FOUNDER OF CENTRAL PAIN SYNDROME ALLIANCE..... . GET THOSE THERAPISTS GOING ON HER REHAB. WITH THE PAIN IT WILL BE ESP HARD FOR HER AS ANY MOVEMENT IS A TRIGGER. BUT SHE NEEDS TO BE DOING REHAB. THE SENASATION IN HER KNEES IS FEELING LIKE THE DRILLED HOLES BUT IN TIME SHE WILL UNDERSTAND THAT ITS JUST NOT SO.

almost 4 years ago
Mary Simpson said...

JOANNE BLESS YOUR HEART. WE LOVE OUR UNDERSTANDING CAREGIVERS. YOUR DAD SOUNDS LIKE HE ON THE ROAD TO SEEING ALOT OF RECOVERY. YOU ARE CORRECT. NEVER LIMIT IN TIME OR RECOVERY. HE WILL SEE SMALLER IMPROVEMENTS AS TIME GOES ON BUT THERE WILL BE IMPROVEMENTS UNTILL HE STOPS FIGHTING FOR THEM. KEEP HOPE ALIVE. WITHOUT HOPE NOTHING WILL CHANGE.

HUGS

MARY SIMPSON

almost 4 years ago
Mary Simpson said...

DEAR gershensongirl

I HAVE SAID BEFORE THAT ONE REASON HE MIGHT KEEP HIS EYES CLOSED IS...HE IS VERY LIGHT SENSITIVE MAYBE. AND DON'T BE ALONE. LOOK ONLINE AT THE STROKE SUPPORT GROUPS. THEY CAN REALLY HELP YOU WITH IDEAS AND JUST PLAIN GIVING YOU PEP TALKS TO HELP YOU COPE. THE FOOTBALL IDEA WAS A GREAT TRICK. HAS HE FAVORITE MUSIC? IF SO, BRING IT TO HIS ROOM.

KEEP UP THE GOOD FIGHT. THINGS DO GET EASIER AND BETTER. "THERE ARE NO LIMITS ON TIME OR RECOVERY"

HUGS Mary

almost 4 years ago
Mysticblndmist said...

I got a call this morning from the social worker on the floor of the hospital that my mom is on and they want me to sign papers to put my mom in a nursing home as they figure she's at the stage that she will stay at. I don't believe this as she is now moving her big toe on her own and I personally think she needs to start a structured rehab. I know she is in a lot of pain and understand that but I believe she can still recover more then she has since the stroke (only a month ago tomorrow). I personally believe at only a month after a stroke thats its a bit to early to assume that someone can't recover more. Any information would be greatly appreciated.

almost 4 years ago
oc1dean said...

Ok, demand to know why they think she will not get better, Ask for a scientific explanation not just the vague, she is like another patient that did not get better, Your doctors are not anywhere close to being up-to-date on stroke rehab. Bamboozle them and ask about mirror-box therapy, passive movement, mental imagery and then ask about NOGO receptors, c3a peptides and what does neurogenesis have to do with stroke recovery. Do not back down, they have no clue what they are talking about. Force them to acknowledge that they haven't read a stroke rehab article since college.

almost 4 years ago
Ranae1221 said...

A month after her stroke, and they are saying she has reached her max potenital? I don't think so. From my experience, it takes an average of AT LEAST 3 months, and I've seen people years after a stroke continue to make progress.

I'm guessing where she is at currently is like an acute rehab or a rehab hospital? It could be that they don't feel THEY can help her right now; there are usually requirements for a certain amount of hours of therapy per day someone has to do. For some people, it is just too much. My grandpa was in one for 2 weeks and they worked him so hard, it actually made him worse. He was back in the ER 3 hours after being discharged.

A nursing home or skilled nursing facility can provide rehab/therapy services as well, and they don't have as high hour requirements as a rehab hospital does. Usually about 25-30% of the residents at a facility at any given time are there just for rehab and return home.

I would ask the social worker at the current place exactly why they are recommending she be moved, on what grounds. Is she no longer appropriate for that intense level of therapy? Has her insurance denied her stay? If she is under Medicare, she and you have certain rights if they are wanting to discharge her and you don't agree.

The point may come that she will need more therapy than she can receive at the rehab hospital. It may be helpful to find out what other types of facilities are available, and when you have time take a look at them. Make a list of questions you may have to take with you. Ask for a tour. Ask to see the therapy gym. Ask what the staffing ratio is. Ask if they provide therapy 7 days per week, and so on.

I hope this helps a bit.

almost 4 years ago
JoanneSF said...

I agree with the other posters, please ask questions as to why they do not feel they could help your mother. Something that I have learned is that while the doctors and therapists are the experts, they expect us to ask the questions for them to answer. The problem is that we don't know the questions to ask because the whole situation is confusing and foreign and stressful.

What helped me was to read as much as possible on my own. Then I could ask questions and then the doctors and therapists became more helpful. I'm still learning every day and I still cringe a little bit when I hear "So, do you have any questions for me?" - only because it took a good two weeks before my answer was "yes". I just didn't know what to ask.

I have a few books that I have read that I found really helpful: Living with Stroke by Richard Senelick, MD and Karla Dougherty Stronger after Stroke by Peter Levine Between Hope and Despair by Rick Davis

Look into books on neuroplasticity - so many studies have shown that the brain does indeed form new connections and many survivors have shown how "miracles" could happen - even years after a stroke and thinking they could not recover any more.

Do not give up hope when it has only been a month.

I send you many hugs and best wishes.

almost 4 years ago
Mary Simpson said...

I AGREE WITH EVERYONE ALSO, THEIR BOTTOM LINE IS THAT MEDICARE WON'T PAY FOR A LONGER STAY. SO THEY ARE PAWNING HER OFF TO OTHERS. IT WOULD BE HELPFUL TO US HERE TO KNOW WHAT ALL SHE HAS IN DAMAGES. WHATEVER HER CURRENT DAMAGES SHE SHOULD HAVE BEEN GETTING SOME THERAPIES BY NOW.

MAKE SURE ANY PLACE SHE DOES GO WILL WORK WITH HER AND YOU. YOU WILL BE DOING ALOT OF THERAPY WITH HER.

I AM SORRY THEY ARE NOT HELPING HER EVEN NOW. DO KEEP TELLING HER TO WORK ON THAT TOE! THATS A VERY GOOD SIGN. MAKE SURE WHEN SHE DOES GET THERAPY THAT ITS FITTING FOR HER CURRENT SITUATION. OFTEN THEY WILL JUMP AHEAD TOO FAR AND OF COURSE NOT BEING ABLE TO PERFORM SUCH THINGS IT WILL BE SAD AND FRUSTRATING FOR HER. TELL HER THAT YOU ARE IN CONTACT WITH PEOPLE LIKE US AND ASK IF SHE MIGHT HAVE A WORRY WE MIGHT HAVE AN ANSWER FOR.

BLESS YOU. HANG IN ..WE KNOW HOW HARD IT IS TO BE THE LOVED ONE ON THIS STROKE JOURNEY ALSO. TAKE CARE OF YOU FIRST THEN YOU CAN TAKE CARE OF HER. KEEP HER SPIRITS UP. WITHOUT HOPE NOTHING WILL RECOVER.

HUGS MARY

almost 4 years ago
Mysticblndmist said...

Personally I am just really confused and the social worker on the floor in which my mom is on has my head spinning and not knowing what to think or what to do.

Her doctor requested that she be moved to the rehab floor but apparently the rehab team refused her rehab because they figure she can't do it and even the slow stream rehab team apparently refused her rehab because of the same reason.... My mom is in alot of pain and doesn't feel like doing physio because it will only make her ache worse and she has now developed an infection in which they are treating but she is in isolation and on top of that depression but rehab would be so good for her. but the social worker wants me to sign her into a nursing home or have a plan by Monday as the hospital will consider her discharged. I just feel like I am backed into a corner and don't know what to do. I am alone on this as her husband passed away 19 years ago.

It seems every time I see a glimmer of hope someone throws it out the window

almost 4 years ago
Ranae1221 said...

Have the been able to determine where her pain is coming from or what is causing it? Truly that would affect any of us. They need to get the pain under better control. Is she on medication for pain? They can also try giving pain medication 30-45 minutes before she is scheduled for therapy so it will help during the session.

Therapy should be able to still be provided, even if she has to remain in isolation for a bit. They likely would just provide it in her room until she was off isolation.

Depression. That's a hard one. How could she not be depressed? Add having to be on isolation and stuck in her room on top of that......it would make any of us depressed. Have they discussed trying an antidepressant? That can be tricky, because the medication isn't going to change the circumstances or make everything better. But maybe it can help her cope with everything a bit better.

It sounds like a nursing facility may be the best option right now. She needs the rehab and the skilled nursing right now. They can work at a bit slower pace so as to not overdo it. Have you had a chance to look at any of them?

I'm not sure what your mom's finances are, but it may be worth also looking into medicaid. Many medicaid plans also provide in home help, so that if she is able to return home, she can have some help. If home ends up not being an option, sometimes an assisted living home works.

Its a scary new world for the both of you right now, and feeling alone, carrying the decision of what to do on your shoulders alone is a very lonely feeling. Please know you AREN'T alone. We are all here for you! Even if all we can do is offer a cyber hug from across the miles.

Your mom is very very lucky to have such a wonderful daughter looking out for her.

almost 4 years ago
Mary Simpson said...

RIGHT ON RANAE.... NOT MUCH I CAN ADD TO THOSE WISE WORDS.

MISTIC.....FIRST YOU SHOULD CHECK AND KNOW WHY SHE IS HURTING. ADDRESS THAT AND THEN MAKE SURE SHE GETS SOME SORT OF THERAPY. IF ITS CENTRAL PAIN CAUSING HER TO HURT. MOST DRS WILL GIVE NEURONTIN/ GABAPENTIN AS A FIRST CHOICE IN MEDS.
IF ITS JOINTS AND MUSCLES PAIN THEN OTHER MEDS WILL BE TRIED. SOME OF THE MOOD MEDS CAN ADDRESS BOTH ISSUES EVEN.

HOW MUCH TIME DO YOU SPEND WITH HER? ARE THERE OTHER FRIENDS OR LOVED ONES THAT CAN COME AND BE WITH HER WHILE YOU GET SOME TIME FOR YOURSELF AND TO VISIT SKILLED CARE PLACES?

HOW IS HER SPEECH COMING? MOST LEFT SIDE AFFECTED STROKEES WILL HAVE THEIR THINKING STILL IN TACT AND THE SPEECH IS MAINLY THE "MUSCLES IN THE MOUTH" NEED RETAINING.

I ASSUME YOU ARE NOT SEEING ANY APHASIA? NOT LIKELY WITH RIGHT BRAIN STROKE.

LET HER KNOW WHAT IS GOING ON AND HAVE HER HELP MAKE THE HARD DECISIONS. OR AT LEAST INPUT. SHE NEEDS TO KNOW "SHE" IS STILL THERE.

BLESS YOU AND GOOD HUNTING FOR A PLACE SHE CAN STAY THAT WILL COVER HER CURRENT NEEDS. WAS SHE LIVING ALONE BEFORE? OR WITH YOU? DO YOU FORE SEE A TIME SHE WILL BE BACK IN YOUR HOME AS THINGS PROGRESS?

PRAYERS FLY FOR YOU BOTH. BE SURE TO TAKE CARE OF YOURSELF. HUGS MARY PS. THE DRS TOLD MY CAREGIVER I WOULD END UP IN A "HOME"...... NO WAY. I NEVER SAW ONE. SO MAKE SURE YOUR MOM KEEPS HOPE ALIVE.

almost 4 years ago
Mysticblndmist said...

Mary Simpson you are truly an inspiration to so many and thank you to you and everyone else for replying.

I personally don't know where the pain is coming from and when I ask questions to the nurses or doctors I get no answers. My mom says the pain is throughout her entire body and on the left side is the worst. I would figure that although the pain is a terrible thing that it is still a good sign.

They did have her sitting up in a chair a few weeks ago but that was only once.

Her speech has cleared up nicely for the most part, she speaks very low though but otherwise it seems to have cleared up nicely.

I go to see her every day for a few hours a day, and I am really the only family member that does.

She was living with me prior to the stroke and would personally like to have her live with me again

almost 4 years ago
Mary Simpson said...

HOW GREAT IT IS TO HEAR HER SPEECH HAS CLEARED AND THATS WITH NO THERAPY .... OUTSTANDING. YES, HER VOICE MIGHT BE WEAK . MINE WAS /IS FOR THE MOST PART. GETS WORSE IF I AM TIRED.

AS FOR HER PAIN. PLEASE ASK HER IF ANYTHING IN THIS FOLLOWING DEFINITION FITS HER. IF IT IS CENTRAL PAIN AND THE DRS ARE NOT STARTING HER ON GABAPENTIN ASAP THEN GET ON THEM! [ [NEEDS TO BE GIVEN IN SMALL AMOUNTS AT A TIME TO ADJUST AND TO LOWER SIDE AFFECTS. ]

THEY USUALLY KNOW SO LITTLE ABOUT CENTRAL PAIN THEY ARE NOT ON TOP OF IT. AND THE SOONER SHE IS HELPED THE LESS PAIN SHE MIGHT HAVE LATER. SADLY NO, ITS NOT A GOOD SIGN. ABOUT 15-20% OF STROKES HAVE CPS AS A LASTING AFFECT.

HANG IN. I AM GLAD SHE WILL HAVE YOU WHEN SHE GETS TO GO HOME. HUGS MARY centralpain101@aol.com]

I CAN NOT BELIEVE THEY ARE NOT COMING TO HER TO AT LEAST TRY SOME THERAPY! PLEASE DON'T LET THEY WRITE HER OFF. MAKE BIG STINKS AND LIGHT A MATCH UNDER THEM.

http://www.centralpain.org http://health.groups.yahoo.com/group/CPS_ALLIANCE/

CENTRAL PAIN SYNDROME A DEFINITION

A neuropathic pain with various names.....In an effort to get everyone on the same page term we use is  Central Pain Syndrome We will often use "CPS" for short.

Synonyms: Also known as

Central Post-Stroke Syndrome Dejerine-Roussy Syndrome Central Neuropathy Posterior Thalamic Syndrome Retrolenticular Syndrome Thalamic Hyperesthetic Anesthesia Thalamic Pain Syndrome

Central Pain Syndrome is a neurological condition.

24/7 Sensations can affect us all differently, in different places on our bodies, and at different levels of pain and suffering.

Extremely difficult to diagnose. Often sending the patient to many doctors to find one that believes in their suffering. Finding a doctor who is willing to treat and work to find relief for the person that suffers with this savage pain becomes a miracle in the mind of those that suffer.

Causes: Central pain syndrome occurs because of injury to central nervous system... CPS can be caused by stroke, multiple sclerosis, epilepsy, Parkinson´s disease, toxins, tumors and trauma to brain or spinal cord,  any diseases that eventually reach the central nervous system.

Sensations: It can be a steady, sometimes deep burning, aching, cutting, tearing, pressing, lacerating  mixture of pain sensation. Pain may be moderate to severe in intensity.

CPS may be  described  as weird sensations like Burning: "A chemical, not a purely physical burn" , "bone cold",  "wet" sensations, tingling, a "pins and needles", a " ballooning" sensation, throbbing, the feeling of a dental probe on a raw nerve, even metallic.

Intense skin reactions can accompany these symptoms, such as burning, stretching, tightness, itching, or a crawling feeling. CPS can be aggravated by any light touch such as the feel of cloth on skin making dressing an ordeal, as can the touch of a sheet or blanket. The touch of a loved one, may overwhelm the brain with the pain from CPS.

Intestinal reactions Gut pain, stomach  nausea and vomiting can be a part of CPS.

Numbness The hands, feet, head, and trunk can be affected with a numbness that is painful, and does not offer any relief, only adding to the pain.

Onset CPS  can begin from day one of the stroke/injury or can take months, even years to make it's appearance.  Central Pain Syndrome can be a life threatening condition: It can often cause depression, anxiety, anger, frustration and hopelessness.. When a person rates the pain as a 9 or 10 on a pain scale, and there seems to be no relief in sight, with no hope or understanding or support from family and professionals, they may even come to feel that suicide is the only way out.

Triggers and Sensitivity reactions Stress, anger, depression. Movement, daily activity, ROM exercising, tiredness. Exposure to sun, rain, cold, snow, breezes, AC, drafts, unseen sun flare activity, barometer changes. Environments of warmer and cooler from the particular person´s comfort zone. Added pain or swelling. Light touches of another person, blanket, clothes, splints. Sudden movements: Yawning and other reflexive involuntary movements such as sneezing, being startled, loud noises, bright lights and even vibrations as from riding in a car.

Light sensitivity for the eyes, noise sensitivity for the ears can be  triggers for higher pain levels.


7 Types of pain sensations

Any or all of these pain types can overlap. A person could have one or all of these that can come and go as time passes.

  1. Burning dysesthesia: A mixture of pain sensations in which persistent light touch is perceived as a thermal sensation. There are four overlapping subtypes.

Burning: "A chemical, not a purely physical burn"; "A mentholated burning"; burning it up with fire and acid".

Cold: "Like touching dry ice"; "bone" cold.

Wet:   Wet and uncomfortable underneath the burning."

Motor or Kinesthetic Dysesthesia: A feeling of cramping and contraction associated with burning. "A terrible fatigue in my muscles, "A feeling of drawing, pulling, crushing."

  1. Hyperpathia: Heightened response to a noxious stimulus.

  2. Allodynia: Pain from a very mild stimulus. Can also describe referred pain. Can relate to touch, location, temperature or muscle loading.

Touch: "Light touch from clothing becomes unbearable after a few minutes, like an awful sunburn"; "Paper laid on the legs begins to burn unbearably after a minute or so."

Location: Touching the face might show up as burning on the outside of the forearm. Sitting long enough for the skin to burn can become  burning out to the side on the legs and behind."

Thermal: Picking up a warm drink, it feels hot in the hand. Warm ambient temperature sensitizes the skin so that all the other pain features appear more easily."

Muscle loading: Movement makes the body unbearably sore. The day after exercise, the body might have  awful feelings of lactic acid buildup. Lying in bed can feel like sleeping on rocks.

  1. Shooting or 5. Lacerating: Sharp stabbing pains with an electrical quality.

  2. Circulatory: A very common type in which circulation feels compromised.  The feeling of pins and needles in parts of the body.

  3. Peristaltic: Feeling of fullness,  burning, cramping, nausea or distention.

===========================================

Central Pain Syndrome can require a multidisciplinary team of pain specialists. Anesthesiologists, neurologists and neurosurgeons, rheumatologists, psychiatrists, physiatrists, family doctors, nurses, physical therapists, acupuncturists, massage therapists, and chiropractors all have different methods of treating chronic pain. www.painonline.org and www.painonline.com for more detailed infomation

almost 4 years ago
Mysticblndmist said...

Thank you for the advise and everything. I am writing alot of this down and alot of the questions that many have told me to ask and request the things that people have told me to and going in there tomorrow and see what happens and hopefully be able to fight for some of the rights my mom must have.

I have written down many questions to ask seeing as they have not answered any of my questions...including what kind of a stroke it was or the extent of the stroke..damages etc

I am in Canada but don't imagine therapy and medication changes to much from one place to another. I thank everyone for sharing their stories and giving me ideas of what to ask and such

almost 4 years ago
Mysticblndmist said...

Well I have finally gotten one answer, what type of stroke it was.

Ischemic stroke....they presume embolic from atrial fibrillation in the right middle cerebral artery distribution

almost 4 years ago
Mary Simpson said...

IF I AM THINKING RIGHT. THAT PUTS THE STROKE IN CENTER OF BRAIN. SO YES ITS NEAR OR IN THE THALAMUS. CENTRAL PAIN IS ABOUT 100% CHANCE WHEN THAT AREA IS HIT. SO I AM NOT SURPRISED SHE IS HAVING SO MUCH PAIN. DID YOU ASK HER ABOUT THE THINGS LISTED IN THE CPS DEFINITION? SHE MAY NOT HAVE MANY YET. DO KEEP ASKING OVER TIME. SADLY CPS IS ALWAYS IN CHANGE. I HOPE THEY WILL GIVE HER GABAPENTIN OR LYCRIA AND SHE WILL RESPOND WELL TO THEM.

HANG IN THERE AND TELL YOUR MOM WE ALL KEEP HER IN PRAYERS. WHAT HAVE YOU DONE FOR YOURSELF? YOU MUST NEED A REST BY NOW.

HUGS MARY

almost 4 years ago
Mary Simpson said...

I MIGHT ADD THAT GENERIC GABAPENTIN OFTEN DOES NOT WORK AS WELL AS THE BRAND NAME NEURONTIN. ESP IF ITS IN PILL FORM. THE CAPSULES SEEM TO WORK OK. NOT EVERYONE GETS RELIEF FROM NEURONTIN/GABAPENTIN BUT ITS USUALLY THE FIRST THING TO TRY. HUGS MARY

almost 2 years ago
Mary in CT said...

My 77-year old mother has Alzheimer's and 2weeks ago had an apparent stroke. A clot in either her cerebellum or brain stem is suspected, though all CT scans show nothing. Before this happened, Mom had some aphasia, though age could say some short sentences. She knew who we were, and was still oriented in the present day. She couldn't manage a fork anymore, but would willingly eat what we fed her. She could no longer walk and was incontinent, but she was cheerful and loving and happy.

After the event, she was intubated for a time to protect her airway, but was weaned from the ventilator within a few days. She sleeps a lot, but has progressed to the point where she will turn her head and look at someone who says her name. She will watch people walking across the room, tracking them with her eyes. She also does a fair bit of staring into space, and when she does look at you, there's no sense of recognition.

She does not speak, and does not follow any commands/requests (squeeze my hand; blink twice for "yes"). The hardest thing is she won't cooperate with swallow tests. She clenches her teeth if we try to place any food in her mouth. For now, she's on an NG tube to give her strength and time to recover.

What we're struggling with now is where we go from here. A geriatrician offered the opinion that the stroke pushed her into last stage Alzheimer's, that she won't recover more than she has, and that we should take her home and provide comfort care until she passes away.

Today, the doctor in charge of her case gave an opinion that she may recover more, to her baseline. He recommends inserting a PEG tube which would allow her to be taken home and cared for as she recovers. (I'm committed to keeping her at home and out of a nursing home. We've had a live-in care-giver for her for nearly 2 years.)

She has no living will, and I am her health care agent. My quandary is which do I believe? If she's now last stage Alzheimer's, it would be cruel to insert the tube and keep her in a state that will never get better. But if she's a stroke victim with a chance to live a life like she'd had, I'd hate myself for robbing her of the chance.

I love my mom deeply and am not ready to lose her. But I want to do the right thing by her, if I could just be certain what that is.

over 1 year ago
Minettili said...

Hi Mary, my name is Livia and I live in Miami. My mother is 86 and she had her second stroke a month ago. She was doing ok with recovery and out of the sudden we were at ICU because her blood pressure became too low. She struggled with this for a month and had to be hooked to an iIV with norepinephrine which is adrenaline and is usually given to patients to resucutate them, in this case was for her heart to pump the necessary blood to her organs. They told mr to put her in hospice because she could not be cured. She is out of the medicine now and keeping a decent BP. I am happy i refused hospice, it felt to me as if i was killing her. Now we are facing another problem, she cannot swallow properly there is danger that she could aspirate food to her lungs. They are feeding her through her nose but on Monday she will get a peg. She wants to go home so bad, even though her vascular dementia got worse at the hospital she still recognizes us, her speach is not that clear and there are times I also think if I am doing the right thing. I have no siblings, is my decision. It is ver hard, but i think when her time comes God will take her. I cannot starve her. She has shown me she is a fighter and does not want to give up. I will be by her side. I will take her home with us.

over 1 year ago
Mary in CT said...

Good luck in your fight for your mother. I hope she continues to get better.

Mine passed away 3 weeks ago. A day after telling me he thought Mom could recover to baseline and could brnefit from a PEG tube, he took it back and said she would not recover. We came home in hospice care and she died 3 days later. Pneumonia took hold and she could no longer fight. I miss her terribly and frequently second guess the choices I made for her.

over 1 year ago
Tasmin said...

There are some excellent videos from stroke victims on youtube.

I am a nurse but cannot add anything except that to say that I have seen some miraculous recoveries.

over 1 year ago
Mary in CT said...

My mom passed away in January.

over 1 year ago
Lindasmisty said...

my mother had an ischemic stroke 10 days ago, left side of her body is paralyzed, she can't swallow properly, she does speak sentences, but will not open her eyes, sleeps a lot, and is fighting an infection they are treating with antibiotics. When awake she responds to questions and tries to do what the therapist asks. My problem is she has a nose feeding tube they say can only be in 2 weeks and they tried to put in a peg tube yesterday, but could not under light sedation due to her colon placement. They said it would have to be done under general anesthesia and her Dr says they can't do that because of her condition. However, if they don't she will have to come off of the nasal tube and if she still can't swallow correctly, they will just let her die. How do I get them to surgically do the peg tube, even with the risk of dying during surgery, she will surely due if she can't swallow?

over 1 year ago
Mysticblndmist said...

I forgot to update this . My mom passed away four months after the stroke.(February 13 20122) It is still unclear as to what exactly caused her death that morning

over 1 year ago
Mysticblndmist said...

2011*

over 1 year ago

I was her grand daughter !!!!! I remember waking up with a cold feeling at my toes and then I forgot what happened after that but I remember waking up before she died with that saying of the devil and the angels and then i went back to sleep

over 1 year ago
Minettili said...

Hi this is Livia, my mom passed four months ago. The agony of not having her is indescribable. The pain is in my chest every time I remember she is not with me any more and she won't come back. I feel lonely, unprotected (even though I was protecting her) we were one and now my best half is gone, I will never be the same again I know that for sure. Nothing prepares us for the death of a mother, she was everything to me, everything I am is because of her. I hate myself the times I had little fights with her, I hate myself for the times I was so exhausted that my patience was gone. I should had been stronger for her, she was the best mother, she took care of me so dearly. She was my mother and my father and she was always there for me, like a soldier, no matter what. I feel I could have been a better care giver, I have so many regrets. I should have quit my job and stayed with her, but I had no help, I wish I could have been more relaxed, be better informed on her disease, I don't know what else I could have done to help her, but I will always regret her death. She was one week to become 87 years old. I need my mom, I know she is somewhere else with no more pain, no more pills, no more hospitals. I took her home and in two days I had to take her back to the hospital, her heart was to weak and wasn't pumping enough blood to her main organs, everything got complicated at the end. I was with her at the time she died, I would not leave her side. She followed me with her loving eyes, everywhere, she did not want me to close my eyes. She knew her time had come and she wanted me to protect her. I could not do anything more, I did not want her in a hospice, but I did not want her hooked to machines and suffering more. I was there when she went, she just coughed and that was it. I prayed and prayed out loud for hours, I knew she felt comforted by praying, I hope I helped her go in peace. She did not want to leave me and I wanted to go with her. After four months I still can't live without her, she was my strength, my everything, my mom is gone and I can't believe or accept it yet.

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3 months ago

First and foremost, my thoughts are with every one of the posters before me; we're all walking in the same shoes...unfortunately. My mom suffered a right sided stroke 5 weeks ago. When I found her she was conscious, but disoriented. Her left side was totally gone. After being in the hospital ICU for 3 days, she was moved to a Rehab Facility. Currently she is receiving OT, PT and Speech every day. Some of the feeling is starting to return to the left leg and left arm from the elbow up. They are currently working with her to begin standing - and she has - assisted. She (even) took her first steps last week. She doesn't seem to realize what a tremendous feat this is for her! So where she's making progress in that area, it is more her mental state that concerns me at this point. Her baseline was age related dementia - lived on her own and was able to look after herself. I believe the stroke has exacerbated her mental state to the point where she (most times) speaks of seeing ghosts, and constantly "sees" people running around killing each other. I call those times - her "dark days." There is nothing positive...she's always focused on the negative side of life. As I am the one who has looked after her since my dad passed away 8 years ago, she naturally "hones" in on me - constantly calling my name. The nurses in the facility always relay the information to me. Yet when I'm there with her, it doesn't stop - she's started this constant whining - like a child would do; eyes shut most of the time. When I ask her to open her eyes, she replies that she doesn't want to see her life. It's so terribly sad; my heart goes out to her because I don't know what to do. As much as I try to divert her from the "dark" side of her life, it doesn't work. The few interests that she used to have don't interest her at all any longer. I take her outside for a change of scenery and she talks of being unsafe and she's afraid for us - that someone is going to hurt us. She becomes so anxious, I have to take her back inside. There is talk of the doctor possibly putting her on a mild sedative - although that scares me a bit....but carefully monitored, it may help her. I've cut back on my time there by half - hoping that will help her become more acclimated to her new surroundings without me....and for my well being too. I'm there about 4 hours each day compared to the 8 at the beginning. I'm learning that I have to take each day at a time and most of all to try and stay positive despite what I see every day so far.

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