Hemmorrhagic Stroke

[Denise]

Hello. I'm new to this site as well as being a caregiver to my 48 yr. old husband who suffered a hemmorrhagic stroke in 12/08. We are 8 mos. into the recovery and if I look back to when this all first happened I can say he has made progress. However, he is not yet independant, he needs alot of assistance. This is very difficult as we have 2 young children ages 7 & 11. My husband had a vessel rupture on the right side of his brain leaving his left side affected. He can speak, has some short-term memory deficits, but right now it's the physical deficits that are the most difficult to deal with. The cause was due to high blood pressure which my husband was never diagnosed with and did see his physician for routine physicals yearly. I just want our lives back and don't know if that will ever happen. Dr.'s said this will be a long road but I wish I knew how long and what he will get back. If you have any information I would appreciate it. Thanks

[Kimberly and Lars]

Hi Denise,
My wife Kim suffered an ischemic stroke about 17 months ago. She was 48 and we have 2 children now 9 and 11. Initially she lost her speech and right side. Then later on had a seizure and developed thalamic pain syndrome which has been very debilitating. She has gotten most of her right side back but is still working on her speech. The answer to your question is that every stroke is different and no one can really tell you how long it will take and how much your husband will get back. I can tell you the brain is an amazing thing and the more you stimulate it in what you want to improve the more likely that those areas will improve. An excellent book on the subject is "The Brain that Changes Itself," By Norman Doidge. If you want to talk more email me at [e-mail] and we can exchange phone #'s.
Take care, Lars Hawley

[Sharon Wagoner]

Lars,
Has your wife had additional seizures or just the one. Is she on seizure medication? My husband had several seizures, we eventually found out, by looking on the internet, that the medication the doctors had prescribed for his muscle tremors baclofen lowered the seizure threshold. Had to change doctors to get one who would listen. His seizures are now under control, and he has not had one in over a year.

Sharon Wagoner

[Kimberly and Lars]

Hi Sharon,
No we just had the one grand mal seizure. They had her on wellbutrin at the time which also supposedly lowers the seizure threshold. She is on Depakote now to stabilize her moods and it also prevents seizures.
Lars

[Sharon Wagoner]

Lars,
I am so glad you only had to go through that once. I would not wish it on the worst person in the world, little lone a loved one. How long did it last? Hope it was a short seizure. My husband had very long ones. I was obliged to give him breaths nasally due to the rigidity of the rib cage and his clamped teeth, which did very little good due to the rigidity precluding much inflation. They now call grand mal seizures tonic-clonic seizures. I learned grand mal too in my earlier classes.

I am proud of you for hanging in there, too many spouses ditch there partner when the going gets rough.

SW

[Kimberly and Lars]

Sharon,
The seizure lasted about 4-5 minutes. She stopped breathing, turned blue and went unconscious. This stopped the seizure and then Kim started breathing again.
For better or for worse. I try to find the better even in the worst. Today is our 15th wedding anniversary.
Her thalamic pain is one of our biggest challenges right now. It really destroys Kim's desire to live.
Lars

[Sharon Wagoner]

Lars,

My husband turns completely blue too. It scared me so much. It nearly destroyed me to have to hold him while he repeatedly almost suffocated. He was so frightened when the seizure was starting. All I could do is say, 'It's all right I've got you," and give him breaths.

What kind of treatment are they giving your wife for the thalamic pain?
I found an article that mentions several treatments. Gabapentin is one of the drugs they mention. It is one of the cocktail of drugs that has stopped my husband's seizures. The article says that it sometimes helps suppress thalamic pain.

http://www.strokesafe.org/resources/thalamic_pain_syndrome.html

We go on because we must. I'm afraid I am getting very bitter about how much I am all on my own to fight the good fight, but we must not just accept defeat. We must keep trying to find the information to help us fight this thing. I hope you can find some answers.

[Kimberly and Lars]

We have tried many medications for thalamic pain. Right now she is taking cymbalta, oxycontin, gabapentin. Found a good research article that used ice water in the ear to interrupt the pain signals, did not work for us. Next is acupuncture. Keep your spirits up and don't forget to enjoy the day as it rushes by.

[Sharon Wagoner]

Kimberly & Lars,
You guys have been through a lot. Does anybody out there know of an article or something that has worked for them for thalamic pain? I suggest you two start a thread on this problem so it can get more attention. I found this site because of Denise's thread turning up on a search I ran.

[Sharon Wagoner]

Denise,
How much of the right hemisphere of your husband's brain was damaged? What are his physical deficits? Is your husband still in physical therapy and what kinds of therapy is he doing? Have you applied for disability?

My husband had a massive stroke, on the same side as your husband's stroke, 2 years ago. He was almost helpless at first, but we have come a long way in his recovery since then. He still shows improvement after over 2 years.

The bad news is that generally people who have strokes on the right side of the brain affecting the left side of the body do not regain function as well as those who have a stroke on the other side of the brain. I have now had to accept that my husband will never be able to work again.

The good news is that there are a number of new therapies out there. Also all that stuff about recovery slowing after 6 months is a lot of guff in my experience. We should talk.

[Denise]

Hi Sharon,
Thanks for responding. My husband had a large bleed I don't quite know exactly how much was damaged however, the resident on call that night when Mark arrived in the emergency room felt he was unsalvageable. The neuro surgeon felt differently and removed Mark's bone flap and evacuated the blood. Mark was in ICU for about 7 days and was trached and pegged. He remained in the hospital until 12/31 during his time in the hospital he couldn't even hold his own head up....he was helpless he looked like a rag-doll. He did speak on 12/24. His physical deficits at that time were visual, couldn't walk, couldn't move his left arm. He didn't even know his left arm was his...he thought it was another man's arm. He was transferred to Magee Rehab Hospital on 12/31. They would use a hoyer lift to get him out of bed and into a wheel chair for therapy. He had to wear a helmet until it was time to put his bone flap back in. He slowly was able to hold up his head and slowly became more vocal, which I am grateful for that. The trach was removed before going to Magee and the feeding tube remained until late Feb./early March. He was discharged from Magee on 3/21 to home. At that time I had to assist him with transfers, anything that required moving him. His right side was good, but the left side wasn't able to do much. He has left visual field cuts in both eyes. He then continued therapy in the day hospital program for about 4 weeks, then oupatient therapy untill his surgery to replace his bone flap on 5/11. The surgeon had to use titanium instead of Mark's bone as it didn't preserve as well as he wanted it to. Mark remained in the hospital for another week and fortunately after advocating for him as I have done throughout this whole experience he was discharged to Magee Hospital again. He was discharged from Magee to home on 6/13. He was a bit stronger then and the replacement of the bone flap helped him to feel better as well as no more helmet to wear. He has continued to get stronger and more alert. So at present Mark's physical deficits are left visual field cuts in both eyes, which improved slightly and he works on looking to the left and wears a prism on his glasses. He has no movement in the left arm at all. His left leg is stronger and he is able to slide it forward when walking at therapy as well as when I walk him to the bathroom. But walking is still a work in progress......He isn't independent. We have two small children ages 7 & 11 who also keep me busy.....I also don't know if Mark will ever be able to work again as driving was part of his job and his job was very physical. I did apply for social security disability in feb. and he was just recently approved. I also work part time too! I would look forward to speaking with you. I'm glad you feel that recovery continues well after 6 mos. because we need more recovery. Again would love to talk.

[Sharon Wagoner]

My husband's stroke is a similar story. I have so much I want to say to you from my experiences over the last 27 months. I am trying to come up with a list of things that could help you.

So glad to hear the disability was approved. Do you still have insurance? Does your husband have seizures?

Do you have any family or friends who can and will help you? I know that exhaustion has become as much your enemy as your husband's stroke.

You are to be commended for all your hard work and sacrifice for your husband. Most people would run off screaming if they had any idea of what life has been like for us. Mostly they don't want to know.

My email: [e-mail]

A "yard of tin" is what they called the horn the mail guard blew when a Colonial stage wagon stopped to pick up a mail bag.History is my thing.

[Sharon Wagoner]

Denise,
My husband was also not expected to survive his stroke. I was told that it had damaged 70% of the right hemisphere of his brain. He was in ICU for 2 weeks and a rehabilitation center for 6 weeks. He was sent home because he was not making enough progress to meet insurance requirements to continue a stay in such expensive care. His feeding tube was remove 3 days before he came home. When he came home he was nearly helpless and could not sit without pillows to hold him up and only had a little movement in his left hip. He could not even stand to do a transfer. I had to stand against him and wrap my arms around him with my right leg along the outside of his left leg to keep his knee from flopping out and giving way. He could not release his bladder to urinate and so had to be cathetered every 4 hours.

I too felt I was in a nightmare and wanted to wake up. My brilliant, healthy, active, husband was as helpless as a baby and could not quite follow what was going on around him. I had to get up every 2 hours all night to help him turn over and had to position a large number of pillows around him to support his paralyzed limbs or he would be in pain. By trial and error, I eventually realized that when he was lying on his right side a cylindrical or dog-bone shaped pillow under his upper arm with another fat pillow placed in front of him to support his forearm and hand relived much of his shoulder pain. I also supported his paralyzed left arm in various ways throughout the day to minimize sublexing or the tendency of the arm to stretch the tendons allowing the shoulder to develop a space between the top of the arm and the shoulder socket. But the arm had to be stretched and manipulated to prevent the muscles shrinking up by being bent and close to the body all the time. A physical therapist taught me these exercises, but I had to be careful not to raise his arm above 90 degrees or it could twist out of the shoulder socket.

With frequent manipulation and resistance application he eventually moved his knee and after many months his ankle. Once he could stiffen his knee, he stood at the counter where he could use his right hand and leg to support him and placed weight on his left leg for only a moment at a time to strengthen it. Since around 1 year after the stroke he has been able to walk slowly and haltingly with a quad cane. We continue to work on exercises to strengthen his thigh muscles and on fine control of his knee position.
This is my husband pushing his cat in the wheelchair the physical therapists thought he would be using the rest of his life.