My husband suffered a rather large brainstem stroke as a result of a right vertebral artery dissection May 13th 2018. Lateral medullary syndrome.I'm interested to hear of any others in this community having suffered similar stroke.
He is home now after 5 weeks icu and 5 weeks neuro ward, then 9 weeks in patient rehab. Life is tough, but working on all therapies keeps us extremely busy.
Hi Julie
I am sorry to hear of your husband's stroke. I am glad to hear that he is continuing with his rehabilitation, and I can imagine it is a very busy time for you both.
It is great that you have reached out to the EnableMe community. There was a previous post by Sue who was also diagnosed with lateral medullary syndrome some time ago, you can find the link here. Peter also had a lateral medullary stroke in 2016 and you can read his forum post here. You might like to reach out to Sue and Peter, and I’m sure if there are others in a similar position to your husband, they will comment on your blog.
There is also a Facebook page https://www.facebook.com/groups/wallenbergsyndrome/ which has been mentioned in Peter’s forum on Lateral Medullary Stroke. This might be another opportunity to interact with others who are in a similar situation.
There can be a variety of symptoms with lateral medullary syndrome and a lateral medullary stroke, and each person is different. Ongoing rehabilitation and therapy is generally focused on the symptoms that your husband is experiencing. I am pleased to hear he is continuing with his rehabilitation.
If you would like to speak with a health professional about your husbands progress, you can call us here at StrokeLine on Ph. 1800 787 653.
Take care both of you
Siobhan (StrokeLine)
Hi Julie,
Here are some answers from the Facebook community:
Jorge Ampuero Villagran I had a pontine stroke 3 and a half years ago. I still have balance issues, but back to work 2 years ago. Tai chi has been my rehab tool. Never, never give up!
Lee Edwards I suffered an aneurysm bursting in the base of my brain stem, brought on by severe vomiting, caused from food poisoning. Extremely lucky to be alive. I don't remember anything after ambulance brought me to hospital, three weeks is wiped out. I remember Rehabilitation Hospital for the next two months. Extensive OT and physio. Basically reprogrammed. That was 7th March 2006. I have severe balance issues (vertigo) and my eyesight has suffered terribly. Apart from that, I can't really complain. Very grateful for all medical and family support at that time.
Diana
Hi Julie,
There are more comments fro you
Sarah Macfarlane Hi there, come & join this closed group on Facebook that is specifically for survivors of this type of stroke, it is a great little worldwide community:
https://www.facebook.com/groups/wallenbergsyndrome/
This is a challenging stroke, however appropriate rehab, & time will very likely see considerable improvement. The key is sourcing knowledgeable people in allied health to help you along the journey - experienced Neuro Physio’s can make a lot of difference. Fatigue can be very challenging in this type of stroke, & an Occupational Therapist can be incredibly useful to help manage this. It is not a well known or common stroke, & symptoms & issues vary for each individual, & can vary from the medical textbooks ... It is common for some issues to respond well to rehab relatively quickly (ie within 6-12 months or so), & also possible that a few new symptoms & challenges may appear - so join the Facebook group above, as there is always someone there who has personal experience of symptoms & who will be further down the track, so will be able to provide reassurance, advice, & tips for the journey. It can be hard work, & I certainly understand how busy you will be at this stage. The good news is there’s lot of people out there doing very well following this stroke. Also, don’t believe any ‘advice’ about there only being a 6 month window of improvement after this stroke - it is true that there is a lot of relatively rapid improvement during this window of time & that it is a very important time to focus on rehab, but this stroke continues to improve with time, & responds well to rehab over the next 2-3 years as well. Life will look a lot better in 1 Year, & even better in 2 years time. Best Wishes.
Robyn Davis Hi Julie,
I had a Left PICA ischaemic stroke in August 2015 at age 58. I have Lateral Medullary Syndrome ( Wallenberg Syndrome).
I spent 1 week in the Stroke Ward at my large local hospital. I then spent 4 weeks in a Private Rehab hospital run by Ramsey Health. When I arrived at the Rehab hospital I was unable to walk unaided as I had no balance. When I sat up or stood up my body would go to the left. After weeks of Physiotherapy twice a day I progressed from walking with a large walker with a belt around my waist with support of physio to be able to walk unaided. My husband would visit me daily and we would walk around the hospital initially with the various walkers and then unaided. Initially I was unable to get out of bed and needed help to toilet etc.
3 years down the track I suffer from neuropathic pain on the left side of my face which can at times drive me crazy. (My neurologist prescribed Lyrica for this. I take 75grams nightly) I have sensory issues on my right side which are manageable. One example of my sensory issue is if I put my hand in hot water I don’t feel the heat but feel a sharp pain. Moral to the story “don’t use right hand to test water”!!! At the time of my stroke I was doing casual teaching as I had retired in 2012. I’ve been able to return to teaching a day a week or fortnight (my choice). I make sure I steer clear of any balls in the playground as I had been hit in the head with a soccer ball a couple of days prior to my stroke. I drive and basically do everything I could do before. Sometimes my balance can be a bit wonky or I can feel a bit light headed but other than that I’m good. Going down a set of stairs requires a lot of concentration as I have this fear(unfounded) of falling down the stairs.
Time is a wonderful healer. Try to take each day as it comes and offer your husband as much support as he is willing to accept.
Also make sure you look after your own physical and mental health. I’m happy to answer any questions you may have. Take care