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    wallenberg syndrome and stroke
    mareg4 posted:
    I am wondering if anyone has experienced Wallenberg syndrome with stroke. I am 47 years old and suffered a stroke while running a 5K last august. I am left with some balance issues and dry eye syndrome and loss of temp sensation on left side of body. I cannot seem to get an answer as to when, if ever, these symptoms will fade. Any response would be helpful. thanks.
    unknown responded:
    Dear mareg4,

    I would suggest if you cannot get answers from your doctor (s), that a second opinion or new doctor may be in order. I found this information about Wallenberg's Syndrome at the National Institute of Health's website (this is not a WebMD site and we cannot guarantee content).

    Best wishes,

    amiee1964 responded:
    Hi Mareg4

    My husband had a wallenberg syndrome stroke 2 years ago. His balance issues have faded alot but he still deals with dizziness on a daily basis, but not the vertigo he had before. His dry eye has completely gone, I would say for him that took about 1.5 years to get better, and the temp sensation he still deals with on a daily basis, He is on a new medication that really helps with the pain that the temp sensation causes.

    Remember these are his experiences and time frames, everyone is different.

    He is doing very very well now, We have adjusted to our new normal and are very content with it. Give yourself time and don't beat yourself up, you are still healing.

    mareg4 responded:

    thank you for your response. This gives me some insight regarding my own healing process. There is little info on Walleberg and I was not sure how many people are actually afflicted with this type of stroke, which the doctor told me was a rare type of stroke. thanks again. Marianne
    Rosthau responded:
    I suffered a stroke due to Wallenberg's syndrome over 10 years ago when I was 39. I am an aerobics instructor and have been physically fit all of my life. After the stroke I suffered with several setbacks. I had to learn to swallow, balance issues, including vertigo in the beginning, dry eye, loss of sensation, speech impediments. I was able to eat normally again, dry eye, tone of voice, balance through alot of had work and attitude. I maintained a full time job and instructed aerobics after the stroke. I did not regain any of the sensation in my right side and have difficulty sleeping on one side due to the danger of choking on saliva. I have learned to live with these annoyances and have not let it effect my life. I feel it could of been a lot worse. About two years after my stroke I suffered night sweats on a regular basis. I did not investigate this because I didn't think this had anything to do with the stroke. The night sweats eventually turned into full blown pre-menopause symtoms about 3 years after my stroke. I am currently still experiencing the symtoms and I am having trouble getting any relief due to estrogen being the only treatment for this and the risk stoke recurrence. I am seeing a stroke specialist at UVA tomorrow and I will keep you posted with the RX. I am currently on the anti seizure drug called Gabapentin to help with the hot flashes which helps to keep them under control about 50%. This does not help with any of the other symtoms. I hope this helps with your question. Again, with a positive attitude, recovery can be accomplished. Good Luck and keep active!!
    SouthwestGal responded:
    Hi all- My 50-y-o husband suffered a Cerebellar Stroke this past Easter, which is manifested as Wallenberg Syndrome (loss of swallow reflex, slurred/growly speech, inability to walk due to balance / coordination issues). He was a high caliber athlete (our state champion in Racquetball, played high level Golf, squash, table tennis. He was always active). Of course, he was misdiagnosed at the Urgent care, PCP, and ER for the 1st 12 days while his symptoms were not as pronounced: slight balance issues (which hit him while playing Racquetball on 3/31) and swallow problems were present (they thought it was an infection - flu going around - w/ vertigo rather than balance & chest coughing but it was actually gagging/coughing due to aspirating fluids and food into the lungs due to inabilithy to swallow). I can't believe the ER missed it. We are into our 7th week, since the Easter morning he awoke vomiting, slurring words, gagging & inability to walk at all. He is slowly regaining his swallow (he now can eat smooth, soft foods; his PEG feeding tube was removed last Friday). He can walk with a walker slowly but unassisted and his speech is getting clearer but still slurred and growly, esp when he is tired. I have heard that the 1st 12 -16 weeks are the crucial, 'regain function' timeframe, up to 6 mos though progress can occur after, it''s just much slower & harder to obtain. My worry is that his fatigue is so pronounced that it is difficult to get him to work outside of rehab. I know it's a combo of the stroke fatigue, all the meds he's on (Lipitor, Toprol, Gabapentin, Amytripitline, Plavix, Percocet) as well as depression. I hate for him to lose valuable time working towards recovery but also feel for his situation he's in. He's going through those stages of grief, and now is in the anger, 'why me?', despair stage. He worries he will never play Golf or do the other things he always enjoyed. Not sure what I can do to help him other than providing the love , support & caregiving that I'm doing.

    Any suggestions, ideas are much appreciated. Thanks all- Nancy / SWGal
    mareg4 responded:
    also was misdiagnosed in the ER. The first few days were horrific in the hospital with vertigo, double vision, vomiting, imbalance, inability to walk etc. The doctors initially told me I had MS or a brain tumor. It was not until a week and a half later that I was finally diagnosed with vertebral artery dissection with Wallenberg. I was then sent to a rehab facility for two weeks to learn to gain my balance and walk again. I went from running a 5k to learning how to walk. I came home and after several weeks I was able to walk on my own with some balance issues that remain today. Each week gets better. I am not able to walk on my treadmill for 3 miles at 45 minutes, but I do have to hold onto the handles. Yes depression is part of the process, but it does get better, and I am determined to get stronger physically with each passing month. My stroke happened on August 23, 2008. Tell your husband to remain positive and that it takes time to heal. I do notice that I sleep more now but they tell me that is crucial for the brain to rewire. Keep supporting him and keep telling him how well he is doing each day. That means a lot.. I hope this helps. Mare G
    PABookie responded:
    I had a stroke -- a vertebral artery dissection -- in 2004 that caused Wallenberg's syndrome, including each of the symptoms you mention, and some others that you don't, including a few days of godawful hiccups. It took me five weeks to be able to walk safely unassisted. I still have some residual balance problems, but they're annoying rather than being overly limiting. I stay off ladders and avoid narrow mountain footpaths. When I walk (which I do a great deal of), I don't always follow a straight line, but don't veer in a way noticeable to others. My dry eye was helped some when the eye doctor put a plug in the tear duct, but I still use drops several times a day. The reduced temperature and pain sensitivity on my right side has never lessened, but isn't a problem. I have had a big problem with post-stroke fatigue, with which medical doctors have been no help at all. Acupuncture, however, much to my astonishment, seems to have helped that a great deal over the past year. Recovery in general has continued over the entire five years, although, of course, at a much reduced rate after the first couple of months. My impression is that both the severity of the symptoms and the amount and pace of recovery, are pretty unique to each of us.
    JanieinOhio responded:
    Nancy and others ~

    In 1990, I suffered a stroke (vertebral artery dissection caused by a chiropractic neck manipulation). I was only 32 at the time. I, too, was misdiagnosed in the ER ... it took about 10 days for the doctors to figure out what had happened. I vomited for three weeks straight due to extreme vertigo, and lost 20 pounds in those three weeks. I had all the symptoms everyone else has listed due to Wallenberg's Syndrome.

    Yes, the first year was difficult, but I was able to return to work at the end of that year. It has been almost 20 years, and I still have some symptoms, but nothing I can't live with. I still am a bit dizzy and I have altered sensation on the left side of my body, but most everything else faded long ago.

    Depression IS a major factor after a stroke. The stroke leaves a person with less of a sense of self -- both physically and in terms of personality. The love and support of family and friends is invaluable, but I also encourage anyone dealing with this to seek help through antidepressants and to find a good counselor to talk things through with. It really made a difference for me.
    NJScout responded:
    I had a stroke resulting in wallenberg syndrome after a 5K race in 2001. I was 49. I spent 6 weeks in the hospital learning to walk and swallow, then 4 months at home working on my balance and walking without a cane. I went back to work on a limited basis after 6 months and began driving again after 9 months when my eyes finally began to put the 2 images together. Things have continued to improve since then--I'm working full time, hunting, fishing, camping, kayaking--but there are lingering symptoms. I have to think about balance when carrying heavy objects or making sharp turns, my left eye gets dry and my vision blurs when I am out in the cold or wind for an extended period, my right leg does not register temperature correctly and I have a tingling sensation in my left cheek--that's really annoying sometimes. However, I live with these well enough that people who don't know I had a stroke can't tell. And I consider them easier to live with than arthritis or gout or diabetes, etc. I've adopted the attitude that everything I do is continued therapy, so I keep trying things--not recklessly, of course--but I don't avoid challenges.

    So hang in there. As a runner your level of fitness will help you deal with the balance issues and you'll learn not to stand with the unreliable leg towards the campfire. And you'll be ready to cope with turning 50 and getting bifocals!
    An_227152 replied to NJScout's response:
    My husband who is 48 just suffered a wallenburg stroke on Feb.25 and was able to go home after 10 days of being in the hospital.

    He woke up with having trouble walking, slurred speech and in a cold sweat. He continues to have trouble with his balance, he cannot swallow so he has a feeding tube and also has trouble with tingling in his cheek along with not being able to tell the tempature on his right side.

    Today he told me he is experencing some pressure on the left side of his head, which he has had for the last couple of days.
    Is this normal, as he feels nothing is wrong and he ok. Am I over reacting to this?
    IHadAStrokeAge44 replied to An_227152's response:
    Pressure was not a symptom I had. I have Wallenberg also and suffered from dizziness, inability to swallow, etc. I had a feeding tube for four months. Everything has improved over time. I still cannot feel warmth on my right side and left face and I have pain in those areas.

    My brain swelled after the stroke, which caused more damage. The doctors said this would only happen up to six days after the stroke. Your husband seems to be beyond this point.
    IHadAStrokeAge44 replied to JanieinOhio's response:
    It is very inspiring to hear that your stroke happened almost 20 years ago. The doctors I had stressed my increased risk factor for more strokes and I left the hospital feeling that my life expectancy was very short.
    fab1262 replied to mareg4's response:

    I am 47 years old, I live in Belgium. I run moderately 2 to 3 times a week. Just a week ago I woke up feeling nauseous and dizzy. The doctor came and I was sent to the hospital. I could not walk, falling to the right all the time. I could not focus, could not control the right eye The neurologist immediately diagnosed Wallenberg. Then they started several tests to learn about the origin. IRM showed nothing. Brain activity was normal. They give me anti-nauseous treatment, and something to thin the blood. I gat some electrodes on the hest and a cassette recording the heart beats.
    After 24h hours my eye was back to normal, but I still could not get up.
    The next day I got up and was able to wash myself alone.
    Still feeling dizzy, and no sensitivity to heat/pain on the left part of by body. Same for right part of face, but in a lesser way. I can leave the hospital. The next days I don't see any more improvement.
    3 days ago the doctore phoned to say they had found some irregularities in ly heart, which was most certainly the cause of the Wallenberg. New medication to normalize the heart rates.
    Seems that this was only a light Wallenberg, I was lucky.
    However, I feel diminished. The hot water of the shower just feels lukewarm. Yesterday I went walking in the woods with my husband and it is not the same anymore. I fear to stumble, I don't feel my foot in the shoe, I don't feel my heart beats the same way.
    So this long message just to ask you how you are doing now, if you have completely recovered, if your are cheerful and running again. Thanks, Fabienne
    Patricjft replied to fab1262's response:
    I suffered a Wallenberg Syndrome stroke on February 15th of this year (2010). I walked into the emergency room complaining of a loss of the sense of temperature on the left side of my body, severe headache, and difficulty walking. They admitted me into the hospital immediately (thought I may be having an anurism). My symptoms quickly worsened and by day 5 in the hospital, I could no longer walk, talk, see, and my coordination with my right side was severely impacted. Still had no diagnosis at this point in time. They had narrowed it down to a stroke or MS. But, with the treatments being far different for each of these, they did not know how to procede. On day 9 I was transferred to a teaching hospital, Memorial Herman in Houston. I was diagnosed with Wallenberg on day 10. Had a cerebral angiogram to confirm that day. Started me on Heparin, Cosaar, and Lipitor. Liver began to fail with my enzyme count going through the roof. Began to talk normally again on day 13. Took me off Lipitor, liver recovered, and was discharged on day 16. I still could not walk without a walker or assistance, could not see, still had no sense of temperature or pain on the left side of my body. Had some physical therapy in the hospital. Began intensive physical therapy upon discharge. Began to walk without walker in about a month. Regained my vision in about 3 months. I still have the dry right eye, can not feel pain or temperature on the left side of my body. My balance, although much improved, is still not 100%. I ride motorcycles, and they have sat in the garage since this. I went through some depression, and it feels like I am starting to feel that again. I am still on Warfrin and Cosaar. I do not like the side effects of the Warfrin and can not wait to get off of it. I always have one large bruise that I don't know how it got there. I also feel it has caused me to gain a large amount of weight (40 lbs.). I have also broken a toe on my left foot and did not know it because of the lack of pain sensation. I lack energy and struggle to make it through each day at work. Returned to work in June. My employer has been understanding, but I feel their patience is running thin on that. I hope I continue to improve, but it feels as if I have hit a wall. I have seen no improvement (or worsening) of any symptoms in the last couple of months. Any hope would be greatly appreciated. Glad I found a site with others who will understand what I am going through and the frustrations I am feeling as a result. Thanks.

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