Carmel Power - Heart Valve Journal

My Journal

2211 days ago

OCULAR MIGRAINES- I am writing this post firstly to thank the person on this site ( can’t find their name unfortunately) who wrote about how they stopped ...Read more

OCULAR MIGRAINES- I am writing this post firstly to thank the person on this site ( can’t find their name unfortunately) who wrote about how they stopped their migraines that occurred after exercising. I had a mitral valve repair in Feb 2018 and had been plagued by ocular migraines since, one a day for 5 months, then a couple a week since. I saw a neurologist who suggested several drugs none of which worked. The person on this site said they took an electrolyte drink before they exercised and did not get a migraine. So I decided to do the same. Once I did this, I no longer got an ocular migraine! And I have not had one for several weeks. I rang my neurologist to see if it was safe to take every day which he said was fine. So to anyone out there having an issue with ocular migraine this may be worth a go.

Kieran Parsons Any particular brand?

Carmel Power I used Hydralyte. https://www.hydralyte.com/

Hydralyte | Electrolyte Drinks & Solutions for Rehydration

https://www.hydralyte.com/

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Carmel Powerposted an update

2788 days ago

Hi everyone. I would like to hear from people who have had ocular migraines after surgery. When and if, did they stop? What medication were you taking, not ...Read more

Hi everyone. I would like to hear from people who have had ocular migraines after surgery. When and if, did they stop? What medication were you taking, not for the migraines but overall? Mine seem to be subsiding after 4 weeks and I am wondering if coming off a certain medication has been the reason or that the residue anaesthetic is wearing off. Thanks for your feedback.

kirshbaum marilynne Hi Carmel
I have been having mild migraines every once in awhile, but have not been on medication asi ... Read more

kirshbaum marilynne Hi Carmel
I have been having mild migraines every once in awhile, but have not been on medication aside from aspirin. Now 6 weeks post-op. My eyesight seems a bit wonky. I was told that it will settle down and to wait a bit longer before going to the optician. I think this might be related to the migraines and visual disturbances (the pre-migraine light show).

Carmel Power Thanks for the feedback marilynne. I’m from Australia as well and had heart surgery a month ago; mi ... Read more

Carmel Power Thanks for the feedback marilynne. I’m from Australia as well and had heart surgery a month ago; minimally invasive robotic mitral valve repair. I am still pretty stiff around my right side but not with a lot of pain. Sorry to hear about your sternum pain. Hopefully with time it will be “normal”.

Marie Myers I had ocular migraines for weeks after my surgery. They gradually decreased, and now I rarely get the ... Read more

Marie Myers I had ocular migraines for weeks after my surgery. They gradually decreased, and now I rarely get them at 1 year out. I think it is just the stress of the whole surgery. I asked 2 opthamologists (that I work with ) about it, and neither had any idea why it happens.

Carmel Power Thanks Marie for the feedback.

Lilly Black Hi, Carmel. For me, migraines have been a problem for many years. Feel free to read my journal. Not o ... Read more

Lilly Black Hi, Carmel. For me, migraines have been a problem for many years. Feel free to read my journal. Not only have I had migraines but also migraine related seizures. After my first surgery (2007), migraines got worse. Auras, ocular migraines, and migraine related seizures were uncontrollable! After my second surgery (2014), when I got my natural heart valve replaced, migraines subsided substantially....I mean from 4 to 5 migraines a week to 2 or 3 migraines a month. I was so happy! But then suddenly mid-October 2017, I was hit hard with migraines, pressure headaches, and tinnitus! It's the worst experience I have ever had, because I don't know why this came on so suddenly! I am now waiting for approval from my medical plan to get a brain MRI. I have medication, which is called Fiorinal, but I am concerned about taking meds. Instead, I rest and meditate. I try hard to wait it out.

While I am waiting for the approval, I have increased my walking exercise, cut out the meds, and have cut out a lot of things from my diet, and I try to have a good night sleep every night! I have had no relief from the tinnitus. Migraines have subsided to 1 or 2 a week. Meditation, rest, and trying to stay stress free is my new protocol. It's difficult because I work full time at a very stressful job. I'm glad that your ocular migraines have subsided. Sleep, or lack thereof, is my biggest trigger. I hope this information is helpful....but let me know if you have any other questions. Take care!

Carmel Powerposted an update

2847 days ago

Hi everyone! I am hoping mitral valve regurgitation patients might respond to these questions. Were you asymptomatic when you had your surgery? Did anyone have ...Read more

Hi everyone! I am hoping mitral valve regurgitation patients might respond to these questions. Were you asymptomatic when you had your surgery? Did anyone have surgery when they only had a mild to moderately enlarged atrium? I have a flail leaflet and mod to severe regurgitation. We seem to have different guidelines in Australia to the US ( the US seems more pro early surgery?). I have spoken to two top Cardiothoracic surgeons who think it is better to operate earlier than later ( and are happy to operate) whereas the cardiologist I have seen is happy to wait and see. All the information I read is very pro early surgery if you have a repairable valve. (Both surgeons have said I have). Both surgeons say I will feel pretty awful for quite a while after surgery but neither have said directly whether I will return to my current health status. Would people please give me some feedback on how they feel long term after a mitral valve repair? I seem to have taken a convoluted journey with this process as it seems most people go through a cardiologist until they have indications they need surgery. I have undertaken to speak to a surgeon/s because the cardiologist was pushing for a mechanical valve and this made me very keen for a second and third opinion. I am keen to have something done but very concerned about whether I will regain my current good health. As you can see, I am very unsure of what to do particularly as one cardiologist said if I wait, I will in the long run have problems with my LV and other valves. This is very stressful so any feedback is greatly appreciated.

Barbara Wood Hi Carmel, I had a mitral valve repair ( 2 leaflets) 7.5 months ago. I didn't think I was symptomatic ... Read more

Barbara Wood Hi Carmel, I had a mitral valve repair ( 2 leaflets) 7.5 months ago. I didn't think I was symptomatic at the time, but looking back I think I probably was - deep breathing & overall stamina is definitely better. I had a severely dilated left atrium when I went for surgery ( & the AFib that goes along with it) & was considered severe regurgitation. My cardiologist was of the wait & see school, but when I had my second AFib, she thought it was time ( close to a year after my diagnosis). My surgeon didn't outright say it, but I felt he would have been pleased to do it earlier.
My surgery was very successful. My echo at 5 months after showed the left atrium almost back to normal, & I feel great. I felt pretty good physically before surgery, but I would say I feel better now. It's a tough decision...best wishes going forward!

Bill H Hi Carmel. I had mitral valve repair (Barlow’s) 9 weeks ago and I’m feeling pretty good now. I� ... Read more

Bill H Hi Carmel. I had mitral valve repair (Barlow’s) 9 weeks ago and I’m feeling pretty good now. I’ve been exercising (cardio and weights) and am getting stronger each day. I think a return to your good health is very possible. It will just take time. I had a full sternotomy done so it has been longer than minimally invasive.

Lisa Hunley Hello Carmel. I had mitral valve repair 6 weeks ago. I am so glad I had mine done rather than waiti ... Read more

Lisa Hunley Hello Carmel. I had mitral valve repair 6 weeks ago. I am so glad I had mine done rather than waiting. The surgeon had told me they were going to have do replace mine. Already had decided for a mechanical valve. When I woke up from surgery, they told me that they were able to repair it. Thank GOD! As you know, that means no Coumadin. If both of your doctors have agreed that yours would be a repair, I would definitely recommend that you have it done and not put it off and wait. Just my opinion. As for getting back to healthy, I can't answer that one yet. I am in cardiac rehab and I feel that it is really helping me. I will be praying for you.

Carmel Power Thanks Lisa for the kind words and prayers. Hope you continue to do well. C

Carmel Powerposted an update

2904 days ago

Hello everyone and thanks for your feedback. This is a fantastic site. Thanks Adam for setting up. My question is : if you have had a mitral valve tissue replacement, ...Read more

Hello everyone and thanks for your feedback. This is a fantastic site. Thanks Adam for setting up. My question is : if you have had a mitral valve tissue replacement, can you tell me how long yours has lasted. My cardiologist has said 5 years and then it would need replacing. I got a second opinion from a Cardiothoracic surgeon who said 10-15 years. My cardiologist is suggesting a mechanical valve is the best option for longevity but I am not keen on taking Warfarin. I am very active, bush walk, ski etc. Am concerned my lifestyle will have to change significantly if on Warfarin. All advice much appreciated.

Lisa Hunley Carmel, I too would like to know this information. My surgery is December 27. As of now, I am sche ... Read more

Lisa Hunley Carmel, I too would like to know this information. My surgery is December 27. As of now, I am scheduled for the mechanical valve. I have been trying to research it , as I'm sure you have. I am not looking forward to the Coumadin either. I also have to take Synthroid because I had to have my thryoid removed several years ago. I have read that the thryoid med can interfere with the INR. That is scary too me. My surgeon did show me this (ring type thing) that he said is to replace a valve inside a valve that is done through the groin. I just want to make the right choice, as I'm sure you do.

Carmel Power Hi Lisa. It is a big decision because it’s my understanding that once you have a mechanical valve, ... Read more

Carmel Power Hi Lisa. It is a big decision because it’s my understanding that once you have a mechanical valve, you can’t go back and change it! You can have more than one tissue valve replacement. I don’t like the Warfarin idea either! I have heard about the valve in valve procedure but is that just for tissue valves? I’m still trying to get all the information before I make a final decision. Good luck with it all and let me know how you get on.

Lisa Hunley Hey Carmel. My understanding is that it is just for the tissue valve. Thank you for responding.

Carmel Powerposted an update

2928 days ago

I’m from Melbourne, Australia and looking for a surgeon who had done lots of mitral valve operations. This isn’t like America where they seem to have specialist ...Read more

I’m from Melbourne, Australia and looking for a surgeon who had done lots of mitral valve operations. This isn’t like America where they seem to have specialist mitral clinics. Surgeons tends to be more general in the work they do. Anyone had a complicated mitral valve repair done with a specialist here? Would really appreciate your opinion.

Carmel Powerposted an update

2928 days ago

Michelle Vecchione, authur ruwona and 1 other reacted to this

Hello all I am wondering if anyone has the same situation as me. I have a severe mitral valve leak, enlarged atrium, moderately enlarged heart and normal heart ...Read more

Hello all I am wondering if anyone has the same situation as me. I have a severe mitral valve leak, enlarged atrium, moderately enlarged heart and normal heart function. I am fit, walk 8 kms most days and am up and down stairs. My cardiologist has taken a wait and see approach. I am wondering if people felt better or worse after their mitral valve surgery? I have a second opinion with a Cardiothoracic surgeon who said I have an 80% chance of a repair so not sure which path to take. Thanks for your help. Carmel

Michelle Vecchione Yesss Carmel, my story is exactly like yours!!!! If you have a moment please read "my story" on my pa ... Read more

Michelle Vecchione Yesss Carmel, my story is exactly like yours!!!! If you have a moment please read "my story" on my page, it is a mirror imagine of yours. Was diagnosed just this past Jan, with Severe Mitral regurg with my cardiologist playing the waiting game, saw a specialist in June and here I am going in for a Mechanical Valve Replacement this Mon Oct 30th!!! I too am very active, sports, work out 4-5 times a wk and im 39. I wish you all the best, my cardiologist told me, it was most likely gonna be a repair, but surgeon and specialist said no wa y, due to Rhuematic heart disease, valve was destroyed...i wish it was repairable, surgeon would know best, so that's good news for you!! Best wishes!!

Barbara Wood Hi Carmel, my diagnosis was very similar to yours. Mine was diagnosed in the moderate to severe stage ... Read more

Barbara Wood Hi Carmel, my diagnosis was very similar to yours. Mine was diagnosed in the moderate to severe stage about 18 months ago. It was monitored with tees or echos every 3 months. In Jan I had afib & it was found to be severe, so I was scheduled for surgery. I had a mitral valve repair ( damaged leaflets) at the end of May. My odds for repair rather than replacement were 85 o/o. Like you I was active & pretty asymptomatic beforehand. I felt good & skiied & hiked right up to the operation with my cardiologists approval. Even though I felt good previously, now at 5 months after surgery I would say I feel better- my breathing has improved & just overall I just feel so much better, more energetic. Michelle, good wishes for your upcoming surgery!

Steve Farthing I had a severe mitral leak for several years but once the left atrium became enlarged they said bette ... Read more

Steve Farthing I had a severe mitral leak for several years but once the left atrium became enlarged they said better to repair before permanent damage occurs. My valve was repaired just 4 months ago and all chambers are back to normal size.

Carmel Power Thank you all so much for replying. It gives me some strength at a very difficult time. For those wh ... Read more

Carmel Power Thank you all so much for replying. It gives me some strength at a very difficult time. For those who had a repair/ tissue valve, are you on medication? I’m currently not on medication and don’t want to be if possible. The Cardiothoracic surgeon said your heart gets sluggish after the mitral operation. I assume that means you feel pretty ordinary? Does this last?

Barbara Wood I'm taking 12.5 mg metoprolol/ day & Coumadin. I saw my cardiologist this week & will see him again i ... Read more

Barbara Wood I'm taking 12.5 mg metoprolol/ day & Coumadin. I saw my cardiologist this week & will see him again in 6 months...at that point he'll reevaluate the meds. He said if I had not had afib, I would be off them now, but he is being cautious.

Bonnie Stone-Hope Hi Carmel,
Sounds VERY familiar! Severe mitral valve regurgitation, enlarged atrium, normal EF, mo ... Read more

Bonnie Stone-Hope Hi Carmel,
Sounds VERY familiar! Severe mitral valve regurgitation, enlarged atrium, normal EF, moderate leak with tricuspid. I am assuming that once surgery is done in November, after recovery period, that life will be normal again. My Mom had the same surgery and she was fine after.
Good luck!!

Carmel Power Thanks Bonnie. All the best with your surgery.

Carmel Power Hi Barbara. Sorry, it’s taken me a while to get back to you but thanks for your reply to my answer ... Read more

Carmel Power Hi Barbara. Sorry, it’s taken me a while to get back to you but thanks for your reply to my answer re the medication. I am so glad to hear you feel much better after the operation and hope you continue to recover.

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