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Jackie Bell
@jbell22

Posts: 11
Joined: Jan 19, 2015

Right-facing aorta with Kommerellis diverticulum

Posted by @jbell22, May 28, 2016

I have had one heart surgery through the back because my left subclavian artery is embedded in my spine and eroding it – they could not remove it. The Kommerelis Diverticulum was cut which gave some relief to my trachea and esophagus. My right-facing aorta is still compressing my trachia at a very high spot in my chest. Also, a nerve was clipped during surgery which paralized my left vocal chord. I need both throat surgery and likely a second heart surgery – is there anyone facing any of these difficulties?

REPLY

Hi @jbell22. Thanks for sharing your journey with the community. I want to introduce you to a few other members in the community. Meet @cynaburst and @lovefish, both members who have had heart surgery and throat surgery, respectively. Do you know when your two surgeries will be? And having been through one heart surgery, is there any advice that you would share with group about pre- and/or post-surgery?

@alysebrunella

Hi @jbell22. Thanks for sharing your journey with the community. I want to introduce you to a few other members in the community. Meet @cynaburst and @lovefish, both members who have had heart surgery and throat surgery, respectively. Do you know when your two surgeries will be? And having been through one heart surgery, is there any advice that you would share with group about pre- and/or post-surgery?

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Hi! Thank you for responding and sharing the contacts. Do I need to somehow alert them or will they see my posts? My surgery occurred in August and the surgeon went in through my back – my scare is quite large and it looks like I have had a lung removed. The surgeon went in through the back because my left subclavian artery has eroded and embedded itself in my spine. He was unable to remove it because it has actually attached itself to my spinal cord. This might be a horrendous surgery in the future if my back continues to decline. He also cut some bands on my heart which were strangling my trachea and esophagus and lastly he rolled my aorta and tacked it to my heart. I think I am healing quite well but there is still pressure, clamping and pain in my chest daily as my aorta is still compressing my trachea at a very high, front part of my chest. I do not know when tge second surgery for this will be – I am hoping things will improve and I might not need it. I am curious to hear from people who have anything similar and/or have had a plastic piece put in their throat because their vocal chord was paralysed during the surgery ( vegus nerve nipped). I have a temporary filler put in my throat and I do have breath intake problems (though this is likely due in part to my aorta as well). Does the plastic piece feel better or worse? Does anyone have a right- facing aorta that is compressing their trachea and ard waiting for surgery or have had surgery? Thank you for any thoughts on any of this.

Good question @jbell22. By adding the @ symbol and a member’s username, that member will receive an email notification to join the conversation – like you did with this message because I @mentioned your username.

I’m tagging a few more members who may insight into your questions about damaged vocal cords and a vocal cord implant. @ggopher has had a vocal cord implant, and @hopeful33250 and @jennybell talk about paralyzed vocal cords in the discussion thread https://connect.mayoclinic.org/discussion/i-had-a-egd-and-the-doctor-noticed-some-resistance-that-he/

By your having started this thread, hopefully other people who have had surgery to correct the aorta compressing their trachea will also join the discussion.

@colleenyoung

Good question @jbell22. By adding the @ symbol and a member’s username, that member will receive an email notification to join the conversation – like you did with this message because I @mentioned your username.

I’m tagging a few more members who may insight into your questions about damaged vocal cords and a vocal cord implant. @ggopher has had a vocal cord implant, and @hopeful33250 and @jennybell talk about paralyzed vocal cords in the discussion thread https://connect.mayoclinic.org/discussion/i-had-a-egd-and-the-doctor-noticed-some-resistance-that-he/

By your having started this thread, hopefully other people who have had surgery to correct the aorta compressing their trachea will also join the discussion.

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My laryngoplasty was needed for a weak left cord assumed caused by the Epstein-Barre virus I had a year earlier. It worked well for 3 years and now the other cord appears to be an issue. But now I know I have Parkinson’s so I can’t swear what is causing what but the reinforced side seems OK.

Steve

@colleenyoung

Good question @jbell22. By adding the @ symbol and a member’s username, that member will receive an email notification to join the conversation – like you did with this message because I @mentioned your username.

I’m tagging a few more members who may insight into your questions about damaged vocal cords and a vocal cord implant. @ggopher has had a vocal cord implant, and @hopeful33250 and @jennybell talk about paralyzed vocal cords in the discussion thread https://connect.mayoclinic.org/discussion/i-had-a-egd-and-the-doctor-noticed-some-resistance-that-he/

By your having started this thread, hopefully other people who have had surgery to correct the aorta compressing their trachea will also join the discussion.

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There is a theory that the EB virus is responsible for the dysautonomia I suffer from. The normal range for the EB virus is
0-17. My blood work shows I am 507. I wish the scientists would pursue this.

Thanks.

@colleenyoung

Good question @jbell22. By adding the @ symbol and a member’s username, that member will receive an email notification to join the conversation – like you did with this message because I @mentioned your username.

I’m tagging a few more members who may insight into your questions about damaged vocal cords and a vocal cord implant. @ggopher has had a vocal cord implant, and @hopeful33250 and @jennybell talk about paralyzed vocal cords in the discussion thread https://connect.mayoclinic.org/discussion/i-had-a-egd-and-the-doctor-noticed-some-resistance-that-he/

By your having started this thread, hopefully other people who have had surgery to correct the aorta compressing their trachea will also join the discussion.

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Steve:  Your history of vocal cord surgery and PD was intriguing.  I also have a very mild case of PD (mostly non-motor symptoms) but have a completely paralyzed vocal cord and had the laryngoplasty surgery at Cleveland Clinic where a silastic implant was put in the paralyzed cord.  I’m beginning to experience a bit of atrophy in that cord, now.  It mainly affects the volume of my voice however swallowing, other aspects of speech are all still good.  You do not mention how long ago  you had the surgery, mine was 2 years ago.  Have you had any problems with atrophy? 

I had my laryngoplasty 3 years ago last week by an ENT in Houston. She used basically medical grade Goretex. I was checked by an ENT in my retirement home town a couple months ago and there was no mention of atrophy, just shifting of the other cord. I also completed a month of LSLV speech therapy a few weeks ago and there was no problem with function noted. My PD is also relatively minor at this time and pretty well controlled by 3 Sinemet daily.

Steve

Liked by Jackie Bell

I didn’t get a number, but my ENT said she found EB antibodies in my blood showing an infection about a year prior or about the time I remember just hitting the wall and taking months to get up to a new normal.

I’ve been wondering if that virus is responsible for more than just the vocal chord issue.

Steve

@ggopher

I had my laryngoplasty 3 years ago last week by an ENT in Houston. She used basically medical grade Goretex. I was checked by an ENT in my retirement home town a couple months ago and there was no mention of atrophy, just shifting of the other cord. I also completed a month of LSLV speech therapy a few weeks ago and there was no problem with function noted. My PD is also relatively minor at this time and pretty well controlled by 3 Sinemet daily.

Steve

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Thanks for the information, Steve.  I’m glad to hear that your PD is easily controlled as well and that you are not having problems with atrophy on the surgically repaired vocal cord.  I usually use 1 or 2 low-dose Stalevo each day and 1 Sinemet.  The Stalevo makes the carbiopa/levodopa last a little longer.
Teresa

@ggopher

I had my laryngoplasty 3 years ago last week by an ENT in Houston. She used basically medical grade Goretex. I was checked by an ENT in my retirement home town a couple months ago and there was no mention of atrophy, just shifting of the other cord. I also completed a month of LSLV speech therapy a few weeks ago and there was no problem with function noted. My PD is also relatively minor at this time and pretty well controlled by 3 Sinemet daily.

Steve

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You are welcome, Theresa. We learn from each other. My PD specialist is moving to Houston and when I meet the new one in the next few months I’ll ask about Stalevo. What is your Sinemet dosage? Mine is 25/100.

Steve

@ggopher

I had my laryngoplasty 3 years ago last week by an ENT in Houston. She used basically medical grade Goretex. I was checked by an ENT in my retirement home town a couple months ago and there was no mention of atrophy, just shifting of the other cord. I also completed a month of LSLV speech therapy a few weeks ago and there was no problem with function noted. My PD is also relatively minor at this time and pretty well controlled by 3 Sinemet daily.

Steve

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Just as an FYI @hopeful33250, there are a couple of Parkinson’s related conversations happening here:
https://connect.mayoclinic.org/discussion/i-would-like-to-introduce-myself-my-name-is-chris-and-i/
https://connect.mayoclinic.org/discussion/hi-does-anybody-have-good-results-taking-azilect-as-a-mono-therapy/

@ggopher is also chatting on these threads as well. Love the exchange you guys are having.

Hi Steve:  Yes, we do learn form each other and that is the great thing about Mayo Connect.  My Sinemet dosage is the same as yours, 25/100.  The Stalevo dosage is 12.5/50/200.  (It is the smallest dosage of Stalevo available).  It has carbidopa/levodopa (in smaller amounts and an added medicine called entacapone of 200 mg.  The entacapone is what makes the other two ingredients last longer.  You can also take the entacapone as a separate pill, however, it is a very large, uncoated tab that most people with PD find difficult to swallow.  The Stalevo is an easy to swallow, coated tablet.  If you make the switch, I would be interested in knowing how it works for you.  I’m involved in a lot of PD exercise classes.  I hope that you are as well.  Exercise is the one thing that can prevent further disability.  It tends to be good for the brain as well as the body.  Best wishes!Teresa

@hopeful33250

Hi Steve:  Yes, we do learn form each other and that is the great thing about Mayo Connect.  My Sinemet dosage is the same as yours, 25/100.  The Stalevo dosage is 12.5/50/200.  (It is the smallest dosage of Stalevo available).  It has carbidopa/levodopa (in smaller amounts and an added medicine called entacapone of 200 mg.  The entacapone is what makes the other two ingredients last longer.  You can also take the entacapone as a separate pill, however, it is a very large, uncoated tab that most people with PD find difficult to swallow.  The Stalevo is an easy to swallow, coated tablet.  If you make the switch, I would be interested in knowing how it works for you.  I’m involved in a lot of PD exercise classes.  I hope that you are as well.  Exercise is the one thing that can prevent further disability.  It tends to be good for the brain as well as the body.  Best wishes!Teresa

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Hi Theresa,

Good info, thanks.

I generally do 2 miles on the treadmill then 30 reps on a dozen machines 3 days week for my osteoporosis and we do some simple exercises at the monthly PD group so they can keep an eye on us. I may up that a little when the new fitness center is completed a block away in a few weeks.

Steve

@hopeful33250

Hi Steve:  Yes, we do learn form each other and that is the great thing about Mayo Connect.  My Sinemet dosage is the same as yours, 25/100.  The Stalevo dosage is 12.5/50/200.  (It is the smallest dosage of Stalevo available).  It has carbidopa/levodopa (in smaller amounts and an added medicine called entacapone of 200 mg.  The entacapone is what makes the other two ingredients last longer.  You can also take the entacapone as a separate pill, however, it is a very large, uncoated tab that most people with PD find difficult to swallow.  The Stalevo is an easy to swallow, coated tablet.  If you make the switch, I would be interested in knowing how it works for you.  I’m involved in a lot of PD exercise classes.  I hope that you are as well.  Exercise is the one thing that can prevent further disability.  It tends to be good for the brain as well as the body.  Best wishes!Teresa

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Hi Steve:  I’m most impressed with your exercise routine.  I have a PD dance class once a week in my area, it is chair exercises done to music. It is great for range of motion, etc. and all the folks in the group have a good time as well.    Then once a week a PT who specializes in working with PD folks does a free exercise class for PD patients. Both classes have basically the same group of folks so we have a great time together and offer each other support along the way.  I try to do the treadmill as well as walk in a pool, so it all works well for me. 
Best wishes,
Teresa

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