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[concerned lady]

Hello,

A nice person on this forum told me about this forum. One of the bad effects of VNS/Vagus Nerve Stimulation implants, that lasts long after the implant has been removed, is vocal cord paralysis. This can promote "VCD"/Vocal Cord Dysfunction (short duration "laryngo-spasms").

Is there anyplace on this forum that lists doctors (names, contact info), who know about bad side effects of VNS (Vagus Nerve Stimulation) implants, and, who hopefully know how to help fix these terrible (usually multiple) problems?

I couldn't find a doctor list in this forum. If there is such a doctor list,  here, (or anywhere), please tell me how to find it.

I added some info about the bad side effects of VNS implants, to my VCD (Vocal Cord Dysfunction) website, so if future VNS patients ever contact me, I'd like to be able to do the following, if OK with you all:

1) I'd like to put a link in my website to this VNS forum
2) I'd like to be able to find a list of helpful docs.

Thanks in advance.

Carol in Colorado (Concerned Lady)
http://cantbreathesuspectvcd.com (about short duration "laryngospasms", also called VCD/Vocal Cord Dysfunction)

[Dispatch]

  HI Carol and a big WELCOME to the Board!  Glad to have you here, and look forward to all your input!

No, we don't have a list of Docs here on the Board.  THANKS for the suggestion, and Birdbomb our Administrator is probably figuring out how we can post Doctor names without being in any sort of violation.  I have given out my explanting surgeons info thru PM's when he gave me permission to do so.  Also, Birdbbomb will get back with you regarding posting your link in your signature.

Last I looked on the Cyberonics website, they had a list of docs on there, but those are implanting docs.

In regards to my issues with VNS, there is no fixing the problems VNS caused, only treatment of the symptoms.  Alot of my adverse events/side effects stopped when my VNS was turned off, but the gait disorder, gastric issues, increased brain damage issues, etc., linger and will never be gone.

I am sorry to read about your VCD, and I certainly hope there is a resolve to your adverse event.  Some people get relief with adjustments, and some people get relief by discontinuing VNS as therapy.  Then there are those that VCD is permanent.  Which catagory are you in?

Best of luck, and hope to hear from you again soon!

Be well!

[concerned lady]

Dear Dispatch,

Thank you for your kind welcome! I don't have problems with VCD any more (only a rare mild event if I inhale what I was drinking or eating, by gulping down food or drink too quickly), but thank you for your concern.

Here's a link to a Wiki (no, not Wiki-leaks, per se!) article, that tells about many of the awful & long lasting effects of VNS implants. This Wiki article shows how doctors (see their reference articles' authors) KNOW about these problems, but what I want to know, is what these docs can DO to help VNS explanted patients!

When I can, I'll try to contact the authors of these articles, to see what they say. Anyone here, can certainly do the same. I'll post the "references" from this Wiki article, in a reply to this posting.

I'll report back what I find out.

The plight of VNS implant (and explanted) patients, reminds me of the Vaccination adverse effects issues. I once rode up a ski area chairlift with a doctor, who told me that many docs are worried about bad effects of vaccinations, and won't let their own kids be vaccinated, but they are afraid to say openly what they think, for fear of being "censured"/blacklisted, by the conservative AMA (American Medical Association).

Here's the Wiki article link: http://en.wikipedia.org/wiki/Vagus_nerve_stimulation
 and here's a part of the article that I've copied & pasted here:

"....VNS causes stimulation of the superior and recurrent laryngeal nerves and is associated with problems ranging from alteration of voice(66%), coughing(45%), pharyngitis [sore throat] (35%) and throat pain(28%)[13] and hoarseness (very common) to frank laryngeal muscle spasm and upper airway obstruction (rare)[16]. The left vagus has proportionally lesser number of cardiac efferent ["efferent" means "motor" nerve fibers that tell muscles when to contract] fibers and placing the stimulator on this side potentially limits the arrhythmogenic [causing heart rhythm changes] effects of vagal stimulation but reversible brady-arrhythmias [very slow heart rate] associated with vagal nerve stimulators have been well described[17]. Other nonspecific symptoms such as headache, nausea, vomiting, dyspepsia [indigestion, which can lead to gastric reflux, leading to VCD attacks][17], dyspnea [difficulty breathing] and paresthesia.[3] ."

I am also aware of these adverse effects of VNS, thanks to the nice person on this site, who recently made me aware of all of  :)this:

paralysis of vocal fold, dyspnea, upper airway obstruction, pain in throat, pain in chest, sleep apnea, nausea, hoarseness, and all damage mentioned in article above.

Carol (concerned lady)
"Can't Breathe? Suspect Vocal Cord Dysfunction!"

[concerned lady]

I was trying to put a smiley in, but it got into the wrong spot in my previous post. Nothing to smile about, regarding the terrible side effects. Any way to edit?

Here's the references from the Wiki article:

References
1.^ Cyberonics, Inc. (2007.) VNS Therapy Patient Essentials: Depression.
2.^ Panescu, Dorin (2005). Emerging Technologies: Vagus Nerve Stimulation for the Treatment of Depression. IEEE Engineering in Medicine and Biology Magazine.
3.^ a b c George, Mark S. et al.; Sackeim, HA; Rush, AJ; Marangell, LB; Nahas, Z; Husain, MM; Lisanby, S; Burt, T et al. (2000). "Vagus Nerve Stimulation: A New Tool for Brain Research and Therapy". Biological Psychiatry 47 (4): 287–295. doi:10.1016/S0006-3223(99)00308-X. PMID 10686263.
4.^ Ghanem, T; Early, SV (2006). "Vagal nerve stimulator implantation: an otolaryngologist's perspective.". Otolaryngology--head and neck surgery : official journal of American Academy of Otolaryngology-Head and Neck Surgery 135 (1): 46–51. doi:10.1016/j.otohns.2006.02.037. PMID 16815181.
5.^ a b Groves, Duncan A.; Brown, Verity J. (2005). "Vagus Nerve Stimulation: A Review of its Applications and Potential Mechanisms That Mediate its Clinical Effects". Neuroscience and Biobehavioral Reviews 29 (3): 493–500. doi:10.1016/j.neubiorev.2005.01.004. PMID 15820552.
6.^ Doctor's Guide: Vagus Nerve Stimulation Successful For Depression
7.^ Neurology Channel: Vagus Nerve Stimulation
8.^ FDA Summary of VNS Data
9.^ Donovan, C. (2005.) Out of the Black Hole: The Patient's Guide to Vagus Nerve Stimulation and Depression Wellness Publishers, LLC. Also: http://www.vagusnervestimulation.com/
10.^ http://clinicaltrials.gov/ct/show/NCT00294281?order=3
11.^ http://www.utdallas.edu/news/2010/8/9-4791_NIH-Grant-Supports-Profs-Search-for-Tinnitus-Cure_article.html
12.^ "UCLA Develops Unique Nerve-stimulation Epilepsy Treatment; “Brain Pacemaker” Designed as External or Implant Device". Press release. 2006-07-25. http://newsroom.ucla.edu/page.asp?RelNum=7163. Retrieved 2006-07-26.
13.^ a b Malow, BA; Edwards, J; Marzec, M; Sagher, O; Fromes, G (2000). "Effects of vagus nerve stimulation on respiration during sleep: a pilot study.". Neurology 55 (10): 1450–4. PMID 11094096.
14.^ a b c Hsieh, T; Chen, M; McAfee, A; Kifle, Y (2008). "Sleep-related breathing disorder in children with vagal nerve stimulators.". Pediatric neurology 38 (2): 99–103. doi:10.1016/j.pediatrneurol.2007.09.014. PMID 18206790.
15.^ a b c d Marzec, M; Edwards, J; Sagher, O; Fromes, G; Malow, BA (2003). "Effects of vagus nerve stimulation on sleep-related breathing in epilepsy patients.". Epilepsia 44 (7): 930–5. PMID 12823576.
16.^ Vaughn, BV; D'cruz, OF; Beach, R; Messenheimer, JA (1996). "Improvement of epileptic seizure control with treatment of obstructive sleep apnoea.". Seizure : the journal of the British Epilepsy Association 5 (1): 73–8. PMID 8777557.
17.^ Bernards, CM (2004). "An unusual cause of airway obstruction during general anesthesia with a laryngeal mask airway.". Anesthesiology 100 (4): 1017–8. PMID 15087642.
18.^ a b Hatton, KW; McLarney, JT; Pittman, T; Fahy, BG (2006). "Vagal nerve stimulation: overview and implications for anesthesiologists.". Anesthesia and analgesia 103 (5): 1241–9. doi:10.1213/01.ane.0000244532.71743.c6. PMID 17056962.

Carol/concerned lady

[concerned lady]

Dispatch,

I'm sorry if I gave the wrong impression--I never had a VNS implant myself (although I do have depression), so my interest in VNS, is in helping another person, regarding bad side effects of VNS implants & even when explanted.

Good luck to you and all on this good forum.

Carol/concerned lady
Can't Breathe? Suspect Vocal Cord Dysfunction (my website about short duration "laryngo-spasms")

[Dispatch]

  HI Carol!

Sorry for the delay on getting back with you!

WOW!  THANKS for all the info you've provided!  Very good info, much appreciation!  I am glad to hear you've been helping a friend with all your research and such!  A pleasure to have you do some research here!  Hope you're able to manage your depression, especially at the Holidays!

I think you're unable to edit your posts after they've been posted 45 minutes--jump in anybody and correct me if I'm wrong.

Oh, and I like your sense of humor!  Hope to hear from you again soon!

Be well!

[concerned lady]

Dear Dispatch,

Thank you for your kind reply.

There's a good voice forum, that I belong to, called sid3voice listserve. It is an "open" forum, that is frequented by laryngologists (ENT/ear, nose & throat doctors specializing in vocal cords, necks, & throats), SLP's (Speech/Language Pathologists), and others, including some patients.

Recently, I did some searching, for messages about bad side effects of VNS implants.

I found 12 messages, written in 2007, 2008, and 2010, asking about or explaining about, bad effects of VNS implants, on voices and on breathing:

I learned (see the 12 messages I copied & pasted below), that IT IS NOW KNOWN, THAT at least one VOCAL CORD COMMONLY (50% OF THE TIME) GETS PARALYZED, FROM THE USE OF THE VNS MACHINE for epilepsy or for depression!

When even one vocal cord gets paralyzed (fully or partially--and a partial paralysis is called a "paresis"), then, this situation promotes the development of VCD (short duration laryngo-spasms, called Vocal Cord Dysfunction).

See messages below, that have some helpful information in them, some of which I still  need to follow up on.

Carol (Concerned Lady)
Can't Breathe? Suspect Vocal Cord Dysfunction!

__________________________________

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-----Original Message-----
From: R
Sent: Friday, March 02, 2007 2:47 PM
To: SID3VOICE for Karnell
Subject: Vagal Nerve stimulators to control epilepsy and subsequent dysphonia [voice problem; difficulty speaking]

Dear List,

I was on the telephone with one of my ENTs.  He was asking me if I had had laryngeal imaging experience with patients who had "vagal nerve stimulators" to control epilepsy.  (I have not imaged such patients.)  Anyway, I was interested by his question and comments about how when the stimulator is activated, dysphonia presents on some level.

I wanted to post this to our List-Serve to get some comments from anyone that has had experience with this, either through implanting of the stimulator, imaging or through therapy and opinions about this procedure.

Thank you,

R

________________________

(2)

 -----Original Message-----
From: P
Sent: Friday, March 02, 2007 5:35 PM
To: SID3VOICE for Karnell
Subject: Re: Vagal Nerve stimulators to control epilepsy and subsequent dysphonia


Hi R,

Below is the reference and abstract to a study completed by by Dr. Gary Shaw et. al.  It may provide some information that may be helpful.

Best regards,

P

Title: Predictors of Laryngeal Complications in Patients Implanted With the Cyberonics Vagal Nerve Stimulator
Authors: Gary Y. Shaw, MD, Philip Sechtem, MS, Jeff Searl, PhD, Emily S. Dowdy

Objectives: 

Since its approval by the US Food and Drug Administration in 1997 for management of medically refractory seizures, more than 35,000 patients have been implanted with the Cyberonics vagal nerve stimulator. Preliminary reports described transient vocal changes in the majority of subjects, which were thought to be short-term. However, these reports were for the most part based upon perceptual evaluations by the subjects themselves. Later reports described possibly more permanent recurrent laryngeal nerve injury and recommended measuring the nerve diameter to use the safest spiral cuff electrode. To date, no study has systematically evaluated vocal fold mobility in subjects before and after implantation. The objectives of this study were to determine the true incidence of both short- and long-term recurrent laryngeal nerve injuries and determine whether there are any potential indicators to predict in which patients long-term nerve deficits may develop. 


Methods: 

Thirteen subjects underwent preimplantation laryngeal electromyography, videolaryngoscopy, measurement of the maximum phonation time, Voice Handicap Index determination, and Consensus Auditory-Perceptual Evaluation of Voice. Two weeks after implantation, all subjects underwent videolaryngoscopy. Three months after implantation and activation of the device, all subjects were reevaluated. 


Results: 

Six of the 13 subjects had significant vocal fold mobility abnormalities at 2 weeks. Significant electromyographic abnormalities were detected before implantation in 5 subjects. All 5 of these subjects, at 3 months after implantation, had prolonged left vocal fold paresis [partial paralysis]. 


Conclusions: 

The authors conclude that perioperative  [peri-operative, means around the time of operation, that is, the operation of  implanting the Vagal Nerve Stimulation device]  vocal fold paresis  [partial paralysis, sometimes called a "weakness" in the movement of a vocal cord]  occurs in approximately 50% of subjects. Further, laryngeal electromyography performed before implantation of the vagal nerve stimulator is a statistically significant predictor (p < .05) of which patients may be at risk for extended vocal fold abnormalities. Possible explanations for this phenomenon are offered. Surgical modifications to limit vagal nerve injury are offered. Key Words: vagal nerve stimulator, voice complications.

 ___________________________________


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-----Original Message-----
From: L
Sent: Friday, March 02, 2007 8:27 PM
To: SID3VOICE for Karnell
Subject: RE: Vagal Nerve stimulators to control epilepsy and subsequent
dysphonia


Hi R--Yes, I had a patient last year with the VNS...she was a young
20-something college student with severe, uncontrollable, non-localized
seizures and was also a singer.  She had some mild-moderate muscle tension
dysphonia, which I believe was probably in compensation to the periods of
dysphonia when her VNS would activate.  The dysphonia this would cause
lasted a few seconds and reminded me of the sound when, as a child, one used
to sing in front of a breeze-box fan.  It causes a rapid vibration in the
vocal cords.  Unfortunately, I did not have my scope at that time and was
unable to actually see what was happening in the larynx during activation of
the VNS.  It would have been interesting.   
In therapy, we worked on techniques for vocal focus and resonant voice therapy techniques as well as breathing exercises.  Basically, the same techniques I would use for typical
muscle tension dysphonia.  She did have to turn off the VNS when she sang,
of course, for a performance--but did leave it on during her voice (singing)
lessons and had to just stop singing while it activated. I hope this is
helpful.
 
L
 
 ________________________________


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 -----Original Message-----
From: M
Sent: Tuesday, November 06, 2007 11:24 AM
To: SID3VOICE for Karnell
Subject: RE: Vagus Nerve Stimulation Device


I found this interesting article while looking up something else.

The Laryngoscope

Lippincott Williams & Wilkins, Inc., Philadelphia

© 2003 The American Laryngological,

Rhinological and Otological Society, Inc.

 

Laryngopharyngeal  Dysfunction From the Implant Vagal Nerve Stimulator

 [Laryngo = voice box (larynx), and pharyngeal = throat]

 [Authors] Craig Zalvan, MD; Lucian Sulica, MD; Steven Wolf, MD; Jeffrey Cohen, MD, PhD; Omar Gonzalez-Yanes, MD; Andrew Blitzer, MD, DDS

M
Speech-Language Pathologist

_________________________________


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-----Original Message-----
From: J
Sent: Thursday, April 24, 2008 6:14 PM
To: SID3VOICE for Karnell
Subject: vagus nerve implant


I am scheduled to evaluate a 60 y/o gentleman who is a few weeks s/p implantation of a vagus nerve stimulator (VNS) for epilepsy. Treatment Dx  [dx = diagnosis]  is “weak voice,” from neurologist; he has not been seen by ENT. Surgery report describes the VNS being wrapped around (L) vagus nerve near carotid sheath; a second part of the device was implanted in (L) chest wall below collarbone. I am assuming that the dysphonia  [speaking problem]  is a “collateral damage” paresis  [paresis means mild paralysis] . There is no mention of swallow problem.  We will do routine eval & strobe.
 
Just wondering if anyone has had experience with this specific procedure; & if there are any precautions that would differentiate it from a similar dysphonia post-cardiac or post-thyroid surgery.
 
Thanks in advance --
 
J
Senior staff speech pathologist

__________________________________________________


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 -----Original Message-----
From: Marshall Smith
Sent: Thursday, April 24, 2008 6:33 PM
To: SID3VOICE for Karnell
Subject: RE: vagus nerve implant


Vocal fold paralysis commonly occurs after VNS implant. The paralysis (or immobility) intentionally occurs as the VNS fires for 30 seconds, every 5 minutes, with titanic [huge & powerful] contraction of the laryngeal muscles. Usually this is a minor annoyance. However, persistent or permanent vocal fold immobility due to injury to the vagus nerve (a paresis or paralysis) can occur. We have seen several cases of this.  If the vocal fold is immobile (not just during VNS firing), and the surgical procedure was recent, further time is needed to see if the paralysis will be permanent.

Marshall Smith, MD  [He's a "laryngologist" type of ENT doctor]
Voice Disorders Center

University of Utah School of Medicine

Salt Lake City, UT


 _______________________________

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From: K 
Sent: Tuesday, January 05, 2010 4:02 PM 
To: SID3VOICE for Karnell
Subject: Vagal nerve stimulator   

Hi all,

It's been a few years since I have worked with a patient with a vagal nerve stimulator, and I wonder if anyone has any thoughts?  How long after the implant does the voice stabilize - does this take time, or is their post-implant voice pretty much it?  Can the stimulator be adjusted to impact the nerve less?  Is there anything I should NOT do with her?  Any tips are most appreciated.

Thanks so much, and happy new year!
K 

 
 ______________________________
(

-----Original Message-----
From: M

Sent: Tuesday, January 05, 2010 3:27 PM
To: SID3VOICE for Karnell
Subject: RE: Vagal nerve stimulator



Forwarded  [by M] for colleague  [C]:

 -----Original Message-----
From: C
Sent: Tuesday, January 05, 2010 4:17 PM
To: 'SID3VOICE for Karnell'
Subject: RE: Vagal nerve stimulator

 [Relates to K's message above]

Does the patient now have a vocal fold paralysis? If so, what is the extent of glottal insufficiency? We have had a few patients in our clinic with vocal fold paralysis s/p [s/p means "status post", which means "after"] vagal nerve stimulator in the past year with quite significant dysphonia [problems talking], however I've not seen any for therapy.

C.

 _______________________________



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Date: Wed, 6 Jan 2010 08:45:36 +0800
Subject: Re: Vagal nerve stimulator
From: K

To: sid3voice@list.healthcare.uiowa.edu

 i haven't worked with a patient & VNS in a long time either, however, from what i remember, most of my VNS patients (implanted due to seizures) had only a temporary paralysis of the LTVF that coincided with the cyclical changes of the stimulator. therefore, voice was normal most of the time, however, every 5 minutes (for example) the voice would go temporarily hoarse due to a temporary paralysis (that lasted only 1 minute, again, for example). this was quite interesting to view via videostrobe. the patient could usually feel the cyclical changes approaching, so it was easy to educate the patient on compensatory strategies that he/she could implement when needed. this may help or may not even relate.


cheers and happy 2010,
K
___________________________________


(10)

-----Original Message-----
From: D
Sent: Tuesday, January 05, 2010 6:14 PM
To: SID3VOICE for Karnell
Subject: RE: Vagal nerve stimulator


Dear Listserve,
 
K's description below  [see K's description above]  is the exact experience I have had with a patient with a VNS.  It was quite amazing under videostroboscopy as the tvfs  [tvf's = true vocal folds]  were in a mostly normal vibratory mode and when the pt felt the stimulatory activate (which was every 5 minutes) an immediate left tvf paralysis was visualized which resolved after 1 minutes time.  This patient had the VNS implanted due to severe depression.  The voice evaluation was performed for means of communicating with the surgeon who implanted the VNS to further allow for adjustments with intensity and timing.  This patient was aware of when the stimulator was going to activate and was not bothered by the temporary hoarseness.  Her question, which I did not receive an answer to, was are there any long term effects on the tvf  [tvf = true vocal fold] over time of this occurring?  Any bites out there?
 
Happy 2010 to All,

D
____________________________________

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-----Original Message-----
From: H
Sent: Wednesday, January 06, 2010 8:05 AM
To: SID3VOICE for Karnell
Subject: Re: Vagal nerve stimulator

Hi K,
I would think that if the negative voice symptoms continue the neuro team would have a role in evaluating the VNS settings to potentially reduce the impact on the larynx. This is a risk/benefit assessment depending on the severity of the medical condition that instigated the VNS implant. I have come across a few references that may help you.

Zalvan C, Sulica L, Wolf S, et al. Laryngopharyngeal dysfunction
from the implant vagal nerve stimulator. Laryngoscope 2003;113(2):
221–5.

Shaffer MJ, Jackson CE, Szabo CA, et al. Vagal nerve stimulation:
clinical and electrophysiological effects on vocal fold function. Ann
Otol Rhinol Laryngol 2005;114(1 Pt 1):7–14.

Ghanem T, Early SV. Vagal nerve stimulator implantation: an
otolaryngologist's perspective. Otolaryngol Head Neck Surg 2006;
135(1):46-51.PMID 16815181

Best,
H
 
 __________________________________________


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-----Original Message-----
From: K
Sent: Thursday, January 07, 2010 9:12 AM
To: SID3VOICE for Karnell
Subject: RE: Vagal nerve stimulator

Many thanks to all who replied on- and off-list.   This will be very helpful.  From talking to her on the phone it seems that she has a paresis or paralysys (my ear and her description of her voice changes suggest this), and she is a singer.  She has yet to see an ENT and will have a strobe to clarify things.  I'm grateful to be reminded that this doesn't just come with the territory for every implant user, and we need to act accordingly.
Thanks again,

K

[NancyB]

Hi Carol! I'm here for the exact same reason that you are. Although I have epilepsy, I never got the vns device, my younger sister did, and it almost killed her. She had hers implanted in 2008 and although it has been taken out she is still suffering from the side effects. She, unfortunately, developed a psychosis after the implant and had to spend almost a year in a psychiatric hospital because none of her doctors believed that it was caused by the device. We have no history of psychosis in our family and she was a registered nurse before the implant, so I think if she was psychotic before hand someone at the hospital would have noticed. Anyway, my name is Nancy and anytime you want to talk I'm here, we all are. As a matter of fact, if it wasn't for this fine group of what I now consider 'friends', I would probably have had a nervous breakdown because of what happened to her. I just wanted to welcome you and let you know that you are truly in good hands here. These people really do care.

[concerned lady]

Dear Nancy,

Thank you for your kind words. The reason I'm on this forum, is to try to help others who were harmed by the awful VNS device. I learned about this, because a nice person on this forum first alerted me to the awful effects of the VNS implant. The strength of many on this forum is inspiring.

I'm very sorry for your sister's terrible side effects of the VNS. I hope she can get help to overcome those bad effects.

Sincerely,
Carol (Concerned lady)
"Can't Breathe? Suspect Vocal Cord Dysfunction!" (my website)

[Dispatch]

 

More great info, THNX again Carol!

AAAwww, shucks Nancy--you make me blush!  LOL!

Be well!

[concerned lady]

Does anyone know of any clinical trials, anywhere, using one's own "adult" stem cells (from a bone marrow "aspiration", or, from one's blood), that could maybe help an injured left vagus nerve to grow back (regenerate)?

Just a thought.

Carol
Concerned Lady
"Can't Breathe? Suspect Vocal Cord Dysfunction!"

[Dispatch]

 

And a geat thought Carol, but I'm unaware of any trials such as that.  Have you been to clinicaltrials.gov (I think) and found anything there?

Be well!

[concerned lady]

Thanks! Yes, I checked all the clinical trials, but saw nothing about helping a vagus nerve to heal, etc.

Carol

[Birdbomb]

This may give you some help

http://www.eurostemcell.org/event/2010-world-stem-cell-summit