Spasmodic Dysphonia Bulletin Board

First Botox Injections
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Posted by: Dixie ®
08/17/2011, 10:50:44
This morning I had my first Botox injections and wanted to share a little about my experience.

I have to say that it was a very positive experience as far as how the injections were administered. The doctor did an excellent job.

I didn't receive anything in the way of numbing medication, but the injections themselves were not very painful. I felt pressure and a little bit uncomfortable, but it didn't last long at all. I attribute this to having really kind people in the room and a gentle touch. ~smile~

I know that not everyone will have a good experience, but I wanted to share a quick positive story in case someone else is about to get there first Botox and might be a little apprehensive of the injection itself.

Now I wait and hope/pray for good results.




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Re: First Botox Injections
Re: First Botox Injections -- Dixie Top of thread Archive
Posted by: sunshinegirl14 ®
08/17/2011, 13:19:09
That's wonderful that all went well for you on your 1st injection!

I had my first Botox injection last week - but with the numbing meds. It was very quick and not very uncomfortable - although I must admit I have a fear of needles so I kept my eyes closed! I also had a great team of people in the room that made the experience more comfortable. I think my stress level was elevated though from reading about people having negative experiences. So, had I read your post - that probably would have eased the butterflies in my tummy!

The day of the injection, I did not notice much difference as I ate, drank, and spoke just about the same as before the Botox.

However, the next 4 days, I had a very difficult time drinking liquids - lots of coughing and I ended up with a sore throat. No trouble eating at all - but I was mostly just really thirsty (I could drink a lake! - lol!) And I tried everything - different sized straws, sipping slow, sipping with my chin down/in the middle/up high. Yesterday I found sucking on/and chewing small ice chips was heaven. Occasionally I am still coughing because I get carried away and sometimes the ice chip is too big. But it has made a world of difference!

My voice is just a whisper - but I've had some comments on how sexy it is. Soooo - that's not bad - lol! But I'm not working right now. I'll have to figure out how to get people to hear me better when I get back to work soon. But, to be able to speak without spasms - is really wonderful!

Good luck - I wish you all the best with your voice!




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Re: First Botox Injections
Re: Re: First Botox Injections -- sunshinegirl14 Top of thread Archive
Posted by: baystater ®
08/17/2011, 16:02:51
Getting a breathy voice shortly after the Botox shot means the doctor hit the right spot and it is working!!! That's good news.

If you experience the coughing when taking liquids right after the Botox shot, there is a technique that helps the coughing.
As you swallow liquids, bend your head down towards your chest..the heads positon might be something similar to bowing your head in prayer - then you may be able to swallow without coughing.




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Re: Update
Re: #39061 -- Dixie Top of thread Archive
Posted by: sunshinegirl14 ®
08/22/2011, 17:50:51
Hi Dixie,

I'm glad you are sharing! It has certainly helped me to discuss my experiences with others, too.

My 1st botox injection was August 10th (not quite 2 weeks yet) and I'm still having a difficult time drinking liquids - and drinking a lake right now certainly wouldn't satisfy me!! I'd say an ocean but without the salt - LOL! I thought it would have become easier and I've received all kinds of advice on drinking liquids but it doesn't matter how I try to drink liquids - I choke most of the time. Unless the liquids are thick. But I'm thirsty not hungry so thick liquids are not what I'm having a taste for. Ice chips are my best friend and I'm constantly carrying around a cup. I'm even looking into trying some shaved ice! I have found that a dry white wine does go down pretty easily - with only minor and brief occasional coughing. But I'm not a big drinker - so one or two small glasses and I'm back to my ice chips! Besides alcohol tends to dehydrate not hydrate but it's a nice change to just ice chips! I can't wait to be able to have a real drink of water - I may have to have an H20 Party - LOL!

Actions like coughing, burping, sneezing, and even laughing are very difficult and weird to do right now. And I still have a sore throat which tends to get worse just saying one or two phrases let alone sentences. But I think that's because I try to speak louder than I should. I'm getting better at that though.

It's my understanding that having a quiet voice is positive as once that ends we should have a good voice. But that's just from what I've read - I don't have any experience with that yet as I'm like you a "Botox virgin" - lol! I may have to look into a voice amplifier for work though if my quiet voice last longer than 3 weeks.

I understand what you mean about getting down - as I have my moments, too! But keep focusing on all your positive qualities - as I'm sure you have many - and that this is only temporary. If you would like an SD friend to email or facebook - let me know. We can chat and keep our spirits up!




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Re: Update
Re: Re: Update -- sunshinegirl14 Top of thread Archive
Posted by: ThePurpleGirl ®
09/16/2011, 03:26:39
hi sunshine girl!

I read your posting and it made me feel so much better about life with sd. Im going thru pretty much all the things u discussed and its nice to have this discussion board, and people like you to lift my spirits.

Im 28, i live in anchorage alaska and i was diagnosed in 2O10. i first got the injection in july 2010 and then i got pregnant so i hadto stop getting em. Boy was life sure hard without em. I could barley speak a sentance. I avoided so much. Now i got my first one after being pregnant, on 9-9-11 and im so excited to see if it works.

Anyways i could go on and on, but ill keep it short n sweet, thanks for lifting my spirits ;)

my name is stephanie, my email is sayroo@hotmail.com and im spurple shaze on fb if youd like to keep in touch thatd be so nice!




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Re: First Botox Injections
Re: First Botox Injections -- Dixie Top of thread Archive
Posted by: KimHavlik ®
08/22/2011, 22:29:58
I am a 23 year old, recent college graduate. I started teaching in a middle school in January and that is when I first noticed my SD. My students could not understand me, and I was not capable of doing my job. I had to take a leave of absence and felt extremely depressed.

I recieved my first botox injection on May 16, 2011. The first day after i really didnt notice much of a difference, except for not being able to swallow too quickly and some soreness around my neck. But by the 3rd day after the botox, i had literally NO voice at all. I would go to resaurants and my friends would have to order for me. Nobody could understand me if there was any sort of other noise in the room. It took almost three weeks to see improvement. Those 3 weeks were very difficult for me mentally. I felt embarassed, ashamed, and angry. Why did this have to happen to me?

By the third week my voice had started to become back to normal. Not 100 percent, but much better. No spasms, but just a softer voice. It kept improving until the end of June when i noticed the spasms starting to recur.

I have now recieved my 2nd botox treatment one week ago August 16. Dr. Sulica was not pleased with my level of results from my first injection. I have a checklist i have to fill out about how well i feel my voice is on each given day. He decided to up the dose but only inject one side. It has now been a week and i have no voice. I was working as a waitress for a summer job before school starts again but had to quit when i started losing my voice again.I am now working a retail job for the rest of the summer, but after last weeks botox injections, and how difficult it is to understand me....i dont know what to do. Nobody can understand me and people look at me like im a freak. Its very frustrating and a large financial burdeon,

I am about to start taking masters degree credits in special education in two weeks, but i dont know if i should even bother wasting money on a profession that i may not be able to do. SD has affected every part of my life. My job, my family, my friends, my self confidence, my social life, and my social skills.

If anybody has any helpful advice, i would really appreciate it. I dont know where to turn, and i am thinking about looking into the surgical procedures. I could really use someone to talk to. I am looking into other employment opportunities for people with SD.




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Re: First Botox Injections- to 23 year old recent college grad
Re: Re: First Botox Injections -- KimHavlik Top of thread Archive
Posted by: baystater ®
08/23/2011, 04:20:50
here is a write-up that may help:

NATIONAL SPASMODIC DYSPHONIA ASSOCIATION
EMPLOYMENT AND SD
You’re 30-years-old and on top of the world. Life is just beginning to fall into place. You may be finishing graduate school, starting your first “real” job, or simply planning your future.
Suddenly, you’re robbed of the ability to produce a clear, audible voice. If you have a job, it could be in jeopardy. If you’re looking for a job, you begin to wonder how in the world you’ll manage to get one without a good voice.
SD can be devastating and is not easy to cope with. Don’t let anyone minimize the situation or tell you otherwise. But, let’s face it, we’re young, we have many years ahead, and we should try to figure out how to be happy and make the best of it!

KEEPING YOUR CURRENT JOB
A diagnosis of SD doesn’t necessarily mean you have to give up your current job. Depending on the severity of your symptoms, your response to treatment, the amount of talking involved in your job, and your employers’ willingness to accommodate, you may be able to continue in the same job and/or field you’re in.
Tips to help stay at your current job:
- If you’re lucky, your voice responds well to treatment, and/or you don’t think your employer will notice or care, it is up to you whether you disclose this information. Don’t feel obligated to do so, especially if it does not interfere with your ability to perform.
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If you feel your job is in jeopardy simply because of your voice and you would prefer to keep it, consider setting up a meeting with your supervisor. Before the meeting, think about the organization and plan a discussion about how you can continue to contribute to it. Don’t be afraid to ask for help and admit that there may be some things with which you’ll need assistance (phone calls, amplification during presentations), and keep the discussion positively focused. If you’re a valuable employee, and depending on your ability to continue to perform the essential duties of your current position, many employers may be willing to accommodate your situation.
-
Look for opportunities to move to other positions in your organization that don’t require as much vocal use.
- When speaking with your supervisor or perspective boss, always paint your disability in the most positive light possible. Try to downplay the severity of it, if that is possible. Some thoughts to consider: This disability can be accommodated through phone amplification devices and increased use of e-mail. Therefore, accommodation costs are minimal and having you on board would count towards their diversity/EOE/ADA targets. Focus on how you can “make it work” together.
It may not always be possible to keep your current job, and some employers will be more receptive than others, but you have little to lose through honest communication. Keep in mind that it’s not always discrimination if you’re let go because of your voice. For example, an individual with SD may not be able to function as a 911 operator or a tour guide in a museum where, without a clear voice, the individual cannot perform the essential functions of the job safely and/or effectively.
JOBS WITH LOWER VOCAL DEMANDS
If you would like to work a field with lower vocal demands, consider some of the following fields. (You can also consider going back to school.):
Computer Programming
Medical billing, Coding and/or Transcription
Legal Billing
Word-processing
Court Reporter/Stenographer
Data entry and/or Data analysis
Proofreading, editing, copyediting
Paralegal (in an environment focused on legal research/writing)
Professional cleaning
Teaching in a deaf school/teaching computer skills to deaf adults (of course, you’d need to learn sign language)
Working in a Library
Fed Ex, UPS or messenger jobs
U.S. Postal Service
Writing
Bookkeeping
Accounting
Web design
Graphic Design
Archivist
Art Restoration
Artist
Repairman/technician (autobody, mechanical, electrical, phone, cable)
Cable Installer
Truck driver, bus driver, chauffer
Stock Photography Researcher
Lab Tech
Chef/Cook/Food Service
Working in a Greenhouse/Floral Arranging/Basket Making
Seamstress/Tailor
Researching/Research Assistant
Pet Groomer
Grantwriting/Program Development
Real-time and/or Offline Captioner
Go to medical school and come up with a cure for Spasmodic Dysphonia
VOCATIONAL REHABILITATION
Another option is to contact your State’s vocational rehabilitation facility. They are there to help individuals with disabilities find a job that fits their abilities and accommodates their disabilities. In some cases, they will also pay for education and training for you to get into a new field, and counsel you on workplace accommodation and assistance. They may even pay for initial medical treatment to make you more employable and provide information regarding low-cost housing for individuals with disabilities.
Their job is to place people with disabilities into well-paying jobs (often with health insurance) suited to one’s education and experience. If you need help, don’t be shy about using them! It usually takes a letter from your doctor (ENT or neurologist) to certify your disability. From there, you’re assigned a vocational counselor who will work with you. Most of the employment placement assistance services they provide are free, while some of the offers for job training/paid education will be based on income.
If you can’t find your State’s local vocational rehabilitation office, call your local social security office (or visit www.ssa.gov) and ask them to point you in the right direction.
ADDITIONAL SUGGESTIONS AND CONSIDERATIONS
Work for family or start your own business. Ask other SD people what they do in their current job to cope, or in finding a less vocally demanding job. Post questions on the NSDA Bulletin Board (www.dysphonia-bb.org/forums/sd) requesting information or talk with others at your local support group. Some agencies actively recruit and/or are willing to hire individuals with disabilities. Many state and local agencies, including hospitals, etc. may fit this category – you may want to briefly and positively discuss your abilities and accommodation needs in the cover letter with your resume.

Lastly, I was diagnosed with SD when I was much older than you (54). If I was diagnosed with SD at age 23, I would look at the SLAD surgery.




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Re: First Botox Injections- to 23 year old recent college grad
Re: Re: First Botox Injections- to 23 year old recent college grad -- baystater Top of thread Archive
Posted by: KimHavlik ®
08/23/2011, 22:15:12
Thank you so much for the information you gave me. I am particularly interested in teaching deaf students. Perhaps i could continue receiving my degree in special education and in addition learn sign language. It seems like an appropriate career.

Right now im just feeling that there is no other career in this world that i will be able to perform effectively. This really makes me anxious and social situations make me extremely anxious.

Has anybody else ever had anxiety issues that came with SD?

And what about the surgery? I have done some reasearch about the surgeries, but I dont know which one fits my needs/success rates/side effects etc.




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Re: First Botox Injections
Re: #39067 -- Dixie Top of thread Archive
Posted by: KimHavlik ®
08/23/2011, 22:19:26
Thank you for your kind words. I didnt see your e mail (as im kind of new to this kind of messaging) I am looking into support groups in my area. I live on the Southern tip of Long Island so ill have to see if there are any closer to my area.

How has your reaction to the botox been so far? It was a week today and i feel my voice improving very slightly. its just very frustrating interacting with clients and having to constantly explain why they cant hear me.




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Re: First Botox Injections
Re: Re: First Botox Injections -- KimHavlik Top of thread Archive
Posted by: Jenny ®
08/24/2011, 00:30:43
Hi Kim..I'm 46 now, but, started my SD journey when I was 37 and studying for an Advanced Diploma of Accounting..How your feeling is totally normal..After awhile I learnt to accept SD and found that I planned (where possible) my social events around the good voice days..Don't feel embarrassed, as SD can strike anyone at anytime & if your friends are true friends they will support you all the way..Hopefully Botox will help you..Botox has been a life saver for me, but, took a year or two to find a happy medium..At my worst (when undiagnosed and couldn't put a sentence together) I completed my Diploma and had a teacher propose to me..We've been married now for 5 years..Don't give up hope..When this challenging disorder strikes, you can still be productive and have a happy life..Take care..Jenni, Australia, SD 9 years



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Re: First Botox Injections
Re: Re: First Botox Injections -- KimHavlik Top of thread Archive
Posted by: Sojourner ®
08/24/2011, 07:06:33
There is an NSDA SD support group on Long Island. Here is the info. Please feel free to contact the group leaders. They would love to hear from you and tell you more about their group. They can also be a resource to you as you travel on your journey with SD.

Long Island Support Group
Lisa Chupka
violet516@aol.com
Lori B.
SDLongIsland@aol.com




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