Saturday, March 08, 2008

My Fate About DPN 20 years ago and Today

About 20 years ago, I had a severe back pain that crippled me for almost a year forcing me to take a leave of absence from college. It started out with a virus-like condition making multiple trips to the bathroom for a week that prevented me from taking the finals. Luckily enough, I was granted a make-up date since I submitted an excused note from the infirmary. It took me a week to recover and I got to complete my studies for the quarter. I thought it was all over for me but I was wrong.

Within a few weeks later, right out of the blue on Christmas Eve, a shooting pain stabbed in my back. It was an excruciating type of pain that brought me to groan on the way to an emergency room. They gave me a dose of Demerol then sent me home with painkillers that I got to pop Dr. Feel-Goods in my mouth for every four hours for eight long months. I went from doctor to doctor because every time they told me what I had, it was different from the previous diagnosis. At first, they told me I had a common back pain and just to shove prescribed Motrins as much as I felt like it. Then a month later, another doctor said it was a pinched nerve then another said a sciatic nerve, then it was a degenerated disc and then and then and then...so you get the drift of the pattern. You know it is always wise to get a second opinion but when you get a different diagnosis more than two times, it is even wiser to keep on getting more opinions. I got my eighth one since no two doctors were found in an agreement, imagine that!

I was bedridden for three months and I never got to go downstairs from my bedroom. Yes, for three frigging months! A mere distance from my bedroom to the bathroom was all I could handle. I was fortunate and blessed to be surrounded by my loving, caring family and friends. My back started to evolve into an C-like-form since I could not walk straight. I thought I would never get to ski and dive again. My mother told me later that she thought I had some sort of a crippling disease that was incurable. It was a scariest moment of my life.

During the week of the Deaf President Now protest (March 1988) at Gallaudet, I was rushed in an ambulance at 5 o'clock in the morning to the hospital with excruciating pain. Again, I was heavily dosed with those powerful shots of painkillers. Then I was trapped in a traction being strapped for a few days while watching the news about the Gallaudet Deaf President Now protest without captions. There I saw the four leaders signing and that was what I could at least understand through their use of ASL. These were the days of pre-ADA era. Even I did not have access to communication let alone no interpreters provided by the hospital! I was grateful to my mother's friend who happened to be the interpreter but she was my guardian angel not because she interpreted for me, it was because she interpreted ways to deal with my decision about the surgery that was scheduled on the next morning. Never mind the code of ethics since she used a good judgment to set aside her role and be my friend instead. She volunteered to interpret anyway. She really influenced me to think twice about the surgery. The diagnosis at that time was that I had herniated disk in my lower back and that the disc had to be removed. You know, when a part of your body is being removed or even added, it is something you would need to consider heavily especially that the risks involved would be numbing in my legs and possible paralyzing from the hip below.

That night, my interpreter family friend said to me that the cat-scan results were not always accurate. She recommended me to get a Magnetic Resonance Imaging (MRI) where I am able to get more accurate results. She had experienced car accident related injuries leaving her to deal with unimaginable difficulties to get a right treatment. She mentioned that MRI helped her to find the right treatment. After she left, I could barely sleep all night. Imagine, no computer, no Internet, no DeafRead, no pager, no CC'd TV programs to watch, etc. where I was able to investigate for more information or to keep in touch with my close friends. Boy, I fought so hard to remain sane by reading a good novel but from time to time, I drifted off to think about what to say at the moment when the gurney was wheeled next to me. There were "voices" in my head telling me to cancel the surgery all night and I swore I could hear it so well at that moment. I never had that kind of experience before and even after.

When the dawn came, bright lights glared into my weary eyes as the doctor was greeting to me. I immediately showed him my hand as to signal a message "halt". I told him that I was not convinced about the surgery and that I wanted to get another opinion although I already had seven at that time. Immediately, I was discharged from the hospital and sent home with unbearable pain. I had to wait for few more weeks to have the paperwork shuffled for me to transfer to a different family doctor with a better health insurance coverage.

Finally, in April, I got to visit my new family doctor. He told me to lie down and raise my leg, one at a time. After I did that, he immediately said I didn't have herniated disc. Whoa! He said that anyone with this condition would not be able to raise their legs like that so he knew it was something else but didn't know exactly what was the problem. I was referred to a back specialist whose grandfather and father were in the same profession. I never forget this warm, friendly doctor who reminded me as Tom Selleck. He just returned from a skiing trip with white circles around his eyes thanks to the ski goggles. I just remember this so vividly because I was all visual and that I love to ski. Remember no interpreters provided and it is all based on writing back and forth.

He just made a referral for me to have MRI on my back area. Back then, it was so new and very expensive. MRI referrals were the last resort and only if it was considered really necessary. I believe today it is much more available than before but it was hard to get one back then. It only took a few hours to declare that I had a white spot around the area indicating that it was an infection in my disc but the doctor was not able to identify it. I had to stay in the hospital for a whole month to get biopsy procedure done but it was not successful forcing me to have an open surgery on my back where tissues could be gathered to identify the type of disease. The surgeons knew I had some sort of an infection so they took extra caution and care to prevent it from spreading in my body.

Finally, it turned out that I had a food poisoning disease known as salmonella. Nobody in the medical profession had ever heard of this, as it was a rare case. I received antibiotics through the needle for seven weeks and wore metal brace for three months undergoing physical therapy frequently. By the time the autumn season came, I was completely healed. It was a miracle. Some people came forward and confessed that they thought I was dying. I was really in a bad shape and I didn't blame them for thinking this way. My life was interrupted for ten months robbing my piece of college years and I was not making any progress as I continued to deteriorate leaving them hopeless that I was to get better.

I am just grateful to everyone and God for providing me support. I had to bring this up because when surfing in the net, I just came across the website on cochlear implant. It said that If an "MRI is needed, it would be necessary to remove the magnet which is a quick and easy procedure typically performed under local anesthesia. The surgeon will shave a small area of hair directly over the implant. A small incision will be made exposing the implant. The magnet is gently removed and replaced with a sterilized insert. The incision is then closed. You may experience some swelling and slight discomfort following the procedure."

Remember, I had an infection and no one knew what condition I had at the time. Imagine if I had to go through this hassle to get the internal magnet removed in order to be eligible to have MRI done, what would happen? When I asked my Dr. Tom Selleck what would happen if I went ahead to have my disc removed back in March, he replied with a sympathetic frown and said, "You don't want to know." I said, "Oh come on, just spill it to me." He said," Since there was no diagnosis that you had a severe type of infection, it would have spread to your heart and lungs causing attacks and collapses that may result in death." I just shuddered. So if I had a cochlear implant, it would require me to go through surgery to get the magnet out. I believe it will contribute to more difficulty for me to heal and I am not sure if I would still exist today.

Now fast-forward 20 years later, I find it odd that the almost same fate and at the same time of the DPN event has prevented me from going to DPN 20th celebration again. I was invited to present about Deaf Bilingual Coalition but had to regretfully decline since I just underwent a cervical fusion that the disk from the spine was removed and replaced with a bone graft. At least technology today allows me to submit a video clip of my presentation that in a way I could contribute and be a part of the event.

Before that, I got a MRI last fall for the second time in my life and questioned the MRI technician about what would happen if I had a CI since I thought it would not be an issue this time. But I was shocked and appalled to learn that even today, I would have to arrange a surgery to get it removed. I could not help but think all of these poor Deaf children and adults who had to go through this painful procedure just to get a MRI. It was already painful enough for them to suffer with their unidentified condition but to go through a surgery to get their metallic implant removed so that they could get accurate results blows my mind.

Most patients with cochlear implants cannot get MRI scans, as the implant is metallic.

Update Date: 2/12/2007

See the webcast on DPN tonight from 7:30 to 9:30 pm at DeafNation!

11 comments:

Penny said...

and NAD has never done anything to speak up for millions of Deaf children who are forced to get CI. John Egbert came forth and formed a new organization to speak for millions of Deaf children...and now NAD finally said oh oh oh! ASL is for us. Shame on this organization for not standing up for millions of Deaf children when CI came out. They are still not doing anything about this except telling us to click the button to become a member. Barb- I am glad you are okay and I am sorry you had to go through this ordeal. Glad God sent the Dr who knew what he was doing. :-)

deafk said...

Barb!

Wow! What an unbearable experience you had. I am glad you follow your guts. Guts are our friends most of the time!!

I could not relate to the not available captioning you had during DPN, oh my goodness! I am spoiled, espeically with CNN and its captioning.

CI? Sheesh! Good thing you mention here!

deafk

Platonic's Eye said...

Well, there are still serious problem between Being Deaf and Non-Being Deaf in our community. NAD did sleep and took a long time to figure out to do something about that! There is still lack of morale grounds. Many of Deaf Leaders do not understand what impact many of us in a long run! DPN already impact number of our Deaf Community but in end up everything is opposite. I have seen DPN that was 20 years ago, I still wonder about DPN, what become of those Deaf people who were involved with DPN today!!!

Jarom said...

I had MRI and that was after I was implanted... I didn't have to undergo major surgery like you implicated. They just do the local anesthesia then they just remove the magnet. They didn't stitch me up right away just some tape that held the incision (which is VERY small) together. After whole MRI testing, the surgeon just pop the magnet back in the silicone covering of the implant. They finally stitched me up. I wore my processor right away. It's much simple than you think.

Jean Boutcher said...

Omigod, Barb! I felt the pain for you as I read your post. Some doctors have no clue. They should have immediately suspected if one made "multiple trips to the bathroom" and should have tested your blood, stool and urine to trace the clue.

It is very complicated when an
implantee takes MRI. If my memory serves me right, it was in 1993 when the NAD last crafted its position paper. They should re-write it since it is a consumer
organisation.

Barb DiGi said...

Hi Penny, as we know, NAD has been in a neutral position when it comes to CI. The main issue today is about ensuring the rights of Deaf babies to have access to ASL and that is becoming an objective of NAD. You can say that DBC is a pressure group pushing for this matter of attention but we cannot do it alone. Yes, it is a blessing to have the right doctor to find the right treatment. Thanks.

Hi DeafK! Yeah, follow your instincts! If you feel something is not right deep inside, gotta listen to it. I know that dealing without captions seems so ancient but it was only 20 years ago that there were no captioning services in public facilities like hospitals. How much have changed for the better!

Hi Platonic's Eye, Yes, agreed with what you said. After watching last night's DPN20 presentation, I felt that there wasn't enough recap on the statistics on how much have changed since the DPN. We need to analyze in a deeper frame that should be shared thoroughly in such presentations like the DPN 20.

Hi Jarom, thank you for explaining your experience. I find it interesting how the procedure works but I am not sure if I would be able to handle this additional procedure when I was going through with my ordeal especially that I was endangered with infection.

Hi Jean, it was a year that I never forgot! You know how it is when it comes to infirmary service in college. They didn't even go to the extend to have me tested as they told me to drink tea and have toast, so that was it. So you can see how Jarom described about what it takes to remove the magnet before MRI and I don't know if I could handle that.

Anon: I had to remove your post since my entry is not related to what you just said and that I don't accept anonymous without names.

Deaf Pixie said...

Barb Gi... Wow!! you have hard time to struggle to get interpreter.. Very fortunely you have a family friend who can interpreter.. Thank goodness.. she have a great advice you about take a MRI..

I am telling you about MRI last April. I mentioned to SeekGeo about it.. he was shocked after insulted me by the front desk. I was frozen and un-comfortable with neck pain when I was seen MRI..

What's happened to me. I have a frequent headaches from neck spams. Painful .. So I told my doctor at Intern medical office did not offered me to physical Therpasit.. but she wont refeer.. I told her that I need massage. since my health insurance is not coverage for physical therpist. I have to pay 30 each of visit..

Dr agree that My insuurance can pay MRI. 100% per cent coverage.. she say Oh, Right !

she sent me to MRI .. One day I walked MRI to fill out the forms and I told lady I forgot to bring form that you sent me. she say Ok, Wait until interpreter show up and fill out for you.. I said WHAT ? I told her INterpreter is not responsible to fill out for me. I can doing it my own.. I was confused.. Thought she is must be nuts!

Somehow interpreter show up.. I wave at her. I knew her.. she informed the front desk.. The front desk.. She say Margaret is so smart.. interpreter say Oh,, really.. she was sat next me.. I told her about the insurance forms, etc.. she say Very common... finally call my name and talked with person who handle with MRI and radiologist. We came in and I was sat on MRI table. Tech told interpreter you need to move back by the door frame.. Interpreter say What I suppose to interpreter. Tech removed my glasses. 15 feet away from MRI.. I say I cannot see what interpreter. my vision is 20/40 on right and my left vision is 20/50. AFter I was frustrated in MRI.. in fiftten mintues. I realized It might mess up.. So, I told MRI how can I patient when I am itches.. I have a ezemeca skin problem.

AFter repeat after take other MRI until.. I finally done.. WE pissed off at front desk. What we learn that interpreter did not signed the content forms to permission to enter MRI..

I went out.. I told interpreter. Don't worry I will contact office manager by email. I emailed them and Office Manager was uspet for insulted me about interpreter situation.
I thought Front desk think Deaf mean mental retarted?? Of course I was confused from beginning
I told interpreter to reported to Owner of ASL interpreger agencies to call Offie manager at MRI.

I explained to office manager the situation was going on along with refused allowed interpreter into MRI, etc..I told them that I have been here 4 time in 10+ years ago. It was my first time insulted by front desk, I was confused and shocked.. I was speechless

The MRI clinic sent me a Olive Garden gift card.. They apologized us. Instead of suing MRI for A.D.A.

I learn alot about A.D.A.. I know how unfortunely you were stuck with DPN situation was began. Something that I really thank DPN did changed for A.D.A. for deaf job,etc.. But I feel bad you go through hard time with your back pain.. I know what it was looking likely painful. I had those similiar from unknown..
Obviously, NO fun back painful!!

I have had go through similiar.. I thought disk fell aparted by muscle or something. Like that.

Glad you recovered well.

Deaf Pixie

drmzz said...

Apparently my post didn't go thru, typing it again. I said I'm sorry you had to go through all that and again! Makes me even prouder of what you have accomplished since. It's good that you could submit a vlog to make for your absence. Get well soon!

20 years ago, I marched in the streets of Fremont from CSD to City Hall. Mayor was for DPN. We used local news media cameras as "vlogs" to send messages to the east coast! Never seen so many Deaf people marched in Fremont before, history!

Suey said...

Oh I remember it was horrible for you to go through I was glad you came back. I have been having back pains 6 months now and surgery would be my last resort. I hope you are doing well and recovering quickly.

Look how much things have changed in 20 years!

Twenty years ago... no computer, no Internet, no DeafRead, no pager, no CC'd TV programs to watch, etc. where I was able to investigate for more information or to keep in touch with my close friends.

Now... At least technology today allows me to submit a video clip of my presentation. And many more to list!

mishkazena said...

Twenty years ago, I was participating in the protest and the march to the Capitol.

One generation later, so much had changed and yet some thing remained the same. Now we have the modern technology gadgets and ADA to ensure that we have the access to communication

Yet we struggle with oppresson and deprivation of language.

I am glad you survived that horribe ordeal with your back back then and now recovering from a back surgery this year.

Deaf Woman said...

Wow Barb, you sure went through hell and back! Thank God you listened to "voices" telling you not to go through with surgery but to get MRI done! Unbelievable you had salmonella in your back, how did it get there? I thought it only goes through stomachs?! Wow!! Learning something new every day!

I've always told myself and others that if there's any SMALL hesitation, about anything, then follow it and make it a "No"...for example...if we have to decide about something...and decide to go for it...but then there's a tiny bit of hesitation in our hearts...my advise is, don't follow through! It takes practice to learn to listen to our hearts, sometimes it speaks very softly, in time, we learn to listen. I'm glad you listened! Whew!!

I hope you are recovering well after your back surgery! I surely hope you won't need to go through any more surgery for the rest of your life! I surely don't! Especially after I watched the movie: Awake. Oh my gosh, that's a scary experience!

Stay well and keep warm, Spring is coming soon! Smiles! :-)