kathibook wrote:
miserableinmissouri wrote:
Mags and all of the other brothers in sisters in same situation 2 years ago, after 3rd round of cervical surgeries (last time 2 discs removed) plate placed too far in my throat, so.... my epiglottis doesn't do it's job of closing off my airway when I swallow. I've had prob 10 - 15 episodes of pnuemonia from aspirating food/liquids into my lungs. A yr ago I saw a swallowing specialist (ENT) he did a scope while I watched. He showed me where the plate is causing my epiglottis to malfunction, told me I needed PT for swallowing (ins wouldn't cover) so couldn't do that. Suggested I return in 3 mo. to discuss a feeding tube. I'm in my 50's and always have been vibrant. He also told me to come home and tell my family how dire my circumstances are. Said I mostly aspirate liquids. I have been sleeping in a Lazy boy for 18 months. My low back kills me now, so uncomfortable. But I have no gag reflex (nerves cut) and now have the chance of food coming up during the night if I lie flat and then aspirate that food into my lungs, which he said would have acid in it and REALLY cause me a problem. OK - I came home, talked with my 17 y/o son and he asked me "mom where is your faith???" He said "that man is a dr, not God, I know God will not take you away from me!!!" so for the past year or so I've been very careful what I eat, never chips, little bread b/c it gets caught. Chew up my pills and use lots of water. Haven't returned to ENT again. Have had pneumonia only a couple of times. Only one serious case, but I refused to go to the hosp and took care of myself at home. I don't want to scare anyone, just let you know my issue. It sucks, but its my issue now. So I do the very best I can with what cards I've been dealt. God bless all of you. I feel for you. Terri
I am so very sorry for you. Thanks for sharing.
Have you considered suing the surgeon who performed your surgeries? Sounds like pretty significant surgical error to me.
You may be able to find the PT exercises you need on the internet....worth a try.
From personal lawsuit experience,(almost 7 years) everything that we all talk about here falls under the "small print" on the release form you sign prior to surgery. This is my opinion, proceed how you want. I have no feeling on the left side of my tongue, it sticks out to the left permanently, speech therapy for a year, choking fits, coughing fits, those are just some of the issues associated with the dysphagia I developed from them damaging the nerves when they went into my neck. For me it me it was either surgery or paralysis from the neck down. I am 47 now have had spinal surgeries since age 22. Spinal surgery is old hat for me, I don't fear it at all because in the past it had ALWAYS helped me, one of my other surgeries on my low back was a life saver, with out it paralysis from waist down at 32 years old. None of my 4 surgeries has EVER prepared me for the issues I have now. All the things most people don't think twice about, eating & breathing have become my enemies. I read Terri's post earlier and I very much relate to her story. You really have to face the facts of your circumstance and embrace it as tough as it is. I don't talk with my mouth full, which I shouldn't anyways!! lol But I always have to clear my palette completely before speaking, I don't drink fluids fast, meat FORGET IT!! I have half my tongue, it is perfect set up to choke!! If I eat something REALLY sweet that causes excess saliva, not good, it gets thick and mucousy and I can't swallow and clear my airway. Winter, lookout, if I get a cold or something respiratory related I almost suffocate every year, gets scary, almost like asthma, so I have a permanent zPack and steroid prescription for each season…. After my coughing choking fits I have all this trapped air in my stomach I can't release or belch effectively because the muscle tone of my tongue. Not very lady like sounding like a beer drinking chain smoker…. (my voice is very raspy now) Shutting up. I have found it interesting when I focus on my blessings the wickedness fades away. As messed up as I am, it could always be worse and finding this message board and hearing these stories makes me see, it really could be worse.I feel for all the people on this boards and keep you in my prayers for some type of relief or resolution. The more I talk about my issues the more apparent they are to me so I really try not to dwell even though it seems impossible at times. I am on NO medication, I do pain management, careful not to do things, eat things I shouldn't, I am very high energy so this has been difficult for me through the years. I have two daughters that need me, that is what keeps me going.
i hope you're ok
In February 2010 I started feeling weakness in my right leg and started on a course to determine its cause. By June of 2010 I was told that I needed ACDF surgery (C5 thru C7) to stop the effect of severe cervical stenosis with Myelopathy and if I didn’t the symptoms would get worse and affect both legs. At that time I was experiencing weakness in my right leg and an abnormal gait. I was in all other ways as functional and without pain... normal, I suppose.
I went for a second opinion and after 4 months at the Cleveland Clinic, my wife and I were told they would do the surgery, and then 2 months later was told that the compression in my cervical area wasn’t sufficient to cause the symptoms I was experiencing and they didn’t know what the cause was. The head of the Spine clinic said I was the “odd duck”. They would not do the surgery. I was told “I changed my mind”. By this time I was walking with a cane occasionally dragging my right foot.
I went for a third opinion and was told again I needed ACDF surgery (C5 thru C7) to stop the effect of severe cervical stenosis with Myelopathy and if I didn’t the symptoms would get worse and affect both legs. The doctor said this with absolute confidence and wondered why I had not had the surgery a year earlier. By this time the weakness and spasticity in my right leg was very noticeable. On September 19, 2011 I underwent ACDF surgery.
When I went back after 4 months and I now had to use a walker since my initial symptoms have progressed to my left leg with no end in site, the doctor now much more sympathetic explained that he didn’t understand why the surgery had not arrested the progression of my symptoms.
By June I was experiencing the issues I have read about here and was also sleeping in my Lazy boy. I pleaded with my surgeon to remove the plate. He asked me to see an ENT specialist before he scheduled surgery. I did but afterwards he arrogantly told me I could find another surgeon to remove the plate but he would not because he thought it would cause more problems. When asked to delineate he just said more problems, His attitude was resolute and without compassion. I provided research from a Houston group who studied the experience of over 40 patients with the same symptoms who had their plates removed. The results were irrefutable where Guy R. Fogel, MD and Mark F. McDonnell, MD with Houston Spine Surgery, 5225 Katy Freeway, Suite 600, Houston, TX77007 in The Spine Journal 5 (2005) 140–144 said: “Removal of the cervical instrumentation in patients will improve the dysphagia. This improvement with surgical management, as compared with the dissatisfaction before surgical treatment, documents that this surgical treatment is a reasonable option.”
After a couple frightening events that impressed me that I may not make it through another episode I drafted a letter and sent it to my surgeon, again stating my case along with the most recent experiences. I copied my family doctor and the EMT doctor. Two days later his admin called and scheduled the removal.
It has now been almost a year and I am so thankful I was persistent. I am able to sleep in bed with my wife of over 45 years again. I can hardly walk now but am thankful for my ability to enjoy food, clear my throat when I cough, no pain when I swallow and sleeping on a flat bed!
When I read these letters you all have written I can feel your discouragement, despair and sense of hopelessness. I was there. My prayer is that you find resolution with the appropriate treatment.
~Dave
Thank you for your story Dave.
I've never heard from anyone who has had the plate removed, it is good to hear that your symptoms of dysphasia were resolved. It sounds like making a decision to have the plate removed was a matter of weighing worst scenarios....tragically, a place that many chronically ill persons find themselves in all too often. I certainly do salute your bravery, I have been told by several neurosurgeons that having my plate removed would be a dangerous proposition, and I would assume that to be the case with anyone who undergoes surgery along the cervical cord.
Very happy to hear you have regained some small measure of normalcy to your life Dave and thank you again for sharing!
Does anyone know how you would go about finding out exactly what hardware was used in our spine. What type of implant used, the manufacturer. Reading all the posts on this board I am seeing all these issues that seem to be created by these surgeries, breathing, speaking etc.... Alot which I have. While doing research on my issues I came across this. Has anyone heard of this? I am trying to decide if I should have my plate taken out, but I fear the problems and unforseens that carries with having it removed.
This particular implant is being questioned. They knowingly used hardware that was approved only for the lower spine not Cspine and mislead people and used
***Post is edited by moderator *** Web addresses not allowed***Please read our Terms of Use
*The FDA has received numerous reports of Medtronic Infuse problems associated with its use in cervical spine fusions, for which it has not received FDA approval. These Medtronic Infuse problems include difficulty swallowing, breathing and speaking, as well as swelling of the neck and throat tissue. Other Medtronic Infuse complications
*The Medtronic Infuse Bone Graft was approved by the FDA for specific usage in the lumbar spine, but recent investigations have alleged that Medtronic sales representatives marketed the graft for use in the neck area. Off label use of the Medtronic Infuse Bone Graft may have led to side effects like uncontrolled bone growth, cancer, sterility in men, and even death. Our Medtronic Infuse BMP Bone Graft Attorneys are here to help spinal fusion patients who may have been the victim of off label Medtronic Infuse bone morphogenetic protein injuries. If you are suffering Medtronic Infuse Bone Graft side effects, we're here to protect your legal rights.
Thanks Kathi, I am not looking back. To be able to have the normal function return to my throat is a blessing. This morning at 5:30AM I looked straight up and enjoyed the crystal clear sky and was able to see so many stars! WOW! My neck didn't hurt. I didn't choke. I just thanked God I'm alive with no more pain!!
I will continue to pray for all those here who are less fortunate than myself.
Dave- The thing I miss most I must say is being able to gaze at the stars, watch fireworks and check out a bird playing in the wind. I fear the removal of the plate because it has been in since 2006 and is no doubt settled in. I stress every winter because with cold season comes mucous and congestion and it is literally suffocating me with my lack of ability to clear my throat successfully. What was the recovery time for the removal? They were so sure my issues were intubation related or someother nerve damage. The plate being an issue was never even a consideration.
I am just about 12 weeks post op from a 3 level cervical fusion and am having pressure and trouble swallowing. I was wondering if it was normal which is what led me to finding this page. The pressure is right smack in the middle of the throat. I have 3 more days with the hard brace. But yes, that sometimes makes it harder to swallow. I can swallow pills now, which kept getting stuck at first. I guess my question is has anyone found anything to help with the trouble swallowing? When I first came home they gave me pred which helped, but they don't want to give it to me again since it is not recommended post op. Lots of prayer and smoothies!! Any other suggestions, advice?
Jack,
I felt better while I was still in the hospital! There were NO negative side effects, period. I can't speak for you or anybody else when I say I lost confidence in my surgeon when he would no longer listen to my concerns regarding my experiences. He would say I needed to go to speech therapy or see someone else!! He had done what he could do! I asked him for specifics regarding the down side of the plate removal. He would always be vague, so I took it upon myself to do the research myself.
Although there is always a risk going into any surgery, my symptoms had reached a point that when I actually read the Houston research by Guy R. Fogel, MD and Mark F. McDonnell, I decided I would have the plate removed. I was not going to listen to a Doctor who wouldn’t be direct with me regarding why he did not want to remove the plates and who couldn't care less about the upheaval my life was going through.
Speaking for myself, until death door opens for me I will never take a doctors opinion as the final word.
hi, i'm not sure how recent this post but i have gone through the same thing with my tongue after cervical spine surgery but on the right side. My tongue muscle is pulled back and when i try to stick it out, it goes off to the corner of my mouth. Not that i'm missing much but they are times i need it. Talking, swallowing ,sleeping ( i wake up every hour to clear my slavia) are all difficult. Its hard to explain to people what i'm going through but unfortunately you know what it is like
Hi, I have been scouring these posts as I have just had a level 4 cervical fusion along with disc replacements. Your medical records at the hospital where you had the procedure done will contain the type of hardware used. There is usually a sticky that comes with the hardware that is attached to the surgical record that will contain all the necessary information. Your surgeon should also have this information. (I work in the Medical Records Department of a hospital). Surgery should also have a copy of this on file. I would start with obtaining a copy from the records department, though.
Thank you so much for taking the time to write me. This board has been a Godsend in so many ways! If you have any random questions throw them out there. I am becoming an old pro at this spinal stuff. Guess I wasn't expecting to be a pro for something like that. =)