Had MVD Tuesday, 11/20, after all

General General TN & GPN (Old Site)
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I have tried twice to post from my iPhone and don't know where in cyberspace they are, so I will try again, although quite sleepy now.

Procedure was done in NYC, St. Luke's Roosevelt. The August episode had been waning but abruptly returned, leaving Pittsburgh out of the equation. Dr. Goodman was first consulted in 2009, a NY Best Doctor rated in 2009 and again 2011, certain he could fix me. He was the first one to make me feel any glimmer of hope. He is now Chair Neurosurgeon at St. Luke's and was from Columbia Presbyterian up until 2 years ago. His team is top notch as well. Traveling from Long Island to NYC, was a bit of a tax on the family, but we were blessed with hotel accommodations and festive distractions for our two teenage kids. Couldn't have been a more perfect plan.

Waking up from the anesthesia was better than expected. But day one was truly the pit of hell. I read from Vicdoc's post that he had trouble with his throat, and assumed that was his trigger point. I am know thinking differently. Surprisingly my greatest concern the first day, was my throat closing in. Breathing, swallowing, speaking all required supreme effort. It is like the muscles forgot what to do. I began to hyperventilate. In a panic I pressed the call button and had a team of specialists suctioning and setting up a nebulizer in response to my wheazing lungs. I have never had asthma and do not smoke. It was terrifying. But I guess the good news is, I was not complaining about double vision or muffled hearing. The doctors were pleased and reassured me, the throat will take time, but recover.

Day 2, in the am, I did not want anyone to see me or even speak with me. When the surgeon came in, I couldn't stomach what he had to say. Retching was a problem, but nothing was coming up. Just wanted rest. He has a terrific bedside manner and took no offense. He did manage to say that the vessel was extremely elongated, more that what he usually sees, so he had some tucking to do. Still, each hour got better.

Later Day 2, I started to feel a pinch at the usual point right back of the tongue. Dr. said that could be from years of damage to the nerve and might go away in time, and could be controlled with meds.

By day 3 I had a bit of a stabbing from underneath as well and was once again terrified. Dr. reassured the procedure went well. The symptoms were not electrical and not nerve stimulated, so this shall be overcome. Exactly what I needed to hear to put my fears to rest.

I was fortunate enough to recover in ICU for two days, when they put me in Step Down status, there were not available beds, so I remained in ICU, under the very best of care. Once I got on a regular floor, it was clear it was time to go home, where my care would be best.

I have been setting my iPhone alarm to wake me for meds, so convenient and efficient. A bit annoying waking up throughout the night to take them though, but they work! No shower yet and I don't really care. Very tired and weak for now.

I don't think I can wash my hair until the stitches are out, another week. Will know more Monday.

In terms of the breathing, or whatever obstacle hits you the hardest, have some point of strength to pull from. When I was in the pit of hell struggling for a breathe, my strength was drawn from The Lord. The music ministry at my church, City on a Hill, Middle Island, NY, sings a worship song by Hillsong, "I Surrender":

http://www.youtube.com/watch?v=2cE2qaCUiJ8

There is a verse in this song where Jesus in invited to "breathe within". As long as I could focus on that narrow path I was able to relax and breathe. As soon as I was on the wide and easy road, I was gasping for air.

Another song that ministered to me, on the ride home, was by King and Country, "Let my life be proof of your Love."

http://www.youtube.com/watch?v=pr9YVD05x8M

I was not a Christian when this disease started seven years ago. I thought I would never have this procedure. I thank the Lord, my friends, and family for standing with me on the wall for my recovery and pray the same for each of you.

All in all, day one, I was so sorry I did the procedure. By mid day two, so grateful. Prepare for the worst, but don't own it.

72-Day2.jpg (106 KB) 73-day3.jpg (31.3 KB) 74-day4.jpg (30.7 KB)
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Bless you, I feel for you. I have been praying every day since I got through my first episode of GPN 6 years ago.

1 month out I am so much better off than my preop state, but the recovery is slow and mine has not been always in the "better" direction. This led to a couple of panic attacks when I struggled to swallow or the speak at about 2 weeks and 4 weeks. My main problem now is lack of any energy and the peculiar, partial and uneven loss of my sense of taste which I have been told is another temporary issue. I understand the respiratory distress you feel, it all gets better. I still have my nebulizer at my bedside as I type. Hang in there, I know how it feels to want to be back to normal like NOW, but somehow you have to gather up your strength, take a deep breath and try to be patient when the frustration builds. You have made it through the worst part, the rest is slow but you made it!. Nerves take long time to heal, and the brain is a huge collection of nerve tissue! And the sleeping, that's something else. I slept nearly continuously for the first 2 weeks, and the next 2 has been hard to fall asleep and to stay asleep. It's a roller coaster! I have said a little prayer for you and my hopes go out to you for a complete recovery.

Vicdoc

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May God bless you and speed your recovery.

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Dear Donna, thank you for sharing your story with us, it sounds terrifying and brave and a true testament to your strength. I hope the results are everything you and the rest of us dream and pray for. And most important, kudos to The Lord for holding your hand through it all…thanks for sharing.

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Glad to hear the procedure went well and that you are doing OK. Reading your post brought back memories of my surgeries and experiences. It will get better... and you have an awesome scar! LOL! The best part was seeing the pic of you with a smile on your face. Best wishes and continued good health!

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I just joined the support group a short time ago.

I've had severe GNS for 6 years and have been discussing this procedure with my surgeon.

I am not sure if I'm ready for this, I work full time and I know I will need to take at least 6 weeks off, from what I understand.

Your testimony is an inspiration for me and offers that glimmer of hope. Bless you.

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727Effron: You might want to consider Gamma Knife treatment if you are not able to have the MVD surgery. My mother is 68 years old and was not able to tolerate Tegretol and did not want to undergo surgery. She had a Gamma Knife radiation procedure at the Medical College in Augusta, Georgia. The recovery period is only a few days and it is an outpatient procedure. Her pain was better right away, but now a month and a half later, her pain is gone. The procedure is expensive, so you would want to find out if your insurance would cover it. (We were told by the hospital that many insurances do not cover it.) She was only the second case of GPN that they treated there. They treat TN frequently. There are no guarantees with the procedure, but it also worked for the other person they performed it on. The real question for us now is...how long will it last. They put an abrasion on the 9th cranial nerve. The assumption is that it could heal itself in time and then the pain could return.

727Effron said:

I just joined the support group a short time ago.

I've had severe GNS for 6 years and have been discussing this procedure with my surgeon.

I am not sure if I'm ready for this, I work full time and I know I will need to take at least 6 weeks off, from what I understand.

Your testimony is an inspiration for me and offers that glimmer of hope. Bless you.

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Thank you Jill :D



Jill said:

Dear Donna, thank you for sharing your story with us, it sounds terrifying and brave and a true testament to your strength. I hope the results are everything you and the rest of us dream and pray for. And most important, kudos to The Lord for holding your hand through it all...thanks for sharing.
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He is indeed! Not as bad as I had visualized. Going slow and not overdoing it.

pamcliff said:

May God bless you and speed your recovery.
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Congratulations on having the surgery!!! I am now over 2 months post op with no lasting issues from surgery and none of that pain anymore! Still am baffled why I put surgery off for so long. I hope you continue to recover well.

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Glad to hear everything went well,can you tell if it fixed your problem I finally got the ok im going in Dec 10th take care

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Donna,

(and everyone), thanks for sharing your stories!

I have an appt with Dr Wharen at Mayo Jacksonville on Dec 17 as well as neuro there. Still question of the diagnosis, as I have a very strange unnerving neck pain as well as throat pain. Maybe it is just denial on my part!

Laura, I saw that you had your surgery done with Dr. Horowitz at UPMC but when I checked UPMC website, it said he left in november 2012-- I was hoping to look into making an appointment. It sounds like he did an excellent job with your surgery!

Ernestine

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Yes he did an excellent job…I got a letter saying he was leaving:( I hope he going someplace where he will still do this surgery. The letter states that the neurosurgeon that has worked with him for years will still be there. I am sure that he is also well trained.

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Donna...I'm glad you're okay. It is nice to see your post. Looking forward to your next post. I wish you a fast and permanent recovery!

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So glad to hear you are doing well and inproving. Although, I just had surgery for throat cancer Nov 16, I am extremely interested in your progress, vicdoc and all who have undergone this surgery. Thanks for sharing your journey with us. May God continue to give you strength and bless you.

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Wow, I can't believe I am home two weeks already. The time has been a bit of a blur. Sleeping mostly, still. The car trip back into NYC (about 1.5 hours each way) to have the sutures removed knocked me out, but was all good news. The "phantom" pain under the tongue day 2 and 3 post op has stopped. My head is heavy, but headaches milder than expected. Surgeon claims I could have shampooed prior to the suture removal, lol. I followed the "book" which said not until the sutures were out. No harm done. I looked like my mom for a week with her 70s kerchief tied loosely, of course with style. My voice is still strained. Considering I am home alone most of the day and not talking, it is a surprise how much effort is required to talk when the gang gets home from work/school.

I consider myself to be strong, independent, and a doer. I have no problem resolving to the fact that this will take some time to return. Each of us is different and will bounce back when our system is ready. I have been blessed with a church that cooks dinner for us and of course my immediate family has been available to assist us in anyway they can. So plan for help, it will be greatly needed.

Doctor Goodman did advise at least 10 minutes of fresh oxygen, outdoors, daily. So this past week, I have been bundling up and sitting where I can find some sun, just breathing in the freshness. That too preps for a lovely nap! I haven't ventured out of the house other than that, not even to the mailbox at the curb. I had fallen two years ago and with that one injury required back surgery. So two surgeries in two years have made for one rather cautious person. I doubt I am being over cautious. I will know when it is time to do a bit more. For now my days go quick and are filled with not much more than rest and eating (which takes a long time to chew purposely and swallow with a water.) I am not much of a TV watcher and don't have stamina to read yet. Of course there is online Christmas shopping, which has been a pleasure! I have been viewing Calvary Chapel aired live from Fort Lauderdale on Wednesdays and Sundays and enjoy that. http://www.calvaryftl.org/welcome/

Neuro's assistant brought up an emotional side effect from the meds to control the swelling. I was at times angry over the littlest thing and other times just weeping. Both not my character! My family didn't know which way to run! I was relieved to hear her describe it without me even questioning. Those meds ended a week ago and so did the moods for the most part. A little weeping is good for the soul!

I am weaning myself off Trileptal as my pain management doctor has not returned my calls. I have been taking 900 mg and no longer need it. My neurosurgeon didn't suggest a weaning process as he wanted the pain management doctor to handle that. I am down to 600mg per day and hope to hear from PM sooner than later. I was advised that the sleep issue Vicdoc described could be anticipated. Sleeping mostly, then struggling for sleep once I weaned off the meds completely.

I have Advil for pain, but rarely need it. My body craves brain foods, cauliflower, fish, steamed carrots, of course soup. Taste is off a bit. I am not concerned.

Doctor wants to see me back between Jan. 20th and Feb. 20th. As far as returning to work some time around there and part time at that. I teach middle school and can't even wrap my mind around it at this point. But somehow I think I'll be ready by mid January.

I am not sorry that I waited this long to do the MVD, seven years. I think the timing was right. I was mentally ready, surrendered and exhausted all the alternative options. It seems like yesterday I was saying no way never to MVD. Now I still can't believe I did it! I am so thankful for each blessing that contributed to the success.

Praying for crystal clear answers for those of you seeking solutions and continued healing for all of us. Peace.