[ladynbraids]

My Successful MVD Experience - Nov. 17, 2010

Monday, Nov. 15, 2010 - We left Arkansas airport @ 8:40 a.m. & arrived @ the Best Western Parkway Inn Pittsburgh @ 4:00 p.m. We took the shuttle from the airport to the hotel. This hotel is a great choice for anybody not wanting to rent a car or drive in Pittsburgh. The traffic is a nightmare, and the shuttles leave for the airport or downtown on the hour until 10 p.m. That night we went to Station Square & had a really nice dinner at Joe’s Crab Shack.

Tuesday, Nov. 16, 2010 - Up bright & early to be at the hospital to meet with Dr. Sekula @ 9:30 a.m. We had to catch the 8 a.m. shuttle in order to be sure we were on time with all the traffic. After arriving at the hospital, we used the early arrival time to walk & learn our way around the hospital. My husband & I both really liked Dr. Sekula after meeting him, and Dr. Sekula felt very confident that he would find a compression since he kept referring to me as “textbook TN.” After the appt. ended, we headed for the cafeteria where I had a light lunch consisting of salad. At 1:30 p.m., I had to be at the hearing & sound place. It was 4 p.m. before we got back to the hotel…long day! We had dinner delivered to the room. I ordered a childs chicken strips plate & ate very little of it from being so nervous. I could have nothing to eat or drink after 11:30 p.m. Didn’t get to bed until Midnight, but did sleep pretty well.

Wed., Nov. 17, 2010 - MVD Surgery Day
Alarm went off at 7:15 a.m. We caught the 8 a.m. shuttle to the hospital to be there for 9 a.m. We were in the waiting area until I was called to do all the paperwork. Another long wait & then I was called to go to a different section where I changed into the hospital gown, put on surgery stockings & booties, & they weighed me & took vitals. My husband was then allowed to come join me where we could spend some time together before they took me off. Next, I was taken to this large room that had many other people waiting for surgery. It wasn’t the operating room. Watched other people here & waited until finally the lady who was going to monitor my hearing during the surgery showed up. She told me that she had started working with Dr. Sekula last June, and that she was going to be braiding my hair. She brought the hair braiding job with her from the previous job she had, and said that everybody seemed to really like it. I have really long hair, so this was a definite plus to getting my hair braided before the surgery.

After my hair was finished, an IV was put into my arm. This is the very last thing that I can remember before waking up & the surgery was over. The surgery began at 11:30 a.m. and came to an end at 4:15 p.m. At 3 p.m. my husband received a call from Dr. Sekula who informed him that everything went well, and they were closing. About three minutes later he received a call from the nurse saying things were still going well, but the closure was taking longer than expected. Dr. Sekula now uses a closure where plaster like matrix is used for closure instead of a titanium plate. This procedure has shown to cause less CSF leaks. My skull is thin and after two different tries that were unsuccessful, he ended up having to use a titanium plate on me.



I was put into a regular room at 7 p.m. This was a complete shock to me as I assumed that I would be going to ICU the first night. I don’t recall reading where anybody else didn’t spend their very first night in ICU. When I woke up, my husband came into the room with a huge smile and told me that Dr. Sekula had found a severe compression. The Superior Cranial Artery was digging into the Trigeminal Nerve..this was padded off…and there was a vein nearby that was also padded off just to be safe. My eyes filled with tears hearing this! I also was aware that I was having NO shocks.

As soon as my bed was moved from recovery to a regular room, I began throwing up. I continued to throw up. My head hurt so bad, could barely move my neck, was very wobbly to walk on my own. Yes, in a regular room I felt very alone and abandoned after my husband left. My nurse that night was very little help the little she was around…she didn’t even help me go to the bathroom when I could barely walk. I was put into a room with a woman who had 3 surgeries in 3 weeks on her spine. The last one put a stimulator in her spine. She was in extreme pain, and I could relate, but she was threatening to sue them…which is partly why I really believe the nurse was avoiding our room. The roommate had the t.v. on the entire night, something was wrong with her bed & it shrieked every time she adjusted it. Almost like fingernails on a chalkboard. Her family kept calling her, and her ringtone was The Adam’s Family..with the finger snapping. Really creepy, annoying, & so UNFAIR to me having just come out of MVD surgery. I got absolutely NO sleep the night after my surgery rooming in the Adam’s Family Mansion. She was moved out early the next morning after my husband arrived at the Mansion, and spoke with the nurse. In fairness here, the day nurse was more helpful than the night nurse.


First Day after Surgery..Thur. Nov. 18, 2010 - After the roommate was moved, I was able to get some sleep. It was so hard to find any position to lay in that was comfortable. Everything on my body hurt. I was still throwing up, and my nausea medication was changed to one my husband recommended. He’s a veterinarian…LOL I stopped throwing up with the new medication, & that was a big help. I was also given a bag of fluids, but the IV had to be changed to the other arm before they could give the fluids because I couldn’t move my left…it was swelling up where the IV was located, the the fluids were extremely painful because of this. Once the IV was changed to the other arm, I could then receive the fluids. (My left arm is still extremely painful, swollen & bruised). I won’t sugarcoat it. The day of surgery & the day after are ROUGH. The only thing that kept me from questioning my decision was on the first & second day….absolutely NO shocks.

Two days after surgery, Friday, Nov. 19, 2010 - Dr. Sekula woke me up at 5:15 a.m. to see how I was feeling. About the same as the previous day, but I told him I was ready to leave the hospital & go back to the hotel. After my husband arrived, he helped me walk around the floor a few times. The nurse arrived a short time later, & all the paperwork was taken care of & post op instructions given. We called the shuttle, & were back at the hotel by noon. It was great to be back at the hotel. Headaches, neck & arm pain continue. Still was hard to get comfortable, but was able to get more rest this day, but not that night. People in the next room were extremely loud until the wee hours of the morning, and the walls were paper thin. My husband removed the incision strip, and took a photo. This was the first time for me to actually see it. WOW…very little hair shaved & only 1 ˝ inch incision. No redness nor swelling. I was extremely pleased with Dr. Sekula’s surgical skills!!! Most important…another day came to an end with NO shocks. My TN medication, Oxcarbazepine, was extremely cut back. I was told to take 300 mg today. Another day with NO shocks.

Sat. & Sun. Nov. 20 - 21 - The weekend was spent resting. Lots of Steeler fans arrived in Pittsburgh. Hotel was a little louder. Was told to take no TN meds on Sat. and to take 300 mg on Sunday. No shocks. My husband packed up the room in preparation for our flight the next day.

Monday, Nov. 22, 2010 - We caught the 8 a.m. shuttle to the hospital for our 9 a.m. appointment with Dr. Sekula’s nurse, Ann. Dr. Sekula had to leave to go out of town. Ann released my to fly and gave us the paperwork needed for the airline since I had requested a wheelchair. I was told to stop ALL TN meds. Was sorta surprised with that one. I was weaned off fast. We were back at our hotel for 10:15 a.m., so I was able to take a nap before checking out & leaving for the airiport at 1 p.m. The pressure on the plane did hurt the ear on the side of the surgery. After many rain delays in Chicago, we finally arrived home at 9:15 p.m. HOME SWEET HOME! Also, another day of NO shocks.

I am now 9 days past surgery. Getting a lot of rest daily, headache continues, neck pain is less. Can sleep on my right side now. Each day seems to get a little bit better. Since surgery, I have had absolutely no shocks. I am so thankful for Dr. Sekula. As each day passes, I become more convinced that I have been given my life back.
Now, my hope is that what I have taken the time to write might be of help to somebody else trying to make the decision to go through surgery. For any newcomers to this board, I really believe that having no other procedures done before a MVD can really make a difference in the outcome. When we are in so much pain, we want to do anything to get rid of it. I almost had gamma knife done at one of the worse times of pain, but fortunately canceled at the last minute. Now that MVD surgery is behind me, I am so happy I made what I personally feel was the right decision for me. I have now been shock free for 10 days after having trigeminal neuralgia daily for the past three years. I only had three remissions that lasted for one week each and the last one in March which was for a whole month.
MVD surgery is rough, but after I get through all this recovery, I can begin living again…I will have my life back again. Please feel free to ask any questions.

Judy

[EE03]

Originally Posted by ladynbraids

My Successful MVD Experience - Nov. 17, 2010

Monday, Nov. 15, 2010 - We left Arkansas airport @ 8:40 a.m. & arrived @ the Best Western Parkway Inn Pittsburgh @ 4:00 p.m. We took the shuttle from the airport to the hotel. This hotel is a great choice for anybody not wanting to rent a car or drive in Pittsburgh. The traffic is a nightmare, and the shuttles leave for the airport or downtown on the hour until 10 p.m. That night we went to Station Square & had a really nice dinner at Joe’s Crab Shack.

Tuesday, Nov. 16, 2010 - Up bright & early to be at the hospital to meet with Dr. Sekula @ 9:30 a.m. We had to catch the 8 a.m. shuttle in order to be sure we were on time with all the traffic. After arriving at the hospital, we used the early arrival time to walk & learn our way around the hospital. My husband & I both really liked Dr. Sekula after meeting him, and Dr. Sekula felt very confident that he would find a compression since he kept referring to me as “textbook TN.” After the appt. ended, we headed for the cafeteria where I had a light lunch consisting of salad. At 1:30 p.m., I had to be at the hearing & sound place. It was 4 p.m. before we got back to the hotel…long day! We had dinner delivered to the room. I ordered a childs chicken strips plate & ate very little of it from being so nervous. I could have nothing to eat or drink after 11:30 p.m. Didn’t get to bed until Midnight, but did sleep pretty well.

Wed., Nov. 17, 2010 - MVD Surgery Day
Alarm went off at 7:15 a.m. We caught the 8 a.m. shuttle to the hospital to be there for 9 a.m. We were in the waiting area until I was called to do all the paperwork. Another long wait & then I was called to go to a different section where I changed into the hospital gown, put on surgery stockings & booties, & they weighed me & took vitals. My husband was then allowed to come join me where we could spend some time together before they took me off. Next, I was taken to this large room that had many other people waiting for surgery. It wasn’t the operating room. Watched other people here & waited until finally the lady who was going to monitor my hearing during the surgery showed up. She told me that she had started working with Dr. Sekula last June, and that she was going to be braiding my hair. She brought the hair braiding job with her from the previous job she had, and said that everybody seemed to really like it. I have really long hair, so this was a definite plus to getting my hair braided before the surgery.

After my hair was finished, an IV was put into my arm. This is the very last thing that I can remember before waking up & the surgery was over. The surgery began at 11:30 a.m. and came to an end at 4:15 p.m. At 3 p.m. my husband received a call from Dr. Sekula who informed him that everything went well, and they were closing. About three minutes later he received a call from the nurse saying things were still going well, but the closure was taking longer than expected. Dr. Sekula now uses a closure where plaster like matrix is used for closure instead of a titanium plate. This procedure has shown to cause less CSF leaks. My skull is thin and after two different tries that were unsuccessful, he ended up having to use a titanium plate on me.



I was put into a regular room at 7 p.m. This was a complete shock to me as I assumed that I would be going to ICU the first night. I don’t recall reading where anybody else didn’t spend their very first night in ICU. When I woke up, my husband came into the room with a huge smile and told me that Dr. Sekula had found a severe compression. The Superior Cranial Artery was digging into the Trigeminal Nerve..this was padded off…and there was a vein nearby that was also padded off just to be safe. My eyes filled with tears hearing this! I also was aware that I was having NO shocks.

As soon as my bed was moved from recovery to a regular room, I began throwing up. I continued to throw up. My head hurt so bad, could barely move my neck, was very wobbly to walk on my own. Yes, in a regular room I felt very alone and abandoned after my husband left. My nurse that night was very little help the little she was around…she didn’t even help me go to the bathroom when I could barely walk. I was put into a room with a woman who had 3 surgeries in 3 weeks on her spine. The last one put a stimulator in her spine. She was in extreme pain, and I could relate, but she was threatening to sue them…which is partly why I really believe the nurse was avoiding our room. The roommate had the t.v. on the entire night, something was wrong with her bed & it shrieked every time she adjusted it. Almost like fingernails on a chalkboard. Her family kept calling her, and her ringtone was The Adam’s Family..with the finger snapping. Really creepy, annoying, & so UNFAIR to me having just come out of MVD surgery. I got absolutely NO sleep the night after my surgery rooming in the Adam’s Family Mansion. She was moved out early the next morning after my husband arrived at the Mansion, and spoke with the nurse. In fairness here, the day nurse was more helpful than the night nurse.


First Day after Surgery..Thur. Nov. 18, 2010 - After the roommate was moved, I was able to get some sleep. It was so hard to find any position to lay in that was comfortable. Everything on my body hurt. I was still throwing up, and my nausea medication was changed to one my husband recommended. He’s a veterinarian…LOL I stopped throwing up with the new medication, & that was a big help. I was also given a bag of fluids, but the IV had to be changed to the other arm before they could give the fluids because I couldn’t move my left…it was swelling up where the IV was located, the the fluids were extremely painful because of this. Once the IV was changed to the other arm, I could then receive the fluids. (My left arm is still extremely painful, swollen & bruised). I won’t sugarcoat it. The day of surgery & the day after are ROUGH. The only thing that kept me from questioning my decision was on the first & second day….absolutely NO shocks.

Two days after surgery, Friday, Nov. 19, 2010 - Dr. Sekula woke me up at 5:15 a.m. to see how I was feeling. About the same as the previous day, but I told him I was ready to leave the hospital & go back to the hotel. After my husband arrived, he helped me walk around the floor a few times. The nurse arrived a short time later, & all the paperwork was taken care of & post op instructions given. We called the shuttle, & were back at the hotel by noon. It was great to be back at the hotel. Headaches, neck & arm pain continue. Still was hard to get comfortable, but was able to get more rest this day, but not that night. People in the next room were extremely loud until the wee hours of the morning, and the walls were paper thin. My husband removed the incision strip, and took a photo. This was the first time for me to actually see it. WOW…very little hair shaved & only 1 ˝ inch incision. No redness nor swelling. I was extremely pleased with Dr. Sekula’s surgical skills!!! Most important…another day came to an end with NO shocks. My TN medication, Oxcarbazepine, was extremely cut back. I was told to take 300 mg today. Another day with NO shocks.

Sat. & Sun. Nov. 20 - 21 - The weekend was spent resting. Lots of Steeler fans arrived in Pittsburgh. Hotel was a little louder. Was told to take no TN meds on Sat. and to take 300 mg on Sunday. No shocks. My husband packed up the room in preparation for our flight the next day.

Monday, Nov. 22, 2010 - We caught the 8 a.m. shuttle to the hospital for our 9 a.m. appointment with Dr. Sekula’s nurse, Ann. Dr. Sekula had to leave to go out of town. Ann released my to fly and gave us the paperwork needed for the airline since I had requested a wheelchair. I was told to stop ALL TN meds. Was sorta surprised with that one. I was weaned off fast. We were back at our hotel for 10:15 a.m., so I was able to take a nap before checking out & leaving for the airiport at 1 p.m. The pressure on the plane did hurt the ear on the side of the surgery. After many rain delays in Chicago, we finally arrived home at 9:15 p.m. HOME SWEET HOME! Also, another day of NO shocks.

I am now 9 days past surgery. Getting a lot of rest daily, headache continues, neck pain is less. Can sleep on my right side now. Each day seems to get a little bit better. Since surgery, I have had absolutely no shocks. I am so thankful for Dr. Sekula. As each day passes, I become more convinced that I have been given my life back.
Now, my hope is that what I have taken the time to write might be of help to somebody else trying to make the decision to go through surgery. For any newcomers to this board, I really believe that having no other procedures done before a MVD can really make a difference in the outcome. When we are in so much pain, we want to do anything to get rid of it. I almost had gamma knife done at one of the worse times of pain, but fortunately canceled at the last minute. Now that MVD surgery is behind me, I am so happy I made what I personally feel was the right decision for me. I have now been shock free for 10 days after having trigeminal neuralgia daily for the past three years. I only had three remissions that lasted for one week each and the last one in March which was for a whole month.
MVD surgery is rough, but after I get through all this recovery, I can begin living again…I will have my life back again. Please feel free to ask any questions.

Judy

Positive outcomes are always welcomed around here. Enjoy your painfree life.
Is Dr. Sekula at the same hospital as Dr. Janetta?

[ladynbraids]

Originally Posted by EE03

Positive outcomes are always welcomed around here. Enjoy your painfree life.
Is Dr. Sekula at the same hospital as Dr. Janetta?

Thank you EE03. Yes, Dr. Sekula & Jannetta are at Allegheny General Hospital in Pittsburgh, PA. Dr. Jannetta is on sabbatical. Dr. Sekula has worked along with Dr. Jannetta for the past 3 years. It is my understanding that Dr. Sekula was handpicked by Dr. Jannetta to eventually be the one replacing him.

My incision is only 1 1/2 inches...very little hair was shaved off...& it shows the skills of Dr. Sekula.

[Doodle bug7]

You are very fortunate to have a positive outcome of an MVD.
Stay well and check in sometimes to let us know how you are doing. Good Luck! Doodle bug7

[ladynbraids]

Thank you Doodle bug7!

There is so much that is still unknown about Trigeminal Neuralgia. One thing that is known is that it is a progressive affliction…it gets worse over the years. The research use to say that they believe a MVD surgery was likely to be more successful if done within the first 7 years of being diagnosed; however at the TNA conference held in Dearborn, MI, in 2008, new research was presented that changed that 7 years to 3 years.

My MVD was 15 days ago in Pittsburgh after having typical TN with shocks for three years. Since surgery, I have not had any shocks and have been off all TN meds since 5 days following surgery. Today, as I’m still resting & recovering from the MVD surgery I have to ask myself….Why did I wait 3 years to have this surgery???? Nobody wants to ever have to have this surgery…I think deep down inside we continue to hope that the TN will go away, but it’s very highly likely that it’s not going anywhere. I believe my biggest hurdle was that I was terrified to have this done. Instead I continued on Trileptal that kept going up and up in dosage until for the last six months before surgery, I was a walking zombie…I could no longer drive…I had no quality of life left at 52 years young!!

My hope is that somebody else might learn from all my mistakes with TN. Yes, MVD surgery is rough, but each day following MVD surgery will get better. It’s a small bump in your life that you have to cross in order to get that artery or blood vessel padded away from your Trigeminal Nerve. In the end, it will be so worth it if it is successful.

Each person is different with how TN is affecting their life. In my opinion, I don’t think there has been enough research done yet on how long it takes the Trigeminal Nerve to become PERMANENTLY damaged. It is also thought that over time that typical TN becomes atypical TN. Time can count with this affliction.

Study the research, Educate yourself…you are your best advocate when it comes to making important medical decisions. My neurologist wanted me to have Gamma Knife done as my first procedure…thank goodness my knowledge I had gained made me cancel the surgery at the very last moment. I knew from day one of being diagnosed with TN that my journey would lead me to having MVD surgery. It’s the only nondestructive procedure.

My biggest regret is that I put off having MVD surgery for 3 years. I read so much over the three years on MVD surgery, and it seems to be what everybody thinks after it’s over. I wasted a couple of years of my life that I can never get back, and it is looking like I am one lucky girl that I didn’t have any permanent damage done to the nerve. My advice to anybody with typical TN…get the MVD surgery done as soon as you can with a top notch neurosurgeon. I didn’t listen to the people that said they wish they would have done it years earlier although 3 years is a lot sooner than a lot of people that I have read. I’ve progressed enough in my recovery now that I can finally say that “if” I would have to go through another MVD, I would do it if the chances were high that it could fix me again.

Hoping today finds my TN family as pain free as possible,
Judy

[Bassetcase]

Hi Judy, you certainly seem to have a wealth of information for us and I appreciate you sharing your experience in such detail. Is there any recommendation on having this surgery done for Atypical TN? My Neuro at Vanderbilt in Nashville wanted to set me up with a surgeon 2 years ago and I blew him off because I did not (and still don't) feel like my pain is yet bad enough for surgery. Was that a mistake on my part? Granted, my episodes have increased in frequency, and I have increased dosage of Carbatrol - but still very low dosage compared to others on here - 200 mg. at bed time. Until about 6 weeks ago I was only taking the meds when I had an episode, but decided to go for more of a preventive approach when episodes became 3-4 days a week. I had another episode yesterdy and took another Carbatrol mid day.

Any thoughts on this?

Good Luck for continued recovery,
Rhonda

[ladynbraids]

Hi Rhonda,

Atypical TN is an area that I haven't researched extensively since that didn't pertain to me. All I know from the things that I have read is that MVD surgery has the highest success rate with typical TN. I seem to recall recently a surgery that was recommended for ATN, but I can't recall which procedure it was. With ATN, I would really research before having any surgery...you could end up with pain far worse than it is now.

All my best in finding what will work the best for you,

Judy

[EE03]

Someone else posted this link to the LivingwithTN.org site that has a lengthy(2 hr.) video of Dr. Casey discussing treatments, etc., for TN. I watched it the other day and its well worth viewing. You might want to take the time to see it as it may give you some more insight into what the current thinking is regarding atypical TN(Type 2 TN is what I'm referring to).

Heres the link http://www.livingwithtn.org/video/as...eries-with-ken

[ladynbraids]

I met Dr. Casey at the 2008 TNA conference in Dearborn. He was the neurosurgeon I wanted to have my recent MVD with but my insurance didn't cover him, so I had it done in Pittsburgh instead.

I watched his video today and it is EXCELLENT! I see where the experts are now recommending the MVD surgery for atypical TN. That is great news for everybody with atypical TN. I would tend to think that the success rate would be a little lower in comparison to typical TN though.

All my best,

Judy

[Bassetcase]

Thanks to both of you for the new information - I started to watch the video, but will have to finish it later since I am at work. I 'm sure it will be very informative.

Thanks again!