Need your input please: MVD Risks not listed + injury to back post MVD

Hi everyone! I've had MVD side effects that I dont see in any MVD risks websites. Memory loss, and Processing and Communication issues. Do any of you have those side effects? I have double vision, but thats noted in most MVD pages.

Also, Before my MVD my back was fine. Post-op, while still in the hospital, my leg was in pain, that kept getting worse and worse. In the ICU, they thought it was a gait issue. It turned out I had a severly herniated disc. I'm trying to fing the link between the MVD and it causing a herniated disk. Any ideas or knowladge on how this could happen?

Thank you!

Sara

My peace to you.

Hi Sara,

I don't believe their could be any correlation between the disc herniation and the MVD. Probably a coincidence. I have had a disc herniation, but with physical therapy was able to recover and did not need any surgeries.

Yes I'm having memory problems, however, I also have fibromyalgia so I thought it was the fibro fog. But I did notice problems with my short term memory.

I am also having some problems with double-vision but I thought that was due to the Lyrica. ???

Hope you feel better,

Kim B.

Well, it may be possible if you had a disk problem before surgery and it wasn't bad enough to bother you, that the turning and transferring could have aggravated it, but it's a long shot.

I've have symptoms also that I have not seen posted here, but I haven't read everything. I have several surgeries for things other than TN and never had a problem with intubation, but within a couple days (Iwas probably in a drug fog before to not notice), but I couldn't stick my tongue out, and it really hurt on one side. I attributed it to the positioning I was in during surgery and the tube pulling on my tongue. I developed severe TMJ, unable to open my month normally for a looong time, but with time it mostly got back to normal. I also have fuzzy brain, forgetfulness (but was also going off hormones for a year and a half...back on now the past two months, still forgetful). I still take a small amount of one medication or another when TN symptoms flair ( the "minor" symptoms, not the electrical shocks), so that could cause my fuzziness, though at the small dose I'm on, it didn't pre-op.

I'm still not back to real work, have had several seasonal low stress jobs since 2009 MVD. I know my husband doesn't understand why I'm not looking for the high stress jobs.

Take care and take time. Write your questions down before your Dr. appt, I can't stress this enough. kg

Thank you both! I will make sure I write the questions down, I forget sometimes, but have a question little black note book for all of my Dr's. For the very serious hernia, post MVD, I could only imagine it being a positional thing during surgery, or getting off and on tables, being dropped(ha).... All I know was it was not herniated pre MVD and was directly after. I did tweak my back a bit in Oct of 2009- I tried going back to work, after three months off for my new TN diagnosis in July 2009. For a work trip, I bent sideways to take off my shoe in the security line, and could tell my back strained. This wouldn't have happened with the TN narcotics and anticonvulsants I was on. They make you have lack of coordination, weaken your muscles, and I probably would have taken my shoe off the correct way, if I weren't so drugged up, in a long line of restless people at the airport. After the trip I went to my Primary, got some muscle relaxors- man that was not a good mental help on top of the TN meds, but was nice for the back. I also ended up being allergic to the Tegrotal and Triliptal.

So, with my MVD 4 months later, I may have been less sturdy in my back, making is easier to herniate. I asked my Neurosurgeon, after my MVD, why the herniation happend directly after (when I noticed it, in ICU, where they thought it was a gait issue, and with continued and worsening leg pain post mvd. My mom was with me for 3 weeks post op, and watched this happen. She had to dress me. At that point, PT thought my back was out of alignment, (or when I went to the ER due to pain, they thought it was constipation!).

Right when my mom left- 3 weeks post MVD, with the pain so wretched, the pt brain team finally had me see an ortho PT who diagnosed me with a high probability of a hernia. A couple weeks later an MRI proved a severe herniation. The Neurosurgeon said its impossiable to tell when it happend, could have been in my sleep. Again, I didn't have pain pre MVD, and did right after. The first spine surgery was a total mess, made things much worse, failed, and I had a second hernia in the same spot in July, which led to an urgent surgery #2 in August. I never felt an acute herniation in Feb, as I did the second time in Jule. So, it had to have happened when I was really out of it, or under anesthesia.

Kim, when your disc herniated, did you know immediatly when it happened? Or feel it coming?

KG, I had a boyfriend, and now a current friend (My life long best friend) who just doesn't get it, and I finally had to stop using my energy to prove to them the power of this TN (and now badly injured back). Some people lack empathy, until it happens to them. I've heard so many things that brought me to tears, because I was (1) frustrated that my loves one(s) didn't get it, or thought I was milking the situation/ being lazy. (2) It made me question if I was a failure. (3) why couldn't they just support me instead of being angry and judgemental. My "best friend" most recently e-mailed me, Iknow there people who are sicker than you that atleast go outside and sit on bench. What exacty are you doing and what are these 'responabilities' you have..." I got angry, but not as angry as the first time she got very rudly mad at me for not being able to go out and party, and accused me of being a sour, narcotic addicted crazy person that was ruining her social life because people where asking her how I was, and she was sick of it." She will never get it, is selfish and has no idea about anything I've gone through. (She's not the smartest tool in many sheds as well). Since we've been friends since we were 8, I've had to do a lot of thinking on how to handle her. She is also friends with many of my friends. So I'm backing off for now, and setting the rules, such as, "On days or nights that I feel well, I'll call you to see if you are available to get together, if not, cool, we will try again." I had to tell her I can not to sporadic things, and I have to take things hour by hour. Then I'm out of the "Maybe I can" get together and probably let people down.

Meanwhile, the "Responsabilities" were: I was in wretched back pain, working hard on disability, and trying to balance life with healing, having my 5 year old nephew stay the night, for my brothers birthday, a huge step, I was not ready for, but hes my little critter, and unbelievably chill and easy to watch. I need to work to keep my family feeling good, as they do me.

My social life and work has had to go, for now. In the long run of life, a couple or a few years of being the patient, will show to be a very short amount of time.

It's amazing wht comes out of people, when you suddenly have a 180 in your life as the sick person. The friend or family member gets terrified they have lost you. The don't know how to handle it, and think pushing and pushing is the way to show care. It took me over a year to realize this with my big brother. (I'm 31). He was angry, or saying, just go back to work, etc... it took him a long time to digest I was sick. It took me a long time to digest that he loved me so much, and was so scared, he couldn't handle it the right way. He eventually, one year post TN diagnosis, went to talk to a family friend who is a therapist to help him learn how to handle me. This was on his own, which is huge, becuase he is a big guy that doesn't show much emotion. He has opened up, calmed down, and let me be me. I had to work on not overwhelming him by e-mailing him long e-mails about how I was, or even short e-mails on a cool coupon. Things are better than ever now.

Ask your husband what is bothering him, what you can do to help, tell him you are listening to him and respect him. When I said this to my brother, it helped so much. He needed to know he could help, when he was lost on what to do.

PS. I'm scouring for information on the MVD to hernia, for disability reasons, to keep my many illnesses and 3 major surgeries linked together since July 2009.