Has anyone had recent surgery

[betty]

Hello,
My name is Betty. I just found this site. On Dec 4th I had a meningioma laminectomy with resection at T1/C7 that had calcified to the dura. . The tumor was in the spinal cord and thank God was benign. I have been home a week. I have lots of pain and muscle spasms that the vicadin and flexoril don't seem to be helping that much. Just had stitches out yesterday. Dr just changed me to Norco 10/325 of which I take 2 every 6 hours except when I'm sleeping. Any solutions that work for dry moth?
I had the best spinal cord surgeon, Dr Mkrdichian from CINN
(Chicago Ins for Nerusurgery).
I also have horrible itching all over and now am on benadryl and
lomitron. They think the rash is a candida from the antibiotics that were in the IV drip. I will need a total detox after all this!
My 2 beautiful Whippets are wondering why their "Mom" is now screaming ouuch a lot. The pain in the bone of my left shoulder is so bad. Yup, all pain is at least a 10, you don't need to ask:>)

There is so little on the web about these rare tumors. I hope to make friends here.

PS: I am still trying to figure out how to post without posting a subject or poll questions.

[peilynne]

Hi Betty,
So happy for you that you found us, come here often, this site really helped me. My doctor prescribed baclofen for muscle spasms.
For dry mouth I really don't know.I'm on so many medications I really don't know which one is causing dry mouth. I'm on slow release morphine/lyrica/ and nortriptylene for pain. Lyrica really improved my pain levels.
I'm very happy for you that your surgery went well.
Take care,
Lynne

[Tmasgio]

The pain should get better with time. You have at least 24 months of healing to do so be patient. Is the pain neurpain (itching,burning,electric like) or is it muscular. There is a ton of medications out there and you will need to find the right cocktail to make your comfortable. Time does not seem to move fast enough in the early phases. The dry mouth is there I am guessing because of the meds. I had that for at least 8 weeks and as I tapered down the meds it went away. Try to drink plenty of fluids. Is there any other troubles that you are having? Loss of sensation (numbness), balance.. If so PT helps alot in the early recovery to gain strength and mobility.

Keep your chin up!

Tony

[drummer904]

I found chewing gum helps the dry mouth, i had surgery 2 weeks ago to untether my cord and the meds gave me major dry mouth.

[tc]

My periodontist recommended this for dry mouth: "Biotene Dry Mouth Gum" (no prescription required). Biotene also makes a mouthwash and toothpaste for this problem. I haven't tried any of it yet. Here's a link to their website, specifically, the page that lists all the prescriptions that can cause dry mouth.
www.laclede.com/learn/medlist.asp
Teresa

[BETTY B]

Thanks everyone for the suggestions. I am starting Amrix, time released muscle relaxor tomorrow and just started Norco 10/325 a couple days ago. The pain is deep muscular and sharp. It previously in the hospital was electric, ripping and burning. Once the tape came off and stitches out that helped somewhat.Though the incision is in the middle at the t1, my pain now is sharpest in my neck and outer shoulder.
Today 2 weeks since surgery I made a "what I can do list" compared to the few days after surgery. The littlest things seem like an accomplishment of grand proportions; for example, going to the bathroom alone without needing hubby to help with the process! I am so grateful for God's strength. Today I did a word study on strength. I speak many positive scriptures and thoughts to myself. I just haven't kicked the "scream first" response to pain & spasms!

Is anyone else from Chicago? CINN is where I had my surgery. It is Chicago Institute for Neuro Surgery. This is all they do. Dr Mkrdichian said these tumors are rare, but not to me. He has done over a 1,000 spinal cord tumors. My daughter in law works at the hospital and she mentioned my MRI results to the Dr and he said call and we'll get her right in. From the MRI to surgery was only 2 weeks.
It's all about baby steps.
Have a good night. Betty

[Day]

Hello Betty!!!!!

So glad you found us ~ so sorry you had a need to.

I too had a benign meningiona tumor (C6-T-2) removed this summer June 10. I spent all of June in the Hospital and then part of July with a second surgery to track down infection July 6. Mine was not calcified or problematic other than it had crushed my cord over a rather large section. I spent a lot of time in Physical Rehab learning to walk again, use my arms, retrain bladder and bowel, etc ~ ya know the fun stuff. My symptoms were really advanced before I received the correct diagnosis.

Yes, you are in pain right now! IT WILL GET BETTER! Take it slow and don't try to conquer the world in one day (that's my frequent mistake).

One thing you will learn by hanging around this forum is that even though we are all survivors of SCTs no two cases are identical. So what works for one might not work for another. Having said that...here's my unoffical "two cents" worth.

I had muscle spasms that would throw me backwards when I tried to walk - muscle relaxants helped somewhat. Then after returning home and getting into a more normal routine (doing more) I began to experience very deep, sharp, painful, muscle pain on my right side thoracic area that the muscle relaxants were just not helping. The pain was deep, and sharp, yet it hurt to touch the skin in these areas. When this would kick in I would absolutely scream loud enough to wake the dead. About the same time this developed I was given an additional diagnosis of Trigeminal Neuralgia (problem with 5th cranial nerve ~ think pain ~ lots). Anyhow, the meds they gave me for this ~ anti convulsive type stuff ~ made the other stuff go away! It's worth mentioning to your Doctor....chances are he/she doesn't have a clue as to how to care for you post-op (unless you are blessed with one who has experience). I don't know what causes my painful spasms. I just know it's terrible, and tegretol, and topamax make it go away.

Am I sure? Yeah buddy ~ I have accidentally forgotten to take meds as I try to keep up with my family and it's not long before the TN or the weird deep muscle spasms pain rocks my world again! I do take a low dose of everything so there is hope that maybe, just maybe I won't need it later...at least for the muscle pain on the right side of my body. The old bod just needs a little more time.

You mentioned antibiotics, did they set it up through a pic-line? They did that to me and it made my arm and chest feel funny for a few days.

Your right about your system needing a little help after a hospital stay...the antibiotics can be harsh on your system. What I decided to do to help git rid of the candida was to take large doses of Acidophilus. You can buy it just about anywhere and it comes in capsule form so your not trying to eat cartons of yogurt just to replenish your natural flora in your stomach. If the rash....has spread to the nether-regions....by all means have your Doc write you a script for Diflucon (sp?) one of those one pill will kill it type things....then take tons of Acidophilus!!!!

Another helpful thing I am trying is Fish oil capsules with omega 3 (we get too much omega 6 in our U.S. diet/ we need more omega 3 to counteract this) however, if you have had your gall bladder removed as I have you will need to take "Cholacol 2425" (Bile Salts) to relace what your gall bladder used to do (help out liver and break down oils and fats). You can find this at any good health food store.

Sorry to write a book ~ just got excitied to find someone who had the same type tumor as I had (meningiomas are a common brain tumor and an uncommon spinal cord tumor).

Finally, find a good Family Physician you trust and communicate...please don't do what I did and ignore symptoms....talk! If your Physician is unwilling to listen, learn about your condition, or keep seeking ways to help you...find someone else!!!!!

God Bless and Merry Christmas!
Day

[betty b]

Hi Day,
I loved the book you wrote!! Thanks for all the good info. This morning I woke up with that sharp, deep, screaming pain in my left shoulder bone area. Being muscle was cut at the incision site all kinds of pain from different areas rear their ugly heads! As we all know, mornings aren"t easy.

Is anyone able to tell me how to reply or post easily? Do people on this loop ever reply directly to anothers personal e mail or phone numbers?

Today I started the Amrix 15mg ER, muscle relaxant ($50!) co pay. It better work. Also took 2 -10/325 Norco, pain med. Hey just realized It's been about 90 minutes since taking both and they have kicked in. Whoopee!!

Have a great day,
Betty from Chicago

[Tmasgio]

Betty,
I tried the Amrix and it did work for awhile and yes there is no generic but I did get coupons from my Pain Management Doctor. You may want to see if they have them as well. It was 25.00 off and I only paid 25.00 out of pocket. The other suggestions I can make is that when you feel good STRETCH as much as possible. Muscle Spasticity can be controlled and it is good to start in the beginning to keep your muscles lengthen. Alot of inactivity with a Spinal Cord injury can lead to bad spasticity. So try to move when you can and keep active and positive. You will feel better as the month's go on. Really you will!

Keep fighting and never give up!

Tony

[chickiet]

Dec 19, 2008 8:01:04 GMT -6 @betty b said:

Is anyone able to tell me how to reply or post easily? Do people on this loop ever reply directly to anothers personal e mail or phone numbers?

Betty from Chicago

The way to start a new post is from the main page of the General Forum. In the upper right / top of that section there are three things you can select from - one is to mark as read, the middle is for a new thread, and the last is for a new poll. Click on the middle one (new thread) and you are up and running.

To reply, go to that same area (upper right) on the message. There are again three things to select from - this time it's "reply," "send topic to friend," or "print." Click on "reply" and that's it.

Hope this helps,
Chris