10 months post retro surgery and symptoms are back with a vengence :(

[scarriegirl]

hey all,

i i have not posted here since my first surgery nov. 17 2008.  I think i was so optomistic about having the first surgery go so easily and then landing back in the hospital dec 13 with a csf leak really threw me and i tried as hard as i could to feel normal again, and posting here was admitting i was not normal.  how silly!  well i finally was feeling normal well as normal as i could, in june.  i was actually hopeful again!  and then....
probably about a month ago the headaches and dizzy spells with the intensity of pre op came back, along with a nice dose of muscle spasms in my neck and head.  went to neuro and they are concerned about my dizziness and found that i had decreased facial nerve function.  that was about 2 weeks ago and it has only worsened.  MRI is monday so an answer is only a week away (neuro appt friday)
but i am fearing all sorts of things, like nfII,  scar tissue interfering with nerves, and who knows what else.  i know i need to wait for mri, but it's not easy!! 
symptoms include tinnitus so bad i have trouble hearing over it, dizziness and nasaeu sp? like i am motion sick,  spasms in my neck and scalp, headaches that wrap around and make my eyeballs tense, facial weakness, and most troubling dizziness in my sleep that wakes me up and makes me feel as if i am rolling out of my body.  this kind of feeling is what i felt when i first started having episodes and was misdiagnosed with panic disorder 10 years ago.  it ceased and i have felt nothing like it since. a month before surgery i had no vestibular function on the bad side and as a result had no post op balance problems as i had already adapted without even knowing!

well needless to say i'm pretty nervous about now! 

just coming back to what i know is a safe place for some support and maybe some similar stories? 

and sorry if i have typos all over the place as the tension makes it hard for me to read the monitor!

thanks for the input!

-
carrie

[Cheryl R]

Carrie,  I am sorry to hear of all this that is now going on.     It would be scary to have this again.            Are any of the symptoms on the other side now or on the same side as your surgery?              All I can say with my NF2 is that my very small tumor  seen on the other side  from my first took 3 years to slowly cause some symptoms.   It did not even show up until 2 years after my first surgery.        I am guessing this is not NF2 but of course can never say for sure.                         The first MRIs should have shown tumors on both sides if you are having this amount of problems now.                       Let us know how it goes and hope you get some answers.                     I wish I had answers for you!                       Cheryl R

[Jim Scott]

Hi, Carrie ~

No need to apologize for not posting lately and especially, for typos.  We all make them.  I read your post with no problem at all.  However, we do have a spell-check option now, so you can always fall back on that, whenever you feel you might need to. 

I'm very sorry to learn about these symptoms re-appearing after all this time.  I'm not a doctor and won't presume to venture even a guess as to the actual cause, but I hope and will pray that it isn't a re-growth or a manifestation of NF-2.  You're right in acknowledging that the upcoming MRI should help explain what's happening and I'll add that your fears of the 'unknown' are totally valid.  I hope you can find a way to relax a little bit until next week when you have the MRI scan and follow-up doctor consultation.  Meanwhile, know that you'll have a ton of people thinking of and praying for you, Carrie.  Many will be sending you good vibes and 'virtual' hugs in subsequent posts, I'm sure.  You're among friends here.

Jim     

[msmaggie]

I'm so sorry you are having such a hard time!  The dizziness, headaches, and muscle spasms sound unbearable.  I hope the drs. are able to figure out what the problem is. Admtting it is not a sign of weakness, but I do understand the need to feel normal . Please know that you will be in my prayers for relief from your pain now that I know about it. Keep us posted!
Priscilla

[scarriegirl]

Thanks guys for your support!

MRI tommorrow, so won't have any answers, but at least i will have the info to my docs. 

was reading in the headache forum about a pain specialist Dr Acquadro who happens, quite fortuitously to practice just a mile or two from me, and the hospital where he works, Carney in boston, is affiliated with my hospital Boston Medical, so perhaps he can be of some help, and my insurance will most likely cover it! 

waiting anxiously for my hearing aids (HOT PINK!)  to be done as they may possibly relieve some of my tinnitus, and will definitely give me directional hearing back.  I am thankful that my insurance is covering them.  With all this debate about healthcare, i am glad i live in a state that has already enforced universal health care.  I have had better care in the state system than many i know with private insurance.  MA really is a great place to live if you have to be sick. 

muscle spasms were pretty bad today and my howls of pain from a neck cramp in the shower brought my husband running.  Sometimes just yelling OUCH out loud does wonders  

I guess my biggest fear at this point is that they will find nothing and i will go back to feeling crazy like i did for all the years before diagnosis.  I know nothing sounds good sometimes...but when you are in pain with no explanation, then nothing is the worst word imaginable. 

for now, i am going to hear some live jazz and try to enjoy my night and not be too anxious. 

thanks again for your kind words and i will be checking in soon.

-Carrie

[yardtick]

Hi Carry,

I suffer from headaches, muscle spasms and facial pain since my surgery three years ago.  I am on drug therapy and started very intense physio therapy a month ago.  I find for me the range of motion exercises and the head and neck exercises have been helpful.  In the beginning I was very skeptical because I went home in way more pain than I went in with.  The icing on the cake for me is the deep massages along my left shoulder, neck, hairline, jaw, cheek, temple and the back of my head are heavenly.   After the initial feeling of deluxe Chinese torture I start to do deep breathing to relax, the massage feels wonderful.  At the end of it I am treated to a deliciously heated wrap on my shoulders and around my neck.  When I walk out into my awaiting chariot, I feel like melt butter. 

I still get terrible headaches and muscle spasms.  I have my medication which I continue to take, but I am able to breathe deeper and that helps me deal with the pain.  I bought the heat/ice packs and many nights I take one of the hot buggers to bed.  My physio therapist is going to show my husband how to massage my neck since I only have seven more visits.  I am going to fight the insurance compay for more time.  I feel I have made steady progress and if I stop in a couple of weeks I will slide back to were I was prior to starting the treatment.  I am seeing a pain Dr in Dec.  I am hoping to start 2010 painfree. 

Remember you are not crazy or alone.  You are experiencing pain and there is an explanation.  Good luck with the MRI and your Dr appointment.

Anne Marie
 

[scarriegirl]

thank you anne marie!
i will talk to my doc about massage.  my husband has been great with massage....but he does not know what will help me, so i will take your advice and have him learn from a masseuse.

i know we all suffer from post pain to some degree and i am thankful i can come here and get opinions from others who have suffered.  it means the world. 

i wish us all a painfree new year!!!

thanks again,
carrie

[suboo73]

Hi Carrie!

Hope your MRI is uneventful and you can find some answers to your symptoms/pain.
You will be in my thoughts and prayers today.

Sincerely,
Sue

[scarriegirl]

well,
MRI was uneventful...i don't know why lying in a tube for 45 minutes makes me so tired!

i snuck a peek at the screen on my way out and didn't see any glaring white spots...but i'm no radiologist...although i could probably do a decent job at this point!

waiting till friday. 

hopefuly i will get some answers then!

thanks again for all the kind workds.

-carrie