symptoms

I was diagnosed with chiari II in may08. My symtoms (symptoms) are severe arm pain, mostly at night when i try to sleep.
i have neck pain, loss of strength in my arms and hands. I don't have headaches like some do. I have seen two NS
and am considering surgery. I am 56 and very scared. I was just wondering if anyone else has the symtoms (symptoms)?

[rozia]

you must see a NS  that knows this diease . There are not any experts in TN. But on e in Arkansas and all over the US. Let me know if you need anything further . The dr,is in Fort Smith . Dr. Capocelli

[selmaS]

trying to sleep is the worst.I do have the headaches....loss of strenght also. I fell and needed surgery on my right knee...y r u considering surgery, was it reccommended by ur NS?
Be sure to see a chiari specialist...any NS will not do!!

What other symptoms do u have??

I hope all goes well.
Godspeed
"selma"

[aiMelissa]

Yes I have those symptoms and others as well.  I have decided to have surgery because I really suffer.  It's not a decision to be taken lightly but when you suffer long enough, it's easier to make (for me at least).  :-)

Good luck to you

[sissy114]

thanks for the advice, i go for consult friday with ns, but have decided not to do surgery
unless i go to chiari specialist, checking on those now.

[sissy114]

as for as symtoms (symptoms), i'm lucky. i don't have headaches , just bad neck , shoulder, and
really bad arm pain. biggest problem is i can't sleep at night. as soon as i lie down
my arms start hurting so i toss and turn all night. pain with sleep meds heip some.
loss of arm strenght is getting worse. one ns advised me to wait on surgery, one  i will
see on friday, but have decided to take advice and wait till i can see a specialist.
have you considered surgery?

[sissy114]

honey, i pray everything goes well for you. i am also getting very tired of living with pain
and not sure i want to live this way from now on.

[selmaS]

surgery  is a last resort...only when I feel I have the right dr! I tried sleeping pills, they did not help! I am alwaays tired.If I do nething one day the next couple I can't do a thing....
just calling drs and getting ahold of them is  a full time job! I don't think we shold have to wait a wk for a return call from dr office...it's not like it's the dr calling back.
Good luck Friday, I will b thinking of u , while I get my U/S of my thyroid.

Godspeed
"selma"

[Shane99]

Actually there are 2 Chiari specialists in Tennessee.

Dr. Lewis Harris
2100 Clinch Ave
Knoxville TN
[phone]

Karl Hampf, MD
2410 Patterson St Ste 500,
Nashville, TN 37203
615-327-9543

Dr Hampf is my doctor and I like him, but you are probably a little closer to Knoxville.

[sissy114]

Thanks for the info. i checked out the doc. that you said was in knoxville. he happens to be in the same practice as the NS i will see friday, you say your dr. is in nashville?
have you had the surgery or thinking about it? i'm only 3 1/2 hrs from nashville. do you
how many chiari surgeries your dr. has done?

thanks again!!

[sissy114]

Hey,

After reading more of the things that peoplle were writing on this site, i learned that you
have had the surgery. please let me know how it went for you and how you are now.




sissy114

[Shane99]

Well, I did have the surgery - both for Chiari and Syringomyelia. They caught mine very late. I had a 20mm herniation and was already showing signs of paralysis. So, I'm not doing as well as I'd have hoped, but I'm glad I had the operation. I was on the cusp of serious problems. I still am having some paralysis - in my right hand and left leg mostly and I'm still suffering from dizzy spells.

It can all be very frustrating, but I could be a lot worse. I had a bad dream a few nights ago that I was paralysed from the waist down - that's very scary when you've just had neurosurgery.

I'm not sure how many Chiari operations Dr Hampf or Dr. Harris have performed, but they are listed as the only 2 specialist that I can find in Tennessee. I like Dr Hampf very well. I'm having problems, but they aren't from anything he did or didn't do. Mine are just from getting caught so late.

[sissy114]

Thanks for getting back to me. I hope things will get better for you. Keep us posted.
I went to Dr. Snyder fri. He is in the same practice as Dr. Harris. but said that dr. Harris
is a pediactric chiari specialist. being in the same practice still doesn't  make him a
specialist. my chiari is about 8-9 mm. i hear that the malformation won't get worse, only
the symtoms (symptoms) might. Have you ever been told this?

[Shane99]

No, the malformation can continue to get worse. Over time, the herniation can get larger. From now on, you'll need to get MRI's every so often to make sure it doesn't continue to grow - even if you've had the surgery. It can still grow. The point of surgery is it gives the brain room to grow in a place other than the spinal column.

8mm is a pretty good sized hernation. That seems to be around when doctors start talking surgery. Not always, but it seems to be the average from what I've researched.

Have they mentioned Syringomyelia? That's the issues with the spinal cord. In a lot of ways, Syringomyelia is more dangerous than the Chiari that can cause it.

There is no cure for Chiari, just ways to fight the symptoms.You need to maybe see Dr Hampf, if Dr Harris won't see you.

[sissy114]

I so not have a Syringomyelia, I think that's why the 1st NS said that he would not do the
surgery if he were me but he also said that it would not get worse but symptons could.
I really don't know what to do. I have had a few good nights this past week but i know that it probably won't last. I may check into seeing Dr. Hampf since he is a specialist.
Thank again and please keep me posted on how you are doing.

[Shane99]

Well, I don't want to argue against a neurosurgeon :), but I think it would be a good idea to have a second opinion. You're what, 4 hours from Nashville? That's not a crazy drive for something this important.

I'm glad that you don't have a syrinx, but you still need to keep on top of all this with regular MRI's. Syringomyelia can show up later. It's often caused by Chiari.

Good luck.

[sissy114]

I have already decided to get yet a 3rd opinion. I called Dr. Hampf's office yesterday and
his nurse told me to send all my reports and he would look at them and decide if he
needed to see me, and if so would call me for an appt. I really appreciate you telling me
about him. It makes me feel better to know that you have used him and know that he is
a specialist in this field.

I may have ask you before, did you have problems with neck, shoulder and arm pain?
This is the only problems i'm having and for the last few nights, i've done really well.
This only confuses me and makes me wonder if i should do the surgery. maybe Dr. Hampf will help me make the right choice.        Thank again!!!!!!!!!

[Shane99]

It never hurts to get several opinions when something as serious as Chiari is at stake. Chiari can lead to some pretty severe problems. Someone described it on these boards as; Chiari isn't necessarily considered life threatening, but it is life changing. You may not need surgery yet. Or ever for that matter. There are certain things that a good doctor can do or prescribe that can help you with pain management and to help with getting around better. Especially with you not having syringomyelia. In some ways, that's the worse problem. However, you should always keep on top of this, because there is no cure. Even surgery just eleviates symptoms.

In fact, it's possible that your problems could be unrelated to the Chiari at all. I would think that would be highly coincidental, but it is possible. Pains in the neck, arm, and shoulder are often caused by spine issues, but if you don't have any syrinx, then it's possibly unconnected. Keep in mind I'm no expert, better to have it checked thoroughly.

Yes, I have neck, shoulder, and arm pain and mine's also not every night. But, often these kind of symptoms will start getting worse as the chiari grows. Keep in mind that there are certain meds or therapies that can slow it down. Neurosurgery should always be considered a last resort :).

[sissy114]

Just thought I'd let you know that I have an appt. with Dr. Hampf Oct.20th. My dr. sent
him all my reports last thurs. and they called me this morning to set up my appt. I have
thought about everything you have said and will not do the surgery unless he thinks that
it is really nescessary. Maybe he will try me on some meds 1st. the NS in Ms. put me on lyrica but didn't help much. Do you know if having the surgery, if you don't have a syrinx, can cause one?

                                                                             Thanks!!

[Shane99]

I wouldn't think it would cause syringomyelia. The surgery effectivelly releases the pressure going into the spinal cord. But I'm not a doctor :). I like to make sure I throw in that disclaimer every so often :).

[sissy114]

Thank you!!

[jenn6905]

what do u all feel

[sissy114]

Hey, I have had 2 MRI's and a CT scan. The chiari will show up on an mri, but la saw ordered the ct scan because it supposedly shows more. As for as symptoms, mine
are not as bad as others. I hace headaches occasionly, but my biggest problem is loss
of arm strength, neck, shoulder and extreme arm ache. Sometimes my arms hurt all
the time. sometimes only when i lie down at night so i can't rest. toss and turn all night.
I really suffer if i overdo, washcar, clean windows, etc. From all that i have read, there
are so many symtoms (symptoms) that can be caused by this.  

messed up, should be last NS i saw.  Not too good with typing!!!!!      Good Luck!!

[Ke2heart]

I had my surgery on june 15,2005.  I felt alot better but for the past 2 years have had alot of severe neck and back pain.  Before surgery i had what they called mini strokes 16 in 2 months time were you lose all feeling in arms and legs to where you drop things and fall alot.  I also have bulging discs and am at wits ends with this mess.  I have had therapy 2 times a week for 9 months no help.  Now my neurologist is giving me injections of botox and prednisone shots 14 every 3 months to help with the bobble head effect.  Doesnt help.  I am believe it or not a lot better than before but just tired of hurting all the time.  I was just told to file disability because of the headaches and pain.  I lost yet another job due to illness.

[selmaS]

Hi and Welcome.......I have not had surgery, but if u check the zipperheads thread u will find those that have....also we had someone ask about botox...I believe marileew....maybe you can tell her about the benefits u recieve from them.

I have had the falls...so it is possible to still get them after surgery.....well I guess I have to re write my future game plans again.

Glad to have u here!!
: )
"selma"