Update from Carol - not a pretty picture

[Guest guest]

Dear Group,

Hi, I feel like I am writing a dreary novel of what can and should not

happen! I do have good news, even though both my Dr. and Surgeon thought that

I

had tongue cancer, the biopsy was benign .......BUT I went in to have my

stitches taken out - they were really hurting. Actually, nothing has hurt this

bad in a very long time. The incision is at least 1-1/2 " long on the front

side of my tongue, two 1/4 " slits on top and bottom with a big whole over 1/2

way thru my tongue. I had my brother tell me to quit nursing it, because his

stitches from surgery healed in 4 days! WELL, mine did NOT heal, I still

have a big hole in my tongue! It affects my eating, talking, etc. By night

time I am getting referred pain thru my neck and ears! The ENT who did the

surgery could not get me out of his office fast enough -gave me Rx for

Lidocaine

2% and liquid Lortabs- and sent me to my Internist. I went there, and he

was extremely upset that the surgeon could not complete the job. They

recommended Hyperbaric treatment for wound healing. I am waiting to hear the

Infection Disease Specialist who does this kind of treatment. And the hole

just

seems to be bigger and deeper. I try not to talk, or eat except with a straw.

Guess it can sound funny, unless you are in my shoes. But I have never been

so frustrated in my life. I told the ENT/Surgeon that I take prednisone, MTX

and Enbrel, and specifically asked if that would be a problem. He said NO!

Now he says that these meds are why it is not healing. Does this mean I

will have a hole in my tongue for the rest of my life? What do I do?

Help,

Carol M. in CA

[Guest guest]

Carol, I'm glad to hear that the biopsy came out benign, that is

great news! But, that is awful what your going through now, how

terrible. Do go off all those meds, until it heals. i will keep you

in my prayers, Tawny

> Dear Group,

> Hi, I feel like I am writing a dreary novel of what can and should

not

> happen! I do have good news, even though both my Dr. and Surgeon

thought that I

> had tongue cancer, the biopsy was benign .......BUT I went in to

have my

> stitches taken out - they were really hurting. Actually, nothing

has hurt this

> bad in a very long time. The incision is at least 1-1/2 " long on

the front

> side of my tongue, two 1/4 " slits on top and bottom with a big

whole over 1/2

> way thru my tongue. I had my brother tell me to quit nursing it,

because his

> stitches from surgery healed in 4 days! WELL, mine did NOT heal,

I still

> have a big hole in my tongue! It affects my eating, talking,

etc. By night

> time I am getting referred pain thru my neck and ears! The ENT

who did the

> surgery could not get me out of his office fast enough -gave me Rx

for Lidocaine

> 2% and liquid Lortabs- and sent me to my Internist. I went there,

and he

> was extremely upset that the surgeon could not complete the job.

They

> recommended Hyperbaric treatment for wound healing. I am waiting

to hear the

> Infection Disease Specialist who does this kind of treatment. And

the hole just

> seems to be bigger and deeper. I try not to talk, or eat except

with a straw.

> Guess it can sound funny, unless you are in my shoes. But I have

never been

> so frustrated in my life. I told the ENT/Surgeon that I take

prednisone, MTX

> and Enbrel, and specifically asked if that would be a problem. He

said NO!

> Now he says that these meds are why it is not healing. Does this

mean I

> will have a hole in my tongue for the rest of my life? What do I

do?

> Help,

> Carol M. in CA

>

>

>

[Guest guest]

Dear ,

Thank you for your concern. I am extremely frustrated about the whole

thing, and I am a very mild mannered person who is starting to get angry! Do

you

know the surgeon left the knots in my tongue edges? These are causing ugly

white sores. My Internist has contacted my Rheumy(he is 2 hours away in Palo

Alto) to verify and confirm treatment. I have waited 2 days for the

infectious disease specialist to contact me! Because the ID Dr works out of

the

hospital I cannot call or contact him. I feel like someone made a mistake, and

no one wants to help me? I don't know what else to do. My husband took me

for a ride yesterday, just to get me out of the house, I was getting so " down "

and weak. I am starting Insure today, hopefully that will give me some

substance or energy. Thanks for your concern!

Gentle Hugs,

Carol M. in CA

[Guest guest]

Carol, I'm very happy to hear that the tissue was benign, but distressed

to learn that your recovery is not going well. That's sounds absolutely

awful.

Have you contacted your rheumatologist? I would call and explain the

situation and ask for advice about your RA meds.

If your tongue is not healing, there is a serious risk of infection,

especially on those meds. I hope you will be seeing the infectious

disease specialist very soon.

Good luck!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Update from Carol - not a pretty picture

>

> Dear Group,

> Hi, I feel like I am writing a dreary novel of what can and should not

> happen! I do have good news, even though both my Dr. and Surgeon

thought that I

> had tongue cancer, the biopsy was benign .......BUT I went in to

have my

> stitches taken out - they were really hurting. Actually, nothing has

hurt this

> bad in a very long time. The incision is at least 1-1/2 " long on the

front

> side of my tongue, two 1/4 " slits on top and bottom with a big whole

over 1/2

> way thru my tongue. I had my brother tell me to quit nursing it,

because his

> stitches from surgery healed in 4 days! WELL, mine did NOT heal, I

still

> have a big hole in my tongue! It affects my eating, talking, etc.

By night

> time I am getting referred pain thru my neck and ears! The ENT who

did the

> surgery could not get me out of his office fast enough -gave me Rx

for Lidocaine

> 2% and liquid Lortabs- and sent me to my Internist. I went there,

and he

> was extremely upset that the surgeon could not complete the job.

They

> recommended Hyperbaric treatment for wound healing. I am waiting to

hear the

> Infection Disease Specialist who does this kind of treatment. And

the hole just

> seems to be bigger and deeper. I try not to talk, or eat except with

a straw.

> Guess it can sound funny, unless you are in my shoes. But I have

never been

> so frustrated in my life. I told the ENT/Surgeon that I take

prednisone, MTX

> and Enbrel, and specifically asked if that would be a problem. He

said NO!

> Now he says that these meds are why it is not healing. Does this

mean I

> will have a hole in my tongue for the rest of my life? What do I do?

> Help,

> Carol M. in CA

[Guest guest]

Carol-

Are you diabetic? I'm so sorry to hear about your healing problem. An

infectious disease doc will be great help if the problem is an infection. Is

it? Cary

[Guest guest]

How awful Carol. I know how painful a tiny blister is on the tongue and

can¹t imagine the pain you are in. I¹m so glad the biopsy was negative, but

wish the healing was quicker. I hope the infectious doctor can help your

healing.

a

> Dear Group,

> Hi, I feel like I am writing a dreary novel of what can and should not

> happen! I do have good news, even though both my Dr. and Surgeon thought

> that I

> had tongue cancer, the biopsy was benign .......BUT I went in to have my

> stitches taken out - they were really hurting. Actually, nothing has hurt

> this

> bad in a very long time. The incision is at least 1-1/2 " long on the front

> side of my tongue, two 1/4 " slits on top and bottom with a big whole over 1/2

> way thru my tongue. I had my brother tell me to quit nursing it, because his

> stitches from surgery healed in 4 days! WELL, mine did NOT heal, I still

> have a big hole in my tongue! It affects my eating, talking, etc. By night

> time I am getting referred pain thru my neck and ears! The ENT who did the

> surgery could not get me out of his office fast enough -gave me Rx for

> Lidocaine

> 2% and liquid Lortabs- and sent me to my Internist. I went there, and he

> was extremely upset that the surgeon could not complete the job. They

> recommended Hyperbaric treatment for wound healing. I am waiting to hear the

> Infection Disease Specialist who does this kind of treatment. And the hole

> just

> seems to be bigger and deeper. I try not to talk, or eat except with a

> straw.

> Guess it can sound funny, unless you are in my shoes. But I have never been

> so frustrated in my life. I told the ENT/Surgeon that I take prednisone, MTX

> and Enbrel, and specifically asked if that would be a problem. He said NO!

> Now he says that these meds are why it is not healing. Does this mean I

> will have a hole in my tongue for the rest of my life? What do I do?

> Help,

> Carol M. in CA

>

>

>